Re: SHARI] what works for one is not for everyone

January 11, 2008

Shari, I'm not trying to be opinionated as you suggest. Unfortunately I have seen many, many people on narcotics and yes, you may mentally become addicted and physically become addicted. What is interesting is in those that "had to have the pain pills" the relief they had when indeed they were given a "placebo." Very, very interesting. Obviously there are those out there that really felt relief from the narcotics and no relief from the placebo, but an interesting number of patients have been know to "fail" the test. Any comments on that? I'm just saying it's not good to be on the narcotics if you don't have to be. They can do a lot of harm to your body in the long run. I guess it's what one figures to be the lesser of the two evils. I am not down playing the role of medication to help Fibromyalgia. However, I have seen too much

of doctors giving out prescriptions because they don't know what else to do. Let's face it, medications can be good, or can complicate an already complicated autoimmune disease. I have a bit of medical knowledge (I have been through Human Anatomy/Physiology courses, Pathophysiology courses, Psychology courses, Nursing courses, Organic chemistry, etc..) on my way to a degree before life changing events this past year that lead to a huge change in my Fibromyalgia. My husband is a Licensed Physical Therapy Associate and has close contacts with Doctors in the Orthopedic realm. I was just recently diagnosed (December) with beginnings of Rheumatoid Arthritis as well. The pool suggestion, Lyrica, and the fact that narcotics don't work for Fibro pain came from a very knowledgeable Rheumatologist. Other information was suggested by my

family doctor who is above and beyond amazing! I don't just say things to say things. Sure, not everyone is the same, nor responds the same to the same treatments, but we all suffer from the same symptoms. I have many days that it takes a few hours to get out of bed and get motivated, so don't judge me. There are people with Fibro that do holistic care as well, and that works for them. I also mentioned pain specialists, and you made no remark on that. I only wrote what works for me! Plus I do know for a fact that UNLESS a Chiropractor puts you back in place AND gives you exercises to help your weak areas, it is nothing more than a quick fix, a band-aid on a wound so to say. I'm not saying Chiropractors are bad, and yes, they do help some people....I'm just saying make it a good Chiropractor, and those are the ones that give you exercises as well. Have you ever tried non weight

bearing strengthing exercises? Have you ever tried non-resistance exercise? Have you ever tried toning exercises with an exercise ball? Have you ever tried stretching exercises? Ever try Pilates or Yoga? To put all exercise in a box and label it as such is doing an extreme injustice to those who may be helped by different forms of such. Ice does help when it is pain from arthritis, so do cold compresses. Lavender oil has made a lot of people's migranes go away, and relax them into sleep. So smells bother you, that's ok, but it does work for a lot of other people. Peppermint oil has helped many with inflammation, however if you have high blood pressure, you need to be careful because it can raise your blood pressure. I'm glad you're involved with the different groups, but please don't find people necessarily opinionated because there are things you don't agree with. That seems to be

close minded, and not a help to anyone. Nadine "christina h." <christina-777@...> wrote: THIS IS SO TRUE ABOUT WHAT WORKS FOR ONE, MAY NOT WORK FOR SOMEONE ELSE AND IF IT DOES WORK, IT MAY LAST FOR A SHORT SEASON. I COULD NOT DO EXERCISE OR WATER AEROBICS. I PREFER HEAT IN CERTAIN AREAS AND ICE IN OTHERS. MASSAGE HELPS ME AND CHIROPRACTICERS DO NOT. WE ARE UNIQUELY MADE AND NONE ALIKE TO HAVE US BE

PUT INTO A COOKIE CUTTER WHEN TREATMENT IS CONCERNED. I WISH IT WAS THAT EASY.Shari Ferbert <shari23comcast (DOT) net> wrote: Nadine, Regarding your post about medications and treatments, I have to comment on a few things you said to remind people of the need to be open minded when it comes to treatments for FMS. I have tried things that I never thought I would, or didn’t really think would work, but needed to do it just so I could say I tried

everything. First, I am sorry you have so much pain and I am glad that you have found some things that work for you. I have degenerative arthritis everywhere which has resulted in 2 surgeries so far, along with my FMS, CFS and other random problems (i.e. meningitis 4 times) – so I know a lot about FMS pain, arthritis pain, surgery pain and headache pain. I know that you are trying to help and you have made some good points; but, using myself as an example, your steps 1-4 below do not represent a treatment regiment that is good for everyone. 1st trigger point massage… if I have a deep massage like that I would be in a flare for a week, not to mention the muscle spasms I get when being pressed

on like that. There are other types of gentle P/T and massage however, that do work for me. 2nd: Moist heat is good for some people, but ice works better for others because of potential swelling. If it can be tolerated, alternating heat and ice is good too. A heated, scented bag (rice bag, lavender, etc) makes me sick to my stomach. I do not tolerate many smells, and am allergic to some of the chemicals in the aroma therapy heat packs. 4th: You are right, water aerobics is good for many people, me included. But, many people cannot even get out of bed let alone go to a facility with a pool and get into a bathing suit to swim. I run an on-line FM support group, and we have had some very heated discussions about exercise. We came to the conclusion that some people just cannot tolerate exercise – period. Also, for people with CFS and ME, exercise can even be dangerous. Your comments about

medications come across as being very judgmental: “It in no way helps Fibromyalgia pain, only normal muscle pain after injury/surgery.” I take pain medication and it is what keeps me off of the couch. I personally take offense to that comment. Whitney made a very good point about the difference between being emotionally addicted and physically addicted to narcotics, and I am sure Dominie has something in her newsletter archives about the subject as well. The theory about the headaches being caused by tight muscles may be true for some people, but over half of the people with FMS suffer with migraines, which is a separate, diagnosable condition within the CSS spectrum of disorders of FMS. So please, don’t downplay the need for medication for migraines because you have your own theory of the origin of the pain. Chiropractic care helps a lot of people by doing more than just giving you exercises. Although

it is not my treatment of choice, one shouldn’t be discouraged from trying it – they may be surprised! I know you are trying to be supportive of others with your recommendations of treatments and theories, but please try not to be so opinionated. With FMS, there is more unknown than known – so it is very important for everyone to keep an open mind! Shari

Ferbert On Jan 8, 2008 2:00 PM, nadine redman <nlraccount > wrote:> I have pain too, along with arthritis in both knees, hands, fingers,> feet, and lower back. My neck and back, hips, and shoulders hurt on a daily> basis. Most days after being on my feet

at work my heels just scream at> me. I am on Lyrica, Effexor, Seroquil, Synthroid (did everyone know that> most people with Fibro have Thyroid issues?) I also have high BP so I take> Accupril for that. Anyway, my husband is a Physical Therapy Assistant, and> let me tell you what helps tremendously. There are a few things......1st is> a trigger point massage, hurts like hell, but afterwards your body feels> amazing. 2nd heat.....moist heat only. Homemade rice bags are great, and> so are the Chammomile and Lavender wraps from Kohls. 3rd a Paraffin wrap on> your hands and feet. You can find the Paraffin machines at Wal-Mart, Kohls,> Macys, and Meijer stores. That does wonders for hands that hurt and feet> that won't stop throbbing. 4th water aerobics or just walking around in a> heated swimming pool and doing exercises.> For the person on all the meds......wow. You can become very

addicted to> Vicodin, Percocet, etc.. Not to mention with that you build up a> tolerance. It in no way helps Fibromyalgia pain, only normal muscle pain> after injury/surgery. Why are you on Imitrex? For the headaches? Does it> help? Honestly most people with Fibro that have the extreme headaches is> because of the knotted muscles in our necks and upper backs and shoulders.> Try a good massage therapist. They would be a heck of a lot less expensive> than all the medication your on. Chiropractors only help if they give you> the exercises to strengthen the weak areas they keep working on. Yes, pain> is a daily part of all of our lives. Some days are worse than others. I> think a lot of times we expect to have a pain free existance, and well, that> isn't going to happen. I think accepting that has helped me out> tremendously because just accepting that has focused me to living with it>

and working with it. There are also doctors that are pain specialists that> some go to. I personally haven't been to one, but there is that help out> there too. Hang in there!!!!!!!!!!! We know how you feel!!!!> Nadine>>

Never miss a thing. Make your homepage.

January 11, 2008

Nadine,To me and I'm sure Shari as well, and anyone else not speaking up, you seem to have a lot of biased information. I know about placebo tests and I've been the guinea pig for many of them. I have Fibromyalgia (which makes me sick from heat + humidity, makes me sick from too much stress or when I push myself to do too much, makes me susceptible to coming down with weird ailments and makes me severely fatigued and nauseous; on top of severe Myofascial Pain, where I believe 75% or more of my severe pain originates. I believe that someday I will be treated and cured. I don't like to see someone post that there is no cure for Fibro. Sure, not right now but who's to say that won't be a fact in 10 years. I am of the belief that if you want something to happen, it is possible to make it happen by positive thinking. Also, there is new evidence out that suggests that narcotics are VERY helpful for those with all kinds of chronic illnesses, Fibromyalgia is now included in that. I read medical journals, Pain Management journal - specifically so I can keep up on new medications and the like, new things I can try through my own doctor so I get access to the latest research and this is new as of late last year. Fortunately my doctor believes that the only way I'm able to come to his office every 2 months is because of the pain regimen that I am on, including 3 pain medications. I now that many doctors just hand out drugs and do nothing else but I also think that people who are on this list want to be as educated as possible and we always suggest that people get second opinions, especially when it comes to treatments - to not only rely on the medications but also try other alternative therapies. You say that narcotics can do damage over time - well so can others like Neurontin, Lyrica, anti-depressants included. Every single drug has it's risk, especially when you're talking about a certain group in the population that is super sensitive to drug side effects. If people take their meds correctly, most likely they will be okay. It's when people self-medicate without prior permission and mess with their dosages that they get into trouble. So please don't give them impression to those that may not be as educated as others on this group, that narcotics are bad and and in your opinion or your doctor's opinion don't work for FM. I sincerely believe that those who are on them, really need them!! Also, there is still no evidence that Fibromyalgia is an auto-immune disorder. It was thought once that it was but there's still no evidence of that. I really wish that you would just make suggestions to people and not bash those who really truly need whatever meds they are on - that is what it feels like you're doing. Everyone with this disease is so different - so what works for you, probably won't work for me. I need my pain meds and yes, I'm on pretty powerful pain medications but it gets me out of my house. also, I was born into a family susceptible to the so called 'addictive personality'. I've seen it affect everyone in my family and I too have a major in psychology and over the years of studying it, with my own experiences with alcohol and medications, I don't believe that if you have the gene, that you're automatically going to be addicted to anything you try. I have proof of myself not becoming hooked on things that my parents or my brother is hooked on. I think it's more about mind over body. I personally don't like getting drunk and I hardly drink now with all the meds I'm on, unless I go wine tasting or something fun like that. But I've never felt that 'pull' towards taking more to get high or enjoying that experience. Yes, the meds that I am on give me great amounts of relief. Plus with the extended released ones, they help tremendously. So please just be more open-minded and realize that everyone has their own unique experiences. WhitneyOn Jan 11, 2008 1:11 PM, nadine redman <nlraccount@...> wrote:

Shari, I'm not trying to be opinionated as you suggest. Unfortunately I have seen many, many people on narcotics and yes, you may mentally become addicted and physically become addicted. What is interesting is in those that " had to have the pain pills " the relief they had when indeed they were given a " placebo. " Very, very interesting. Obviously there are those out there that really felt relief from the narcotics and no relief from the placebo, but an interesting number of patients have been know to " fail " the test. Any comments on that? I'm just saying it's not good to be on the narcotics if you don't have to be. They can do a lot of harm to your body in the long run. I guess it's what one figures to be the lesser of the two evils. I am not down playing the role of medication to help Fibromyalgia. However, I have seen too much

of doctors giving out prescriptions because they don't know what else to do. Let's face it, medications can be good, or can complicate an already complicated autoimmune disease. I have a bit of medical knowledge (I have been through Human Anatomy/Physiology courses, Pathophysiology courses, Psychology courses, Nursing courses, Organic chemistry, etc..) on my way to a degree before life changing events this past year that lead to a huge change in my Fibromyalgia. My husband is a Licensed Physical Therapy Associate and has close contacts with Doctors in the Orthopedic realm.

I was just recently diagnosed (December) with beginnings of Rheumatoid Arthritis as well. The pool suggestion, Lyrica, and the fact that narcotics don't work for Fibro pain came from a very knowledgeable Rheumatologist. Other information was suggested by my

family doctor who is above and beyond amazing! I don't just say things to say things. Sure, not everyone is the same, nor responds the same to the same treatments, but we all suffer from the same symptoms. I have many days that it takes a few hours to get out of bed and get motivated, so don't judge me. There are people with Fibro that do holistic care as well, and that works for them. I also mentioned pain specialists, and you made no remark on that. I only wrote what works for me! Plus I do know for a fact that UNLESS a Chiropractor puts you back in place AND gives you exercises to help your weak areas, it is nothing more than a quick fix, a band-aid on a wound so to say. I'm not saying Chiropractors are bad, and yes, they do help some people....I'm just saying make it a good Chiropractor, and those are the ones that give you exercises as well. Have you ever tried non weight

bearing strengthing exercises? Have you ever tried non-resistance exercise? Have you ever tried toning exercises with an exercise ball? Have you ever tried stretching exercises? Ever try Pilates or Yoga? To put all exercise in a box and label it as such is doing an extreme injustice to those who may be helped by different forms of such. Ice does help when it is pain from arthritis, so do cold compresses. Lavender oil has made a lot of people's migranes go away, and relax them into sleep. So smells bother you, that's ok, but it does work for a lot of other people. Peppermint oil has helped many with inflammation, however if you have high blood pressure, you need to be careful because it can raise your blood pressure. I'm glad you're involved with the different groups, but please don't find people necessarily opinionated because there are things you don't agree with. That seems to be

close minded, and not a help to anyone. Nadine " christina h. " <christina-777@...

> wrote: THIS IS SO TRUE ABOUT WHAT WORKS FOR ONE, MAY NOT WORK FOR SOMEONE ELSE AND IF IT DOES WORK, IT MAY LAST FOR A SHORT SEASON.

I COULD NOT DO EXERCISE OR WATER AEROBICS. I PREFER HEAT IN CERTAIN AREAS AND ICE IN OTHERS. MASSAGE HELPS ME AND CHIROPRACTICERS DO NOT. WE ARE UNIQUELY MADE AND NONE ALIKE TO HAVE US BE

PUT INTO A COOKIE CUTTER WHEN TREATMENT IS CONCERNED. I WISH IT WAS THAT EASY.Shari Ferbert <shari23@...> wrote:

Nadine,

Regarding your post about medications and treatments, I have to comment on a few things you said to remind people of the need to be open minded when it comes to treatments for FMS. I have tried things that I never thought I would, or didn't really think would work, but needed to do it just so I could say I tried

everything.

First, I am sorry you have so much pain and I am glad that you have found some things that work for you. I have degenerative arthritis everywhere which has resulted in 2 surgeries so far, along with my FMS, CFS and other random problems (

i.e. meningitis 4 times) – so I know a lot about FMS pain, arthritis pain, surgery pain and headache pain. I know that you are trying to help and you have made some good points; but, using myself as an example, your steps 1-4 below do not represent a treatment regiment that is good for everyone. 1st trigger point massage… if I have a deep massage like that I would be in a flare for a week, not to mention the muscle spasms I get when being pressed

on like that. There are other types of gentle P/T and massage however, that do work for me. 2nd: Moist heat is good for some people, but ice works better for others because of potential swelling. If it can be tolerated, alternating heat and ice is good too. A heated, scented bag (rice bag, lavender, etc) makes me sick to my stomach. I do not tolerate many smells, and am allergic to some of the chemicals in the aroma therapy heat packs. 4th: You are right, water aerobics is good for many people, me included. But, many people cannot even get out of bed let alone go to a facility with a pool and get into a bathing suit to swim. I run an on-line FM support group, and we have had some very heated discussions about exercise. We came to the conclusion that some people just cannot tolerate exercise – period. Also, for people with CFS and ME, exercise can even be dangerous. Your comments about

medications come across as being very judgmental: "It in no way helps Fibromyalgia pain, only normal muscle pain after injury/surgery." I take pain medication and it is what keeps me off of the couch. I personally take offense to that comment. Whitney made a very good point about the difference between being emotionally addicted and physically addicted to narcotics, and I am sure Dominie has something in her newsletter archives about the subject as well. The theory about the headaches being caused by tight muscles may be true for some people, but over half of the people with FMS suffer with migraines, which is a separate, diagnosable condition within the CSS spectrum of disorders of FMS. So please, don't downplay the need for medication for migraines because you have your own theory of the origin of the pain. Chiropractic care helps a lot of people by doing more than just giving you exercises. Although

it is not my treatment of choice, one shouldn't be discouraged from trying it – they may be surprised!

I know you are trying to be supportive of others with your recommendations of treatments and theories, but please try not to be so opinionated. With FMS, there is more unknown than known – so it is very important for everyone to keep an open mind!

Shari

Ferbert

On Jan 8, 2008 2:00 PM, nadine redman <

nlraccount@...> wrote:> I have pain too, along with arthritis in both knees, hands, fingers,

> feet, and lower back. My neck and back, hips, and shoulders hurt on a daily> basis. Most days after being on my feet

at work my heels just scream at> me. I am on Lyrica, Effexor, Seroquil, Synthroid (did everyone know that> most people with Fibro have Thyroid issues?) I also have high BP so I take> Accupril for that. Anyway, my husband is a Physical Therapy Assistant, and

> let me tell you what helps tremendously. There are a few things......1st is> a trigger point massage, hurts like hell, but afterwards your body feels> amazing. 2nd heat.....moist heat only. Homemade rice bags are great, and

> so are the Chammomile and Lavender wraps from Kohls. 3rd a Paraffin wrap on> your hands and feet. You can find the Paraffin machines at Wal-Mart, Kohls,> Macys, and Meijer stores. That does wonders for hands that hurt and feet

> that won't stop throbbing. 4th water aerobics or just walking around in a> heated swimming pool and doing exercises.> For the person on all the meds......wow. You can become very

addicted to> Vicodin, Percocet, etc.. Not to mention with that you build up a> tolerance. It in no way helps Fibromyalgia pain, only normal muscle pain> after injury/surgery. Why are you on Imitrex? For the headaches? Does it

> help? Honestly most people with Fibro that have the extreme headaches is> because of the knotted muscles in our necks and upper backs and shoulders.> Try a good massage therapist. They would be a heck of a lot less expensive

> than all the medication your on. Chiropractors only help if they give you> the exercises to strengthen the weak areas they keep working on. Yes, pain> is a daily part of all of our lives. Some days are worse than others. I

> think a lot of times we expect to have a pain free existance, and well, that> isn't going to happen. I think accepting that has helped me out> tremendously because just accepting that has focused me to living with it

>

and working with it. There are also doctors that are pain specialists that> some go to. I personally haven't been to one, but there is that help out> there too. Hang in there!!!!!!!!!!! We know how you feel!!!!

> Nadine>> Never miss a thing. Make your homepage.

-- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic pain!Ask about The Purrfect Petsitter and Infinite Creations!

January 11, 2008

I'm not bashing, just concerned. I sent a page out with treatment for Fibro on one of the replies to the myofacial heading. I'll send even more to you now here....I just think there are better ways to treat this thing than narcotics. Nadine [Pharmacological treatment of fibromyalgia.] [Article in Italian] Cazzola M, Sarzi-Puttini P, Buskila D, Atzeni F. U.O. Reumatologia, Azienda Ospedaliera "L. Sacco", 20157 Milano, Italia. atzenifabiola@.... Fibromyalgia syndrome (FM) is a condition of chronic and diffuse muscular pain affecting particularly middle aged women. The aetiology of FM is not completely understood and it is currently considered a disorder of pain regulation. The most efficacious compounds include the tricyclic drugs and mixed reuptake inhibitors. Recent works suggest that the anticonvulsant medications pregabalin and

gabapentin are also effective. Moreover, two serotonin and norepinephrine-reuptake inhibitors-duloxetine and milnacipran show encouraging results in treating FM symptoms. The results of clinical trials of anti-inflammatory medications have been generally disappointing, but three RCTs have found that tramadol (with or without acetaminophen) is effective in FM. PMID: 18157284 [PubMed - in process] Biology and therapy of fibromyalgia. New therapies in fibromyalgia. Arnold LM. Women's Health Research Program, University of Cincinnati College of Medicine, Piedmont Avenue, Cincinnati, Ohio 45219, USA. Lesley.Arnold@... Fibromyalgia is a chronic, musculoskeletal pain condition that predominately affects women. Although fibromyalgia is common and associated with substantial morbidity and disability, there are no US Food and Drug Administration-approved treatments. However, progress has been made in identifying pharmacological and non-pharmacological treatments for fibromyalgia. Recent pharmacological treatment studies have focused on selective serotonin and norepinephrine reuptake inhibitors, which enhance serotonin and norepinephrine neurotransmission in the descending pain pathways and lack many of the adverse side effects associated with tricyclic medications. Promising results have also been reported for medications that bind to the alpha2delta subunit of voltage-gated calcium channels, resulting in decreased calcium influx at nerve terminals and subsequent reduction in the release of several neurotransmitters thought to play a role in pain processing. There is also

evidence to support exercise, cognitive behavioral therapy, education, and social support in the management of fibromyalgia. It is likely that many patients would benefit from combinations of pharmacological and non-pharmacological treatments, but more study is needed. PMID: 16762044 [PubMed - indexed for MEDLINE] Growth hormone may curb fibromyalgia pain Reuters HealthFriday, December 14, 2007 NEW YORK (Reuters Health) - Some people who suffer from a common and often debilitating chronic pain condition called fibromyalgia may find relief with shots of growth hormone, a study hints. In a group of patients with

severe fibromyalgia and low blood levels of insulin-like growth factor 1 (IGF-1), adding daily injections of growth hormone to standard intensive therapy reduced pain and improved quality of life, researchers found. There is evidence of growth hormone deficiency -- expressed as low IGF-1 blood levels -in some fibromyalgia patients, Dr. Guillem Cuatrecasas at Centro Medico Teknon in Barcelona, and colleagues explain in a report published online. Growth hormone stimulates IGF-1 in the body. The Spanish investigators studied the effects of growth hormone in a study involving 24 mostly female patients who had severe fibromyalgia lasting at least 1 year, low IGF-1 levels, and pain in at least 16 of the 18 fibromyalgia "trigger points." Standard therapy included an antidepressant, such as amitriptyline or fluoxetine, plus the painkiller tramadol, as well as active rehabilitation and psychological support. Twelve patients were

randomly selected for treatment with human growth hormone. After 12 months, the number of tender points was significantly lower in the growth hormone group (average 6.50 versus 16.5), the investigators report. Growth hormone treatment was also associated with significantly greater improvement in scores on the so-called Fibromyalgia Impact Questionnaire and in overall quality of life. In fact, all 12 patients in the growth hormone group experienced global improvement, which was apparent within the first month according to most measurements. Improvements were evident in areas such as fatigue, pain, anxiety and depression, the investigators note. "The consistency and magnitude of these results...are encouraging and warrant further validation in a multicenter, double-blind confirmatory study, which is currently ongoing." SOURCE: BMC Musculoskeletal Disorders, online November 30. 2007. Reuters Health Whitney <infinite242@...> wrote: Nadine,To me and I'm sure Shari as well, and anyone else not speaking up, you seem to have a lot of biased information. I know about placebo tests and I've been the guinea pig for many of them. I have Fibromyalgia (which makes me sick from heat + humidity, makes me sick from too much stress or when I push myself to do too much, makes me susceptible to coming down with weird ailments and makes me severely

fatigued and nauseous; on top of severe Myofascial Pain, where I believe 75% or more of my severe pain originates. I believe that someday I will be treated and cured. I don't like to see someone post that there is no cure for Fibro. Sure, not right now but who's to say that won't be a fact in 10 years. I am of the belief that if you want something to happen, it is possible to make it happen by positive thinking. Also, there is new evidence out that suggests that narcotics are VERY helpful for those with all kinds of chronic illnesses, Fibromyalgia is now included in that. I read medical journals, Pain Management journal - specifically so I can keep up on new medications and the like, new things I can try through my own doctor so I get access to the latest research and this is new as of late last year. Fortunately my doctor believes that the only way I'm able to come to his office every 2 months is because of the pain regimen that I am on, including 3 pain medications. I

now that many doctors just hand out drugs and do nothing else but I also think that people who are on this list want to be as educated as possible and we always suggest that people get second opinions, especially when it comes to treatments - to not only rely on the medications but also try other alternative therapies. You say that narcotics can do damage over time - well so can others like Neurontin, Lyrica, anti-depressants included. Every single drug has it's risk, especially when you're talking about a certain group in the population that is super sensitive to drug side effects. If people take their meds correctly, most likely they will be okay. It's when people self-medicate without prior permission and mess with their dosages that they get into trouble. So please don't give them impression to those that may not be as educated as others on this group, that narcotics are bad and and in your opinion or your doctor's opinion don't work for FM. I sincerely believe that

those who are on them, really need them!! Also, there is still no evidence that Fibromyalgia is an auto-immune disorder. It was thought once that it was but there's still no evidence of that. I really wish that you would just make suggestions to people and not bash those who really truly need whatever meds they are on - that is what it feels like you're doing. Everyone with this disease is so different - so what works for you, probably won't work for me. I need my pain meds and yes, I'm on pretty powerful pain medications but it gets me out of my house. also, I was born into a family susceptible to the so called 'addictive personality'. I've seen it affect everyone in my family and I too have a major in psychology and over the years of studying it, with my own experiences with alcohol and medications, I don't believe that if you have the gene, that you're automatically going to be addicted to anything you try. I have proof of myself not becoming hooked on

things that my parents or my brother is hooked on. I think it's more about mind over body. I personally don't like getting drunk and I hardly drink now with all the meds I'm on, unless I go wine tasting or something fun like that. But I've never felt that 'pull' towards taking more to get high or enjoying that experience. Yes, the meds that I am on give me great amounts of relief. Plus with the extended released ones, they help tremendously. So please just be more open-minded and realize that everyone has their own unique experiences. Whitney On Jan 11, 2008 1:11 PM, nadine redman <nlraccount > wrote: Shari, I'm not trying to be opinionated as you

suggest. Unfortunately I have seen many, many people on narcotics and yes, you may mentally become addicted and physically become addicted. What is interesting is in those that "had to have the pain pills" the relief they had when indeed they were given a "placebo." Very, very interesting. Obviously there are those out there that really felt relief from the narcotics and no relief from the placebo, but an interesting number of patients have been know to "fail" the test. Any comments on that? I'm just saying it's not good to be on the narcotics if you don't have to be. They can do a lot of harm to your body in the long run. I guess it's what one figures to be the lesser of the two evils. I am not down playing the role of medication to help Fibromyalgia. However, I have seen too much of doctors giving out prescriptions because they don't know what else to do. Let's face

it, medications can be good, or can complicate an already complicated autoimmune disease. I have a bit of medical knowledge (I have been through Human Anatomy/Physiology courses, Pathophysiology courses, Psychology courses, Nursing courses, Organic chemistry, etc..) on my way to a degree before life changing events this past year that lead to a huge change in my Fibromyalgia. My husband is a Licensed Physical Therapy Associate and has close contacts with Doctors in the Orthopedic realm. I was just recently diagnosed (December) with beginnings of Rheumatoid Arthritis as well. The pool suggestion, Lyrica, and the fact that narcotics don't work for Fibro pain came from a very knowledgeable Rheumatologist. Other information was suggested by my family doctor who is above and beyond amazing! I don't just say things to say

things. Sure, not everyone is the same, nor responds the same to the same treatments, but we all suffer from the same symptoms. I have many days that it takes a few hours to get out of bed and get motivated, so don't judge me. There are people with Fibro that do holistic care as well, and that works for them. I also mentioned pain specialists, and you made no remark on that. I only wrote what works for me! Plus I do know for a fact that UNLESS a Chiropractor puts you back in place AND gives you exercises to help your weak areas, it is nothing more than a quick fix, a band-aid on a wound so to say. I'm not saying Chiropractors are bad, and yes, they do help some people....I'm just saying make it a good Chiropractor, and those are the ones that give you exercises as well. Have you ever tried non weight bearing strengthing exercises? Have you ever tried non-resistance exercise? Have you

ever tried toning exercises with an exercise ball? Have you ever tried stretching exercises? Ever try Pilates or Yoga? To put all exercise in a box and label it as such is doing an extreme injustice to those who may be helped by different forms of such. Ice does help when it is pain from arthritis, so do cold compresses. Lavender oil has made a lot of people's migranes go away, and relax them into sleep. So smells bother you, that's ok, but it does work for a lot of other people. Peppermint oil has helped many with inflammation, however if you have high blood pressure, you need to be careful because it can raise your blood pressure. I'm glad you're involved with the different groups, but please don't find people necessarily opinionated because there are things you don't agree with. That seems to be close minded, and not a help to anyone. Nadine "christina h." <christina-777sbcglobal (DOT) net > wrote: THIS IS SO TRUE ABOUT WHAT WORKS FOR ONE, MAY NOT WORK FOR SOMEONE ELSE AND IF IT DOES WORK, IT MAY LAST FOR A SHORT SEASON. I COULD NOT DO EXERCISE OR WATER AEROBICS. I PREFER HEAT IN CERTAIN AREAS AND ICE IN OTHERS. MASSAGE HELPS ME AND CHIROPRACTICERS DO NOT. WE ARE UNIQUELY MADE AND NONE ALIKE TO HAVE US BE PUT INTO A COOKIE CUTTER WHEN TREATMENT IS CONCERNED. I WISH IT WAS THAT EASY.Shari Ferbert <shari23comcast (DOT) net>

wrote: Nadine, Regarding your post about medications and treatments, I have to comment on a few things you said to remind people of the need to be open minded when it comes to treatments for FMS. I have tried things that I never thought I would, or didn't really think would work, but needed to do it just so I could say I tried everything. First, I am sorry you have so much pain and I am glad that you have found some things

that work for you. I have degenerative arthritis everywhere which has resulted in 2 surgeries so far, along with my FMS, CFS and other random problems ( i.e. meningitis 4 times) – so I know a lot about FMS pain, arthritis pain, surgery pain and headache pain. I know that you are trying to help and you have made some good points; but, using myself as an example, your steps 1-4 below do not represent a treatment regiment that is good for everyone. 1st trigger point massage… if I have a deep massage like that I would be in a flare for a week, not to mention the muscle spasms I get when being pressed on like that. There are other types of gentle P/T and massage however, that do work for me. 2nd: Moist heat is good for some people, but ice works better for others because of potential swelling. If it can be tolerated, alternating heat and ice is good too. A heated, scented bag (rice bag, lavender, etc) makes me

sick to my stomach. I do not tolerate many smells, and am allergic to some of the chemicals in the aroma therapy heat packs. 4th: You are right, water aerobics is good for many people, me included. But, many people cannot even get out of bed let alone go to a facility with a pool and get into a bathing suit to swim. I run an on-line FM support group, and we have had some very heated discussions about exercise. We came to the conclusion that some people just cannot tolerate exercise – period. Also, for people with CFS and ME, exercise can even be dangerous. Your comments about medications come across as being very judgmental: "It in no way helps Fibromyalgia pain, only normal muscle pain after injury/surgery." I take pain medication and it is what keeps me off of the couch. I personally take offense to that comment. Whitney made a very good point about the difference between

being emotionally addicted and physically addicted to narcotics, and I am sure Dominie has something in her newsletter archives about the subject as well. The theory about the headaches being caused by tight muscles may be true for some people, but over half of the people with FMS suffer with migraines, which is a separate, diagnosable condition within the CSS spectrum of disorders of FMS. So please, don't downplay the need for medication for migraines because you have your own theory of the origin of the pain. Chiropractic care helps a lot of people by doing more than just giving you exercises. Although it is not my treatment of choice, one shouldn't be discouraged from trying it – they may be surprised! I know you are trying to be supportive of others with

your recommendations of treatments and theories, but please try not to be so opinionated. With FMS, there is more unknown than known – so it is very important for everyone to keep an open mind! Shari Ferbert On Jan 8, 2008 2:00 PM, nadine redman < nlraccount > wrote:> I have pain too, along with arthritis in both knees, hands, fingers, > feet, and lower back. My neck and back, hips, and shoulders hurt on a daily> basis. Most days after being on my feet at work my heels just scream at> me. I am on Lyrica, Effexor, Seroquil, Synthroid (did everyone know that> most people with Fibro have Thyroid issues?) I also have high BP so I take> Accupril for that. Anyway, my husband is a Physical Therapy Assistant, and > let me tell you what helps tremendously. There are a few things......1st is> a trigger point massage, hurts like hell, but afterwards your body feels> amazing. 2nd heat.....moist heat only. Homemade rice bags are great, and > so are the Chammomile and Lavender wraps from Kohls. 3rd a Paraffin

wrap on> your hands and feet. You can find the Paraffin machines at Wal-Mart, Kohls,> Macys, and Meijer stores. That does wonders for hands that hurt and feet > that won't stop throbbing. 4th water aerobics or just walking around in a> heated swimming pool and doing exercises.> For the person on all the meds......wow. You can become very addicted to> Vicodin, Percocet, etc.. Not to mention with that you build up a> tolerance. It in no way helps Fibromyalgia pain, only normal muscle pain> after injury/surgery. Why are you on Imitrex? For the headaches? Does it > help? Honestly most people with Fibro that have the extreme headaches is> because of the knotted muscles in our necks and upper backs and shoulders.> Try a good massage therapist. They would be a heck of a lot less expensive > than all the medication your on. Chiropractors only help if they give you> the exercises to

strengthen the weak areas they keep working on. Yes, pain> is a daily part of all of our lives. Some days are worse than others. I > think a lot of times we expect to have a pain free existance, and well, that> isn't going to happen. I think accepting that has helped me out> tremendously because just accepting that has focused me to living with it > and working with it. There are also doctors that are pain specialists that> some go to. I personally haven't been to one, but there is that help out> there too. Hang in there!!!!!!!!!!! We know how you feel!!!! > Nadine>> Never miss a thing. Make your homepage. -- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic pain!Ask about The Purrfect Petsitter and Infinite Creations!

Looking for last minute shopping deals? Find them fast with Search.

January 13, 2008

Whitney,

Very well said.

Pam

Re: SHARI] what works for one is not for everyone

Nadine,To me and I'm sure Shari as well, and anyone else not speaking up, you seem to have a lot of biased information. I know about placebo tests and I've been the guinea pig for many of them. I have Fibromyalgia (which makes me sick from heat + humidity, makes me sick from too much stress or when I push myself to do too much, makes me susceptible to coming down with weird ailments and makes me severely fatigued and nauseous; on top of severe Myofascial Pain, where I believe 75% or more of my severe pain originates. I believe that someday I will be treated and cured. I don't like to see someone post that there is no cure for Fibro. Sure, not right now but who's to say that won't be a fact in 10 years. I am of the belief that if you want something to happen, it is possible to make it happen by positive thinking. Also, there is new evidence out that suggests that narcotics are VERY helpful for those with all kinds of chronic illnesses, Fibromyalgia is now included in that. I read medical journals, Pain Management journal - specifically so I can keep up on new medications and the like, new things I can try through my own doctor so I get access to the latest research and this is new as of late last year. Fortunately my doctor believes that the only way I'm able to come to his office every 2 months is because of the pain regimen that I am on, including 3 pain medications. I now that many doctors just hand out drugs and do nothing else but I also think that people who are on this list want to be as educated as possible and we always suggest that people get second opinions, especially when it comes to treatments - to not only rely on the medications but also try other alternative therapies. You say that narcotics can do damage over time - well so can others like Neurontin, Lyrica, anti-depressants included. Every single drug has it's risk, especially when you're talking about a certain group in the population that is super sensitive to drug side effects. If people take their meds correctly, most likely they will be okay. It's when people self-medicate without prior permission and mess with their dosages that they get into trouble. So please don't give them impression to those that may not be as educated as others on this group, that narcotics are bad and and in your opinion or your doctor's opinion don't work for FM. I sincerely believe that those who are on them, really need them!! Also, there is still no evidence that Fibromyalgia is an auto-immune disorder. It was thought once that it was but there's still no evidence of that. I really wish that you would just make suggestions to people and not bash those who really truly need whatever meds they are on - that is what it feels like you're doing. Everyone with this disease is so different - so what works for you, probably won't work for me. I need my pain meds and yes, I'm on pretty powerful pain medications but it gets me out of my house. also, I was born into a family susceptible to the so called 'addictive personality'. I've seen it affect everyone in my family and I too have a major in psychology and over the years of studying it, with my own experiences with alcohol and medications, I don't believe that if you have the gene, that you're automatically going to be addicted to anything you try. I have proof of myself not becoming hooked on things that my parents or my brother is hooked on. I think it's more about mind over body. I personally don't like getting drunk and I hardly drink now with all the meds I'm on, unless I go wine tasting or something fun like that. But I've never felt that 'pull' towards taking more to get high or enjoying that experience. Yes, the meds that I am on give me great amounts of relief. Plus with the extended released ones, they help tremendously. So please just be more open-minded and realize that everyone has their own unique experiences. Whitney

On Jan 11, 2008 1:11 PM, nadine redman <nlraccount > wrote:

Shari,

I'm not trying to be opinionated as you suggest. Unfortunately I have seen many, many people on narcotics and yes, you may mentally become addicted and physically become addicted. What is interesting is in those that "had to have the pain pills" the relief they had when indeed they were given a "placebo." Very, very interesting. Obviously there are those out there that really felt relief from the narcotics and no relief from the placebo, but an interesting number of patients have been know to "fail" the test. Any comments on that? I'm just saying it's not good to be on the narcotics if you don't have to be. They can do a lot of harm to your body in the long run. I guess it's what one figures to be the lesser of the two evils. I am not down playing the role of medication to help Fibromyalgia. However, I have seen too much of doctors giving out prescriptions because they don't know what else to do. Let's face it, medications can be good, or can complicate an already complicated autoimmune disease.

I have a bit of medical knowledge (I have been through Human Anatomy/Physiology courses, Pathophysiology courses, Psychology courses, Nursing courses, Organic chemistry, etc..) on my way to a degree before life changing events this past year that lead to a huge change in my Fibromyalgia. My husband is a Licensed Physical Therapy Associate and has close contacts with Doctors in the Orthopedic realm.

I was just recently diagnosed (December) with beginnings of Rheumatoid Arthritis as well. The pool suggestion, Lyrica, and the fact that narcotics don't work for Fibro pain came from a very knowledgeable Rheumatologist. Other information was suggested by my family doctor who is above and beyond amazing! I don't just say things to say things. Sure, not everyone is the same, nor responds the same to the same treatments, but we all suffer from the same symptoms. I have many days that it takes a few hours to get out of bed and get motivated, so don't judge me. There are people with Fibro that do holistic care as well, and that works for them. I also mentioned pain specialists, and you made no remark on that. I only wrote what works for me! Plus I do know for a fact that UNLESS a Chiropractor puts you back in place AND gives you exercises to help your weak areas, it is nothing more than a quick fix, a band-aid on a wound so to say. I'm not saying Chiropractors are bad, and yes, they do help some people....I'm just saying make it a good Chiropractor, and those are the ones that give you exercises as well. Have you ever tried non weight bearing strengthing exercises? Have you ever tried non-resistance exercise? Have you ever tried toning exercises with an exercise ball? Have you ever tried stretching exercises? Ever try Pilates or Yoga? To put all exercise in a box and label it as such is doing an extreme injustice to those who may be helped by different forms of such. Ice does help when it is pain from arthritis, so do cold compresses. Lavender oil has made a lot of people's migranes go away, and relax them into sleep. So smells bother you, that's ok, but it does work for a lot of other people. Peppermint oil has helped many with inflammation, however if you have high blood pressure, you need to be careful because it can raise your blood pressure. I'm glad you're involved with the different groups, but please don't find people necessarily opinionated because there are things you don't agree with. That seems to be close minded, and not a help to anyone.

Nadine

"christina h." <christina-777sbcglobal (DOT) net > wrote:

THIS IS SO TRUE ABOUT WHAT WORKS FOR ONE, MAY NOT WORK FOR SOMEONE ELSE AND IF IT DOES WORK, IT MAY LAST FOR A SHORT SEASON.

I COULD NOT DO EXERCISE OR WATER AEROBICS. I PREFER HEAT IN CERTAIN AREAS AND ICE IN OTHERS. MASSAGE HELPS ME AND CHIROPRACTICERS DO NOT. WE ARE UNIQUELY MADE AND NONE ALIKE TO HAVE US BE PUT INTO A COOKIE CUTTER WHEN TREATMENT IS CONCERNED. I WISH IT WAS THAT EASY.Shari Ferbert <shari23comcast (DOT) net> wrote:

Nadine,

Regarding your post about medications and treatments, I have to comment on a few things you said to remind people of the need to be open minded when it comes to treatments for FMS. I have tried things that I never thought I would, or didn't really think would work, but needed to do it just so I could say I tried everything.

First, I am sorry you have so much pain and I am glad that you have found some things that work for you. I have degenerative arthritis everywhere which has resulted in 2 surgeries so far, along with my FMS, CFS and other random problems ( i.e. meningitis 4 times) – so I know a lot about FMS pain, arthritis pain, surgery pain and headache pain. I know that you are trying to help and you have made some good points; but, using myself as an example, your steps 1-4 below do not represent a treatment regiment that is good for everyone. 1st trigger point massage… if I have a deep massage like that I would be in a flare for a week, not to mention the muscle spasms I get when being pressed on like that. There are other types of gentle P/T and massage however, that do work for me. 2nd: Moist heat is good for some people, but ice works better for others because of potential swelling. If it can be tolerated, alternating heat and ice is good too. A heated, scented bag (rice bag, lavender, etc) makes me sick to my stomach. I do not tolerate many smells, and am allergic to some of the chemicals in the aroma therapy heat packs. 4th: You are right, water aerobics is good for many people, me included. But, many people cannot even get out of bed let alone go to a facility with a pool and get into a bathing suit to swim. I run an on-line FM support group, and we have had some very heated discussions about exercise. We came to the conclusion that some people just cannot tolerate exercise – period. Also, for people with CFS and ME, exercise can even be dangerous. Your comments about medications come across as being very judgmental: "It in no way helps Fibromyalgia pain, only normal muscle pain after injury/surgery." I take pain medication and it is what keeps me off of the couch. I personally take offense to that comment. Whitney made a very good point about the difference between being emotionally addicted and physically addicted to narcotics, and I am sure Dominie has something in her newsletter archives about the subject as well. The theory about the headaches being caused by tight muscles may be true for some people, but over half of the people with FMS suffer with migraines, which is a separate, diagnosable condition within the CSS spectrum of disorders of FMS. So please, don't downplay the need for medication for migraines because you have your own theory of the origin of the pain. Chiropractic care helps a lot of people by doing more than just giving you exercises. Although it is not my treatment of choice, one shouldn't be discouraged from trying it – they may be surprised!

I know you are trying to be supportive of others with your recommendations of treatments and theories, but please try not to be so opinionated. With FMS, there is more unknown than known – so it is very important for everyone to keep an open mind!

Shari Ferbert

On Jan 8, 2008 2:00 PM, nadine redman < nlraccount > wrote:> I have pain too, along with arthritis in both knees, hands, fingers, > feet, and lower back. My neck and back, hips, and shoulders hurt on a daily> basis. Most days after being on my feet at work my heels just scream at> me. I am on Lyrica, Effexor, Seroquil, Synthroid (did everyone know that> most people with Fibro have Thyroid issues?) I also have high BP so I take> Accupril for that. Anyway, my husband is a Physical Therapy Assistant, and > let me tell you what helps tremendously. There are a few things......1st is> a trigger point massage, hurts like hell, but afterwards your body feels> amazing. 2nd heat.....moist heat only. Homemade rice bags are great, and > so are the Chammomile and Lavender wraps from Kohls. 3rd a Paraffin wrap on> your hands and feet. You can find the Paraffin machines at Wal-Mart, Kohls,> Macys, and Meijer stores. That does wonders for hands that hurt and feet > that won't stop throbbing. 4th water aerobics or just walking around in a> heated swimming pool and doing exercises.> For the person on all the meds......wow. You can become very addicted to> Vicodin, Percocet, etc.. Not to mention with that you build up a> tolerance. It in no way helps Fibromyalgia pain, only normal muscle pain> after injury/surgery. Why are you on Imitrex? For the headaches? Does it > help? Honestly most people with Fibro that have the extreme headaches is> because of the knotted muscles in our necks and upper backs and shoulders.> Try a good massage therapist. They would be a heck of a lot less expensive > than all the medication your on. Chiropractors only help if they give you> the exercises to strengthen the weak areas they keep working on. Yes, pain> is a daily part of all of our lives. Some days are worse than others. I > think a lot of times we expect to have a pain free existance, and well, that> isn't going to happen. I think accepting that has helped me out> tremendously because just accepting that has focused me to living with it > and working with it. There are also doctors that are pain specialists that> some go to. I personally haven't been to one, but there is that help out> there too. Hang in there!!!!!!!!!!! We know how you feel!!!! > Nadine>>

Never miss a thing. Make your homepage. -- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic pain!Ask about The Purrfect Petsitter and Infinite Creations!

January 13, 2008

Why can't we stop beating a dead horse? I just feel strongly about the non-use of narcotics. I'm not judging, please stop thinking that. I'm a very open, caring, extremely loving person that has Fibro and RA. Why is everyone focusing on one thing? I'm sorry I brought different solutions to air, to give people something to think about. Is that wrong? I'm not a person that is content letting this disease change my life, so maybe I come across strong, but it's only because I'm angry at the disease. Please stop. Nadine Pam Horne <pmarshall@...> wrote: Whitney, Very well said. Pam Re: SHARI] what works for one is not for everyone Nadine,To me and I'm sure Shari as well, and anyone else not speaking up, you seem to have a lot of biased information. I know about placebo tests and I've been the guinea pig for many of them. I have Fibromyalgia (which makes me sick from heat + humidity, makes me sick from too much stress or when I push myself to do too much, makes me susceptible to coming down with weird ailments and makes me severely fatigued and nauseous; on top of severe Myofascial Pain, where I believe 75% or more of my severe pain originates. I believe that someday I will be treated and cured. I don't like to see someone post that there is no cure for Fibro. Sure, not right now but who's to say that won't be a fact in 10 years. I am of the belief that if you want something to

happen, it is possible to make it happen by positive thinking. Also, there is new evidence out that suggests that narcotics are VERY helpful for those with all kinds of chronic illnesses, Fibromyalgia is now included in that. I read medical journals, Pain Management journal - specifically so I can keep up on new medications and the like, new things I can try through my own doctor so I get access to the latest research and this is new as of late last year. Fortunately my doctor believes that the only way I'm able to come to his office every 2 months is because of the pain regimen that I am on, including 3 pain medications. I now that many doctors just hand out drugs and do nothing else but I also think that people who are on this list want to be as educated as possible and we always suggest that people get second opinions, especially when it comes to treatments - to not only rely on the medications but also try other alternative therapies. You say that narcotics can do

damage over time - well so can others like Neurontin, Lyrica, anti-depressants included. Every single drug has it's risk, especially when you're talking about a certain group in the population that is super sensitive to drug side effects. If people take their meds correctly, most likely they will be okay. It's when people self-medicate without prior permission and mess with their dosages that they get into trouble. So please don't give them impression to those that may not be as educated as others on this group, that narcotics are bad and and in your opinion or your doctor's opinion don't work for FM. I sincerely believe that those who are on them, really need them!! Also, there is still no evidence that Fibromyalgia is an auto-immune disorder. It was thought once that it was but there's still no evidence of that. I really wish that you would just make suggestions to people and not bash those who really truly need whatever meds they are on - that is what it feels

like you're doing. Everyone with this disease is so different - so what works for you, probably won't work for me. I need my pain meds and yes, I'm on pretty powerful pain medications but it gets me out of my house. also, I was born into a family susceptible to the so called 'addictive personality'. I've seen it affect everyone in my family and I too have a major in psychology and over the years of studying it, with my own experiences with alcohol and medications, I don't believe that if you have the gene, that you're automatically going to be addicted to anything you try. I have proof of myself not becoming hooked on things that my parents or my brother is hooked on. I think it's more about mind over body. I personally don't like getting drunk and I hardly drink now with all the meds I'm on, unless I go wine tasting or something fun like that. But I've never felt that 'pull' towards taking more to get high or enjoying that experience. Yes, the meds that I am

on give me great amounts of relief. Plus with the extended released ones, they help tremendously. So please just be more open-minded and realize that everyone has their own unique experiences. Whitney On Jan 11, 2008 1:11 PM, nadine redman <nlraccount > wrote: Shari, I'm not trying to be opinionated as you suggest. Unfortunately I have seen many, many people on narcotics and yes, you may mentally become addicted and physically become addicted. What is interesting is in those that "had to have the pain pills" the relief they had when indeed they were given a "placebo." Very, very interesting. Obviously there are those out there

that really felt relief from the narcotics and no relief from the placebo, but an interesting number of patients have been know to "fail" the test. Any comments on that? I'm just saying it's not good to be on the narcotics if you don't have to be. They can do a lot of harm to your body in the long run. I guess it's what one figures to be the lesser of the two evils. I am not down playing the role of medication to help Fibromyalgia. However, I have seen too much of doctors giving out prescriptions because they don't know what else to do. Let's face it, medications can be good, or can complicate an already complicated autoimmune disease. I have a bit of medical knowledge (I have been through Human Anatomy/Physiology courses, Pathophysiology courses, Psychology courses, Nursing courses, Organic chemistry, etc..) on my way to a

degree before life changing events this past year that lead to a huge change in my Fibromyalgia. My husband is a Licensed Physical Therapy Associate and has close contacts with Doctors in the Orthopedic realm. I was just recently diagnosed (December) with beginnings of Rheumatoid Arthritis as well. The pool suggestion, Lyrica, and the fact that narcotics don't work for Fibro pain came from a very knowledgeable Rheumatologist. Other information was suggested by my family doctor who is above and beyond amazing! I don't just say things to say things. Sure, not everyone is the same, nor responds the same to the same treatments, but we all suffer from the same symptoms. I have many days that it takes a few hours to get out of bed and get motivated, so don't judge me. There are people with Fibro that do holistic care as well, and that works for them. I also

mentioned pain specialists, and you made no remark on that. I only wrote what works for me! Plus I do know for a fact that UNLESS a Chiropractor puts you back in place AND gives you exercises to help your weak areas, it is nothing more than a quick fix, a band-aid on a wound so to say. I'm not saying Chiropractors are bad, and yes, they do help some people....I'm just saying make it a good Chiropractor, and those are the ones that give you exercises as well. Have you ever tried non weight bearing strengthing exercises? Have you ever tried non-resistance exercise? Have you ever tried toning exercises with an exercise ball? Have you ever tried stretching exercises? Ever try Pilates or Yoga? To put all exercise in a box and label it as such is doing an extreme injustice to those who may be helped by different forms of such. Ice does help when it is pain from arthritis, so do cold

compresses. Lavender oil has made a lot of people's migranes go away, and relax them into sleep. So smells bother you, that's ok, but it does work for a lot of other people. Peppermint oil has helped many with inflammation, however if you have high blood pressure, you need to be careful because it can raise your blood pressure. I'm glad you're involved with the different groups, but please don't find people necessarily opinionated because there are things you don't agree with. That seems to be close minded, and not a help to anyone. Nadine "christina h." <christina-777sbcglobal (DOT) net > wrote: THIS IS SO TRUE ABOUT WHAT WORKS FOR ONE, MAY NOT WORK FOR SOMEONE ELSE AND IF IT DOES WORK, IT MAY LAST FOR A SHORT SEASON. I COULD NOT DO EXERCISE OR WATER AEROBICS. I PREFER HEAT IN CERTAIN AREAS AND ICE IN OTHERS. MASSAGE HELPS ME AND CHIROPRACTICERS DO NOT. WE ARE UNIQUELY MADE AND NONE ALIKE TO HAVE US BE PUT INTO A COOKIE CUTTER WHEN TREATMENT IS CONCERNED. I WISH IT WAS THAT EASY.Shari Ferbert <shari23comcast (DOT) net> wrote: Nadine, Regarding

your post about medications and treatments, I have to comment on a few things you said to remind people of the need to be open minded when it comes to treatments for FMS. I have tried things that I never thought I would, or didn't really think would work, but needed to do it just so I could say I tried everything. First, I am sorry you have so much pain and I am glad that you have found some things that work for you. I have degenerative arthritis everywhere which has resulted in 2 surgeries so far, along with my FMS, CFS and other random problems ( i.e. meningitis 4 times) – so I know a lot about FMS pain, arthritis pain, surgery pain and headache pain. I know that you are trying to help and you have made some good points; but, using myself as

an example, your steps 1-4 below do not represent a treatment regiment that is good for everyone. 1st trigger point massage… if I have a deep massage like that I would be in a flare for a week, not to mention the muscle spasms I get when being pressed on like that. There are other types of gentle P/T and massage however, that do work for me. 2nd: Moist heat is good for some people, but ice works better for others because of potential swelling. If it can be tolerated, alternating heat and ice is good too. A heated, scented bag (rice bag, lavender, etc) makes me sick to my stomach. I do not tolerate many smells, and am allergic to some of the chemicals in the aroma therapy heat packs. 4th: You are right, water aerobics is good for many people, me included. But, many people cannot even get out of bed let alone go to a facility with a pool and get into a bathing suit to swim. I run an on-line FM

support group, and we have had some very heated discussions about exercise. We came to the conclusion that some people just cannot tolerate exercise – period. Also, for people with CFS and ME, exercise can even be dangerous. Your comments about medications come across as being very judgmental: "It in no way helps Fibromyalgia pain, only normal muscle pain after injury/surgery." I take pain medication and it is what keeps me off of the couch. I personally take offense to that comment. Whitney made a very good point about the difference between being emotionally addicted and physically addicted to narcotics, and I am sure Dominie has something in her newsletter archives about the subject as well. The theory about the headaches being caused by tight muscles may be true for some people, but over half of the people with FMS suffer with migraines, which is a separate, diagnosable condition within the

CSS spectrum of disorders of FMS. So please, don't downplay the need for medication for migraines because you have your own theory of the origin of the pain. Chiropractic care helps a lot of people by doing more than just giving you exercises. Although it is not my treatment of choice, one shouldn't be discouraged from trying it – they may be surprised! I know you are trying to be supportive of others with your recommendations of treatments and theories, but please try not to be so opinionated. With FMS, there is more unknown than known – so it is very important for everyone to keep an open mind! Shari Ferbert On Jan 8, 2008 2:00 PM, nadine redman < nlraccount > wrote:> I have pain too, along with arthritis in both knees, hands, fingers, > feet, and lower back. My neck and back, hips, and shoulders hurt on a

daily> basis. Most days after being on my feet at work my heels just scream at> me. I am on Lyrica, Effexor, Seroquil, Synthroid (did everyone know that> most people with Fibro have Thyroid issues?) I also have high BP so I take> Accupril for that. Anyway, my husband is a Physical Therapy Assistant, and > let me tell you what helps tremendously. There are a few things......1st is> a trigger point massage, hurts like hell, but afterwards your body feels> amazing. 2nd heat.....moist heat only. Homemade rice bags are great, and > so are the Chammomile and Lavender wraps from Kohls. 3rd a Paraffin wrap on> your hands and feet. You can find the Paraffin machines at Wal-Mart, Kohls,> Macys, and Meijer stores. That does wonders for hands that hurt and feet > that won't stop throbbing. 4th water aerobics or just walking around in a> heated swimming pool and doing exercises.> For the

person on all the meds......wow. You can become very addicted to> Vicodin, Percocet, etc.. Not to mention with that you build up a> tolerance. It in no way helps Fibromyalgia pain, only normal muscle pain> after injury/surgery. Why are you on Imitrex? For the headaches? Does it > help? Honestly most people with Fibro that have the extreme headaches is> because of the knotted muscles in our necks and upper backs and shoulders.> Try a good massage therapist. They would be a heck of a lot less expensive > than all the medication your on. Chiropractors only help if they give you> the exercises to strengthen the weak areas they keep working on. Yes, pain> is a daily part of all of our lives. Some days are worse than others. I > think a lot of times we expect to have a pain free existance, and well, that> isn't going to happen. I think accepting that has helped me out> tremendously because just

accepting that has focused me to living with it > and working with it. There are also doctors that are pain specialists that> some go to. I personally haven't been to one, but there is that help out> there too. Hang in there!!!!!!!!!!! We know how you feel!!!! > Nadine>> Never miss a thing. Make your homepage. -- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic

pain!Ask about The Purrfect Petsitter and Infinite Creations!

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

January 14, 2008

Nadine, I have both RA & FMS. I have done a lot with supplements to help myself. But, for the RA I did the antibiotic treatment that is found on Roadback.org. that was about 10 years ago and I am doing well. Now I take Cetyl Mistroleate (CMO) which is very helpful for me. I also take Monolaurin for the muscle stiffness which helps me. Now I am experimenting with Olive Leaf Extract and am doing very well. I am not one for a lot of narcotics. you can email me personally if you would like to find out more. Elaine (epratt72) nadine redman <nlraccount@...> wrote: Why can't we stop beating a dead horse? I just feel strongly about the non-use of narcotics. I'm not judging, please stop thinking that. I'm a very open, caring, extremely loving person that has Fibro and RA. Why is everyone focusing on one thing? I'm sorry I brought different solutions to air, to give people something to think about. Is that wrong? I'm not a person that is content letting this disease change my life, so maybe I come across strong, but it's only because I'm angry at the disease. Please stop. Nadine Pam Horne <pmarshallnc (DOT) rr.com> wrote: Whitney, Very well said. Pam Re: SHARI] what works for one is not for everyone Nadine,To me and I'm sure Shari as well, and anyone else not speaking up, you seem to have a lot of biased information. I know about placebo tests and I've been the guinea pig for many of them. I have Fibromyalgia (which makes me sick from heat + humidity, makes me sick from too much stress or when I push myself to do too much, makes me susceptible to coming down with weird ailments and makes me severely fatigued and nauseous; on top of severe Myofascial Pain, where I believe 75% or more of my severe pain originates. I believe that someday I will be treated and cured. I don't like to see someone post that there is no cure for Fibro. Sure, not right now but who's to say that won't be a fact in 10 years. I am of the belief that if you want something to happen, it is possible to make it happen by positive thinking. Also, there is new evidence out that suggests that narcotics are VERY helpful for those with all kinds of chronic

illnesses, Fibromyalgia is now included in that. I read medical journals, Pain Management journal - specifically so I can keep up on new medications and the like, new things I can try through my own doctor so I get access to the latest research and this is new as of late last year. Fortunately my doctor believes that the only way I'm able to come to his office every 2 months is because of the pain regimen that I am on, including 3 pain medications. I now that many doctors just hand out drugs and do nothing else but I also think that people who are on this list want to be as educated as possible and we always suggest that people get second opinions, especially when it comes to treatments - to not only rely on the medications but also try other alternative therapies. You say that narcotics can do damage over time - well so can others like Neurontin, Lyrica, anti-depressants included. Every single drug has it's risk, especially when you're talking about a certain group in the

population that is super sensitive to drug side effects. If people take their meds correctly, most likely they will be okay. It's when people self-medicate without prior permission and mess with their dosages that they get into trouble. So please don't give them impression to those that may not be as educated as others on this group, that narcotics are bad and and in your opinion or your doctor's opinion don't work for FM. I sincerely believe that those who are on them, really need them!! Also, there is still no evidence that Fibromyalgia is an auto-immune disorder. It was thought once that it was but there's still no evidence of that. I really wish that you would just make suggestions to people and not bash those who really truly need whatever meds they are on - that is what it feels like you're doing. Everyone with this disease is so different - so what works for you, probably won't work for me. I need my pain meds and yes, I'm on pretty powerful pain

medications but it gets me out of my house. also, I was born into a family susceptible to the so called 'addictive personality'. I've seen it affect everyone in my family and I too have a major in psychology and over the years of studying it, with my own experiences with alcohol and medications, I don't believe that if you have the gene, that you're automatically going to be addicted to anything you try. I have proof of myself not becoming hooked on things that my parents or my brother is hooked on. I think it's more about mind over body. I personally don't like getting drunk and I hardly drink now with all the meds I'm on, unless I go wine tasting or something fun like that. But I've never felt that 'pull' towards taking more to get high or enjoying that experience. Yes, the meds that I am on give me great amounts of relief. Plus with the extended released ones, they help tremendously. So please just be more open-minded and realize that everyone has their own unique

experiences. Whitney On Jan 11, 2008 1:11 PM, nadine redman <nlraccount > wrote: Shari, I'm not trying to be opinionated as you suggest. Unfortunately I have seen many, many people on narcotics and yes, you may mentally become addicted and physically become addicted. What is interesting is in those that "had to have the pain pills" the relief they had when indeed they were given a "placebo." Very, very interesting. Obviously there are those out there that really felt relief from the narcotics and no relief from the placebo, but an interesting number of patients have been know to "fail" the test. Any

comments on that? I'm just saying it's not good to be on the narcotics if you don't have to be. They can do a lot of harm to your body in the long run. I guess it's what one figures to be the lesser of the two evils. I am not down playing the role of medication to help Fibromyalgia. However, I have seen too much of doctors giving out prescriptions because they don't know what else to do. Let's face it, medications can be good, or can complicate an already complicated autoimmune disease. I have a bit of medical knowledge (I have been through Human Anatomy/Physiology courses, Pathophysiology courses, Psychology courses, Nursing courses, Organic chemistry, etc..) on my way to a degree before life changing events this past year that lead to a huge change in my Fibromyalgia. My husband is a Licensed Physical Therapy Associate and has close contacts

with Doctors in the Orthopedic realm. I was just recently diagnosed (December) with beginnings of Rheumatoid Arthritis as well. The pool suggestion, Lyrica, and the fact that narcotics don't work for Fibro pain came from a very knowledgeable Rheumatologist. Other information was suggested by my family doctor who is above and beyond amazing! I don't just say things to say things. Sure, not everyone is the same, nor responds the same to the same treatments, but we all suffer from the same symptoms. I have many days that it takes a few hours to get out of bed and get motivated, so don't judge me. There are people with Fibro that do holistic care as well, and that works for them. I also mentioned pain specialists, and you made no remark on that. I only wrote what works for me! Plus I do know for a fact that UNLESS a Chiropractor puts you back in

place AND gives you exercises to help your weak areas, it is nothing more than a quick fix, a band-aid on a wound so to say. I'm not saying Chiropractors are bad, and yes, they do help some people....I'm just saying make it a good Chiropractor, and those are the ones that give you exercises as well. Have you ever tried non weight bearing strengthing exercises? Have you ever tried non-resistance exercise? Have you ever tried toning exercises with an exercise ball? Have you ever tried stretching exercises? Ever try Pilates or Yoga? To put all exercise in a box and label it as such is doing an extreme injustice to those who may be helped by different forms of such. Ice does help when it is pain from arthritis, so do cold compresses. Lavender oil has made a lot of people's migranes go away, and relax them into sleep. So smells bother you, that's ok, but it does work for a lot of other

people. Peppermint oil has helped many with inflammation, however if you have high blood pressure, you need to be careful because it can raise your blood pressure. I'm glad you're involved with the different groups, but please don't find people necessarily opinionated because there are things you don't agree with. That seems to be close minded, and not a help to anyone. Nadine "christina h." <christina-777sbcglobal (DOT) net > wrote: THIS IS SO TRUE ABOUT WHAT WORKS FOR ONE, MAY NOT WORK FOR SOMEONE ELSE AND IF IT DOES WORK, IT MAY LAST FOR A SHORT SEASON. I COULD NOT DO EXERCISE OR WATER AEROBICS. I PREFER HEAT IN CERTAIN AREAS AND ICE IN OTHERS. MASSAGE HELPS ME AND CHIROPRACTICERS DO NOT. WE ARE UNIQUELY MADE AND NONE ALIKE TO HAVE US BE PUT INTO A COOKIE CUTTER WHEN TREATMENT IS CONCERNED. I WISH IT WAS THAT EASY.Shari Ferbert <shari23comcast (DOT) net> wrote: Nadine, Regarding your post about medications and treatments, I have to comment on a few things you said to remind people of the need to be open minded when it comes to treatments for

FMS. I have tried things that I never thought I would, or didn't really think would work, but needed to do it just so I could say I tried everything. First, I am sorry you have so much pain and I am glad that you have found some things that work for you. I have degenerative arthritis everywhere which has resulted in 2 surgeries so far, along with my FMS, CFS and other random problems ( i.e. meningitis 4 times) – so I know a lot about FMS pain, arthritis pain, surgery pain and headache pain. I know that you are trying to help and you have made some good points; but, using myself as an example, your steps 1-4 below do not represent a treatment regiment that is good for everyone. 1st trigger point massage… if I have a deep massage like

that I would be in a flare for a week, not to mention the muscle spasms I get when being pressed on like that. There are other types of gentle P/T and massage however, that do work for me. 2nd: Moist heat is good for some people, but ice works better for others because of potential swelling. If it can be tolerated, alternating heat and ice is good too. A heated, scented bag (rice bag, lavender, etc) makes me sick to my stomach. I do not tolerate many smells, and am allergic to some of the chemicals in the aroma therapy heat packs. 4th: You are right, water aerobics is good for many people, me included. But, many people cannot even get out of bed let alone go to a facility with a pool and get into a bathing suit to swim. I run an on-line FM support group, and we have had some very heated discussions about exercise. We came to the conclusion that some people just cannot tolerate exercise – period.

Also, for people with CFS and ME, exercise can even be dangerous. Your comments about medications come across as being very judgmental: "It in no way helps Fibromyalgia pain, only normal muscle pain after injury/surgery." I take pain medication and it is what keeps me off of the couch. I personally take offense to that comment. Whitney made a very good point about the difference between being emotionally addicted and physically addicted to narcotics, and I am sure Dominie has something in her newsletter archives about the subject as well. The theory about the headaches being caused by tight muscles may be true for some people, but over half of the people with FMS suffer with migraines, which is a separate, diagnosable condition within the CSS spectrum of disorders of FMS. So please, don't downplay the need for medication for migraines because you have your own theory of the origin of the pain.

Chiropractic care helps a lot of people by doing more than just giving you exercises. Although it is not my treatment of choice, one shouldn't be discouraged from trying it – they may be surprised! I know you are trying to be supportive of others with your recommendations of treatments and theories, but please try not to be so opinionated. With FMS, there is more unknown than known – so it is very important for everyone to keep an open mind! Shari Ferbert On Jan 8, 2008 2:00 PM, nadine redman < nlraccount > wrote:> I have pain too, along with arthritis in both knees, hands, fingers, > feet, and lower back. My neck and back, hips, and shoulders hurt on a daily> basis. Most days after being on my feet at work my heels just scream at> me. I am on Lyrica, Effexor, Seroquil, Synthroid (did

everyone know that> most people with Fibro have Thyroid issues?) I also have high BP so I take> Accupril for that. Anyway, my husband is a Physical Therapy Assistant, and > let me tell you what helps tremendously. There are a few things......1st is> a trigger point massage, hurts like hell, but afterwards your body feels> amazing. 2nd heat.....moist heat only. Homemade rice bags are great, and > so are the Chammomile and Lavender wraps from Kohls. 3rd a Paraffin wrap on> your hands and feet. You can find the Paraffin machines at Wal-Mart, Kohls,> Macys, and Meijer stores. That does wonders for hands that hurt and feet > that won't stop throbbing. 4th water aerobics or just walking around in a> heated swimming pool and doing exercises.> For the person on all the meds......wow. You can become very addicted to> Vicodin, Percocet, etc.. Not to mention with that you build up a>

tolerance. It in no way helps Fibromyalgia pain, only normal muscle pain> after injury/surgery. Why are you on Imitrex? For the headaches? Does it > help? Honestly most people with Fibro that have the extreme headaches is> because of the knotted muscles in our necks and upper backs and shoulders.> Try a good massage therapist. They would be a heck of a lot less expensive > than all the medication your on. Chiropractors only help if they give you> the exercises to strengthen the weak areas they keep working on. Yes, pain> is a daily part of all of our lives. Some days are worse than others. I > think a lot of times we expect to have a pain free existance, and well, that> isn't going to happen. I think accepting that has helped me out> tremendously because just accepting that has focused me to living with it > and working with it. There are also doctors that are pain specialists that> some go

to. I personally haven't been to one, but there is that help out> there too. Hang in there!!!!!!!!!!! We know how you feel!!!! > Nadine>> Never miss a thing. Make your homepage. -- Eat, sleep, dream and be the music!Life is short, live each day to its' fullest!Cave softly and leave no trace.Find a cure for chronic pain!Ask about The Purrfect Petsitter and Infinite Creations! Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Looking for last minute shopping deals? Find them fast with Search.

Sign In

Re: SHARI] what works for one is not for everyone

Recommended Posts

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Join the conversation

Activity