LADIES] what works for one is not for everyone

[Guest guest]

THANK YOU FOR ALL COMMENTS, BUT PLEASE LET US DISCUSS IN LOVE AND COMPASSION. MANY THINGS CAN AND OFTEN DO WORK FOR ONE PERSON AND THEN SOMETIMES IT DOESN'T. WE CAN BENEFIT FROM HEARING OF NEW THINGS. ALSO SOME OF US HAVE SUFFERED SO LONG THAT WE JUST ARE AFRIAD TO TRY THE NEWEST TREATMENT ON THE BLOCK. IT HELPS TO HEAR OTHERS SHARE WHAT WORKS AND DOESN'T WORK, BUT LET'S REMEMBER THAT WE SHOULDN'T EXPECT OTHERS TO FEEL THE SAME WAY. CHRISTINAWhitney <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!

[Guest guest]

Yes! Thank you, . I ask all members of my message

board be respectful and kind in their posts. The purpose of this

group is to give my newsletter readers a place to connect with others

who understand this illness. Everyone in our group is suffering to

some degree, so we don't need additional stress coming from those to

whom we have turned to for support. We all have differing opinions

because this is a confusing illness, but ABOVE ALL, I want my support

group to be a kind and caring place. It is not about who

is " right. " Thank you for maintaining a loving spirit in your

posts. I'm working hard on the next newsletter for everyone - hope

to send it out this weekend!

Dominie

http://www.fms-help.com

>

> > 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

> >

> >

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> ---------------------------------

> 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!

>