Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Hi , I'm jim, welcome to the list. I may not be much help so I hope someone else responds also. You might want to ask your doctor to check you for fibromyalgis. It is pretty easy for a doctor to do. There are 18 pressure points, if light pressure produces pain in 11 or more of these you may have fibro. People with fibro often have extreme fatigue, some people think fibro and CFS are 2 forms of the same problem. If your doctor doesn't want to discuss chronic fatigue and fibromyalgia seriously with you, then you might want to consider a different doctor, he is getting paid big bucks, he should be able to do his job. When I went to my doctor I told how much I hurt and where and it was his job to find out why. I have fibro and osteoarthritis, I think my osteo is my major problem. You sound like your symptoms are severe, there are meds that will help. I don't know much about CFS, but, for fibro there are other things that help a lot, such as stress reduction. Keep us informed, we will be anxious to hear how you are doing and what the doctor said. If I can help you find answers, please ask, I'll be glad to help any I can. jim > Good Evening, > I just joined the list today but thought I'd introduce myself > right away. :-) > > My name is . I am a 34 year old nurse in Ohio (married > with five > kids---two of my own, three stepkids---four of the kids live > with us full > time) and have had symptoms of CFS for almost 3 years now. For > about six > months, I was diagnosed with sero-negative lupus. My GP finally > sent me to a > rheumatologist who said it definitely was *not* lupus but > instead thought it > was cryoglobulinemia (this was later confirmed). > > I have had quite a ride since I was diagnosed in 2000. I have > had many > symptoms that my rheumy has said are totally unrelated to cryo. > The two that > bother me the most are the fatigue and cognitive difficulties. > > Off and on, depending on if I am in a " flare " , I get to the > point where I > cannot even find the words I want to say, I have a tough time > with math (I am > a junior in college majoring in Biology---my symptoms have been > flaring since > April and in my math class, I spent about five minutes trying to > figure out > the square root of 9!), my short term memory goes and I feel > like a > zombie---cannot concentrate at all. The fatigue is so > overwhelming that I > will sleep upward of 16 hours a day. > > Never having any experience with CFS, I assumed my symptoms were > from my > cryoglobulins. My rheumy said no---pretty much chalked all the > cognitive > difficulties to the joint pain---said the pain was probably so > intense that > it affected my ability to think. I went along with that but > after almost 3 > years of this (and 2 years after my cryo diagnosis), I think my > rheumy is > full of it. I called him two weeks ago, out of > desperation---sleeping all the > time, unbearable pain, having problems because of my memory, > etc. He did not > take any of my complaints seriously. > > Well, I see this doctor first thing tomorrow morning and I am > going armed > with as much info on CFS as I can find. I honestly think he does > not believe > CFS really exists. > > Out of a list of symptoms on a webpage about CFS, I have all of > the > following: > > Fatigue/exhaustion > headache > malaise > memory loss (short term memory) > muscle pain > joint pain > difficulty concentrating > lack of refreshing sleep > weakness > balance disturbance > blurring of vision > numbness in extremties > flushing rash of cheeks > tender lymph nodes > periodic sore throat without any known cause > > Who knows if he will diagnose me with CFS---he has pretty much > made it clear > he thinks it is all in my head (tell that to my hubby who has > witnessed this > stuff). > > Anyway, just looking to network and find support (and give > support) to others > with the same symptoms and problems. I do not even know how to > begin to deal > with this. I have had to go on inactive duty with my employer > because I > cannot stand to do a full shift---the fatigue has become > debilitating. > > Any advice on how to begin to deal with this? Any advice on how > to deal with > my doctor? > > Thanks, > -- ÐÏࡱá Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 > Any advice on how to begin to deal with this? Any advice on how to deal > with > my doctor? If you have a doctor that is not validating your pain, your fatigue, and how horrible you feel, I would change doctors. I have too many doctors that have passed off my symptoms - saying it was my weight, or I was not getting enough sleep, one even called me a hypochondriac. I finally found a rheumatologist that treats FM and CFS and understands how I feel. He is a bit frustrated with me, since I have not been able to tolerate any of the meds he had prescribed for me. He hasn't given up on me yet, but I am always hesitant trying something new. It is doubtful that you can change the mind of a doctor...the next best thing is to change doctors to someone what understands and listens to you when you talk. Good luck!! Koala-t hugs, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 > Any advice on how to begin to deal with this? Any advice on how to deal > with > my doctor? If you have a doctor that is not validating your pain, your fatigue, and how horrible you feel, I would change doctors. I have too many doctors that have passed off my symptoms - saying it was my weight, or I was not getting enough sleep, one even called me a hypochondriac. I finally found a rheumatologist that treats FM and CFS and understands how I feel. He is a bit frustrated with me, since I have not been able to tolerate any of the meds he had prescribed for me. He hasn't given up on me yet, but I am always hesitant trying something new. It is doubtful that you can change the mind of a doctor...the next best thing is to change doctors to someone what understands and listens to you when you talk. Good luck!! Koala-t hugs, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/12/02 11:46:19 PM Eastern Daylight Time, gimpy@... writes: > People with fibro often have extreme fatigue, some people think > fibro and CFS are 2 forms of the same problem. > If your doctor doesn't want to discuss chronic fatigue and > fibromyalgia seriously with you, then you might want to consider > a different doctor, he is getting paid big bucks, he should be > able to do his job. > > Thank you for the welcome Jim. I don't know a whole lot (well, really not anything) about FM. Can someone tell me what it is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/13/02 8:11:21 AM Eastern Daylight Time, catstamp@... writes: > Ok, what exactly is cryoglobulinemia? > > > LOL...that was basically my first response when he told me he thought I had it. Cryoglobulinemia is a condition in which abnormal proteins (cryoglobulins) are in the blood plasma. These proteins gel up when the temperature changes and causes problems such as raynaud's phenomenon, kidney disease, heart problems, vasculitis---they can eventually lead to stroke and various cancers. Approx. 50% of people with Hep C have cryoglobulinemia (I have tested negative for it). <<< >>> Well, as of right now, I take 400 mg Ibuprofen twice a day, Darvocet as needed, Flexeril as needed, a multivitamin once a day. I have been on numerous anti-inflammatories with little success----Vioxx, Relafen, Mobic, Bextra, Lodine, Daypro---he now wants to try me on Clinoril and Zanflex. I am leery about trying new anti-inflammatories. I have spent hundreds of dollars on all of the above and either they provide very little relief or I have had side effects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/13/02 8:11:21 AM Eastern Daylight Time, catstamp@... writes: > Ok, what exactly is cryoglobulinemia? > > > LOL...that was basically my first response when he told me he thought I had it. Cryoglobulinemia is a condition in which abnormal proteins (cryoglobulins) are in the blood plasma. These proteins gel up when the temperature changes and causes problems such as raynaud's phenomenon, kidney disease, heart problems, vasculitis---they can eventually lead to stroke and various cancers. Approx. 50% of people with Hep C have cryoglobulinemia (I have tested negative for it). <<< >>> Well, as of right now, I take 400 mg Ibuprofen twice a day, Darvocet as needed, Flexeril as needed, a multivitamin once a day. I have been on numerous anti-inflammatories with little success----Vioxx, Relafen, Mobic, Bextra, Lodine, Daypro---he now wants to try me on Clinoril and Zanflex. I am leery about trying new anti-inflammatories. I have spent hundreds of dollars on all of the above and either they provide very little relief or I have had side effects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/13/02 8:59:55 AM Eastern Daylight Time, kithain@... writes: > Do you > have IBS? Lack of deep sleep? Frequent urination? Muslce twitches, > etc? It might be worth checking out as well. Thank you . Let's see---I do have muscle twitches---sometimes so pronounced my hubby can see them. Frequent urination---yes. I can sleep 16 hours and feel like I have not had any sleep at all. As for IBS---I had my gallbladder removed years ago so it is hard to tell. Depending on what I eat, I can go back and forth so I don't know if it is just the lack of my gallbladder, IBS or both. I just got back from my visit---will write about it in a separate email. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/13/02 9:42:58 AM Eastern Daylight Time, bobbi@... writes: > Since fibromyalgia is now recognized by the American > Arthritis Foundation, most rheumy's are familiar with it,and can diagnose > it. > > Really? Wait until you all hear what my rheumy told me about FM and CFS this morning! I am changing doctors asap and I am sure you will understand why. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > rheumatologist who said it definitely was *not* lupus but instead thought it > was cryoglobulinemia (this was later confirmed). Ok, what exactly is cryoglobulinemia? > Off and on, depending on if I am in a " flare " , I get to the point where I > cannot even find the words I want to say, I have a tough time with math (I am > a junior in college majoring in Biology---my symptoms have been flaring since > April and in my math class, I spent about five minutes trying to figure out > the square root of 9!), my short term memory goes and I feel like a > zombie---cannot concentrate at all. The fatigue is so overwhelming that I > will sleep upward of 16 hours a day. This all sounds like the fibro fog that you find in fibromyalgia. CFS, and lupus often have the same kind of mental fog as can Sjogrens. > Well, I see this doctor first thing tomorrow morning and I am going armed > with as much info on CFS as I can find. I honestly think he does not believe > CFS really exists. My first rheumy I went to didn't believe in CFS. She did think I have fibro though. I have extreme fatigue all of the time (well most of it), but I don't want to sleep, I just feel like I got done running a 25 mile marathon. > Who knows if he will diagnose me with CFS---he has pretty much made it clear > he thinks it is all in my head (tell that to my hubby who has witnessed this > stuff). At this point, this doctor has basically told you it's all in your head, and he doesn't believe in CFS. Trust us, you aren't going to be getting any further with this guy. The best thing to do is move on and find another doctor that will help you. I know it isn't easy, I'm still looking for a rheumy, but you definitely aren't going to benefit from staying. > > Any advice on how to begin to deal with this? Tell us what you are doing or taking (medicines, vitamins, supplements) and then we can give you suggestions for what else to try. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > rheumatologist who said it definitely was *not* lupus but instead thought it > was cryoglobulinemia (this was later confirmed). Ok, what exactly is cryoglobulinemia? > Off and on, depending on if I am in a " flare " , I get to the point where I > cannot even find the words I want to say, I have a tough time with math (I am > a junior in college majoring in Biology---my symptoms have been flaring since > April and in my math class, I spent about five minutes trying to figure out > the square root of 9!), my short term memory goes and I feel like a > zombie---cannot concentrate at all. The fatigue is so overwhelming that I > will sleep upward of 16 hours a day. This all sounds like the fibro fog that you find in fibromyalgia. CFS, and lupus often have the same kind of mental fog as can Sjogrens. > Well, I see this doctor first thing tomorrow morning and I am going armed > with as much info on CFS as I can find. I honestly think he does not believe > CFS really exists. My first rheumy I went to didn't believe in CFS. She did think I have fibro though. I have extreme fatigue all of the time (well most of it), but I don't want to sleep, I just feel like I got done running a 25 mile marathon. > Who knows if he will diagnose me with CFS---he has pretty much made it clear > he thinks it is all in my head (tell that to my hubby who has witnessed this > stuff). At this point, this doctor has basically told you it's all in your head, and he doesn't believe in CFS. Trust us, you aren't going to be getting any further with this guy. The best thing to do is move on and find another doctor that will help you. I know it isn't easy, I'm still looking for a rheumy, but you definitely aren't going to benefit from staying. > > Any advice on how to begin to deal with this? Tell us what you are doing or taking (medicines, vitamins, supplements) and then we can give you suggestions for what else to try. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi , Welcome to the group. You've come to the right place, if you're looking for info on either CFS or Fibro. I'm sure by now several people have answered some of your questions. My advice to you is, if your doctor still won't take you seriously after this next visit, find another doctor! These symptoms are not in your head, and you have a right to have treatment. No one should suffer what we have to suffer. You might want to ask about Fibro as well as the CFS. It's my understanding that in CFS, the body and joint aches aren't as prevalent as the fatigue, and that it's vice versa in Fibro. Do you have IBS? Lack of deep sleep? Frequent urination? Muslce twitches, etc? It might be worth checking out as well. Take care, and welcome again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Jim wrote: >You might want to ask your doctor to check you for fibromyalgis...>> I'd also suggest that you go to a rheumatologist instead of an internist to get a diagnosis, too. Since fibromyalgia is now recognized by the American Arthritis Foundation, most rheumy's are familiar with it,and can diagnose it. good luck! Bobbi C. ---------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Jim wrote: >You might want to ask your doctor to check you for fibromyalgis...>> I'd also suggest that you go to a rheumatologist instead of an internist to get a diagnosis, too. Since fibromyalgia is now recognized by the American Arthritis Foundation, most rheumy's are familiar with it,and can diagnose it. good luck! Bobbi C. ---------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/13/02 2:31:11 PM Eastern Daylight Time, catstamp@... writes: > I'm pretty sure that's one test (cryoglobulins) that did come back > positive for me, but nobody seems to care about it. The neurologist > wanted to know what the rheumatologist thought about it, but she never > mentioned it. I asked my regular doctor about it, and she was suppose > to look it up and get back to me, but never has. Sigh.. > Darcy, My GP had never heard of it either and had to look it up. Unfortunately, there is not a whole lot written about it. I checked on the internet and there were thousands of pages but alot just contained the word and no real info. Or, many were on cryo and it's association to Hep C. There is a cryo support group on yahoo if you are interested. I know that several of the people on that group not only have cryo but also either FM or CFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/13/02 2:31:11 PM Eastern Daylight Time, catstamp@... writes: > I'm pretty sure that's one test (cryoglobulins) that did come back > positive for me, but nobody seems to care about it. The neurologist > wanted to know what the rheumatologist thought about it, but she never > mentioned it. I asked my regular doctor about it, and she was suppose > to look it up and get back to me, but never has. Sigh.. > Darcy, My GP had never heard of it either and had to look it up. Unfortunately, there is not a whole lot written about it. I checked on the internet and there were thousands of pages but alot just contained the word and no real info. Or, many were on cryo and it's association to Hep C. There is a cryo support group on yahoo if you are interested. I know that several of the people on that group not only have cryo but also either FM or CFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 In a message dated 6/13/02 2:31:11 PM Eastern Daylight Time, catstamp@... writes: > I'm pretty sure that's one test (cryoglobulins) that did come back > positive for me, but nobody seems to care about it. The neurologist > wanted to know what the rheumatologist thought about it, but she never > mentioned it. I asked my regular doctor about it, and she was suppose > to look it up and get back to me, but never has. Sigh.. > Darcy, My GP had never heard of it either and had to look it up. Unfortunately, there is not a whole lot written about it. I checked on the internet and there were thousands of pages but alot just contained the word and no real info. Or, many were on cryo and it's association to Hep C. There is a cryo support group on yahoo if you are interested. I know that several of the people on that group not only have cryo but also either FM or CFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 > > > ---he now wants to try me on Clinoril and Zanflex. > > I am leery about trying new anti-inflammatories. I have spent hundreds of > dollars on all of the above and either they provide very little relief or I > have had side effects. > > > , Not many of us have had any luck with anti-inflammatories. As for the Zanaflex, that's a muscle relaxant, so maybe you will have better luck with it. A lot of people in this group use muscle relaxants to great effect. You also asked what fibro is. Fibro is very similar to CFS. You have very achy joints and muscles, and tend to be in a mental fog most of the time. There are many " side diseases " that go along with, or make up fibro. Irritable Bowel Syndrome, Sleep Disorders-the main one being unrestful sleep. We can't get into Stage 4 sleep-, Headaches, urinary problems, visual problems, fatigue, depression, TMJ, etc. the list goes on and on. Like I said in a previous post, I read somewhere that the main difference between CFS and Fibro is that in CFS, the fatigue is much worse than the pain, and in Fibro, the pain is much worse than the fatigue. Fibro acts up in flares. You might go along at a certain level of pain for years, and then something sets it off, and you'll be in agony for days, weeks, months, even years. Things that set it off include too much exercise, stress, weather and climate changes, and for all we know, a full moon(just joking). When a Rheumatologist tests for Fibro, they will first eliminate all other possibilities(Lupus, Lime, etc.). They will ask you a lot of questions about past problems, check your flexability, and do a pressure point test. Or tneder points. Sorry. They check 18 different points, bilaterally, shoulders, hips, knees, etc. Fibro sufferers all have some or all of these tender points. Slight pressure causes pain in these spots, and the pain might linger for days. Now, my shoulder and neck spots are so continually tneder, that I have to watch how heavy my shirts are. If they press too hard, or hang wrong, just that can have me in agony all day. Anyway, I hope this helps you out a little. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 > > > ---he now wants to try me on Clinoril and Zanflex. > > I am leery about trying new anti-inflammatories. I have spent hundreds of > dollars on all of the above and either they provide very little relief or I > have had side effects. > > > , Not many of us have had any luck with anti-inflammatories. As for the Zanaflex, that's a muscle relaxant, so maybe you will have better luck with it. A lot of people in this group use muscle relaxants to great effect. You also asked what fibro is. Fibro is very similar to CFS. You have very achy joints and muscles, and tend to be in a mental fog most of the time. There are many " side diseases " that go along with, or make up fibro. Irritable Bowel Syndrome, Sleep Disorders-the main one being unrestful sleep. We can't get into Stage 4 sleep-, Headaches, urinary problems, visual problems, fatigue, depression, TMJ, etc. the list goes on and on. Like I said in a previous post, I read somewhere that the main difference between CFS and Fibro is that in CFS, the fatigue is much worse than the pain, and in Fibro, the pain is much worse than the fatigue. Fibro acts up in flares. You might go along at a certain level of pain for years, and then something sets it off, and you'll be in agony for days, weeks, months, even years. Things that set it off include too much exercise, stress, weather and climate changes, and for all we know, a full moon(just joking). When a Rheumatologist tests for Fibro, they will first eliminate all other possibilities(Lupus, Lime, etc.). They will ask you a lot of questions about past problems, check your flexability, and do a pressure point test. Or tneder points. Sorry. They check 18 different points, bilaterally, shoulders, hips, knees, etc. Fibro sufferers all have some or all of these tender points. Slight pressure causes pain in these spots, and the pain might linger for days. Now, my shoulder and neck spots are so continually tneder, that I have to watch how heavy my shirts are. If they press too hard, or hang wrong, just that can have me in agony all day. Anyway, I hope this helps you out a little. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > Cryoglobulinemia is a condition in which abnormal proteins > (cryoglobulins) are in the blood plasma. These proteins gel up when the > temperature changes and causes problems such as raynaud's phenomenon, kidney > disease, heart problems, vasculitis---they can eventually lead to stroke and > various cancers. I'm pretty sure that's one test (cryoglobulins) that did come back positive for me, but nobody seems to care about it. The neurologist wanted to know what the rheumatologist thought about it, but she never mentioned it. I asked my regular doctor about it, and she was suppose to look it up and get back to me, but never has. Sigh.. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > Cryoglobulinemia is a condition in which abnormal proteins > (cryoglobulins) are in the blood plasma. These proteins gel up when the > temperature changes and causes problems such as raynaud's phenomenon, kidney > disease, heart problems, vasculitis---they can eventually lead to stroke and > various cancers. I'm pretty sure that's one test (cryoglobulins) that did come back positive for me, but nobody seems to care about it. The neurologist wanted to know what the rheumatologist thought about it, but she never mentioned it. I asked my regular doctor about it, and she was suppose to look it up and get back to me, but never has. Sigh.. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 mboulis@... wrote: > Cryoglobulinemia is a condition in which abnormal proteins > (cryoglobulins) are in the blood plasma. These proteins gel up when the > temperature changes and causes problems such as raynaud's phenomenon, kidney > disease, heart problems, vasculitis---they can eventually lead to stroke and > various cancers. I'm pretty sure that's one test (cryoglobulins) that did come back positive for me, but nobody seems to care about it. The neurologist wanted to know what the rheumatologist thought about it, but she never mentioned it. I asked my regular doctor about it, and she was suppose to look it up and get back to me, but never has. Sigh.. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 , Your comments are very helpful. I appreciate your input and sharing. Char kithain wrote: > > > ---he now wants to try me on Clinoril and Zanflex. > > > > I am leery about trying new anti-inflammatories. I have spent > hundreds of > > dollars on all of the above and either they provide very little > relief or I > > have had side effects. > > > > > > > > , > > Not many of us have had any luck with anti-inflammatories. As for the > Zanaflex, that's a muscle relaxant, so maybe you will have better > luck with it. A lot of people in this group use muscle relaxants to > great effect. You also asked what fibro is. Fibro is very similar to > CFS. You have very achy joints and muscles, and tend to be in a > mental fog most of the time. There are many " side diseases " that go > along with, or make up fibro. Irritable Bowel Syndrome, Sleep > Disorders-the main one being unrestful sleep. We can't get into Stage > 4 sleep-, Headaches, urinary problems, visual problems, fatigue, > depression, TMJ, etc. the list goes on and on. Like I said in a > previous post, I read somewhere that the main difference between CFS > and Fibro is that in CFS, the fatigue is much worse than the pain, > and in Fibro, the pain is much worse than the fatigue. Fibro acts up > in flares. You might go along at a certain level of pain for years, > and then something sets it off, and you'll be in agony for days, > weeks, months, even years. Things that set it off include too much > exercise, stress, weather and climate changes, and for all we know, a > full moon(just joking). > > When a Rheumatologist tests for Fibro, they will first eliminate all > other possibilities(Lupus, Lime, etc.). They will ask you a lot of > questions about past problems, check your flexability, and do a > pressure point test. Or tneder points. Sorry. They check 18 different > points, bilaterally, shoulders, hips, knees, etc. Fibro sufferers all > have some or all of these tender points. Slight pressure causes pain > in these spots, and the pain might linger for days. Now, my shoulder > and neck spots are so continually tneder, that I have to watch how > heavy my shirts are. If they press too hard, or hang wrong, just that > can have me in agony all day. > > Anyway, I hope this helps you out a little. Take care. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 , Your comments are very helpful. I appreciate your input and sharing. Char kithain wrote: > > > ---he now wants to try me on Clinoril and Zanflex. > > > > I am leery about trying new anti-inflammatories. I have spent > hundreds of > > dollars on all of the above and either they provide very little > relief or I > > have had side effects. > > > > > > > > , > > Not many of us have had any luck with anti-inflammatories. As for the > Zanaflex, that's a muscle relaxant, so maybe you will have better > luck with it. A lot of people in this group use muscle relaxants to > great effect. You also asked what fibro is. Fibro is very similar to > CFS. You have very achy joints and muscles, and tend to be in a > mental fog most of the time. There are many " side diseases " that go > along with, or make up fibro. Irritable Bowel Syndrome, Sleep > Disorders-the main one being unrestful sleep. We can't get into Stage > 4 sleep-, Headaches, urinary problems, visual problems, fatigue, > depression, TMJ, etc. the list goes on and on. Like I said in a > previous post, I read somewhere that the main difference between CFS > and Fibro is that in CFS, the fatigue is much worse than the pain, > and in Fibro, the pain is much worse than the fatigue. Fibro acts up > in flares. You might go along at a certain level of pain for years, > and then something sets it off, and you'll be in agony for days, > weeks, months, even years. Things that set it off include too much > exercise, stress, weather and climate changes, and for all we know, a > full moon(just joking). > > When a Rheumatologist tests for Fibro, they will first eliminate all > other possibilities(Lupus, Lime, etc.). They will ask you a lot of > questions about past problems, check your flexability, and do a > pressure point test. Or tneder points. Sorry. They check 18 different > points, bilaterally, shoulders, hips, knees, etc. Fibro sufferers all > have some or all of these tender points. Slight pressure causes pain > in these spots, and the pain might linger for days. Now, my shoulder > and neck spots are so continually tneder, that I have to watch how > heavy my shirts are. If they press too hard, or hang wrong, just that > can have me in agony all day. > > Anyway, I hope this helps you out a little. Take care. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 , Your comments are very helpful. I appreciate your input and sharing. Char kithain wrote: > > > ---he now wants to try me on Clinoril and Zanflex. > > > > I am leery about trying new anti-inflammatories. I have spent > hundreds of > > dollars on all of the above and either they provide very little > relief or I > > have had side effects. > > > > > > > > , > > Not many of us have had any luck with anti-inflammatories. As for the > Zanaflex, that's a muscle relaxant, so maybe you will have better > luck with it. A lot of people in this group use muscle relaxants to > great effect. You also asked what fibro is. Fibro is very similar to > CFS. You have very achy joints and muscles, and tend to be in a > mental fog most of the time. There are many " side diseases " that go > along with, or make up fibro. Irritable Bowel Syndrome, Sleep > Disorders-the main one being unrestful sleep. We can't get into Stage > 4 sleep-, Headaches, urinary problems, visual problems, fatigue, > depression, TMJ, etc. the list goes on and on. Like I said in a > previous post, I read somewhere that the main difference between CFS > and Fibro is that in CFS, the fatigue is much worse than the pain, > and in Fibro, the pain is much worse than the fatigue. Fibro acts up > in flares. You might go along at a certain level of pain for years, > and then something sets it off, and you'll be in agony for days, > weeks, months, even years. Things that set it off include too much > exercise, stress, weather and climate changes, and for all we know, a > full moon(just joking). > > When a Rheumatologist tests for Fibro, they will first eliminate all > other possibilities(Lupus, Lime, etc.). They will ask you a lot of > questions about past problems, check your flexability, and do a > pressure point test. Or tneder points. Sorry. They check 18 different > points, bilaterally, shoulders, hips, knees, etc. Fibro sufferers all > have some or all of these tender points. Slight pressure causes pain > in these spots, and the pain might linger for days. Now, my shoulder > and neck spots are so continually tneder, that I have to watch how > heavy my shirts are. If they press too hard, or hang wrong, just that > can have me in agony all day. > > Anyway, I hope this helps you out a little. Take care. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Hi Pat! this is a great group...so far I have only lurked a bit, but the support here is unbelievable!! Welcome! R > Hi, > > My name is (Pat) and I am a new member to the group...thanks > for inviting me! I am almost 49 years old and live in Newark, Delaware. I > am married and have 3 children and 2 grandchildren. I teach high school > English and 7th grade math at a local Christian school. > > I feel that I have had FM for a number of years but am just currently being > diagnosed. I have ~90% of the symptoms and the pain varies in intensity but > is almost always there. I currently take Ambien and Trazedone for sleep, > guafeniscen for overall symptoms and Vioxx for osteoarthritis. I also take > Synthroid, Glucophage, Zestoretic, Allegra, and 2 types of inhalers. I > occasionally take Bentyl for stomach spasms and Vicodan for pain. > > I know that one of my biggest problems is lack of exercise but I am always so > sore and so tired that I never truly get started on a regimen and stick with > it. I am also seriously overweight. My doctor has strongly recommended > water exercises but it is just finding the facilities and the money to make > it happen. > > I am looking forward to making a lot of friendships here, and learning much > to help in the management of my FM. I also am here for support for > others....so email me any time! > > Hugs, > Pat Quote Link to comment Share on other sites More sharing options...
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