i was Dx'd with FMS 13 years ago, but had been reading up on it and found that if it had been a long time since Dx, it would be wise to have the Dx confirmed, in case there was something else going on...so yesterday i finally had an appointment with a fibromyalgia clinic 2 hours from home that i had waited 10 months for
if i'm being honest i think deep down i had hoped the dr. would NOT confirm the Dx, that maybe something else was wrong, as this Dx feels so hopeless to me, but of course, it was strongly confirmed
i told the dr. that i had hoped cpap would address some of the issues with FMS and it hadn't, but he told me that's almost never the case with a true FMS Dx, and that even if my cpap is doing it's job, the fact remains that FMS patients just don't get restorative sleep, because of inability to enter stage 4 sleep
the fact is that after 18 months on cpap and taking the PLMD meds for over a year, i'm still feeling like crap with widespread pain and general fatigue, so i guess it's time to look into additional options
i'm not into taking meds and try to avoid them whenever possible; i'm already on low dose requip for severe PLMD, and the idea of long term--in fact, indefinite--medicating is difficult for me; but he told me he'd be suggesting some medications to my GP in his report and i was wondering if anyone has any experience with them: neurtonin, tramadol, lyrica
thanks in advance
sharon
OT: anyone medicated for fibromyalgia?
-
sharon1965
- Posts: 1232
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- Location: Windsor, Ontario, Canada
OT: anyone medicated for fibromyalgia?
If you always do what you've always done, you'll always get what you've always got...
Re: OT: anyone medicated for fibromyalgia?
Sharon,
Hmmm.... 43 and you're not on maintenance drugs yet? I'd say you're the exception!! I'm sorry you didn't get the news you wanted yesterday. I hope that taking a pill-a-day will get you feeling fabulous.
Good Luck,
Cathy
Hmmm.... 43 and you're not on maintenance drugs yet? I'd say you're the exception!! I'm sorry you didn't get the news you wanted yesterday. I hope that taking a pill-a-day will get you feeling fabulous.
Good Luck,
Cathy
Re: OT: anyone medicated for fibromyalgia?
did they do this (from Wiki)?
Diagnosis
There is still debate over what should be considered essential diagnostic criteria. The difficulty with diagnosing fibromyalgia is that, in most cases, laboratory testing appears normal and that many of the symptoms mimic those of other rheumatic conditions such as arthritis or osteoporosis. In general, most doctors diagnose patients with a process called differential diagnosis, which means that doctors consider all of the possible things that might be wrong with you based on your symptoms, gender, age geographic location, medical history and other factors. They then narrow down the diagnosis down to the most likely one. The most widely accepted set of classification criteria for research purposes were elaborated in 1990 by the Multicenter Criteria Committee of the the American College of Rheumatology. These criteria, which are known informally as "the ACR 1990" define fibromyalgia according to the presence of the following criteria:
A history of widespread pain lasting more than three months—affecting all four quadrants of the body, i.e., both sides, and above and below the waist.
Tender points—there are 18 designated possible tender or trigger points (although a person with the disorder may feel pain in other areas as well). During diagnosis, four kilograms-force (39 newtons) of force is exerted at each of the 18 points; the patient must feel pain at 11 or more of these points for fibromyalgia to be considered.[113] Four kilograms of force is about the amount of pressure required to blanch the thumbnail when applying pressure.
This set of criteria was developed by the American College of Rheumatology as a means of classifying an individual as having fibromyalgia for both clinical and research purposes. While these criteria for classification of patients were originally established as inclusion criteria for research purposes and were not intended for clinical diagnosis, they have become the de facto diagnostic criteria in the clinical setting. It should be noted that the number of tender points that may be active at any one time may vary with time and circumstance.
someday science will catch up to what I'm saying...
Re: OT: anyone medicated for fibromyalgia?
I'd go get a massage and see how painful it is
But you know I take an aspirin (325mg) daily for stroke prevention and have done so for past 8 years. Yes there is risk of increased bleeding and ulcers by taking aspirin but you have to weight the risk with the benefit. Aspirin has been around for ages, yes it can impact the mucous lining in the stomach which keeps the stomach acid from eroding the lining of the stomach. But I use the enteric kind of aspirin that is coated, it is designed to not dissolve in the stomach but dissolve in the intestine so that erosion from aspirin is greatly reduced. Some studies even show long term use of aspirin reduces polyps found in the colon.
I like to work with fabrication as a hobby, I do metalwork and woodwork, I have cut my hands numerous times, never really had a problem with bleeding. In first years after my first stroke I also took Plavix in addition to Aspirin, like my 90yr old Mother who also takes that combination I was black and blue all over from taking it. I was too young to look like I was 90, then insurance ran out and they wanted over $200 a month for Plavix, I decided that was enough and dropped the Plavix. Been on 325mg Aspirin ever since.
My daughter being a doctor didn't like me taking that 325mg and wanted me to lower it to 81 mg. So I lowered it to the lower dose for about 2 weeks. 2 weeks was all I could handle, I'd wake up stiff as a board, I hurt everywhere, my hands hurt, my feet hurt, I felt like Slinky, like I was 80
Some of the studies I've read they used 10 times the dose I used, some studies 20 times. The conclusion was those higher doses were no more effective than 325mg dose. Cardiologists for years have recommended the 81 mg, well I'm not trying to prevent a heart attack, I'm using it to prevent a stroke.
But I learned something from that lower dose aspirin experiment and from my own research on aspirin efficacy. I learned that a lower dose allowed every ache and pain I ever had show up. Arthritis runs in my family, if my Mom has it, chance is I probably do too. I have 4 older brothers, they all complain of it. I went back to taking that higher 325mg dose and all those pains went away.
About the only muscle-skeletal pains I have now is from sciatica from a bad L4. I've learned to live with it and use an inversion table when it flares up.
So that is what I would look into if I were you:
1. See your GP doctor about it, if you don't have a family history of aneurysm you can probably safely take it.
2. Try taking a 81 mg "enteric" coated aspirin at bed every night. You can usually take it with other medications without problem but check w/doctor first.
Try it for 20 days. IF your doctor says it is okay, I would obtain some Enteric coated aspirin like Ecotrin brand (there are generics that are cheaper)
If you read all the aspirin studies, you find the key to effectiveness of aspirin is it stays in your blood stream for 7 to 10 days. Most other medications don't stay in the blood stream that long. Their effectiveness also quickly diminishes as well. Those others may only stay in the blood stream for 8 or 12 hours, then their effectiveness in controlling pain is gone, reason you have to take them every 4 hours or so.
But if you take an aspirin today minute amounts will still be traceable in your blood stream for up to 7 to 10 days even if you didn't take any more. IF you are trying to prevent thrombus from forming and/or to prevent MI or stroke that residual efficacy is ideal. It is also ideal for chronic pain, pain like arthritis, arthritis is caused mainly by inflammation. Aspirin is a NSAID known to fight inflammation. As we have read many NSAIDs are bad due to their adverse side effects even aspirin if taken incorrectly like if you are prone to bleeding, have ulcers or family history.
But when you compare those side effects to FDA approved drugs like Vioxx to OTC aspirin, they are not so bad. But taken daily you are giving that residual amount of aspirin in your blood stream another boost for another 24 hours. When you increase the dose you increase that effective level in your blood stream. When it comes to effectiveness in prevention of formation of thrombus, the studies I read showed 3000mg taken daily to be no more effective than 325mg. So when you consider the known adverse side effects taking the lower dose is preferred.
Now I have read probably all the Aspirin studies ever produced, when you exclude the studies financially sponsored by the drug companies and makers of Vioxx and others trying to sell you a new fangled prescription pain medication, you find those other studies nearly always show aspirin as being effective if not more safe than any prescription drug out there.
But before you start any Aspirin regiment, you need to know the risks, consult with your doctor and know your limits. There is another benefit I see from my daily aspirin regiment. I know that CVD begins with inflammation of the arteries. That inflammation can be brought on by hypoxia from untreated OSA. Deprive your body of oxygen the cells that make up your arterial system begin to die (inflammation) once that process starts enzymes are released, liver produces lipids in the form of cholesterol to fight the inflammation. Once that putty like substance builds up on the artery walls platelets begin to form to make a more permanent repair, once those platelets aggregate together and form a thrombus it only takes a single clump to break off into a thrombi and you have a blood clot now headed to your heart (MI) lungs (Pulmonary Embolism) or brain (stroke) simply depending on where it happens. So I take aspirin to not only prevent that platelet aggregation for stroke prevention but to fight the inflammation everywhere in my body including the inflammation that makes up arthritis. All you have to do is stop taking it to know it works.
Yeah I know if it was that simple we wouldn't need all these Specialists and drugs. Well you have to look at who is going to the Specialists and who is coming back from the pharmacy every month with a shoe box full of drugs. I can tell ya its not me.
If you are going to try it, consult your doctor, make a log on how you feel and do it for at least 20 days. Again it is the residual effectiveness of it, you have to take it for 7 to 10 days to have any chance of it being effective then it will take that same time to know if it has an impact. If you read up on it the effectiveness of most drugs is gone after 20 days use your body becomes accustomed to it and it is no longer effective, not with Aspirin if you continue to take it.
Your results may vary. Aspirin is cheap too, I can get like a years supply for under $5 bucks, but like I said you have to be comfortable with it and consider the risks. For me my greatest risk is another stroke or heart attack, which one just depends on where that next thrombus decides to form, but I don't worry about it. It is like my GI specialist, he wanted me to have a GI endoscopy and to go off of the aspirin and plavix I was taking at the time, this was only like a month after my last stroke. He said since I had GERD longer than 5 years he needed to take a biopsy to check for signs of cancer and h-pylori bacteria.
He said that procedure sometimes creates some bleeding and taking that combination will make me bleed much more.
I asked: Can you guarantee me that I won't stroke out during that time I go off the Plavix and Aspirin for this endoscopy? If I begin to bleed during this endoscopy, can I die or be left in a wheel chair as a vegetable? I've already had TIA's for a year and a half and 2 strokes, which is worse a little bleeding at a biopsy site or another stroke? He said you are right if you bleed we'll just take the endoscopy laser and cauterize the site to stop any bleeding, I stayed on the Aspirin and Plavix things came out fine. He did find an ulcer about the size of a golf ball that was nearly healed.
But you know I take an aspirin (325mg) daily for stroke prevention and have done so for past 8 years. Yes there is risk of increased bleeding and ulcers by taking aspirin but you have to weight the risk with the benefit. Aspirin has been around for ages, yes it can impact the mucous lining in the stomach which keeps the stomach acid from eroding the lining of the stomach. But I use the enteric kind of aspirin that is coated, it is designed to not dissolve in the stomach but dissolve in the intestine so that erosion from aspirin is greatly reduced. Some studies even show long term use of aspirin reduces polyps found in the colon.
I like to work with fabrication as a hobby, I do metalwork and woodwork, I have cut my hands numerous times, never really had a problem with bleeding. In first years after my first stroke I also took Plavix in addition to Aspirin, like my 90yr old Mother who also takes that combination I was black and blue all over from taking it. I was too young to look like I was 90, then insurance ran out and they wanted over $200 a month for Plavix, I decided that was enough and dropped the Plavix. Been on 325mg Aspirin ever since.
My daughter being a doctor didn't like me taking that 325mg and wanted me to lower it to 81 mg. So I lowered it to the lower dose for about 2 weeks. 2 weeks was all I could handle, I'd wake up stiff as a board, I hurt everywhere, my hands hurt, my feet hurt, I felt like Slinky, like I was 80
Some of the studies I've read they used 10 times the dose I used, some studies 20 times. The conclusion was those higher doses were no more effective than 325mg dose. Cardiologists for years have recommended the 81 mg, well I'm not trying to prevent a heart attack, I'm using it to prevent a stroke.
But I learned something from that lower dose aspirin experiment and from my own research on aspirin efficacy. I learned that a lower dose allowed every ache and pain I ever had show up. Arthritis runs in my family, if my Mom has it, chance is I probably do too. I have 4 older brothers, they all complain of it. I went back to taking that higher 325mg dose and all those pains went away.
About the only muscle-skeletal pains I have now is from sciatica from a bad L4. I've learned to live with it and use an inversion table when it flares up.
So that is what I would look into if I were you:
1. See your GP doctor about it, if you don't have a family history of aneurysm you can probably safely take it.
2. Try taking a 81 mg "enteric" coated aspirin at bed every night. You can usually take it with other medications without problem but check w/doctor first.
Try it for 20 days. IF your doctor says it is okay, I would obtain some Enteric coated aspirin like Ecotrin brand (there are generics that are cheaper)
If you read all the aspirin studies, you find the key to effectiveness of aspirin is it stays in your blood stream for 7 to 10 days. Most other medications don't stay in the blood stream that long. Their effectiveness also quickly diminishes as well. Those others may only stay in the blood stream for 8 or 12 hours, then their effectiveness in controlling pain is gone, reason you have to take them every 4 hours or so.
But if you take an aspirin today minute amounts will still be traceable in your blood stream for up to 7 to 10 days even if you didn't take any more. IF you are trying to prevent thrombus from forming and/or to prevent MI or stroke that residual efficacy is ideal. It is also ideal for chronic pain, pain like arthritis, arthritis is caused mainly by inflammation. Aspirin is a NSAID known to fight inflammation. As we have read many NSAIDs are bad due to their adverse side effects even aspirin if taken incorrectly like if you are prone to bleeding, have ulcers or family history.
But when you compare those side effects to FDA approved drugs like Vioxx to OTC aspirin, they are not so bad. But taken daily you are giving that residual amount of aspirin in your blood stream another boost for another 24 hours. When you increase the dose you increase that effective level in your blood stream. When it comes to effectiveness in prevention of formation of thrombus, the studies I read showed 3000mg taken daily to be no more effective than 325mg. So when you consider the known adverse side effects taking the lower dose is preferred.
Now I have read probably all the Aspirin studies ever produced, when you exclude the studies financially sponsored by the drug companies and makers of Vioxx and others trying to sell you a new fangled prescription pain medication, you find those other studies nearly always show aspirin as being effective if not more safe than any prescription drug out there.
But before you start any Aspirin regiment, you need to know the risks, consult with your doctor and know your limits. There is another benefit I see from my daily aspirin regiment. I know that CVD begins with inflammation of the arteries. That inflammation can be brought on by hypoxia from untreated OSA. Deprive your body of oxygen the cells that make up your arterial system begin to die (inflammation) once that process starts enzymes are released, liver produces lipids in the form of cholesterol to fight the inflammation. Once that putty like substance builds up on the artery walls platelets begin to form to make a more permanent repair, once those platelets aggregate together and form a thrombus it only takes a single clump to break off into a thrombi and you have a blood clot now headed to your heart (MI) lungs (Pulmonary Embolism) or brain (stroke) simply depending on where it happens. So I take aspirin to not only prevent that platelet aggregation for stroke prevention but to fight the inflammation everywhere in my body including the inflammation that makes up arthritis. All you have to do is stop taking it to know it works.
Yeah I know if it was that simple we wouldn't need all these Specialists and drugs. Well you have to look at who is going to the Specialists and who is coming back from the pharmacy every month with a shoe box full of drugs. I can tell ya its not me.
If you are going to try it, consult your doctor, make a log on how you feel and do it for at least 20 days. Again it is the residual effectiveness of it, you have to take it for 7 to 10 days to have any chance of it being effective then it will take that same time to know if it has an impact. If you read up on it the effectiveness of most drugs is gone after 20 days use your body becomes accustomed to it and it is no longer effective, not with Aspirin if you continue to take it.
Your results may vary. Aspirin is cheap too, I can get like a years supply for under $5 bucks, but like I said you have to be comfortable with it and consider the risks. For me my greatest risk is another stroke or heart attack, which one just depends on where that next thrombus decides to form, but I don't worry about it. It is like my GI specialist, he wanted me to have a GI endoscopy and to go off of the aspirin and plavix I was taking at the time, this was only like a month after my last stroke. He said since I had GERD longer than 5 years he needed to take a biopsy to check for signs of cancer and h-pylori bacteria.
He said that procedure sometimes creates some bleeding and taking that combination will make me bleed much more.
I asked: Can you guarantee me that I won't stroke out during that time I go off the Plavix and Aspirin for this endoscopy? If I begin to bleed during this endoscopy, can I die or be left in a wheel chair as a vegetable? I've already had TIA's for a year and a half and 2 strokes, which is worse a little bleeding at a biopsy site or another stroke? He said you are right if you bleed we'll just take the endoscopy laser and cauterize the site to stop any bleeding, I stayed on the Aspirin and Plavix things came out fine. He did find an ulcer about the size of a golf ball that was nearly healed.
Last edited by Snoredog on Thu Aug 14, 2008 3:47 pm, edited 1 time in total.
someday science will catch up to what I'm saying...
Re: OT: anyone medicated for fibromyalgia?
I don't have FMS, but I have taken one of the drugs you listed, tramadol. It is a fairly mild (at least in my experience) opioid painkiller. I used it daily for six months while waiting for the end of the school year for surgery I didn't want to take six to eight weeks off for. In the beginning, it made me a little sleepy during the day...probably for two weeks. I didn't have my OSA dx at that time, btw. Don't know if it matters, though. If I remember correctly, it is metabolised through the liver and once the liver is used to it, the drowsy side effect goes away. I also gave this drug to one of my dogs for pain from hip dysplasia and she had the same side effect for a couple of weeks - more sleepy than usual. It has been prescribed for my husband, too.
For me, it was a quick and effective way to relieve chronic pain. I was given some after minor surgery last fall and use it for occasional really bad pain. Like any opioid, it can be addictive when used regularly. I didn't have this experience, but my husband did. His body became used to it and when he stopped it, he had some withdrawal symptoms.
I used to have an aversion to long term medication, but got over that immediately after having my GERD treated. I never want to go back to that terrible heart burn again! These meds may improve your life enough that you want to keep taking them.
You might want to look at the wikipedia article on these meds. I've found those articles to be very accurate and less biased than other sites because anyone can edit the articles.
Good luck. I have friends with FMS and know that it can be extremely frustrating. Hang in there.
For me, it was a quick and effective way to relieve chronic pain. I was given some after minor surgery last fall and use it for occasional really bad pain. Like any opioid, it can be addictive when used regularly. I didn't have this experience, but my husband did. His body became used to it and when he stopped it, he had some withdrawal symptoms.
I used to have an aversion to long term medication, but got over that immediately after having my GERD treated. I never want to go back to that terrible heart burn again! These meds may improve your life enough that you want to keep taking them.
You might want to look at the wikipedia article on these meds. I've found those articles to be very accurate and less biased than other sites because anyone can edit the articles.
Good luck. I have friends with FMS and know that it can be extremely frustrating. Hang in there.
_________________
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Previous equipment:
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Machine: Respironics M series Auto with A-Flex
Humidifier: Respironics M series Heated Humidifier
Software: Encore Viewer
Re: OT: anyone medicated for fibromyalgia?
Sharon1965 - As you know, I have Rheumatoid Arthritis. Fibromyalgia is considered a form of arthritis but causing muscle pain rather than joint pain ( although joint pain is sometimes present to a degree in fibro), and sleep disturbances. I expect you were tested using the fibro points (pressing particular areas to determine the diagnosis).
Up until a couple of years ago, I taught Arthritis Self Management Programs (for 10 years) and a large numbe rof the participants had fibro. All the ones I came across in those programs with fibro were on meds - the ones you are being prescribed were among them.
Like you, I do not like to take meds BUT when I was diagnosed with RA, 19 years ago I had to get over than if I wanted to lead any kind of a normal life. I maintain my quality of life with a number of drugs AND a well rounded exercise program which includes range of motion exercises, strenthening exercises (weights and therabands) and aerobics. Because of my condition ( and yours) an exercise program for us is not as intense as for someone not dealing with a form of arthritis, but just as, if not more, important. You're Canadian so I can speak from that perspective. Call your local Arthritis Society office. They can offer you, free, Physiotherapists who can set you up with an exercise program that will really help but, because it will be personally designed for someone with a form of arthritis, it won't hurt you. Regular gyms may be "iffy" for you.
You can research these drugs on the net BUT do not be frightened by the side effects listed. EVERYONE reacts differently to every drug. ALL side effects are listed, even if they only affected a small percentage of the people taking the drug. Discuss all these drug carefully with our doctor. The tramadol is a pain med. I read about the others but am unfamiliar with them.
While you are speaking to the Arthritis Society, ask about taking an Arthritis Self Management Program. There are programs in Windsor so you would really benefit from taking one. They are lead by people with a form of arthritis.
Go to http://www.arthritis.ca. There is a section on fibromyaligia there. Register in the open forum. You know about how helpful forums can be!!! There are several boards there. One is for people with fibromyalgia. Talk to them about this condition and these drugs. They will know all about the conditionand the drugs!! I would venture to say, they know more than the doctors!! There is information about the Arthritis Self Management Program there as well. PM me any time you want.
Good luck!
Up until a couple of years ago, I taught Arthritis Self Management Programs (for 10 years) and a large numbe rof the participants had fibro. All the ones I came across in those programs with fibro were on meds - the ones you are being prescribed were among them.
Like you, I do not like to take meds BUT when I was diagnosed with RA, 19 years ago I had to get over than if I wanted to lead any kind of a normal life. I maintain my quality of life with a number of drugs AND a well rounded exercise program which includes range of motion exercises, strenthening exercises (weights and therabands) and aerobics. Because of my condition ( and yours) an exercise program for us is not as intense as for someone not dealing with a form of arthritis, but just as, if not more, important. You're Canadian so I can speak from that perspective. Call your local Arthritis Society office. They can offer you, free, Physiotherapists who can set you up with an exercise program that will really help but, because it will be personally designed for someone with a form of arthritis, it won't hurt you. Regular gyms may be "iffy" for you.
You can research these drugs on the net BUT do not be frightened by the side effects listed. EVERYONE reacts differently to every drug. ALL side effects are listed, even if they only affected a small percentage of the people taking the drug. Discuss all these drug carefully with our doctor. The tramadol is a pain med. I read about the others but am unfamiliar with them.
While you are speaking to the Arthritis Society, ask about taking an Arthritis Self Management Program. There are programs in Windsor so you would really benefit from taking one. They are lead by people with a form of arthritis.
Go to http://www.arthritis.ca. There is a section on fibromyaligia there. Register in the open forum. You know about how helpful forums can be!!! There are several boards there. One is for people with fibromyalgia. Talk to them about this condition and these drugs. They will know all about the conditionand the drugs!! I would venture to say, they know more than the doctors!! There is information about the Arthritis Self Management Program there as well. PM me any time you want.
Good luck!
_________________
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Country4ever
- Posts: 1373
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Re: OT: anyone medicated for fibromyalgia?
Hi Sharon,
I have FMS and like you, I really try to avoid meds, since I have so many side-effects from them. I have recently started Zoloft for panic and depression, but I've heard that antidepressants are good for FMS too. I'll let you know how it goes.
I do think that FMS is somehow tied into female hormones. Mine got so much worse during perimenopause and has lessened a bit, now that my hormones aren't fluctuating as much.
I, too, was hoping that CPAP would take care of more of my symptoms than it did.........but it did give me more energy. Has it helped your energy level at all?
There is a med for alpha wave intrusion........I think its called Xyrem, but I don't know much about it, since I didn't want to use it!
My doc has also recommended neurontin, but I consider that a "big gun", and would probably only use it if I was having alot more pain.
The weird thing about FMS is that we all have similar symptoms, but our responses to meds and activities are so different.
I think you just need to try them out and see if they work for you.
My rheumatologist once wanted me on Effexor, but I was too scared to try it. I hate being on a med that, if I couldn't get it, I would have to go through an even worse hell coming off it. I do understand your hesitance with meds.
Alot of women seem to like water aerobics and massages. The first one didn't do anything for me, and I haven't really tried massage yet.
I do find that taking an occasional 1/4 mg xanax at bedtime really helps me have a good night's sleep.
Good luck to you!I
I have FMS and like you, I really try to avoid meds, since I have so many side-effects from them. I have recently started Zoloft for panic and depression, but I've heard that antidepressants are good for FMS too. I'll let you know how it goes.
I do think that FMS is somehow tied into female hormones. Mine got so much worse during perimenopause and has lessened a bit, now that my hormones aren't fluctuating as much.
I, too, was hoping that CPAP would take care of more of my symptoms than it did.........but it did give me more energy. Has it helped your energy level at all?
There is a med for alpha wave intrusion........I think its called Xyrem, but I don't know much about it, since I didn't want to use it!
My doc has also recommended neurontin, but I consider that a "big gun", and would probably only use it if I was having alot more pain.
The weird thing about FMS is that we all have similar symptoms, but our responses to meds and activities are so different.
I think you just need to try them out and see if they work for you.
My rheumatologist once wanted me on Effexor, but I was too scared to try it. I hate being on a med that, if I couldn't get it, I would have to go through an even worse hell coming off it. I do understand your hesitance with meds.
Alot of women seem to like water aerobics and massages. The first one didn't do anything for me, and I haven't really tried massage yet.
I do find that taking an occasional 1/4 mg xanax at bedtime really helps me have a good night's sleep.
Good luck to you!I
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Re: OT: anyone medicated for fibromyalgia?
Sharon,
I'm so sorry you're going through that and that cpap therapy isn't helping as much as you had hoped. I was lucky that back in 2003 when I was able to easily "pass" the fibromyalgia tests, my doctor insisted it wasn't fibro and she got me tested for sleep apnea, which I had. Cpap therapy has helped me some although I've had other medical issues crop up. From friends of mine who have fibro, I can say that Hawthorne's recommendations of gentle, arthritis-based exercise and going through the arthritis society's self management program are very good ones. Good luck.
France
I'm so sorry you're going through that and that cpap therapy isn't helping as much as you had hoped. I was lucky that back in 2003 when I was able to easily "pass" the fibromyalgia tests, my doctor insisted it wasn't fibro and she got me tested for sleep apnea, which I had. Cpap therapy has helped me some although I've had other medical issues crop up. From friends of mine who have fibro, I can say that Hawthorne's recommendations of gentle, arthritis-based exercise and going through the arthritis society's self management program are very good ones. Good luck.
France
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Bearded_One
- Posts: 597
- Joined: Fri Nov 17, 2006 9:35 am
- Location: Northern Virginia, near DC
Re: OT: anyone medicated for fibromyalgia?
I developed FMS symptoms about four years ago, and I have been on CPAP for about 14 years. I generally ache all over all of the time and just feel like crap, although I do not have tender points. I was tested for just about everything under the sun and nothing was found; my rheumatologist calls it FMS even though there are no tender points. I think that they took about a half gallon of blood for testing and I think I spent about a week at the radiological lab, including two MRI's. My shoulders are about 6 inches wider than the tube, so my shoulders were tightly and painfully stuffed into the tube; the MRIs were horrific. I am on Coumadin so I am unable to take NSAIDs; I was prescribed Ultram (300 mg a day) and Tylenol, which helps a bit. I took Lyrica for about four months and it did absolutely nothing -- no relief and no side effects. I have given up on trying to do anything more, I just keep taking Ultram and Tylenol
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sharon1965
- Posts: 1232
- Joined: Thu Jan 18, 2007 4:59 pm
- Location: Windsor, Ontario, Canada
Re: OT: anyone medicated for fibromyalgia?
hi guys
thanks for the responses
as i mentioned, i was originally diagnosed 13 years ago, and have already gone through the arthritis society self management course and have tried many, many different things to manage my condition
once i received my OSA dx, i was hopeful that my pain and fatigue was caused by osa and plmd instead of FMS, resulting in fragmented, non restorative sleep, and was feeling optimistic about improvement for the first time in many years; the last 18 months has been disappointing in this regard but now i understand why cpap hasn't addressed this particular aspect of my condition
fms is not a disorder of the muscles, tissue, joints etc...it's a neurological disorder whereby the brain misinterprets pain signals, alpha wave intrusion is typical in fms patients, resulting in a lack of stage 4 sleep; this was evident in all of my sleep studies to date
i chose to go back to the FMS clinic in london to confirm the diagnosis...so basically, they weren't telling me anything i didn't know, only confirming that my current condition isn't OSA related
because what i do know, now, is that the cpap is addressing the OSA sufficiently, the requip is addressing the plmd sufficiently, and the fact that i still feel like hell is not because of either of these not doing their job, which is something i needed to explore
i need to research the meds more; i'm not interested in taking any of the suggested meds if they are strictly for pain management--i can manage the pain, for the most part, on my own; i need to give up on the idea that cpap will make me feel better than i do now, and re-focus on managing the symptoms of fms separately and distinctly from those related to osa
thanks for the responses
as i mentioned, i was originally diagnosed 13 years ago, and have already gone through the arthritis society self management course and have tried many, many different things to manage my condition
once i received my OSA dx, i was hopeful that my pain and fatigue was caused by osa and plmd instead of FMS, resulting in fragmented, non restorative sleep, and was feeling optimistic about improvement for the first time in many years; the last 18 months has been disappointing in this regard but now i understand why cpap hasn't addressed this particular aspect of my condition
fms is not a disorder of the muscles, tissue, joints etc...it's a neurological disorder whereby the brain misinterprets pain signals, alpha wave intrusion is typical in fms patients, resulting in a lack of stage 4 sleep; this was evident in all of my sleep studies to date
i chose to go back to the FMS clinic in london to confirm the diagnosis...so basically, they weren't telling me anything i didn't know, only confirming that my current condition isn't OSA related
because what i do know, now, is that the cpap is addressing the OSA sufficiently, the requip is addressing the plmd sufficiently, and the fact that i still feel like hell is not because of either of these not doing their job, which is something i needed to explore
i need to research the meds more; i'm not interested in taking any of the suggested meds if they are strictly for pain management--i can manage the pain, for the most part, on my own; i need to give up on the idea that cpap will make me feel better than i do now, and re-focus on managing the symptoms of fms separately and distinctly from those related to osa
If you always do what you've always done, you'll always get what you've always got...
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sharon1965
- Posts: 1232
- Joined: Thu Jan 18, 2007 4:59 pm
- Location: Windsor, Ontario, Canada
Re: OT: anyone medicated for fibromyalgia?
[quote="Snoredog"]I'd go get a massage and see how painful it is
i do go for regular massage therapy, and let me tell you, it is excruciating
i do go for regular massage therapy, and let me tell you, it is excruciating
If you always do what you've always done, you'll always get what you've always got...
Re: OT: anyone medicated for fibromyalgia?
Sharon,
I do not have fibromyalgia, but my sleep doctor (neurologist specializing in sleep disorders) has been prescribing Lyrica to help people with sleep disorders achieve deeper sleep. He prescribed it to me for my insomnia problems. I ramped up to 150 mg and began experiencing some brain fog in the mornings, so dropped down to 125 mg. I guess I took it for about nine months. Then I attacked my insomnia with cognitive behavioral therapy techniques instead. I quit the Lyrica so I could tell if the cognitive behavioral therapy was working. You don't have to wean off Lyrica, you can stop it cold with no ill effects (other than whatever helpful therapy it provided will end). I had no side effects other than the morning grogginess when I got to a dosage too high for me. And I sure could tell when I quit taking it that it had been helping me sleep better. I have no idea how well it works on pain control.
I wish you the best. Fibromyalgia is a tough thing to have.
Janna
I do not have fibromyalgia, but my sleep doctor (neurologist specializing in sleep disorders) has been prescribing Lyrica to help people with sleep disorders achieve deeper sleep. He prescribed it to me for my insomnia problems. I ramped up to 150 mg and began experiencing some brain fog in the mornings, so dropped down to 125 mg. I guess I took it for about nine months. Then I attacked my insomnia with cognitive behavioral therapy techniques instead. I quit the Lyrica so I could tell if the cognitive behavioral therapy was working. You don't have to wean off Lyrica, you can stop it cold with no ill effects (other than whatever helpful therapy it provided will end). I had no side effects other than the morning grogginess when I got to a dosage too high for me. And I sure could tell when I quit taking it that it had been helping me sleep better. I have no idea how well it works on pain control.
I wish you the best. Fibromyalgia is a tough thing to have.
Janna
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TossinNTurnin
- Posts: 243
- Joined: Sat Jan 05, 2008 7:45 pm
Re: OT: anyone medicated for fibromyalgia?
Well, I have to say I haven't been officially diagnosed with fibro, but I have a feeling I have it, and that I'm not alone in not having been diagnosed.
I do know, that as someone who has struggled with Depression... when I took Celexa... my pain practically disappeared.... however, at 40+, for 5 months, I developed alcoholism that I had NEVER had an issue with previously. (had never blacked out, never had periods of forgetfulness, never drove drunk or even borderline "tipsy", never slurred my speech... never embarrassed myself etc...) Within 2 weeks of having stopped Celexa.... any "issues" I may have has with alcohol.... completely, and I mean completely, disappeared. Without effort. I simply felt no desire to drink. It WAS the Celexa.
Being on CPAP, I would've hoped that much of the muscular or joint pain I felt would be diminished. But it really hasn't.
Like you... I am no longer into "taking meds" for pain relief other than some over the counter Aleve, when things get bad.... I want to know what I'm taking is practically guaranteed to have a noticeably positive effect. Otherwise... fuggetaboutit.
I do know, that as someone who has struggled with Depression... when I took Celexa... my pain practically disappeared.... however, at 40+, for 5 months, I developed alcoholism that I had NEVER had an issue with previously. (had never blacked out, never had periods of forgetfulness, never drove drunk or even borderline "tipsy", never slurred my speech... never embarrassed myself etc...) Within 2 weeks of having stopped Celexa.... any "issues" I may have has with alcohol.... completely, and I mean completely, disappeared. Without effort. I simply felt no desire to drink. It WAS the Celexa.
Being on CPAP, I would've hoped that much of the muscular or joint pain I felt would be diminished. But it really hasn't.
Like you... I am no longer into "taking meds" for pain relief other than some over the counter Aleve, when things get bad.... I want to know what I'm taking is practically guaranteed to have a noticeably positive effect. Otherwise... fuggetaboutit.
"She is a singer, and therefore capable of anything" Vincenzo Bellini
Zoo Med Repti Heat cable to prevent rainout and the Aussie heated hose
Zoo Med Repti Heat cable to prevent rainout and the Aussie heated hose
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sharon1965
- Posts: 1232
- Joined: Thu Jan 18, 2007 4:59 pm
- Location: Windsor, Ontario, Canada
Re: OT: anyone medicated for fibromyalgia?
jannaJZ wrote:Sharon,
I do not have fibromyalgia, but my sleep doctor (neurologist specializing in sleep disorders) has been prescribing Lyrica to help people with sleep disorders achieve deeper sleep. He prescribed it to me for my insomnia problems. I ramped up to 150 mg and began experiencing some brain fog in the mornings, so dropped down to 125 mg. I guess I took it for about nine months. Then I attacked my insomnia with cognitive behavioral therapy techniques instead. I quit the Lyrica so I could tell if the cognitive behavioral therapy was working. You don't have to wean off Lyrica, you can stop it cold with no ill effects (other than whatever helpful therapy it provided will end). I had no side effects other than the morning grogginess when I got to a dosage too high for me. And I sure could tell when I quit taking it that it had been helping me sleep better. I have no idea how well it works on pain control.
I wish you the best. Fibromyalgia is a tough thing to have.
Janna
see, this is what i'd be interested in...like i said, i have no desire to take meds for pain, but if i thought something might actually address the sleep issues, i might be up for it...so thanks, good to know
If you always do what you've always done, you'll always get what you've always got...
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Bearded_One
- Posts: 597
- Joined: Fri Nov 17, 2006 9:35 am
- Location: Northern Virginia, near DC
Re: OT: anyone medicated for fibromyalgia?
TossinNTurnin, you might want to get a work up for FMS. There are a great many conditions that can cause FMS symptoms and as many of those conditions need to be ruled out as possible. Many of the conditions that can cause FMS symptoms are treatable while FMS is not currently treatable. Many doctors do not recognise fibromyalgia/FMS as being a diagnosis, it is simply saying that a patient has a set of symptoms and that the symptoms aren't caused by anything that has been tested for.