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Fibromyalgia is not a diagnosis, it is a list of symptoms.
The medicines prescribed for fibromyalgia are not a cure or treatment for a disease, they are just a way to aleviate some or all the symptoms referred to as fibromyalgia.
So in other words, if you manifest the symptoms that make up the description of fibromyalgia, then you have it. It doesn't mean that the CAUSE of your symptoms is the same as everyone else manifesting those symptoms.
You CAN'T be misdiagnosed as long as you show the symptoms.
That's what I say too. Often people are thrown into the same fibro boat based upon the symptoms when doctors don't know what else to call it.
I think it's part of the whole chronic fatigue syndrome. Often partially caused by some sort of food intolerance or allergies to things in the environment. I was in a cfs group one time and everyone had been diagnosed by an allergist. Usually the allergies had gone undiagnosed for years and things got worse and worse. If you've been tested by a reliable allergist, your allergies are not just your imagination.
One specialist believed that fibro was a subset of cfs. That's how it is for me--I got over fibro twice but will always have the food allergies and insomnia. I avoid household chemicals like the plague because I am so sensitive to certain chemicals and who wants headaches, stuffy nose, sinus issues, dizziness, whatever else.
With fibro, I had no symptoms at all if I sat perfectly still and did nothing at all. That's fibro. But if you get up and cook dinner, you will be rewarded with aching arm muscles from lifting dishes and pots and pans. Your leg muscles will ache from standing, your feet muscles will ache from walking.
If I walked the dog, I was rewarded with aching foot and leg muscles. About all I could do was just sit--and that's no good! My arm would ache from just sitting and lifting a cup of tea. It was about muscle weakness when nearly everything was just too heavy, even that little cup of tea. The pain would come on a few hours after exertion.
The specialist pressed on pressure points and they were surprisingly painful. He said that was part of the fibro diagnosis, the pain at the pressure points. No one knows why.
This is the fibro specialist who had so many patients that he held group appointments. It was mostly women but there were a few men. No one was overweight. I don't think fibro has anything to do with weight. I remember when the dr told everyone to exercise, one women looked at her husband--he was the patient--and said, "I told you so. You just need to exercise." The guy was visibly upset because, as he said, he would have loved to exercise but exercise brought on the PAIN.
And that was why I ended up in a heated PT pool for my exercise. It is AEROBIC exercise, not weight bearing exercise. My teacher at the pool specialized in arthritis and fibro--she had me "walking" in the pool while moving my arms back and forth on the surface of the water, all sorts of non stop movement but NOT weight bearing. I was weightless in the pool but I was moving. It's the MOVING that cures fibromyalgia.
I used to wear those elastic supports on my knees, elbows, and wrists. I think it's because the muscles were so weak that all the stress would have gone to my joints, but I'm not sure. I just did what the doctors told me. After 20 minutes DAILY of non weight bearing aerobic exercise (some was at home, lying on the floor just moving my arms and legs), the fibro was completely gone in (maybe 6?) weeks. It was a lot of work but the pain was gone and it was time to work on gaining some strength at last.
No one knows the cause. I don't even know if any of the other people in the dr's office were cured by the aerobic, non weight bearing exercise, but it cured me! Nothing I have read--and there are some ideas/medicines that almost seem plausible--is as spot on as the aerobic exercise.
Last edited by in_newengland; 03-14-2018 at 10:27 PM..
For me during the years 1991-2002 when I was working to get thyroid supported, I went thru a job loss trauma in 1999 which I believe IF my thyroid were optimal the shock would not have been so bad to my system. I've read FM can be brought on by emotional or physical trauma to the body. Finally got on thyroid med in 2002. I do feel better when I stretch. Everyone has their own opinions on it, some of us agree to some degree.
I am being treated for fibromyalgia, it is a diagnosis so far ,visiting the rhumetologist for 6 months now.
I have pain in most all joints and a stiff neck. I also am suffering arthritis an 2 radiculopathies. I also have restless legs and arms, can't stop stretching and rotating my wrist and ankles.insomnia in addition.
Could I possibly not have fibro ,but something else? Multiple blood work does not point to another direction. No Lyme lupus or thyroid issues. Trigger points are positive in multiple locations.
Can fibro be confused with something else? My doctor is an old timer, and knows his stuff. Very involved withy health.
The reason I ask if it can possibly be something else, is because I am a male. I have been getting checked out by many different specialist, and have finally getting treated for something.
I am excited to find a diagnosis for my fatigue and pain, but not excited of what I am looking forward to. 6 different meds , to take daily ,is not fun.
Men can definitely have fibromyalgia, it's just not as prevelent in men and usually not as severe. CBD (cannabidiol) oil from hemp can be very helpful for the pain and restlessness. It's legal and not psychoactive.
Men can definitely have fibromyalgia, it's just not as prevelent in men and usually not as severe. CBD (cannabidiol) oil from hemp can be very helpful for the pain and restlessness. It's legal and not psychoactive.
I agree with CBD tincture. I use both high CBD and high THC tinctures. If I'm hurting normally I use the CBD. A dose is two droppers full. Droppers like ear medicine comes in. If I'm hurting more than usual I take one dropper of CBD and one of THC. As I understand it the combination actually "boosts" the effect of the CBD for pain, anxiety, and relaxation. My experience says this is true, but it also makes me a little high. Like drinking a beer. I also have a CBD marijuana that I smoke before going to bed (legal state) if it's really bad, but only if it is. When it's really, really bad I take a hit of CBD and THC. Like the tincture it seems to boost the effect of the CBD.
Some nights even that doesn't get me to sleep, but it does lessen the pain considerably.
I have non-stop pain all over my body. Some has been diagnosed. I have neuropathy. All other symptoms are of things that are recognized, but I don't have them. One doc said I probably had FM, but would not diagnose it.
I have restless leg, arm, and body. I've had it most of my life. Ass far as I know it started with Polio when i was four. I have had my entire body jerk so hard I lifted myself a few inches off the bed. That was fun. I got my doctor to prescribe Ropinirole. I am taking .5mg and I'm going to ask him to up it. It has stopped most of the jerking and urge to, but not all of it and not during the day. I have to find out if I can take it at night and again in the morning. I recommend the OP ask his doc about it.
I was given Cymbalta for the pain and I have never had a medicine do so many bad things to me. I was a zombie. Couldn't pee, couldn't poop, didn't talk, just sat in a chair and stared at nothing. That was on the minimum dose.
I'm reviving this old thread because there are several fibromyalgia threads and this was one of the better ones. I have some more up to date answers and I would like to include them.
BTW, I just developed fibro for the third time and for the third time, I think I have cured it. It is a disease of deficiency, especially of amino acids.
Amino acids aren't usually recommended for fibro--maybe not enough money in amino acids, but studies now show that people with fibro are usually deficient in certain amino acids and that by taking them, the person can be cured. I do not endorse any of these doctors in particular but am just reporting their results and recommendations in the hope that they may help others. BTW, we can lump Chronic Fatigue Syndrome in with fibromyalgia and also Multiple Chemical Sensitivity. They are apparently all variations of the same thing.
Some articles and information. Feel free to add anything else you know. I know that in general, fibromyalgia follows trauma, usually a mental trauma and a physical trauma at the same time. (car accident, divorce and needing to physically move items that are too heavy for you, and so on.) Chronic fatigue has other causes like hormones or certain other deficiencies but the cure can be very similar to fibro. Both are similar, overlapping, and remember--no two cases are alike so the amino acids that cure one person would be needed in a different combination to cure someone else of the same illness. I am not advocating anything like pain killers or antidepressants, mostly just the missing amino acids.
I'm reviving this old thread because there are several fibromyalgia threads and this was one of the better ones. I have some more up to date answers and I would like to include them.
BTW, I just developed fibro for the third time and for the third time, I think I have cured it. It is a disease of deficiency, especially of amino acids.
Amino acids aren't usually recommended for fibro--maybe not enough money in amino acids, but studies now show that people with fibro are usually deficient in certain amino acids and that by taking them, the person can be cured. I do not endorse any of these doctors in particular but am just reporting their results and recommendations in the hope that they may help others. BTW, we can lump Chronic Fatigue Syndrome in with fibromyalgia and also Multiple Chemical Sensitivity. They are apparently all variations of the same thing.
Some articles and information. Feel free to add anything else you know. I know that in general, fibromyalgia follows trauma, usually a mental trauma and a physical trauma at the same time. (car accident, divorce and needing to physically move items that are too heavy for you, and so on.) Chronic fatigue has other causes like hormones or certain other deficiencies but the cure can be very similar to fibro. Both are similar, overlapping, and remember--no two cases are alike so the amino acids that cure one person would be needed in a different combination to cure someone else of the same illness. I am not advocating anything like pain killers or antidepressants, mostly just the missing amino acids.
Thank you for this post. I'd never heard that amino acid supplementation can cure fibromyalgia. It also sounds like effective trauma therapy could help, as well. Are you familiar with a trauma treatment called EMDR, that's a method of helping trauma victims process traumatic memories through eye movements (mimicking the rapid eye movements that take place during sleep)? It's revolutionized trauma therapy.
I'm also interested in the "chronic fatigue" diagnosis. I'm not sure what exactly it refers to. Is it the same as adrenal fatigue, or is it a different phenomenon? Adrenal fatigue can be treated successfully and fairly easily with a certain hormone supplement, though this isn't well known in the US.
I hope to add articles to the previous post in the future. Meanwhile these are some notes to make for easier reading, although for anyone who really wants to know more, look to the articles. Maybe there are some readers who can piece more of this together and add to what is said here.
These notes are miscellaneous, usually not cited, and not in any particular order. Most of it came from scientific articles or it is just general knowlege.
Two major neurotransmitters are serotonin and gaba. If you take sleep medication called Serotonin, they are working on increasing serotonin. But for a lot of people serotonin is not the problem. Low gaba is the problem. You cannot just take gaba, you have to try to find a way to increase gaba and it is hoped that new research will investigate gaba for sleep, not just serotonin. These are diseases of the central nervous system.
Amino acids produce and repair tissues. Maintain blood sugar balance. Free form amino acids go right into the bloodstream; body doesn't need to process them.
To raise GABA levels, take l-glutamine 500 mg. 3 times/day.
Amino acids that are lost during an infection--zinc, l-glycine, l-cysteine, l-glutamine.
Excitatory amino acids appear to transmit pain. Glutamine and asparagine. Re-uptake and biotransformation.
Mask pain-related increases in excitatory amino acids. Glycine is an inhibitory transmitter.
changes in the concentrations of amino acids in the cerebrospinal fluid that correlate with pain in patients with fibromyalgia...(implications for niyric acid pathways.) ...glutamine and asparagine.
Pain relief--eating sugar, carbs, not enough protein. Good sources=eggs, turkey, beef.
Branch chain amino acids could help in Fibro. People with fibro could also have poor protein absorption.
Fibro could be a partly a glutathione deficiency. Cannot take it but can take NAC, glutamine (1000 mg/day) and glycine (500 mg-1000 mg/day.) Plus vitamin C. NAC-650-1000 mg per day for 3-4 months, then 250/day.)
You could need the non essential amino acids when you are sick. When sick or injured you need more arginine, cysteine, glutamine, tyrosine, glycine, ornithine, proline, serine. Proline-connective tissue, cartilage, gut.
Eat yogurt and good saurkraut. Need meat, fish, eggs. 50 Gm protein/day.
Branched chain amino acids for glutamine and alanine synthesis.
Need more amino acids as you age. Too much=nausea, hives, joint pain.
NAC-500-1000 mg MAY stop racing thoughts when trying to sleep.
L. carnitine helps fatigue, can help sleep but take during the day.
Sleep--L-serine, a precursor of other amino acids like glycine and cysteine--a study showed significant difference. Web MD.
L-lysine-sleep? anxiety, stress. Take with morning coffee.
L-valine-muscle repair, maybe sleep.
L-arginine--8 grams at bedtime. Lowers stress. affects testosterone.
Fibromyalgia (FMS), which currently affects about 2.1% of adults worldwide and an estimated three to six million Americans [1], and Chronic Fatigue Syndrome (CFS) are two overlapping and disabling syndromes. CFS affects more than one million people in the United States. There are tens of millions of people with similar fatiguing illnesses who do not fully meet the strict research definition of CFS [2]. Severe persistent fatigue, diffuse migratory pain, cognitive dysfunction, and disordered sleep are common symptoms reported by patients suffering from these syndromes, along with gastrointestinal symptoms and anxiety exacerbated by their illness.
Many of the problems seen in CFS/FMS may be associated with a decrease in tissue energy levels and altered energy metabolism. The consequences of dysfunctional energy metabolism frequently include pain from chronic muscle shortening [3], post-exertional malaise, and low exercise tolerance associated with decreased blood cell mass, cardiac output and stroke volumes [4, 5].
Last edited by in_newengland; 04-28-2022 at 05:15 PM..
Glad this thread was revived! My doctor (who I didn't see often, I don't want to see Drs. often) - pretty much blew off the CFS and said it wasn't real. She has since left the practice and there there is another Dr. who took her patients, I'll have to see/meet her since they won't renew the 2 non-related? prescriptions I'm on, I'll have to see how I feel about her. (the prior Dr. wasn't even that old she had a baby not too long ago) - sigh... it's hard getting even women to understand let alone men.
Glad this thread was revived! My doctor (who I didn't see often, I don't want to see Drs. often) - pretty much blew off the CFS and said it wasn't real. She has since left the practice and there there is another Dr. who took her patients, I'll have to see/meet her since they won't renew the 2 non-related? prescriptions I'm on, I'll have to see how I feel about her. (the prior Dr. wasn't even that old she had a baby not too long ago) - sigh... it's hard getting even women to understand let alone men.
Yes, I understand how it is for us women to be told that "it's all in your mind" or "it's just nerves." But CFS, fibromyalgia, and yes, even Multiple Chemical Sensitivity (MCS) are real. Maybe we can find some other articles for you to take to your new doctor. It took me hours last night to find these few but it seems that more is becoming known about amino acids (probably because MEN [sorry, men] want to boost their protein levels for athletics.)
In particular, I wish someone (maybe someone already has) would take a look at fibro patients who are deficient in serotonin and those who are deficient in gaba. Those seem to be the two neurotransmitters that are affected. Then, if they can separate those into two categories, tell us WHICH amino acids would be appropriate for each one. I do know that I need gaba. You can tell because if the doctor gives you Trazadone for sleep and it works, then your problem is with serotonin. If Trazadone doesn't work, then your issue is with gaba. At least that's how it seems to me.
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I got my doctor to prescribe Ropinirole. I am taking .5mg and I'm going to ask him to up it. It has stopped most of the jerking and urge to, but not all of it and not during the day. I have to find out if I can take it at night and again in the morning. I recommend the OP ask his doc about it.
