What do you recommend for fibromyaligia? Is it a virus which may cause an auto-immune response? I have a 24 yr old daughter who suffers daily from fibromyalgia pain, please advice.
Thanks!

Hello, I am also a fibromyalgia sufferer along with RSD and TOS.

This is the definition of fibromyalgia according to the Encyclopedia: I have never heard it to be a virus.
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Fibromyalgia (FM) is a disorder classified by the presence of chronic widespread pain and tactile allodynia.[1] Fibromyalgia patients are also typically affected by a number of symptoms other than pain, including debilitating fatigue, abnormal sleep architecture,[2] functional bowel disturbances[3] and a variety of neuropsychiatric problems including cognitive dysfunction,[4] anxiety and depressive symptoms. While the criteria for such an entity has not yet been thoroughly developed, the recognition that fibromyalgia involves more than just pain has led to the frequent use of the term “fibromyalgia syndrome.” It is not contagious, and recent studies suggest that people with fibromyalgia may be genetically predisposed.
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Has she seen a rheumatologist? That doctor will probably either manage the pain there or have her see a pain specialist. There are many medications out there that can help her with pain. Epsom salt baths also help. I use heat at night too to try to keep the muscles from tightening.

I am sorry that there is another person that deals with this condition. It's not fun.

Hi,

First I am sorry to hear about your daughters pain. Among my other dx's I have been diagnosed with fibro too among my other dx's like TOS and Hashimotos thyroiditis.

A rheumy is a great doc to go to to help manage fibro.

I have tried and researched many different things. And lately I feel like I have been connecting more and more dots together.

So even though I am not done reading on my latest self discoveries I thought I would share. I am going to post the whole thing in a couple weeks. And I have no medical training just self discovery and a desire to feel better so I do a lot of reading and experimenting.

Is fibro autoimmune? could be...good amount of people with automiummune disease certainly suffer from it. I wonder sometimes if it more a result or symptom of something than a illness in and of itself but I dont think anyone really knows.

So ok here is what I have stumbled upon for myself. Please know that this is specific to me and I am not saying in anyway that this could be applicable to anyone else. BUt the board is about sharing so I am going to share.

I had a bad case of autoimmune hashimotos thyroiditis plus a goiter. The goiter was painful and made my TOS hurt worse with the pressure it put on my neck. Plus the docs had a hard time controlling it with meds. So we took it out. Its better but that was the best solution for me personally and surgery for thryoiditis is a last resort.

Feel much better when it was out but fibro was acting up more. More tired, much more achy and just could not move, was so tired. So I trended it, the pain and feelings and I saw a cycle.

It was much worse around my periods. Plus I had this annoying pain in my right side so I went to gyn to check it out. He said checkout pain with gastro in the meantime so I did and everything was fine gastro wise.

So back to gyn. He did exam and we had a nice long talk. I learned alot.

First off he explained that he thought that a lot of my pain was due to something called prostaglandins. So off I went to find out what the heck these are. Nasty litle buggers!!

I will simplify because I am saving some of this for my longer more comprehensive post.

They are hormones. Yep hormones....I thought hmmmm more autoimmune connections. Because thyroid is hormones and you have 3 sets of main hormones in your body. Thyroid, sex hormones and adrenal hormones. Its like a 3 legged stool. If one is off then the other two can be off or over or undercompensate.

But back to those nasty prostaglandins. Here is the short story on them. There are 3 of them....PGE1, PGE2 and PGE3. Numbers 1&3 are good guys but PGE2 is a bad guy. Prostaglandins are made by uterus in endometrial lining. Its a local hormones tissue. They are made from essential fatty acids. What do they do...they cause muscle spasm to induce mentural cycle or labor. Hmmm another connection...they cause muscle spasm and pain!!!!!

But if your body starts overproducing them you get high levels in your blood plasma they cause pain and muscle spasms everywhere and you just ache. PGE2 can cause an allergic or inflammatory state. Prostaglandin (PGE2) causes inflammation, leading to redness, swelling, constriction of blood vessels and decreased tissue permeability. And along the way one doc did tell me that I had a strange all over inflammatory state. And my pain was constant but absolutely worse right beofre my periods and at it's lowest right after. Interesting but prostaglandins are at their lowest right after your period. Hmmmmm another connection for me.

I have been looking to see if there is something to make them better and so far in terms of natural stuff I have been using borgae oil and its helping.

Prostaglandins are also helped by COX2 inhibitors like motrin advil or prescription drugs like cellebrex or mobic.

Ok I have a point here...(circling back to connect the dots)

So gyn clued me into what could be causing my pain but why. My periods were worse, heavy bleeding (which can be exaccerabted by hypothryoidism), bad cramps and pain and very emotional.

He mentioned dysmenorrhea which is a fancy name for painful periods which said I likely had. And prostaglandgins make it even worse. "Excessive rise in PGE’s can be 4x as high in dysmenorrheagic women and can be trigger for cyclic pain"....hmmmm cyclic pain...fibro? "The cause of dysmenorrhea is thought to be the release of excess prostaglandins"

I saw a connection atleast for me.

He went even further and we talked about a condition which based on all my symptoms he believes that I likley have which is endometriosis. Some believe that endo is actually an autoimmune condition. And I recently read although I cannot find the quote that many women with endometriosis also have a fibro dx.

And just to make sure we covered all of the bases he also checked my sex hormones levels via a blood test. Given my age I am perimenopausal.

But what came back, sex hormones all low especially estrogen. And while I would never recommend hormone replacment or estrogen supplementation apparently when your estrogen levels are abormally and consistently low you feel like crap. Estrogen is a natual pain reliever apparently. "Estrogen increases serotonin production by acting like a MAO inhibitor, without estrogen MAO levels are high and serotonin is low. Drop in estrogen causes pain threshold to be lower"

My estrogen, testosterone and progesterone were abnormally low. And if estrogen is a natural pain reliver, progesterone apparetnly is a muscle relaxer. Another connection (sorry I am big on linear thinking)

So the doc and I discussed a conservative approach to how to treat the dysmenorrhea and he possible endo (because endo can only be properly dx with laproscoptic surgery and we are not at that stage yet).

The first thing we tried was birth control pills. And I was surprised that it did help the pain that I was now constantly in and that was worse right before my period. I am functioning much better now. Pain lower and more manageble. Also using cellebrex but only when it is bad. And using borage oil.

I actually did more research on birth control pills (BCPs) and what one would be the best for me. And yesterday I went back armed with information and had the most logical discussion I have ever had with a doctor (the gyn). Because of the trend of my low estrogen levels (I went back and charted a whole year and a half worth plus the day of my cycle) we decided to switch my BCPs to a more balanced progestin:estrogen ration as opposed to the low estrogen level. Better for me given my age.

Apparently the progestin in the BCPs actually block the uterine ling from producing or producing less of those nasty prostaglandins.

So What I would recommend to you is....chart how your daughter feels for 2 months around her periods. Check if they are heavy. IS the pain worse. Look for signs of dysmenorrhea.

Get her thryoid levels and thyroid antibodies checked (the antibodies are important). Get her sex homrones checked and keep track of the day of the cycle.

And talk to the Gyn about her pain to see if there is any connection to her homones.

Taking BCPs is a personal decision but it is helping me at the moment.

Hope this helped and please know that my research and my conclusions apply to me only.

Good luck.

To answer your first question, it could be a virus, it also could be a variety of other things that cause it such as a simple fall or even a minor car accident. As of right now, there is no official cause for my fibromyalgia, I just have it. I am visiting my FM specialist later this month and I will ask about the latest and greatest on the research end and see what he says.
As the others have said a good rheumatologist is very helpful. I also go to a pain specialist to help with the muscle pain I get from it. Unfortunately medication can only go so far and right now most of us have to "live with" what the meds can't cover.

....I know that you prefaced your message with the notation that this is what you are wondering for yourself......and very possibly it has merit for some of the fibro population. I certainly know that I must have had very high PGE2 levels back when I used to have a uterus because of certain symptoms that I displayed.

So it is obviously not a theory that can carry across-the-board because men also get fibromyalgia and post hysterectomy women also ------unless these pesky PGE2's are also released from some other organ which is shared by both men and women. Do you know if the uterus is the only organ that produces and releases PGE2?

Definition of Prostaglandin E2


Prostaglandin E2: One of the prostaglandins, a group of hormone-like substances that participate in a wide range of body functions such as the contraction and relaxation of smooth muscle, the dilation and constriction of blood vessels, control of blood pressure, and modulation of inflammation. Prostaglandin E2 (PGE-2) is released by blood vessel walls in response to infection or inflammation that acts on the brain to induce fever. The enzyme mPGES-1 is involved in the production of PGE2 and is an important "switch" for activating the fever response.

So the answer would be yes....men and women can have the PGE2 hormone.

I have been on estrogen for three months and my pain is the same. I have had endo in the past and had an hysterectomy for it. The endo was excruciating. The fibro is worse than that was, though. The pain is constant and sometimes debilitating. I have been on many meds, including celebrex and mobic. I am on Lyrica now and am waiting for it to "kick in" if that's what it needs to do! The only thing that relieves it is hot baths or heating pad alternating with cold packs, depending on what feels best, and lots of stretching. When I can, I walk, and I go to an aquatic class specifically for fibro patients at our hospital. The water is usually 93 degrees, and that gives me immense relief for a day or so. Of course, if I were more consistent with going, it would be more helpful, I'm sure.

Another condition that I am positive was triggered by the fibro is bipolar disorder/anxiety disorder. Watch out for that! Once depression takes hold, everything gets worse! I was undiagnosed for 35 years, and I finally had a nervous breakdown. I was diagnosed with fibro about 5 years later; I finally found a doctor who "believed" in fibro. In fact, he suffered from it himself. I began a course of trigger point injections, and they were and are really the only thing that gives me relief for any extended period of time. I am searching now for a pain management center that specializes in fibro because I have moved from Florida to Illinois.

God bless you!