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.