anyone with fibromyalgia??

Anyone have a positive diagnosis for fibromyalgia? I have been reading up on it and I think that this may something that I am suffering with in addition to the migraines...
Anyone have any experience with this disease? Should I ask my neuro or my GP to test me for it?? Thanks! Michelle

Yeah I have been diagnosed with it. Not sure if it is an accurate diagnosis (as I still have a lot of other unexplained symptoms), but it does seem a good fit. I do have positive reactions with all the tender/pressure points. One thing to be aware of is that a lot of doctors still don't believe in it. Fibro is often co-morbid with migraines and other headache conditions, as well as IBS. Your neuro or PCP may not be familiar enough with it to make a diagnosis or try to treat you for it...the most commonly seen doctor for fibro is a rheumatologist...and even then, they got it assigned to them by process of exclusion.

I'd look for a rheumy who actually states on their bio/website that they treat fibro (as some of them even don't believe in it, or get annoyed by fibro patients). There are some possible treatments, but like migraines, they can be very hit or miss (a lot of the treatments overlap, such as using anti depressant and anti seizure meds for their pain relief properties). A good rheumy will test you for other conditions it could be, do a tender/pressure point test, and from there decide if it could be fibro (often even then you are not given a definitive diagnosis).

They should also try you on some natural/alternative treatments, such as massage, pt, water therapy, Vitamin D or B12, etc. Vitamin deficiencies can cause fibro like symptoms, as well as auto immune disease, Lyme, etc. Speaking of Lyme, for an accurate test, you need to use a special lab and see a Lyme literate dr (the widely accepted test gives a lot of false negatives and doesn't test for co-infections). Some lifestyle changes such as a light exercise program, using heat or ice as needed, not overdoing activity, etc, can also help.

Some people find themselves to have periods of flares and remissions (or at least lesser symptoms), be worse a certain time of year, etc. Obtaining restorative sleep can also be very helpful (often a sleep aid is helpful). I was however surprised that neither rheumy I saw wanted me to get a sleep study (only very recently did I have one). As fatigue and sleep issues are so common with fibro, I'd definitely push for one if its a factor for you. There are some helpful fibro support groups out there. You definitely see a wide range of affect on different folks (some folks never mention it to their doctor or think anything of it, and some are completely disabled).

I wouldn't walk into your doctor appointment and say I think I have fibro, but instead I'd say I've been experiencing A, B, and C (symptoms) for X length of time and am concerned it doesn't appear to explained by migraines (plus whatever other conditions you have) or medication side effects. They will often try to explain away symptoms such as fatigue and aches saying it is part of the headache condition or they are medication side effects or you are getting older, but if you just have that gut feeling that this is something new and different, definitely mention that. If you need a referral, I'd pick your PCP over your neuro (if your insurance needs a referral you will need it from them anyways). Best thing however I think is to research and find a rheumy yourself.

For me, I had quite an acute fibro onset. Although I had been experiencing some of the misc symptoms and common factors (such as Reynaud's) even from childhood, the major stuff like the fatigue and aches and brain fog all came on in a period of a couple weeks. Amazingly, at the same exact time I also started having eczema for the first time (adult onset is rare), plus I had a recurrence of chondromalacia patella (knee pain caused by cartilage damage, which I hadn't had an issue with for about 10 years). All my symptoms/conditions seem to tie into auto immune. I keep having doctors tell me they think something auto immune is going on but they can't actually diagnosis anything at this time (nor does it show up on bloodwork, such as an ANA test).

I have seem two rheumys who both gave me the same diagnosis and tried a couple treatments, then gave up. A lot of the meds that could be trialed I already knew I couldn't tolerate (from the headache treatment), although I was specifically trialed on Plaquenil and Cymbalta. Although I had documented vitamin D and B12 deficiencies , the high doses they tried (B12 was given in weekly injections) didn't make a difference. I was already getting massage for my neck (where they also work on my back, arms, etc) so that helps a little, but getting my legs massaged didn't seem to help with those aches.

I'm sure the pain meds I'm on help the aches (although the fibro started after I started the pain meds so I don't even know my baseline fibro achiness). I call them aches because for me, it doesn't really register as pain (at least compared to my head). Its just a soreness, stiffness, achiness that is quite annoying. I feel it most when standing after sitting awhile or when I am walking around for a long time. I get worn out really quickly.

Both doctors I saw for the fibro (and those I mentioned it to) freaked out that I was on pain meds...even after I told them I was only on them for my headache condition. They really don't like you to be on pain meds (apparently they think it makes fibro worse?). Luckily for me my fibro symptoms aren't the worst thing I have going for me. Definitely be your own advocate and don't take no for an answer, but be very careful about how you proceed, such as what doctors you pursue. The road to fibro diagnosis and treatment can be quite long and bumpy. Best wishes.

Yes, I have fibromyalgia..diagnosed by my pcp..