Fibromaylgia

[chainsaw]

Those of you out in IC land who also have Fibromaylgia, can you help me? What symptoms did you have and what type of doctor did you go to who diagnoised you? Also, how do they test for this? I hear there is NO x-rays, or anything that they have to diagnoised this.

The reason I am asking is that for the past few days, my back (mostly) down around my waistband (it seems to be working itself around to the sides as well) has been "sore to the touch" and my pants waistband seems to bother it. A friend of mine who also has IC said that it sounds like it could be Fribromaylgia sense that is one of the related diseases that people with IC can get.

Any help you can give me would be very helpful. Thank You,
Kim H

[Sarojini]

I have fibro and my symptoms include (when flaring) extreme fatigue despite getting a lot of sleep, extreme muscle soreness, morning stiffness, and a generalized feeling as if I were getting the flu... including that "foggy" feeling. Like you, my skin also seems to "hurt."

I was diagnosed by both a urologist (an IC specialist who also dealt with the other problems ICers have) and a primary doctor -- although some see a rheumatologist for this problem. You're right in that X-rays, CT scans, or MRI's don't show any abnormality in fibro but often they are used to rule out other problems.

I had tender point testing done (fibro patients usually have tenderness in a specific set of 18 tender points) and I had tenderness in something like 15 of the 18 -- the doctor just presses the spots. I also had some blood tests to make sure nothing else was wrong that way. Since there wasn't, I was diagnosed based on symptoms and the tender points.

I also have myofascial pain syndrome, which causes hard knots to form in my muscles for no particular reason, resulting in severe, cramp-like pain that radiates to other places. If you have this as well, sometimes it's hard to diagnose fibro too, but usually if you have the other symptoms I mentioned it can be teased out.

[marsi4]

I,m just wondering how does one know if they have fibromyalgia or rhumatoid arthritis if one has joint pain on fingers? By going to see a rhumatologist I know but I'm waiting to see one and just want to get some information about my condition by anyone who knows prior to my appt.

Marsi4

[K-lee]

I dont have this but one of my really good friends does and there isnt any specific test they can do for it, its dxd by all the symptoms you have. She's very knowledgeable about it so if you want to PM me I'll give you her e-mail.

Good Luck,
K-lee

[ICNJess]

I've had Fibro for quite some time, and my symptoms are unrelenting fatigue to the point where I would sleep on and off all day (part of a bad cycle) and could hardly move, as well as really bad muscle pain where it hurt to do any movement at all. Some days I crawl into bed and my whole body is just screaming in pain.

I got diagnosed through the pressure point exam. My worst areas are my shoulders, neck, back, and arms. I flare up with bad weather...I am actually more accurate than weather forecasters!!

[tlacey]

I just found out yesterday I have Fibromyalgia. In the past 6 months I've had 3 MRI's, Urodynamics, a test interstim put in and they threatened me with a spinal tap. The neuro was testing for MS; talk about scaring someone. No one had any idea what was wrong with me beside my IC, IBS, TMJ, etc., etc. Now I have a name, but the outlook still doesn't seem all that bright. I haven't had a good night's sleep in about six months, I can't work, I hurt allover. When I'm in bed it reminds me of the story of the Princess and the pea.

I need all the advise and ideas I can get on how to deal with this and win. I want to beat it; not it beat me.

[jck]

I have recently started have migraines which have never had before, hips hurt really bad (not bone, it is muscle pain), lot of lower back pain and very stiff in the morning. I can't jump out of bed, it takes me a little while to get moving. I feel like I am moving through mud sometimes. Does this sound like fibro?

[ihurttoo]

Chainsaw, I dont really have anything to add to the others. Except to say that you need to get a referall to a rhematologist. They are vey knowledgeable about the meds and treatments that are effective for fibro. Tlacey, I noticed that you do not have a sleeping pill in your med list. This is essential in treating fibro. It is MUCH worse when you aren't sleeping properly. Also, lidocaine topical patches help my fibro ALOT. I cut them up into strips and place them on the sore places and the knots to numb them up and dull the pain. The rhem also gave me an anti-inflamatory (Diclfenic). This is also helpful. Lastly, and most importantly, she put me on muscle relaxors. I take Zanaflex, 4mg 3x a day. Mu rhem also recommends that fibro patients get 9 hrs of sleep a day, and that they walk at least 20 min a day, and do 25-20 min a day of gentle streching. Massages by a knowledgable professional are also helpful, if you can fit it into your budget. If not, you can ask your spouse to do this. If you do, have them work outside of the muscle group slowly first, with a gentle touch, and VERY SLOWLY increase the pressure and intensity, and work toward your most painful areas and tender points. By the way, my rhematotogist also does trigger point injections for the tender points. These contain lidocaine (for the pain and to numb, and a steroid for the inflammation that causes the pain. I will be having my first set next week, but I have heard from others that have done these that they are a God-send! Worth a try!) She also recommends that all of her patients get a whirlpool tub or at the very least to buy 2 or 3 of those attachments that turn your bathtub into a whirlpool. (Conair makes a good one for around $70.) But to be most effective, you need 2 or 3. Place the jets on your tight, sore spots, then move them around so that each spot gets attention. Take the mucsle relaxors first. Then get in the tub, make the water as hot as you can stand. Then when I get out of the tub, I put on the Licocaine patches. Then go to bed and take a sleeping pill if necessary. I hope this helps you. It is very important to see a rhemalogist for this instead of a GP. Regular drs are generally not very understanding of how debilatating this conditon can be. I have found that rhematologists are much more sympathetic to the pain and daily discomfort can cause, and are much more willing to make you comfortable. And for you, JCK , yes, it does sound like fibromyalgia, but it could also be caused by low estrogen levels. I had migraines and fatigue for years, prior to my IC, fibro, and other troubles, and they turned out to be hormonaly related. After I had my hysterectomy and was put on estrogen, my migraines and fatigut disappeared. Now my fatigue is back, but it is med, and fibro related. But do please have your estogen levels checked. After I found out that it was causing my trouble, I had a friend AND and former coworker who both had migraines for years and it turned out that they both had messed up levels too, they are now on meds for it, and none of us have had a migraine since! So please check this out!! Hope you all feel better soon!! Hugs, Amy :grouphug:

[ICNDonna]

Starting with the primary care physician is always a good idea. That way the care you are receiving from your specialists will be coordinated by one professional. And your primary care should be able to at least tell you if fibro is a possibility based on your symptoms.

Donna

[tigger_gal]

http://www.ncemi.org/cse/cse0908.htm checl out this site.. I have fibro too and it is very painful..