Do I have fibromyalgia?

[badlydrawnboy]

I was diagnosed with Crohn's disease 2.5 years ago after a long and mysterious struggle with a previously undiagnosed chronic illness. I've not been diagnosed with FMS, but lately I've begun to wonder if some of the symptoms I experience would be characterized that way.

I have frequent aching pain in my lower back and legs. It can get very bad after standing for as little as a half hour - it seems the muscles in those areas fatigue very easily. But it gets even worse at night when I'm trying to sleep or when I lay down and try to take a nap during the day. I get a feeling in my legs like I want to crawl out of my skin, or that I absolutely have to stretch my legs or I will die. It's hard to explain. My lower back gets so sore that I am turning over in bed literally every 2-3 minutes trying to get comfortable. Sometimes putting a pillow between my knees helps, and sometimes not.

Basically I am aware of this all through the night, so that means I'm hardly sleeping at all. And of course, the less sleep I get the worse the pain and soreness and restlessness gets; the worse all of that gets, the worse the sleep gets and so on.

I've read the diagnostic criteria and I don't seem to fit the FMS profile. For one, the pain is almost never in my upper body.

One doctor suggested the lower back pain might be due to the inflammation of my small intestine (Crohn's) radiating towards the back.

Anyways, just wondering if these symptoms sound like FMS or something else.

[buddie]

Hi,

Sorry to hear about your Crohn's Disease. Because you obviously already have a problem with your immune system, it is not surprising that you are having other symptoms like low back pain and insomnia, etc. Most people who have immune diseases share an array of symptoms and unfortunately we are left to run from specialist to specialist to try to get help, crazy. What we usually get is yet another diagnosis but really not much help, no cure.

I had similar pain as you are describing and got an x-ray of my pelvis, specifically the SI joints, which led to a diagnosis of ankylosing spondylitis. There are also many people who have chronic low back pain with no apparent injury, etc. I do remember always being a back sleeper until that started then it was back and forth fetal position all night long.

See if your family doc will order an xray and some blood tests. Have you been doing any exercises to keep that lower back strong and stretched? That helped me alot, more than probably any medication ever did.

[badlydrawnboy]

Thanks for your reply. I do think this is all connected - how could it not be? My G.I. thinks the back pain is related to the Crohn's but the leg pain isn't. I know the leg pain is directly connected to the Crohn's because it gets worse when I have a flare.

After doing a bit more research I think it's much more like restless leg syndrome than FMS. Actually, I almost fell out of my chair when I read the RLS description because I had never heard my symptoms explained so clearly - even by myself!

I really could care less about a "diagnosis". The main thing is what to do about it all. The reason I'm posting here is that insomnia and I guess what you'd call RLS is making everything else worse. In the past I tried Xyrem because I have alpha intrusion, but I had such a hard time making it work and finding the right dosage. Perhaps I should try again.

[buddie]

Sounds like you really GET IT, if you know what I mean. These symptoms and syndromes/diseases are related.

They make medicine for RLS, but as with any meds it works well for some and not others. You are so right about bad sleep or no sleep..It just exacerbates everything.

My first experience with RLS was when I was a kid..it really made me feel anxious. I was always anemic. They have made some connections with iron deficiency and RLS in recent years.

Sure hope you find some help.

[CG]

I have Sciatica and the pain you mention resounded with me.

http://www.mayoclinic.com/health/sciatica/DS00516

[daisys]

I've gone to various message boards as I've gotten diagnosed with one thing after another: CFS, FM, RLS (restless leg syndrome). I also had Epstien Barr chronically--so always had Mono.

Then I was diagnosed with lyme disease, the fastest growing vector disease in the US, usually tick bites. Most people don't remember being bit by a tick or seeing a bull's eye rash.

Anyway, my point is ALL the syndromes I have, and many of the diseases discussed here, including Crohn's, are discussed on lyme message boards. People give their history by recounting all the diagnoses they've gotten thru the years, and then found out it was lyme disease. That's what happened to me.

My doctor tells me I will have energy and no pain. People who have gotten well, and are kind enough to come back and spend time answering questions have told me I will not have restless leg syndroms when I get the disease under control.

It's worth it to go to one, say Lymenet flash, or Healing well lyme, and search for your own disease, ask questions, or just start reading.

Actually, there are some who say that FM is just another way of describing lyme. I happen to know one person who got FM thru injury, so I know it's not 100%, but it's worth it to look into this if you have FM. There's treatment, and you can get better.