Crohn's and fibromylagia

[tishbite]

crohn's and fibromylagia

Does anyone else here have both?

 

[sunflower]

Yes! And from my rheumy told me, it is common to have fibromyalgia secondary to an inflammatory disease. I wish they know how all that worked so they could treat the fibro better! Sometimes I can't tell if the fatigue is from that or the Crohn's.

 

[tishbite]

Yeah it's all confusing to me. I don't know which symptoms are from what and what will make them better. I get medical marijuana and it isn't even helping with the fibro pain and the dilaudid only helps my stomach pain so it is so frusterating. I always have numb/sore limbs.

 

[KazT17]

I have been told I have fibro too. The pain is awful, I wish they knew more about it.

Kaz xxx

 

[D Bergy]

I know a little about Fibro from m own lyme research. It is such a general non-specific diagnosis, you have several suspect pathogens that may be involved.

The first two would be what I would go after.

Lyme itself, using a natural antibiotic, since that is easy to get here in the U.S. Nutramedix Cumanda, or Samento will work enough to tell if it is Lyme or not.

The other suspect pathogen could be one of the Mycoplasma family, which like Lyme also weakens the immune system. There are a few different Mycoplasma strains, but Cumanda will kill them if it is used for a longer time.

There also is a DNA test for Mycoplasma which would be the first thing I would have done. The Lyme tests are unreliable at best, so I would get that test also, but not to rule out Lyme, but only to confirm if it is positive.

Dan

 

[outlier]

I have some ankylosing spondylitis which is often confused with fibromylagia. it is inflammation of the tendons and ligaments mainly of the back and hips. is an inflammatory arthritis and goes with crohn's just something else to thing about.

 

[sunflower]

Yes, I am learning more about that one, too. For years I have had "hip" pain off and on. Not to mention pain in other joints too. Now with this last flair, I learned that the pain is not my hips, it is in my SI joints!! No wonder none of my doctors took me seriously! I was talking about the wrong joints! I have had neck stiffness for several years now, and terrible pain in my back. So, either I was diagnosed wrong, or I have both!

 

[outlier]

i know i've learned the difference between shoulders and shoulder blades. and hips and si joints as well as knuckles vs muscle pain (don't ask how you can get that confused but when it's happening to you it can be0

 

[ormsklad]

I have both but my gastro said its down to the crohns anyway

 

[CrohnsNYC]

I have both Crohns and Fibro. The fibro diagnosis came two years after the Crohns and from what I have learned is not all that uncommon. Since Fibro is a diagnosis of exclusion, your doctor really does have to rule everything out, including Lyme disease before a real diagnosis can take place. I was tested for it several times, even though I knew it was impossible since I live in NYC and am almost never in a rural or suburban area. You will also encounter people who don't think Fibro is a real condition - but it is. I sought a second and third opinion, and all three doctors said very similar things. Anyway, having both is tough and it is very difficult to distinguish between the symptoms. Feel better and hang in there.

Beth

 

[tishbite]

ah, thanks yeah. i'm just taking things one day at a time.

 

[Crohns08]

I have both, but I find when I exercise and take vitamin D the fibro goes away. When I stop it's back to the same crap again with the chemical sensitivity and pain.

 

[sunflower]

Interesting about the Vitamin D. I started taking it and it made me feel worse!! Yeah, I didn't believe it either because everything I have read says it is great. I just kept feeling more fatigued, and then my hands starting hurting. It was horrible. I could hardly move them. I blamed that on severaly things. Then I ran out of vitamin D for a while, and things got better. I got some and started taking it, and I got worse again.

My MIL thought I was crazy, but she finally started taking vitamin D. She had been after me to take it but didn't take it herself! LOL!! Anyway, she started telling me about her hands hurting so bad, and I reminded her about me. She quit taking it and her hands got better. Very strange!!! We are not even related.

Now I only take the vitamin D that is included in the multivitamin.

Outlier - I am still trying to learn what is what where pain is concerned! Fibro just complicates things because you ache all over from that, when something else is going on. I thought my Crohn's was really making me ache, and then realized I had a sore throat that turned out to be strep! How weird is that??