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Posted By : L Rachel - 2/24/2017 5:11 AM
Hi all,

New to this forum, but certainly not to chronic disease. I have a rare genetic disease and was also diagnosed with ulcerative colitis a few years back. Since then, I've experienced a downhill spiral symptom-wise. I wake up feeling like I've been beat up, am constantly exhausted even if I sleep a full time, have anxiety/depression that is getting me to the point where I'm not sure how I'll continue to work, IBS even when my UC is in remission, and react to all medications and alcohol really, really strongly (if there's a side effect listed, I'll have it x10), plus a whole list of other problems. My doctors either attribute my symptoms to my UC or as side effects of UC drugs. But the symptoms predate the drugs and seem to be getting worse, even as my UC gets better. I am really concerned about how I'm going to keep working when I feel this awful all the time and how I will obtain insurance if I can't. One UC medication alone costs $60,000 annually out-of-pocket.

Having been through the process of waiting and suffering for years before getting a diagnosis (and being treated like I'm a crazy person in the meantime) a couple of times before, I don't want to wait this time. I'm seeing a rheumatologist in a month. Are there any tests I can take which can point to fibromyalgia even though I have UC?

Thanks, all!

Posted By : Sherrine - 2/24/2017 7:57 AM
Hi, Rachel, and welcome to the fibro forum! You sure can get help even though you have ulcerative colitis. I was diagnosed with UC for eleven years when...ooops!....they found out I really had Crohn's disease. I have that along with auto immune inner ear disease, diabetes, and ankylosing spondylitis. These are all auto immune illnesses but fibro is not considered an auto immune illness.

I'm glad you are seeing a rheumatologist. Make sure they treat fibro patients because there are still doctors out there in the Dark Ages who don't believe fibro is an illness. These are the ones that say it's all in your head. Do not let anyone tell you that! It's not in you head! It's in your body. I make sure my doctors are board certified and, if possible, diplomates. Diplomates have to keep abreast of the new things in medicine and are tested in order to keep the title of diplomate. That's what one of my doctors told me. Remember...50% of the doctors graduated in the lower half of their class.

Secondly, start keeping a journal by writing down the pain you feel when doing various things. In Fibro 101...the first thread on the will find a link to Pain charts. Pick one, print it out, and use this to describe your pain in the journal. Then take the journal and the chart with you to your doctor's appointment. This will really help your doctor understand better what you are going through.

The rheumatologist should take blood work to rule out Lyme disease, lupus, and other illnesses that have many of the same symptoms as fibro. There isn't a good test for fibro so they need to do this to get a fibro diagnosis. This is good, too, because you will know for sure what you are dealing with.

Be sure to read Fibro 101. There are good links about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.


Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Natik/LA - 2/24/2017 3:39 PM
Hi L Rachel! I am new to this forum but not new to Fibro for sure.. Looks like it became very difficult for you to keep working and maybe you think about going on disability? (if i understood you correctly).
If so i can only say that it is technically difficult to get disability thru FMS. Talk about it with your rheumatologist, he might suggest you something else. I prepared my disability case by myself, without a lawyer, and i got it on a first try, just 3 months after i applied. I based my claim on depression/anxiety and it worked. In any case - feel better and good luck.

Posted By : Ljm2014 - 2/24/2017 9:50 PM

I can relate to the medicine sensitivity , so far there is no amount of muscle relaxers, that i have tried, that i can tolerate.

I always ask for lowest doses. Years ago tylenol would help with pain , but it made me so i take very low doses of tramadol , which, as long as keep my dose at 1/4 normal...helps with pain, without the side effects.

So i can get help with meds, but almost in a childs dose.

I rarely take colds now, but in past years i could only take the dose of triaminic that was for 4 years old . It helped with my symptoms, but i had to take the same amount as my kids..

Have you had to lower doses like this?

Also in some medications, i can only tolerate certain generics and not others..which a pharmacist said ,can happen with certain fillers used in generics..

It has been very trial and error with medications, for those of us with sensitivities. Not all people with fibromyalgia seem to have that.

We certainly have to advocate for ourselves to still get help , but at the right dosage for ourselves.


Posted By : bcfromfl - 2/25/2017 2:31 AM
Your symptoms suggest to me that a possibility for you to investigate is exposure to formaldehyde. I made a thread for this over on the Chronic Fatigue forum: Some of what you are experiencing is similar to what I've been through, and even though you have a pre-existing condition, chemical exposure could be compounding your issues.

Unfortunately, those of us with autoimmune conditions can't usually rely upon most doctors who are available to us for quick diagnosis. Your key to finding answers also depends upon becoming your own advocate, and asking you are doing here.

I understand what you're going through, and I wish you the best!


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