Hey gang!

After reading volums on both illness I can't help but wonder if one leads to The other. Since UC is an autoimmune disease, could it be that which leaves us vulnerable to other illnesses like fibromyalgia? For years I've been suffering with chronic pain, exhaustion and sleeplessness, but always assumed it was due to my UC flares and surgeries. It still may very well be the cause, but when I put 2 and 2 together, I'm left wondering can it all be blamed on one illness? I know mostly women suffer from fibromyalgia (current ratio is 9 women to 1 man), but it doesnt mean it's impossible. It would be so nice to have a diagnosis that doesn't make me feel crazy. I know that many of you have both UC/Crohns/IBD and fibromyalgia, but what's the link?? Does anyone know what tests they use to diagnose it? I have a few of the symptoms such as sleeplessness, restless leg, systemic joint and body pain, chronic anxiety/depression, lethargy, but to name a few. I know I probably sound like a hypochondriac, but there has to be an answer, what do you think? Those of you with fibromyalgia, what were your symptoms, and how were you diagnosed? Does anyone know why we GI patients are more prone? Any and all info would be helpful, thanks gang!

Cheers,
Eric Eeker
Original Post
Sounds about right...my mom had it and suffered a lot...not so sure about me...I know that if I don't fight it off on a daily basis and force suppliments down my throat and work out at least an hr a day then I end up feeling it all...(no diagnosis) but then again, with my (and most of our) medical histories it would be a miracle if we didn't have something that bugged our little bodies a bit...
Many people say that an auto immune lead to another and that UC is just one manifestation and that fibromialgia is another.
But I do believe that there are some tests that can be done.
By the way, if you were a girl, I would say that it was menopause! Same difference. You ache all over, are constantly tired, sleepless, cranky and depressed. The only difference is that we (the girls) lose hair on some body parts and grow it in all new and exciting places.
Sharon
Hey Eric! There is no official test for fibromyalgia unfortunately. It is a diagnosis based on your symptoms and ruling out other conditions that they can test for. There are also trigger points around the body that are typically sore for folks with fibro. I know there are trigger points around the joints and over the neck, back and butt. I was diagnosed with it by my rheumatologist. I get achy all over when it flares up but the pain is centered around my joints and is always bi-lateral. I take Lyrica to help control any flares (just recently increased my dose as I am flaring right now) and Tylenol 3 for pain. I also take meds for my fatigue to help keep me awake and alert. I think some of the newer research is actually pointing to a neurological component for fibro. In some places I have read that rheumatologists are treating fibro patients with neurologists. I guess the idea is the brain is misinterpreting signals and sending out pain instead. I wish I knew the link with UC too. If it has anything to do with the neurological system I would think that suggests no link but who knows.
There is no test for fibromyalgia, been down this road. You can test for lupus since those mimick eachother with symptoms. I was tested for lupus just in case since I had so much pain.

Anyway a lot of doctors don't even believe in fibromyalgia. Some claim it is just a label to give someone when you can't say what is causing something.
I am responding to this post as I have had chronic fatigue, joint and muscle pain also since my takedown. I never experienced this pain in my muscles in both arms and legs pre surgery. I also suffer from insomnia since my jpouch surgery and thought it was from getting up several times a night to go to the bathroom, but now I'm convinced it is due to the pain waking me also. I wish I could make some correlation also. I am going to see a rheumatologist myself in the next month to get tested for lupus and rheumatoid arthritis. The other option is osteoarthritis from years of pred use but the tender muscle pain is something I never had until jpouch surgery and why after 23 years of pred on and off would I suddenly develop this pain only after having my colon removed?
Hey Eric,

I had UC, and have a 20 year old pouch. Diagnosed (approx. 4 years ago) with fibro, chronic fatigue, chronic pain, anxiety/depression etc. I am not sure what the connection is, but it seems to me that the large intestine is involved in more biological functions than just waste storage and removal. I have posted links in the past on how the intestines function as our "second brain". God only knows the answer to your question.

Markus
hi..i had uc that lead to jpouch which led to chronic pouchitis..however my symptoms(awful enough) do not include any joint pains or unusual tiredness or depression but i think from everything i read and know ..

1. uc is classified as a autoimmune disease and most often if you have one you have or can get another..

2.as someone else said the intestines and what they do and can cause is very complicated.. digestive problems of all kinds are related to mental state,joint pains,allergies and so on..

so to answer the initial members thread is not so clear cut..
Try magnesium oil!

Several people in my family have fibromyalgia & I was having symptoms (as well as having a long history of several auto-immune diseases). Often times, 1 disease can snowball into more. But my symptoms went away about 2 weeks after using magnesium oil-just spray it under your armpits (without deodorant) or on your stomach or back or belly-think large muscle groups-you can do it in the morning or night or both! For some reason, taking it orally it doesn't absorb as well as through the skin...

http://www.amazon.com/Ancient-...nesium/dp/B001AD0HL8
Jeane, my takedown was 4/30/2012 and now, I too am having the same symptoms. I thought maybe it was because I was so malnourished, on a picc line from 6/18 - 9/11. Now, I am having serious muscle pain in my left hip and thigh. I do alot of rubbing to see if that would help me out. Walking is difficult in the morning to get everything moving. Who knows......I am getting so tired of all my new ailments! I try to just keep on trucking!

Roberta
Fibromyalgia often happens to people who have had a lot of trauma - both emotionally and physically. UC and the surgeries we have had definitely make us more susceptible to fibromyalgia. I am definitely a sufferer.

I have a question on magnesium. I know it helps fibro but I have found if I take it that it relaxes my rectal muscles too much and results in night time incontinence. I have had my pouch for 20 years. Does anyone else have this issue?
I use a supplement called "Fibro Malic" by Trask. I don't have night time leakage but still need to take Lopermide, prescription Imodium, 3.5 years after my surgeries. I quit taking FIbro Malaic a few months ago to see if it was still helping my fibromyalgia or not and if it had any effect on my stools. I found out that my fibromyalgia muscle pain increased and there was no change in my stools.

I take 3 capsules in the am and pm along with 4 softgels each of super omega -3 supplements by the brand LifeExtension. Both of these contain other supplements like MSMm olive leaf extract, malic acid and vitamin B6. I also take other supplements but I take these 2 together twice a day. I have no idea if the combination of the Omega 3 supplements with the Fibro Malic helps prevent a diarrheal effect or not - I am guessing so. The doses I am taking are the suggested doses and are not larger than they should be as in total furnish 100% of the daily required amount of elemental magnesium.

They are both available on-line, Amazon, and LifeExtension supplements are sold at most health food stores. I've never looked for Fibro Malic at local health food stores.

If you'd like to know the other vitamins and supplements I take let me know but I probably take them for different reasons than you need them for. (For instance I take 400 mg of riboflavin under the direction of my Neurologist to help with my migraine headaches. I also take daily medication for migraines.)

As I said above I was diagnosed with Fibromyalgia a year after my UC diagnosis and after taking prednisone for 6 months. It has gotten much worse since then and I can no longer work. I get therapeutic massages every other week that really help.
Trudie,

Have you tried taking your magnesium first thing in the morning? It might not have the laxative effect in the evening if taken earlier.

Sue Big Grin

It is not a laxative effect but a relaxing of the muscle. Last time I tried it was mid afternoon and I still had night time leakage. I have not tried the morning. Will see if I can handle. 

I have dealt with Fibro for over 20 years. Ive had gut problems since I was 5 - chronic constipation (I maybe went once a week) - and then in my 30s it changed to the opposite and was diagnosed with UC. When I was diagnosed with Fibro it was by a visiting Dr as the Drs where I was didnt believe fibro was a think. It was nice to know I was not imagining things. I was diagnosed with symptoms and the trigger point test - 18 clusters of nerves on your neck, back and butt. If more then 12 are inflamed at the same time they say you have it.  I had a very bad car accident with horizontal and vertical whiplash and they said that trauma may have kick started it. 

I think if anyone has an over active immune system then it makes sense to have multiple issues. While the bur removal cures UC that doest stop your immune system from continuing to pump overtime. I have a lot of friends in my life who have auto-immunue issues and they all have multiple issues - not just one.

Which came first? who knows. I had jaw surgery when I was 16 and they left some hinges in on the bone that were to slowly dissolve as my jaw healed. Did that foreign body cause my immune system to start pumping? My BFF got breast implants and within a year had to have them removed and now has multiple immune system issues - was it the foreign body that started her off? who knows

 

 

I was diagnosed with with fibromyalgia and took a magnesium and malic supplement for years, it was even called Fibromalic. I ran out of it a while back and could tell it was helping as things got worse. If it is or isn't  autoimmune many of us with autoimmune diseases have it.  

I have chronic migraines that are treated by an anti-depressant. That allowed me to go off of an antidepressant and ended up with 2 health problems being treated with on script. Minor victory for me, 2 for 1 pill. I hate taking all o these it pills and and supplements.....

I also have perpherial neuropathy in my feet and am not a diabetic. My neurologist had me stop the magnesium and increased the Gabapentin I was taking. I gradually increased from 900 mg daily to 1800. This was to see if it helped my fibromyalgia. I have read about folks taking something like 3200 mg daily. It vr

The magnesium supplement helped my fibromyalgia but the increased Gabapentin is helping more.

 

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