I developed fibromyalsia after UC. I think the stress from the UC. prednisone etc. caused it.

My Internist thinks the UC was causing some of the fibro issues. They are both autoimmune diseases.

I'm 2 1/2 months post takedown and 4 1/2 since the first surgery. My fibro symptoms seemed better after the surgeries but they are back. I think it was better as I was on pain meds.

If any of you have fibro can you please tell me if it got better after your J-Pouch.

I've been to so many specialists and tried so many medications, alternative medicines, diets, etc. for both problems. I've explored everything for so many years.

Am I ever going to be able to work again? Should I file for disability? It's been almost a year since I last worked and for the last 10 years I could only work very part-time because of my health. My UC flared in March until my November surgery. After all the years and medications my colon finally had to go.

I did a search,I think for the whole site, and didn't find any other references to fibro other than mine. I don't think it's been discussed on this site before. If it has and anyone knows where please let me know.

So sorry you have to deal with that too on top of everything else.

My mother-in-law has Poly fibromyalsia (she has no other auto-immune disorders) She did have breast cancer though and almost immediately after her treatment was done the fibromyalsia came on. I don't think it was a coincidence. Perhaps the stress the body goes thru when you are sick brings these things on??

Her dr. treated her with prednisone for quite sometime. I think she still may be on a low dose right now. That has helped her a lot.

Check this out too:
http://www.fmnetnews.com/basics-treatment.php

This message has been edited. Last edited by: mgmt10,

Major emotional &/or physical stress brings it on and breast cancer certainly is major stress. Like UC, large prednisone doseages coupled with a stressful job that included working a lot of overtime was for me.

I hope she beat the cancer and I know another lady with Poly Fibro that has been treated with low doses of prednisone too. I don't know the difference between fibro and poly fibro but we did have different symptoms.

Thanks for the link.

Your welcome. Yes, she did beat the cancer

I'm not sure the differences between the two either. Seems like it's a very hard thing to diagnose too. Hope you feel better and get some relief from it soon.

I'm glad she is ok!
I've tried or am doing a lot of the things the web site you directed me to talks about. (I've tried all 3 of the fibro medications etc.)

Tell your mom that massage really helps and I get one every other week. Maybe that will help.

Thanks again!

Hi Toughenough,

I just posted this and I am in the same boat. I have my pouch over 20 years and the last ten have been tough. Surgery done in 1985 when I was 16. I am now 41.

The difference for me is that prednisone doesn't help. And from what my rhematologists have told me, if it DOES help, then you don't have fibromyalgia but arthritis related to U.C.

Anyway, I haven't found anything yet that works. I am beyond frustrated and don't know what to try either... Will keep you posted if I learn of anything new.

Hi mikenj,
Thank you for posting. I've always felt it was related to my UC and the prednisone use - the stress on my body. I'm pretty sure it's fibromyalsia, as it's not in the joints but in the muscles plus the fatigue etc. The doctors have diagnosed it as fibro. My Internist thought that my UC was causing a lot of my other auto-immune problems. I was hoping after the surgeries that my fibro would get better.

I've tried all 3 fibro drugs, cymbalta, lirica, savilla and they didn't help. Actually the Cymbalta was bad news mentally for me. Weird thoughts!

Sleep helps which is hard as that is one of the problems when you have it. So sleeping pills might help, except I'm afraid to take them since I got my J-pouch.

I get a massage every other week and go to the chiropractor. I think they help more than anything. Plus I use a heating pad too much and think soaking in a hot bath helps too.

Exercise is susposed to help but it affects my feet so bad I have a hard time walking too much and exercising. (Feet are not one of the usual points but they have not found any other reason for my foot pain. I've been to foot docs, tested for nerve damage etc.) It's affected my wrists too. They, wrists or feet, get inflamed and red. I have the other usual back and other pains as well.

I've looked on other web sites and found others with UC and fibro and my currently worst complaint of foot pain.

I was hoping that since I'm now UC "cured" with the colon removal and J-pouch that it would go away. I guess that's not going to happen as you've been cured for 20 years! The pain went away after my surgeries but I've figured out that was because of the pain meds I was on, which I don't want to take full time.

Do you have the fatigue? I'm assuming you do.

I've taken one or another kind of anti-depressant almost all of the time since I was diagnosed in 1998.

No one, doctors, suggested prednisone for me for the fibro. (I've only taken it for UC and refused to take it ever again for anything.)

Is there anything you are doing besides what I am that helps?

Thank you so much for replying back. We should stay in touch about this and see if we can find better answers to share.

Dear Toughenough,

I just joined this community after my boyfriend found it for me. We came across your posting and it compelled me to join. I, like you, was diagnosed with fibromyalgia about a year after being diagnsed with UC. To answer a few of your questions: Some of my symptoms got better, but I thinl it was because my whole body wasn't miserable. My doctor wisely told me a long time ago that the surgery would not "cure" me of UC but it would take out the part of my body that if affects. Once your are diagnosed with the auto immune disease of UC you will always have it. You should definitley file for Disability!! I did when I had my inital surgeries. Like you I have tried Cymbalta and Lyrica and also Clebrex for the pain but didn't find relief from them. Currently I am not on any drug primarily for my Fibro. I would HIGHLY suggest a sleeping pill as sleep made a HUGE difference in my life. I have currently been taking 10mg Ambien for over 10 years, initialy put on it for the fibro help and then it flowed into putting my pouch to sleep. To feel functional we all need at least 4 hours of REM sleep a night and you can't get that if your pouch is waking you up or if pain is waking you up. Try it, if you don't like it you can stop it.

I hope some of this helps, feel free to ask me anything else, i'm an open book!!

1TuffChik,
Thank you so much for your reply and I love your screen name!

You've really helped. I am going to file for disability for sure now. I've been paying for LTD insurance for over 20 years and will pursue Social Security disability as well.

Also, I quit taking my sleeping pill after my first surgery as I was afraid I wouldn't wake up to empty the bag on time and then after the 2nd because I'm afraid I won't wake up in time to go to the bathroom. Plus I was on pain medications and didn't want to mix them. I am so glad, after getting up 4 times last night, that you told me it helps the J-pouch "sleep"!

I have been taking Xanex instead of a sleeping pill but it's not the same. I definately know that sleep makes the fibro better the next day.

My prior GP told me I wasn't totally disabled, even though I could only manage to work part time during tax seasons, and that always threw me into a flare.

I'm going to discuss this with the internist that replaced that GP. She really gets the connection between all of this better. I was hoping the surgery would get my life back, including working but as time goes on I see it's not.

I still have to take some pain medication but it's primarily when I eat something that I didn't know would affect me and the pouch. It makes me "go" more and brings on pain.

Eating is a big change too as I still can't eat some of the foods I did before, but can't eat a lot that I could - mainly fiber. I'm getting that figured out.

Do you take any probiotics and/or drink any electrolyte replenisher drinks? If so could you tell me what you take.

This is a great site. I wish I'd found it before I had the surgeries but at least I found it! My surgeon kept telling me everything was "normal" to all of my questions and after my folow-up visits post surgery he said he'd see me in a year. So while I think he did a miracle surgery, he is basically clueless for the aftermath.

Your wise doctor's words about the surgery just clearing up the colon part of UC makes sense to me. The only fibro relief I felt at all was when I was on the strong addicting pain medications, that I don't take anymore. The one I take is better than tylenol or ibruprofin, but not as strong as those where.

It is also good to know that the so called fibro drugs didn't help you either.

Thank you so much for writing and I hope to keep in touch with you and will look for your posts elsewhere on the site as well.

You might be able to help other people or get some other perspectives, especially in the Women's health section. There is a great nurse, Jan Dollar, that posts a lot and has great information.

Thanks again!

Toughenough,

I'm so glad that I could help!! M fiance came up with my screen name. I wish I had found this site before my surgery, it would have been so helpful.

I can't believe that you doctor said you weren't completely disabled! That just blows my mind. Just so you know i'm on pain meds now and still take my ambien. I think its ok, I have been given ambien in the hospital when I have been on even heavier IV pain meds.

I'm glad you have found a new Dr. It sounds like the one before didn't get it. As far as getting your life back, I realized that it more like getting a new kind of life. You won't ever have the life before you were diagnosed but you can have a new kind of normal life with your pouch.

As far as food goes for me, I pretty much eat whatever I want. I completely stay away from ANYTHING spicy. I don't have pain when I eat, but it could be your pouch just learning to work. My Dr. told me in the begining that just the thought of food gets your pouch working and moving. There is a sensor in your brain that communicates with your pouch. I don't know if you have ever sat down in a resturaunt and looked at the menu to decide what to order and then you have to use the restroom right after you place your order? That is what i'm talking about. As hard as it is to do and easy to say, try and be patient.

What pain med are you on now? Be very careful taking IB profen. It and motrin has chemicals that can cause you intestines to bleed and really upset your tummy. Anything with asprin in it can do this. It makes finding an effective pain med difficult.

I drink Gatorade G2 like it is going out of style. I can't get enough of it. My Dr. told me it is because the colon used to absorb the liquid from your waste and and process the sodium and use it to regulate your blood pressure. I have a craving for salt all the time and migraines that come on sometimes with stress. He thinks some of these can be from a spike in blood pressure because my sodium isn't regulated. It's just so crazy how EVERYTHING is related and linked together!

Thanks for the support in the Women's health section too. I'm a little frustrated, I have had 21 views and not a single response! WE really need some advice quickly from people who have been through it. I hope someone replies soon! I've seen Jan Dollar on here and she seems so knowledgeable, and she is from the town I grew up in!

Anyways, I'm glad I could help and would be happy to keep in touch!1

1TuffChik

Hi 1TuffChik!

I take Tramadol, tylenol products do nothing for me unless they have codeine in them. I tried ibruprofin and it didn't help enough, plus I know I can't be on NSADs too much, or at all. My surgeon was stingy with the pain meds. He's a good surgeon but not so good with the follow-up.


What pain medication do you take? I'm hoping to find something better so I can to talk to my internist about it.

I was drinking Gatorade, with the sugar. Then read on this site that sugar was bad for us. I ordered some Ultima on line, recommended on this site. I liked on of the flavors but the lemon one tasted just like the gallon of prep crap we use to have to drink for colonoscopy preps! I emailed the company a nice complaint. The customer service rep told me off. I looked it up further on line and found out that rep was the inventor of the product. I then emailed that I was sorry if I offended him by describing his product taste the way I did and hoped that he never was sick like me and then got to be treated the way I was by a jerk like him. Needless to say I won't buy that again. Sorry for rambling!

Do you drink G2 with or without sugar?

You don't use probiotics? Some people on here take some very expensive ones. I've been eating activia yougert and taking some probiotic pills. I have no idea if it's helping me or not.

I went in and read your post about pregnancy, is that the one you are talking about? Hopefully someone will respond soon. I had my kids before I was diagnosed.

If you are on Facebook there is a good page to post to. I've read posts about pregnancy on there too. I think it's UVblog or something like that. Let me know if you want it and I'll send you the link. It's a site put up by a guy named Dennis and gal named Nadia. Dennis has a lot of good J-pouch you tube posts, that's what lead me to the FB Page. The site is about UC, Crohns, J-pouchs, ostomys's etc.

You will probably get some responses to your questions, give it some more time. Look how long it took me to get your posts! You can also post it in a different section, like need advice now! or general discussion. I hope you get some good answers.

I took your suggestion and took a sleeping pill last night and didn't get up once! We are watching our grandson's this week and I slept great until the 4 yr old woke me up at 5:40 a.m. :-)

I am definately filing for disability when we get back home. (We are watching the boys while my daughter and her husband are looking for a new home - job transfer.) It's great taking care of them, the baby is 9 mos old, but I'm tired! Good thing my husband is good with them too!

https://www.facebook.com/unitedcolonvlog

FYI everyone on FB, this is a good site too, not as good as this one but it is good in a different way.

Are massages helpful?

Massages are very helpful. I get one bi-weekly and wish I could get them more.

Yes off course they are helpful for every age of people unless and until they are done with lot of care and safety.