Any fybromialgia sufferers?

I've been diagnosed with (suspected) fybromialgia and have a 3 month wait to see a rheumatologist. Because of the PBC the GP won't prescribe me anything stronger than Ibuprofen and Paracetamol (4 of each a day - doesn't do alot!) for the pain, and has put me on 10mg of amitriptyline. While I'm waiting to see the specialist, does anyone have any tips or advice on managing the pain and tiredness? Dietary things to include or avoid etc... I should mention I'm allergic to codeine so can't use any otc pain relief.

Many thanks

Sian

7 Replies

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  • I have pain in my hip that troubles me a lot at night time. It can't put my foot on the floor at times . I will go to rheumatologist if it gets worse. I don't take any pain killers at the moment. Although, there are some pain killers that can be taken with PBC. From what I beleive Ibuprofen and paracetamol are not good for the liver, there are some pain killers that are ok to take with PBC, don't know the name. Regards to diet I stopped all saturated fats such as butter margarine, I don't eat any ready made food, biscuits, cakes, sauces, soups etc. I make everything from scratch so I know exactly what goes into my body. Eating healthily is the key, reduce fats, and sugars BUT I also believe a little bit of what you fancy once in a while won't harm you. I also stopped alcohol. I also walk everyday, I think this helps to keep everything moving, even if it makes me ache a bit afterwards. With fybromialgia is it the muscles that hurt or joints? Since I started on Urso 13th July this year, my tiredness has improved a great deal, I only hope it carries on like this. Do you take Calcium and vitamin D? I currently live in Spain and this disease is not very common here, interesting to see what other people take.

  • Hi,

    I was diagnosed a couple of years ago with fibro. It is hard to manage the pain. I was told I could take 4 paracetamol a day but no ibrufen as that was bad for the liver. I did try co codamol but it gave me headaches. Pain clinic was a total waste of time as the dr I saw didnt believe in fibro. So no use. I have found a gel that I use when its really bad which is musseltone gel and the specialists and gp have said this is ok. I also hae been prescribed acupan to take if really bad.

  • Meant to say I also take the amis and am on 80mg at night.

  • reni73

    Hello from Australia, I like many others have multi auto-immune conditions as well as the PBC. A side effect I have from Poyl Arteritis NOdas is fibromyalgia and the best thing that I have found to assit with the pain is Magnesium I take 1 twice a day. Do you own research, but you will find it an amazing help

    Toohey

  • I was diagnosed with Fribromyalgia in 1999 by a Rheumatologist. At the time, I hadn't heard about it until my pain clinic Dr. thought I had it. All I knew is that I hurt all over, and I couldn't sleep. This is the cause of my taking 3 medications.

    Magnolia

  • Not exactly on point, but paracetamol is the only pain relief with PBC, I have been advised to take if needed by both my GP and everyone I have seen on my gastro team. Interesting when I asked my dr in the last clinic I attended about a cough bottle she said any over the counter one I could take.

  • How do you know you have this what tests are there I ache all over wakes me up at night 

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