Hi
Just wanted to ask if anyone has been diagnosed with FIBROMYALGIA after having cancer, its now bin 2 and a half years since my hysterectomy and i am still in a lot of pain bin backwards and forwards to the doctors (begining to think it was all in my head) now saw a locom doctor and this is wot he thinks i have.
Best wishes Julie
FormerMember
I have a diagnosis of fibromyalgia following cervical cancer and a total hysterectomy in 1993. Not sure if the 2 are connected but I have never regained the energy I had before surgery. The only advice I can give is to ask for a referral to a rheumatologist, they seem to be the guys most clued up on fibromyalgia management and diagnosis. Management can take some time im afraid - rest (changed my job), diet, and managing stress levels have certainly got me in to a better state and I have heard that cognitive behavioural therapy and medications such as amitriptylin can be very helpful though have never tried them. If you go to www.fibromyalgia-associationuk.org they will be able to give you much more information and local support.
Thanks for the info i saw a rheumatoligist last year and she gave me leaflets for fibromylgia and arthritis i have been like this since my hysterectomy in 2006 for leiomyosarcoma i just thought it was all part of the recovery but nearly 3 years down the line i am still the same trips back to the GP many times stupid things like my feet very painful knees, legs, hips shoulders, hands, fingers i no it sounds daft but they just keep giving me pain killers eg morphine patches.
I had to keep having time off work as i could not stand for very long and my job is walking all night (i work nights) i have been off this time since may, my employer has now given me 1 year off to see if things improve. I went to see the disability officer at my local job centre and they have told me to apply for DLA do you get DLA?.
I am taking amitriptylin i take 5 at night and co-codamol 30/500 do you take any meds?.
I was prescribed amitriptylin and naproxen when I was first diagnosed but had an adverse reaction to both and felt worse so have steered clear ever since. Like you I worked nights and was told by my rheumatologist that this was certainly making things worse so I stopped 2 years ago and have noticed a huge improvement. I now find that my symptoms; pain, stiffness, headaches and tendonitis, are liveable with but definitely get worse when I am stressed or have a cold. I take Echinacea to boost my immune system and magnesium to manage muscle stiffness, use homeopathy (prescribed) when I'm having an attack and find acupuncture and cranial osteopathy are very good to manage pain and as a general pick-me-up. I havent claimed DLA, no one ever mentioned it at the time, but know other people with fibromyalgia that do.
I really hope things start to improve for you now that you are taking a break, working nights should carry a health warning. This is such a frustrating and much-misunderstood condition but I have found that because there has been a lot of American study into fibromyalgia things are definitely improving for patients in the UK and GPs are starting to take us seriously which will hopefully mean better treatments and better support. Please keep in touch and let me know how you are doing.
What a coincidence that I found this topic on fibromyalgia, as I was only researching this on the internet five days ago and have since mentioned it to my GP.
Like you, since my surgery two years ago, although making a good recovery from that, I have always felt extremely tired with body aches and pains, often with a tingling sensation. When I read about fibromyalgia all the symptoms seemed to match my own.
Hi Julie, the way you described your symptoms match mine completely and I have to agree that it’s very debilitating and exhausting isn’t it?
Hi Zoe, we’ve chatted briefly before if you remember. How is your son getting along? Also, do you still suffer from fibromyalgia? I haven’t returned to work since surgery as I still have dumping syndrome and cancer related fatigue, which increasingly sounds more like fibromyalgia. At least my GP is checking it out, but I must say that I find it quite strange that people seem to suffer from this illness after having major surgery.
Yes I do remember you and thank you, the info you gave me was really useful. We've had something to smile about today the consultant confirmed no mets so Joe has his 1st chemo appointment tomorrow, hes doing well and really positive.
Back to fibromyalgia - I still have it, not sure if it ever goes but symptoms certainly seem to get better at times and I feel almost 'normal' again. For years I put it all down to stress, surgery and hormones and still believe that this was the trigger. One thing I am certain of is that, for me, any situation that over stimulates my adrenalin production for a prolongued period will lead to an 'attack'. This might explain the link between fibromyalgia and surgery/illness but not why some people develop it and others dont. If I come across any information that might help I will email it to you if you would like. Take care Kitty, please let me know how you get on.
