Obv having a rubbish brain day, my post asking about other ladies developing fibromyalgia after cancer treatments apparently posted itself before I’d finished it!
When I saw a rheumatologist at my local hospital, he prodded me in the “fibromyalgia tender points” and had to practically scrape me off the ceiling because the pain was excruciating.
He turned out to be quite useless, not even bothering to contact my GP for over 6 months, by which time I’d been passed on to a less local hospital. Rheumatologist there confirmed what the first one said - except he said that it was “severe” fibro.
I would like to find out how common it is to develop fibromyalgia as a result of the cancer treatments.
I was struggling (sometimes coping well, sometimes badly, sometimes not at all) with unidentified “mysterious” “non-specific” health issues pre-breast cancer, and fibromyalgia was not somnething I knew any about - I thought it just meant stiff aching muscles. Turns out it accounts for pretty much ALL of my madly diverse “non-specific” symptoms, including chemical sensitivities, allergies, headaches, sinusitis, migraines, nausea, vomiting, extreme exhaustion, brain fog, muscle and joint pain, waking up feeling more tired than when I went to sleep, insomnia, etc etc etc. It’s a whole syndrome.
Has anyone else experienced the same thing? If you’re struggling to recover from chemo, it might be worth getting a referral to a rheumy, esp if you have any of the symptoms I’ve mentioned above.
Now the comment which the site said it had posted doesn’t seem to be here at all.
Original post was asking if anyone else had developed fibromyalgia after having breast cancer treatments.
I just got worse and worse after chemo, with exhaustion, muscle pain, migraines and vomiting, multiple chemical sensitivities and depression being amongst the worst symptoms.
Concerned onc, some 3 years after chemo and rads finished, finally referred me to the local rheumatologist because I kept complaining about my muscles hurting so much. I had reacted badly to chemo, needing massive amounts of steroids just to damp down the inflammation my system was experiencing, and went from a titchy size 8-10 to a steroid induced size 22 (ish). I’ve gone from 9st to anything from 13-15st, so I’ve gained 4-7 stones, which really isn’t funny!
I was wondering if anyone else coped badly with chemo et al, and if they’d had a fibro dx as well, or if anyone is still struggling years after chemo and hasn’t found the reason why yet.
Hi Angel,
I was diagnosed with FMS in 2003 and after the initial hideousness it kinda settled down to be at least bearable once we’d found the right meds.
Chemo definitely brought on some dreadful crashes.
Thanks for the response Sorry to hear that chemo brought on crashes.
Could I ask you what meds you found to be most helpful? I seem intolerant to any of the drugs on the fibro treatment list - Tramadol makes me projectile vomit, Gabapentin me, my GP and neurologist all decided against for migraine prophylaxia yonks ago - the list of side effects included all those that my body regularly produces in response to a massive amount of prescription drugs, namely, nausea, vomiting, headaches, migraine, depression, muscle pain, joint pain, fatigue, muscle weakness, etc etc etc
The first rheumy put me on Bupronephrine (? something like that) patches, which were great for the pain but made me (again) violently sick. Those patches were a form of morphine, which normally is about the only family of pain killers that I don’t have any problems with (aside from constipation, and I can cope with that!) I’ve had to go back to oramorph and dihydrocodeine.
I’m surprised they put you through chemo if they knew you had fibro - was it that your chemical sensitivities aren’t so reactive as thay can be in some fibro cases?
It strikes me as a bit dotty that when one of the main signs of fibro is chemical sensitivity, the first line of treatment from the experts seems to be drugs!
Hi Angel.
You said, “I’m surprised they put you through chemo if they knew you had fibro”
They gave my chemo to save my life!
But I had to have it stopped before the end as it was causing intolerable pain and the Oncy said that in some cases, this pain can be permanent. I tolerate Gabapentin - been on it for years now, topped up with codeine and Oramorph. It’s not perfect, but the best we could find.
I can’t use anti-inflammatories due to Crohn’s.
Hi Debs
I was diagnosed bc 4 years ago. struggelked with chronic fatigue chronic pain for 3 years post end of gruelling treatments. eh chemo, mastectomy, radiotherapy, herceptin and tamoxifen. I had to leave work on sick leave last November. Was convinced it must be cancer back but all scans coming up clear. Diagnosed with fibro March this year. fibro explained thr pain fatigue depression and crashes. explained why I wasn’t feeling better but worse after treatment. I think bc treatments bringing on fibro is very common and would love yo hear from others too. I feel i had fibro tendencies before diagnosis. it’s tough having survived cancer to be left so dehabilitated. I thought it was tamoxifen too. I’m trying different strategies but no major improvement. I feel cancer robbed me of a lot of things and I don’t want to let fibro stop me from living life. I am hoping over time to control fibro to live life after all I’ve been given a second chance. sending hugs to you and anyone suffering double whammy of bc and fibro. ?
I had my last chemo for bc a month ago, my legs have got worse as in paining and stiffness, didn’t no it wasn’t told you could get fibromyalgia from chemo, so it may make me feel a bit better, was getting really worried thinking it was something serious. Just taking gabapentin an paracetamols at the minute but not helping really
I had fibromyalgia for about 20 years. I fortunately had it diagnosed almost immediately by a wonderful male doctor. It was very debilitating at first. I had to rest after cleaning my bathtub, a very painful process, and I was only in my 50s. The pain did not go away. My doctor prescribed aerobic exercise and Flexeril. That drug made a big difference in the amount of sleep I got. I exercised for 20 minutes every day except Sunday. (That was all my pain tolerance would allow.) Whether those are what kept it a fairly mild case or not I have no idea. Recently I tried herbal medicine from perfect health herbal medicine home and am happy to say I got my life back totally. After about 6 weeks on it I have regained my energy level totally and am now lifting weights. I can sit still without aching all over after half an hour (which makes travel bearable) and can ride bike, my doctor recently confirmed that am fibromyalgia free. I have no side effects from the herbal medicine . I sincerely advice everyone to get their fibromyalgia cure from perfect health herbal medicine home.
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I had Breast Cancer 12 years ago now. Mastectomy and Chemo and then second Mastectomy the following year. For years now I have been getting aches and pains along with having several other surgeries which I am now certain due to the effects of Chemo and my body joints and soft tissues. Please don’t get me wrong, I am here and now a very proud Nannie to a beautiful little Grandaughter and another on the way BUT I am off work yet again! Recent fall resulted in injury to arm which has now been diagnosed as Tennis Elbow, very sore. Injection helping. HOWEVER, all this pain etc over the years has always left me wondering. Recent blood tests were a bit of an issue and there is a possibility of Polyfrimalgia or Fibromyalgia, Lupus has also been mentioned. Feeling really low in mood and worrying about what IF… and not what GP thinks. Trouble is that I am always and have always been a I AM FINE answer when asked person! I am not. I am really struggling. I also work as an Auxiliary Nurse in our Hospice. This being what I always wanted to do even after my Cancer journey. BUT, I am so so tired, brain just mush, obviously not “Chemo brain” . Feel I am letting down everyone. Have this worry that my job is going to come to an end somehow. Worried about that too.
I have been looking at all sites but I have taken so much solace in knowing I may not be on my own. My GP is great but I just wonder if I could have felt better years ago! Sorry for going on. Any thoughts re feeling rubbish or job advice would be really appreciated. Just wait now for repeat blood test results!!
Just read online a personal account from someone…not a cancer sufferer…who is having i jections from her doctor of high doses of vit b12.She had lymes disease but had been suffering for ages from foggy head aches and pains forgetfulness dizziness…i feel as if i could have written it! Apparently many many people are low in this vitamin.In hope and desperation I’ve ordered some patches of this…finding the fog and confusion really awful and seems to get worse.As I act on stage I find it so frustrating trying to retain lines abd figure out stage directions.In real life I often struggle to finish sentences and feel l have early dimentia…even wondered about a brain tumour! Just wondered if this may help anyone with fibromyalgia.
This is exactly the same reaction to the treatment for BC that I have experienced. Luckily my GPS is very switched on and is helping me through the process. I live in hope that I will recover. BC is hard enough but fibro on top feels like a double blow.
How are you now Laney? I have had fibromyalgia on and off for 25 years so it was almost inevitable it would return after surgery. What did you GP recommend?
Sorry to hear that chemo brought on crashes.