Fibro and cancer drugs that make it worse!

Anabrock

Active member
Joined
May 6, 2025
Messages
69
Reason
DX FIBRO
Diagnosis
02/2012
Country
UK
Hi Everyone, looking for ideas, empathy and shared experiences.

I was diagnosed with fibro a few years ago after a bout of severe viral arthritis which never seemed to go away. I also have hypermobility syndrome, which has added to my joint issues. 2 years ago I was also diagnosed with osteroarthritis in various joints, particularly shoulders and elbows, whilst going through treatment for breast cancer - at the time, I was told this OA diagnosis with a cheerful doctor who said "Good news! It's just OA, not bone cancer". Still not sure that counts as 'good news'.

My Fibro comes and goes but stress seems to make it worse. Dealing with a seriously ill child in the family, whilst recovering from cancer, it's come back with a vengeance. My worst symptoms are incredibly painful feet which makes it hard to walk. When I was first diagnosed I had to use a wheelchair, but that brings its own issues so I'm trying to stay mobile this time. I have generalised joint stiffness and pain, very stiff and painful hands. I also have IBS, migraines and I suffer chronic fatigue which I generally manage OK. I was warned that my anti-cancer drugs can cause fibro symptoms even in people who don't have fibro, so the exacerbation of my symptoms might be that too, who knows?

I have pretty much tried everything anyone's ever mentioned to me for my pain, without success. I spent a fortune on a specialist podiatrist who admitted my issues were hard to treat but gave it his all - without much success. I've seen various rheumatologists and an osteo surgeon. I was on gabapentin for 6 years which made me fat and then stopped working :( I can't tolerate Amitriptyline but tried SSRIs for a while. Had to stop taking them due to side effects (low platelets). I've never found things like paracetamol do anything at all for my pain, which is mostly bad when I weight-bear.

I've spent hours online trying to find out about my foot pain but nothing seems similar to my issues, which include Achilles tendonosis and a horrible burning sensation on my sole when I weight-bear or try to walk. The more I walk, the worse it gets until my feet become so swollen I have to elevate my feet for hours until I can hobble. I wish someone could explain to me why I have so much pain and issues with my feet - most doctors have been sympathetic but no one can really explain it, much less treat it. Other doctors just think I'm pill seeking or lying for attention - I've even had a doctor shout at me in front of other patients that I was 'doing this to myself', whatever that meant. I recently had a battery of tests and scans, but that was mostly to exclude RA and lupus and they were all negative. Which is good, but... I don't want some horrible disease which eats away at my joints but at least it would be clear. I think one of the reasons I coped so well with the cancer was that I got a clear diagnosis, treatment plan, prognosis, psychological support and absolutely no one gaslit me. Apologies for the moaning.
 
Hello @Anabrock and welcome to the forum. Don't worry about "moaning"...we all get to do that here, any time that we want to. There's even a section just for that.....but you don't have to only post your "moaning" in that section; we're not that picky!

May I ask why you are taking anti-cancer drugs if you do not have cancer? If you feel strongly that they are making your fibro symptoms worse, perhaps having a visit with your doctor and discussing the possibility of not taking those drugs might be in order. Of course, if your doctor feels you need them to keep the cancer from reoccurring, then you should continue them.

Everyone here can relate to the feelings you have of being gaslit, and the incredible frustration of being in pain with no relief. I hope you never went back to the doctor who shouted at you! That is completely unprofessional and inappropriate.

I hope that this forum provides you with at least a little comfort. Sometimes knowing that you are not alone, and being able to write about your experiences and be heard by people who truly understand can be very helpful. And maybe someone here can also help you with the foot pain, offering suggestions to you. We are here to help and support you, and are glad you found us.
 
Hi Sunkacola,
thanks for your reply. I'm on anti-cancer drugs because although I'm currently cancer free, I've had a kind of breast cancer which can reoccur and it's the sort that often doesn't show up on scans etc. so better safe than sorry. I recently had a CT scan that was clear though. I need to be on it another couple of years and then hopefully I won't need to any more. I've also got surgery coming up, for other complications of my cancer treatment, so I'm hoping that'll help my overall wellbeing. It's not directly related to my fibro, but I think the better I feel generally, the easier it is to cope with the fibro.

Thanks for your comments about that awful doctor - I did make a complaint and received an apology. But most of my doctors have been understanding. I just think they often don't know what to do. I hope joining this forum will help me feel a little more understood, which seems to be the thing that's missing at the moment. Plus, hoping someone has a helpful foot suggestion!
 
@Anabrock I just read both your posts, and my heart goes out to you. You're dealing with an awful lot, and with so much pain on top of it, it makes enduring hard work, doesn't it? Kudos to you for your positive attitude; you're trying. And all we can do is our best.

I'd love to be able to say I have suggestions for your foot pain, but guess what, I'm dealing with the same thing!!
For years I've been going to different podiatrists (I've lost count) and they have no clue. I suffered with Achilles tendinitis in both ankles for almost two years without relief. It was horrible. The thought of standing or walking was a nightmare.

"Wear this big bulky boot, take anti-inflammatories, how about physical therapy? Keep stretching your calf muscles." All to no avail. Did tons of my own research. The pain dragged on.

What did finally help - oh good, I do have a suggestion - were Kenalog (cortisone) injections done by my former dr, a general practitioner. They were painless and provided immediate relief!! I've had to go back a couple more times when the pain came back, and the shots helped again, no side effects, just relief.

I also have terrible heel pain no one can explain or help me with, really. The latest podiatrist basically said to use BioFreeze gel, ice it and wear a boot for the plantar fasciitis. I've gone through a number of orthotics, some were expensive and I can't even use them. I wear 1 pair of sneakers only (Easy Spirit) because they're the only shoe my feet can handle comfortably.

But unexplained foot pain seems to come up a lot with people with fibro. It's not understood. Wish we weren't feeling so stuck.
 
@Anabrock, finally I found someone who has gone through breast cancer treatment, too. After my second chemo treatment, I woke up in the middle of the night thinking my calves were on fire (2015) and was just told last month that I have peripheral neuropathy. Wonderful. This past year the pain has not only moved down to my feet, but also into my thighs. So, I completely understand your pain and frustration.

I am thankful to have survived breast cancer, but it sure came with a price. I was on Tamoxifen for 5 years and that caused a lot of joint pain but I was able to push through it and the more I moved, the better I felt. 2019 I was diagnosed with FM and I definitely can’t push through this fm pain.

I sure hope you can find some relief and realize we may have to adjust to this new reality.
 
@Anabrock and @Radmun, none of us can ever fully understand what others go through,or their feelings and reactions to what health\life throws at us, as we react so individually.
But a forum such as this gives a chance for knowledge and support whether that be from living with fibromyalgia or as in both yourselves with breast cancer. Radmun I can almost hear the relief in your above post, to have that additional feeling of understanding.
I wish you both well
 
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