Hi, im new here

[Marchhare7]

Hi, im really wondering if i have developed fibromyalgia. I have recently recovered from treatment for blood cancer by having a stem cell transplant (14 months ago) im struggling to return to work full time, im suffering everyday with pain ,fatigue, weakness, dizziness, brain fog, sometimes my skin hurts? It hurts to shower, im so frustrated, im also in chemical menopause from all the chemo- it could be that? To be honest i dont know, im just reaching out as when i talk to medical people i get blank looks. Im exhausted from it all, sorry this sounds like a winge, im very grateful my cancer is in remission, but trying to function at my previous levels is never going to happen thank you if you're still reading x

[Gigiruth]

Hi Marchhare7Sorry to hear you are having a tough time. You do have symptoms that might be FM but hard maybe for your medical team to know as you have had such strong chemicals and Menopause.

I hope you have reasonable adjustments in place at work. You could ask to see a rheumatology consultant.

Take the best care of yourself and your body. I hope you have the opportunity to reassess your daily needs and routine to best help with recovery.

food.work.sleep .Time out.time with nature. I hope you get answers as your recovery progresses.

Take care of you

Gigi

[Marchhare7 in reply to Gigiruth]

Thank you for your message , sorry this is a late response, over the past few weeks i have has both my osteopath and physiotherapist suggest i may have fibromyalgia and to ask for a referral to a rheumatologist, i will do this at my next oncology review. Im learning to manage my health better and trying hard to not feel guilty about my boundaries, aspects of my work are suportive and others are really challenging but im staying as strong as i can in advocating for myself thank you again for replying

[Alb2]

I don’t know if this will help but I wonder if your symptoms may be the after effect of all your treatment? I was a haematology nurse who specialised in stem cell transplant and often post transplant, patients would report similar symptoms for quite a time. You have been through so much in terms of treatment that it is bound to have taken a huge toll and it wouldn’t surprise me if you have developed fibromyalgia as a consequence. Does your hospital provide post treatment support? You should be able to access advice regarding pain and fatigue management- we do this at my Trust for haematology patients. You should also have access to a patient support group where you can link with other patients going through similar things.

I’m wondering if you had donor cells or your own transplanted? Either way, don’t underestimate what you’ve been through and it will take time. All the symptoms you describe could be attributed to the effects of the cytotoxic therapies as well as Fibromyalgia. Is it worth speaking with your consultant?

I do hope things get better for you soon😊

[Marchhare7 in reply to Alb2]

Thanks for your message, i appreciate the insight. Unfortunately there are no patient support groups through my clinical team, the only contact for support info was from macmillan. My Drs did say the chemo/radiotherapy regime was very intensive and this would have long after effects and the chemical menopause will exacerbate everything, but some of my symptoms are net with blank faces so i feeling like theres more going on. Ive also recently read about some sct chemo regimes causing nerve damage resulting in wider neuropathy, i need to learn more about that. My sct was unrelated donor, 10/10 match with a different blood group (31 yr old german male) i now have their blood group

[Alb2 in reply to Marchhare7]

That was a good match! It’s amazing that quite a few donors seem to be German for some reason, perhaps because they really put forward to be donors which I don’t think we do so much here in the UK. I’m thinking if you had donor cells, the effects of the cytotoxic therapies would affect you long afterwards. With my patients, fatigue and neuropathy were the main long lasting symptoms. I remember the trust I worked for started an exercise programme to help with this with some measurable success. You’ve been through so much, don’t underestimate the impact on your body and emotions but it is wonderful that the SCT was successful and I do hope things improve. One other thing, it is common to have skin irritation so hopefully they’ve prescribed an emollient to help with this.

[Marchhare7 in reply to Alb2]

Yes skin sensitivity is difficult, i have cream cleansers for shower and moisturiser, have to stay away from anything scented, i cant even wear perfume now even if i put it on my clothes and not my skin i still come out in rash. My work (nhs) has great wellbeing services which im utilising but i just cant tolerate exercise which is why im doing hydrotherapy to begin with. Thank you for validating what a sct does to your body, im trying to get certain people to understand this but as i look 'fine' this is a challenge im finding difficult. Thank you for doing your job too, my nurses where wonderful and its not an easy role by any imagination and i am very grateful for people like you.

[Keswick73]

hi Marchare7, congratulations on your remission, that’s fab news 🙏😊

Obviously I’m no doctor but does sound like Fibromyalgia symptoms; and a lot of clinicians believe Fibromyalgia’s brought on by trauma.

I was diagnosed by a Rheumatologist after being referred by my GP. I would definitely book an appointment with your GP and tell them your symptoms and concerns.

Feel free to ask questions if we can be of any help and I hope you get some clarification soon ✨

[Marchhare7 in reply to Keswick73]

Hi, thanks for your message, in past few weeks my osteopath and physiotherapist have suggested i may have fibromyalgia and to ask for rheumatology referral. Its really interesting. I also have been diagnosed with osteoporosis and referred to msk. Thanks for reaching out im sure ill be back with more questions, thanks again

[Penthouse13]

Hi Marchhare. I had chemotherapy and radiation treatment for breast cancer in 2014.

I started feeling pain all over my body , as though it had been battered. It took 2 years for my doctor to diagnose fibromyalgia. It has not got any better over the years and is accompanied with fatigue and digestive problems. I am sure the treatment for cancer was the cause but doctors don’t acknowledge this. None of the medications I was prescribed gave me any relief, so now I take only 6 paracetamol per day. Like you I’m grateful to be free of cancer but I’m left with a life of chronic pain which has affected my life drastically.

I do wish you well and hope you find some relief from your pain in the future.

[Marchhare7 in reply to Penthouse13]

Hi , thanks for your message. So pleased you're in remission too, this really is a crappy battle for us. Im not sure yet what my clinical team view is, will find out at my next appt. Im now cant eat dairy which im struggling with but im getting better. I have lots of random pains cant explain most of them, i never now what each day will bring till i wake up, so dont like to plan much and allow myself rest time. I take me hours to do tasks that used to take minutes. But im learning my limits and how not to feel guilty. I wish you well too.