Fibromyalgia & now suspected Polymyalgia-worried about my mum

[Abkbjbjb]

Just looking for a bit of advice from anyone who knows anything about these conditions. My 70 year old Mum has suffered from aches & pains for years and was diagnosed with fibromyalgia about a year ago. She has had the usual flare ups etc but 2 /3 weeks ago she started feeling much worse, in unbearable pain, she got bloods done at the dr and he rang her the next day & asked her to go straight in as her inflammation levels in her blood were very high 122, when they should be around the 29/30 mark. She went straight back and was put on steroids, dr thinks she may have Polymyalgia aswell. He said if it was poly then the steroids should kick in quite quickly and she should feel much better soon.
Since taking the steroids she is feeling very nervy, palpitations, keeps saying that she has an awful weakness in her legs-she is comparing it to recovering from a bad bout of flu, very lacking in energy.
She just doesn't know whether all these side affects are the steroids or the Polymyalgia.
She got her bloods redone on Wednesday and got results back yesterday to say levels were down to 97-although an improvement they are still pretty raised.
She really needs some reassurance as she is worried sick about it all....and in turn we her family are all worried sick too 😢.
Has anyone suffered with both Fibromyalgia & Polymyalgia ? Will it get any better??
I can't help but think there may be something sinister underlying.
Mum herself says she just needs to know if this is going to be the way she is going to feel Forever or if there is light at the end of the tunnel? She is normally always so active and on the go so she is struggling with not being able to do things which in turn is giving her anxiety.
Any reassurance would be greatly appreciated 😊

Anyone 🤞

My dsis has had polymyalgia ( twice) and on both occasions she has felt pretty much instantly normal once she has started on the steroids so I don’t think what your mum is experiencing is normal . I’d go back to the GP .

Thanks for your reply Floralnomad 😊. Yes I have rad that several times that steroids should help straight away.
She is seeing dr on Monday so hopefully get some answers 🤞

My DM has polymyalgia, usually abbreviated to PMR and even worse had the linked condition of giant cell arteritis which is far worse.

Response to steroids is dramatic. After 2-3 years she is now off the steroids altogether and moving on with her life.

But yes she turned overnight from some one who was fit and active to a worn out, painful shell.

My mum has polymyalgia, her first attack she was in agony. Couldn't move without crying in pain, 48 hours after starting on steroids you would never have thought there was anything wrong with her. She can go ages without an attack then she gets one from nowhere, hers starts in her shoulders, neck & jaw, the first signs are often like she has toothache that then travels down her neck into her shoulder, then down her back to her hip & knee, her hands & allows get very stiff, swollen & sore as well. I suffer from Fibromyalgia, my symptoms are very often identical to my mum's but my blood tests don't show up any inflammation with raised ESR & CRP counts.

The flu feeling generally means a bad flare, I have autoimmune diseases and the bigger the flare the worse I feel.

The jitteryness and palpitations aren't uncommon on high doses of steroids, I feel like a wind up toy been set off but you do become more accustomed to them.

Has she been referred to a rheumatologist?

Thank you so much everyone for your replies, sorry to hear some of you are suffering similarly ☹️
My sister ended up bringing her to a&e earlier as she felt awful. They gave her chest X-ray and she has infection in her right lung....so they have given her 2 antibiotics to take. So glad she went as she has had symptoms for about 4 weeks now!!!
That hopefully explains the heart flutters, breathlessness & weakness.
Thanks for reassurance everyone 🤗