Just been given this diagnosis

[Wraysbury]

Hi I have had polymyalgia rheumatica since August 2018 and am on prednisolone 9.5 mgs atm, trying to taper. My Rheumatologist has decided I now also have Fibromyalgia. It’s very hard to know whether the pain I have, brain fog and extreme fatigue are caused by the steroids, PMR and/or fibromyalgia!! I guess I’d just like to hear from any others like me as I’d hoped eventually that when the PMR has gone I’d be ok and I think that fibromyalgia is lifelong, which is quite a blow.

[footgo]

Hello Wraysbury

I was on Prednisolone for over seven years and it has definitely left its mark on my body.

The long term use of this medication has too many very unpleasant side effects, if you have not read up on this drug my advice is to do so.

Please be very careful with all medications, so many are toxic to the human body.

[Hidden in reply to footgo]

Yes. I don't want to scare anyone but I ended up with liver disease caused by meds from my drs over the years, I wasn't on steroids. I now have compensated cirrhosis, my liver is working ok right now but I do worry. I do have many conditions causing 24/7pain and roughly an hour's sleep per night due to pain. Xxxx

[footgo in reply to Hidden]

A very good afternoon to you Oldham65

I agree with your story, which I was sorry to hear your many problems.

l was put on so many painkillers, Gabapentin, Oxycodone, Oxynorm (100mg a day) etc with Methotrexate and Prednisolone of course.

I ended up in the local ICU for a week, l was unconscious but was told that they stopped all my medications, cold turkey. Opioids was the reason l believe. My kidneys just could not process all of those toxic medications, my kidneys are now permanently damaged. This was 2015, l spent over five months in hospital. I had my right hip removed and they found an infection (Sepsis developed) so they could not replace the hip for six months. I had four operations on that hip in total. I also had my left knee replaced in that year as well. In all l have had both knees, both hips, both shoulders replaced and and my right hand operated on which was a complete mess, they had to take the plate out after nine months as three of the screws had broken. After all of the above I am still in pain every day and night.

My wife was at my bedside every day that l was in ICU, shaving & washing me, combing my hair cleaning my teeth. Talking to me non stop the nurses told me afterwards.

I had better stop now!

Take care of yourself, l can only wish you all the very best for your future, Tim.

[Hidden in reply to footgo]

Hi

I am so sorry that you have been through so much. Your wife is an absolute star. I'm lucky to have a great support network of family and friends and of course all of you on here.

We ended up going private (going totally against the grain) just to get a diagnosis of non alcoholic fatty liver disease, my consultant then said you can be my patient on NHS as you have spent enough money. In the November I had a liver biopsy , I was told I had progressed on to non alcoholic steatohepitis and then in January/February this year I had a fibroscan which diagnosed me with compensated cirrhosis which has caused raised bile acids

My other conditions are :-

Oa in knees

Sciatica

Spondylitis

Degeneration of the facet joint

IBS

Diverticulitis

Depression

Gastritis

Fibromyalgia

Costochondritis

Under active thyroid

Diabetes type 2

Severe itching and sweating

Take care and stay safe Lynne

[footgo in reply to Hidden]

Thank you Oldham65

You too certainly have been through the mill and continue to be there, l am so very sorry to read of all of your health issues. It cannot be easy for you or your family.

One never knows what tomorrow will bring, up to October 1999, l was a very fit and active person, for some unknown reason my life fell apart and I could not move many of my joints because of arthritis.

I wish you well and hope that you can soon find a way through this very painful period of your life!

Take care of yourself, best wishes, Tim.

[Hidden in reply to footgo]

Thank you so much for your kind words. I know I will never be pain free just got to keep smiling 😊 it's my way of coping. There is no point in me moping around as it won't change anything!! I think we are lucky to have a great support network, I don't know what I would do if I had to cope with this alone. My heart goes out to you all.

Take care and stay safe Lynne

[footgo in reply to Hidden]

Good morning Lynne

Thank you for your message.

Yes I agree that whatever is thrown at you, a positive mind and attitude will go a long way to help you accept those very unpleasant curved balls.

Take care and have good day, Tim.

[Hidden in reply to footgo]

Thank you. Hope you've had a good day. Lynne

[Lucky88]

Hi Wraysbury, a few years ago I was diagnosed with PMR after an extended time of doctor dither and hit & miss actions. I was put on a fast track one year Pred' course (starting at 20 / day if I remember correctly, maybe it was 24) and the relief for me was pretty immediate. Over the year, the Pred' worked magic and as I decreased the dose according to plan, there were luckily no instances where I had to return to a higher dose for a while.

I completed the course (along with high doses of Calcium Carbonate & D3 tabs) and since then am left just with excuciating shoulder and (right) knee pain from arthritis. My scheduled knee replacement was cancelled just one day before the hospital lock down and the next probable date is January.

For sure, I was lucky (hence the name). The Pred' is a dangerous steroid indeed, as are the opoid pain killers I was tried on. Now just the occasional Ibuprofen gets me a reasonable nights sleep. As far as I know, the Pred' should work on PMR. If it takes more than a year to have effect, it may well be that it is the dreaded Fibromyalgia . . . . for your sake I hope not. Keep active, loads of water, D3 and cod liver oil tabs, munch an Ibuprofen and sit in the sun. Good luck to you.