Just diagnosed and uncertain about the future and what it may hold

[Elamjo59]

Hi

In so many ways I have been so fortunate up until aged 60 I have enjoyed a very active life and very fit

Sadly in the autumn I started to lose muscle strength in my shoulders but didn’t really think too much of it ... put it down to age !. This really accelerated in the Spring and when it was then discovered I had a CK reading of 11000+ I had an immediate referral to Rheumatology Within 1 month this had increased to over 17000 and I was told my muscles were in meltdown ... wow how can this fall off a cliff so quickly... for a historically healthy person with no apparent history how can this be so. Certainly bring you down to earth with a massive thump. Fortunately sufficiently out of COVID restrictions all tests fast tracked ... brill NHS performed... and I had my diagnosis of Poly Myositis... at least I had my diagnosis... but what future do I now have .. reading your website and various other information sites to say I was / am worried is an understatement.

I am now 6 weeks through 12 weeks infusion chemotherapy treatment with high dose steroids alongside ( but reducing)

Everyone keeps telling me I have to be patient it will take time ... but sadly I am not a patient person... and I am not really feeling any better ... I am very tired and my muscle strength is not improving.. on a plus it’s getting no worst so that’s good ... difficult to estimate but I would say I have lost 75% + of my strength in my shoulders , core back and limbs

I can understand why consultants won’t commit to what the recovery rate will likely be but I need something to aim for / focus on .... I have never been a depressed person but this is testing my resolve

Some optimism / hope on what might be possible in terms of recovery would be such a motivation

Thanks for listening and hope someone will share their experiences

[54Crafter]

Hi after a year long of miss diagnosed they found out I have Polymyositis Rheumatica. I’m 54 bern on steroids for a year now reducing. It took 3 months on steroids before I could walk & feel good again. Put on tons of weight but it was worth it. I have noticed now my steroids are being reduced I’m having more flare ups. Still have scans & xrays & blood tests every 2 weeks. Not sure what the future holds at the moment but have had 6 months of good health. Hang on in there it dies take time, but even for a short while feeling better is better than nothing so I have found.

[Catpuss66]

Pop over to the myositis community forum on Facebook , I guessed you were a guy, men are so competitive physically push themselves, not sure most women feel like that, just getting ready to go out is a big achievement! there are more if them ( men)over there that have gone through same sort thing They will be a big support lovely group.