What is polymyositis?

[misty14]

[steadilymovingforward]

Autoimmune muscle inflammation especially hips n shoulders, thick fingers n difficulty getting out of a chair..steroids should help control xx

[misty14 in reply to steadilymovingforward]

Thank you for the info, very helpful, hope your well at the moment.xx

[steadilymovingforward]

Hope you're well too...have you just been diagnosed with polymyositis?xx

[misty14 in reply to steadilymovingforward]

I don't feel very well at the moment, have reduced the steroids to 6mg daily which is a huge achievement for me but I'm suffering.Polymyositis is something my Rheumy thinks is a possibility. Can you ache a lot?. Some of the symptoms you describe would fit. How are you?. Getting to grips with these illnesses is not easy is it?. Thanks for your info. Take Carex

[steadilymovingforward]

Sorry to hear you're suffering, does the doc say if it'll ease once you've taperd the steroids?...I think poly does make you ache. I'm ok thanks....having a 'full half-flare' in the sense that I'm getting ALL the symptoms at once but at half the intensity!...all good fun!

It can be a real bugger but as I haven't had a symptom free day in ages I'm kinda getting used to it...famous last words!...you wait I'll be climbing the walls tomorrow!

Hope things improve for you soon

xxxxxx

[misty14 in reply to steadilymovingforward]

Hi, Sorry to be a while replying, busy few days. I'm sorry that your suffering and hope your full half-flare improves soon. Are you reducing the steroids like me and have run into trouble?. I admire your sense of humour as Lupus is such a tough illness to have.Have you had it long?.

I'm feeling better as I've had a steroid injection for another bit of me and that's improved my overall achiness. No, I haven't been told about polymyositis could ease tapering the steroids. Not sure what you mean?. It's a condition they're thinking I could have but not sure yet. I know steroids can cause muscle weakness. Do your legs feel weak sometimes?. It's a constant, difficult juggle between risks and benefits of treatment.

Hope you feel better and thanks for your helpful info.xxxxx

[steadilymovingforward]

IHi Misty14,

I'm ok thanks...this week it has been mostly severe bowel and chest pain!...and the runs!...this is the second bout I've had in the last few months so i think this will be a new symptom I can add to my ongoing list of 'house' symptoms!!!!

I've never ended up taking the steroids...I was prescribed prednisolone for pianful flares but I've usually managed to just about get through...or more accurately - by the time I think about picking some up it's eased off!...brain fog!

Thanks, I try and be positive only because when I have got a bit down about it it's not changed anything for me so I feel like I'm wasting energy...what will be will be....but that doesn't mean I think it's wrong to get down, I think we should allow ourselves time to feel down...but I try and give myself a 'window' to express those emotions and then I try and get myself back on track if I can. I know that's easier said then done as some people suffer full blown depression with Lupus and CNS issues which must be awful.

I have had Lupus I guess since 2006 but have suffered bowel issues and severe ulcers and reactions to insects bites etc since birth and raynauds from about 19.

Glad the steroid injection has worked. WIth tapering I meant did the doc mention if your symptoms would improve once your body has got used to the reduced dose? Not completely informed on this subject as I'm only going on what I've read from others as I never actually taken it so not really sure lol!

I get problems with my legs a lot. When I took Baclofen before it eventually made my legs weak. Yep, I totally agree...the skill to Lupus is constantly assessing risk. I've told myself not to be too disappointed if things change, being prepared is realistic and I hope in that way life will be easier. I try not to think about what I can't do now, just what I need to change to help me do the things I do want...it's taken me a long time to get to this point though!

I really hope things improve for you soon,

Take care and keep in touch if you need to talk

All the best

xxxxx

[misty14 in reply to steadilymovingforward]

Hi Steadily

How are you?. Sorry for being a long time to reply again, not been well with chest pain.I've been diagnosed with pericarditis after a long, worrying time with the symptoms, I hate it as it's so painful. I've improved by doubling my steroid dose for 1 day then go back to original dose after which does work but because I'm on a lower steroid dose it's not lasting very long. Will be seeing my Rheumy soon for advice as other symptoms are returning now too. Do you see a Rheumy regularly?. Interesting what you said about the steroids, are you on any regular medication, you seem to be struggling on your own. My Rheumy has said you can feel better once body gets used to new dose. He's keeping an eye on things as I'm not a straightforward Lupus case- could be an overlap with other illnesses like polymyositis. He's keeping an open mind.

How are your bowels?. Improving I hope. Is it I.B.S?. That's more common with Lupus. I went thru similar problems and had a huge shock after tests to be diagnosed with Ulcerative Colitis, luckily it's mild but I hate it and said I had enough to cope with, with Lupus to have anything else. Luckily also the steroids treat both.

I couldn't agree more with how you say you cope with having this illness, but it isn't easy as we're human beings and some days can't always be brave. I'm like you also that I had Raynauds from a young age and gradually developed different symptoms from the age of 14. I'm 41 now and still on my feet and surviving,

My steroid injection is working really well, been able to drive again after a long absence. Great for the spirits.

I hope you feel better soon and keep in touch if you'd like to too. Thanks for your info, it's so helpful. Keep fighting.xxxxx

[steadilymovingforward]

Hi misty,

Good to hear from you

I'm ok thanks. Had really bad nerve pain down my arm (9.999 on the pain scale I reckon!)...one thing after another lately, like you said it's hard to stay positive sometimes but then I think....oh...there's nothing I can do about it anyway!...so plod on regardless...think i've forgotten what it's like to feel normal!

You poor thing, I had suspected pericarditis for months...terrible hacking cough, felt soooo ill, couldn't lie down for the chest pains, dizziness, pounding heart...then it eventually cleared up...the cough was so bad it made me choke...not nice!

Hopefully the steroids will help. I just take hydroxy at the mo, probably see my rheumatologist every 6 months to a year depending on my symptoms. Your rheumy sounds really supportive, so nice to hear.

I was diagnosed with ibs years back but I think it's probably a lupus thing...comes and goes...as long as it eventually goes, I'll put up with it 'til the next instalment!!

So agree with the driving thing..makes you feel strong again...I couldn't drive for years when my legs packed up. Felt like myself again when I got back behind the wheel!

Hope things keep going in the right direction for you, keep me posted with how you get on.

Really glad to here your doc is keeping an open mind

Take care misty and catch up soon!

All the best

SMf

Xxx