Muscle weakness/wasting

suzygirl

Hello all, hope the rain isn't getting you all down. I wish the heat would subside!!!

Anyway, I just wondered how many of you had muscle weakness and or wasting as part of your illness. I appear to have this and am trying to work out what is causing it. In my case it could have a few causes, the inflammatory arthritis crossing over with inflammatory muscle disease. Or it could be due to nerve damage due to severe degenerative disk disease and spondylosis.

I am afraid I have left it all a little late to sort out. :roll: Hmm, my dislike of doctors visits and tests rearing its head again. Anyway, I have done a gpood job of ignoring it till now. However with the physio appts being so good, I am wondering whether the rash that appears more and more over my body is connected. Trouble is it is a fleeting rash and I can't seem to capture it well on my camera. It is purple and not nice. Don't think I can face yet another fob off visit from the docs. I seem to baffle them with my bizarre symptoms, and I end up feeling like a hypochondriac.

So, waffling on, sorry. Wondering whether any of you peeps have experiences of any of this and if you have identified causes??? Such a frustating and time consuming business this arfur :shock: Thanks if you made it this far!!!!

tillytop

Hello Suzy,

I so know what you mean about how you feel when you go to the doc. Really shouldn't be like that should it?

One thing I wonder about the muscle wasting is whether it is caused by/made worse by steroids. I think I am right in saying that muscle wasting can be a side effect of longer term use of steroids. Apart from that, as you say, it could be secondary to the other things.

Re the rash, capturing it on camera if you can is a good idea - I have done this in the past cos at least the docs can't fob you off so easily then (sorry, having a cynical moment :roll: ) but if you can't capture it, I think you may well have to bite the bullet and speak to the doc/consultant. It may help to give them more of an idea of what is going on. Does your hospital have a rheumatology helpline number you could call to discuss things with them?

Thinking of you lots.

Love Tillyxxx

dreamdaisy

I dunno about you but I don't move fast enough or effectively enough to maintain good muscle tone. The meds don't help either, steroids especially. I used to have a reasonable amount of strength before this all got considerably worse, now I don't. I have found that doing a small amount of gentle exercise has helped things to improve, but I doubt I will ever get back to anything like I used to be. I am just trying to preserve what little is left! DD

barbara12

Hi suzy
You are not on your own when it comes to going to the docters, has for the muscle wasting I cant help sorry, but I do wish you well with everything.
Just a point like you I get a raised rash, and twice I have tried to get a picture of it, but it dosnt do it justice, so if you have a camera maybe you are a better photographer then me...

dotty123

Sorry I haven't a clue as I am new to this, I don't take meds as I don't have RA I am more OA ... But I know what you mean, I have noticed my legs are weak and shakey.. yet I don't take meds so now I am not sure. I just put it down to getting older and not being as able as I used to be... or just unfit lol
I too feel uncomfortable talking to my docs and daren't mention more than one thing.

xx

lavenderlady

unfortunatly I have SMA spinal muscular atrophy which leaves me with weak shaky muscles my right arm is the worse i cannot life my arm or use it to tuck myself in wash my hair i actually have to life my arm up with my other arm, so its quite possible that is not linked to arthritis I've got severe degenerative OA and sero neg, obvioulsy medication can cause side effects but not in your case, keep an open mind about what it could be caused by at one point they thought it was MS, :eek: michelle

madwestie

Suzygirl I have weakness of my arms and hands which they think is caused by the ulna nerve and the OA in my neck.
I hope the doctors can sort this out for you as it is really a pain,
I wondered if the purple rash is anything to do with your Blood?

Tracey

liesa

mine seem very weak, i just about manage to lift my gradkids up gently but cant hold them for long, cant walk far as well as the knee pain its the muscles that have wasted...

suzygirl

Hi all, thanks for your replies. Mine was thought to be MS at one point and they keep coming back to it, but so far thank goodness, it isn't that.

My weakness predates the steroids and the steroids help with it, so some sort of inflammatory process must be part of it. However the steroids seem to have a positive impact on my neck which is OA, so that is confusing.

My camera is only the camera on my phone and it is not clear for rashes. The rheumy nurse has referred me back to the rheumy due to the appearance of the rashes on my knees, which I thought was due to my blood/APS. However the rash appears else where, my chest and now my eyelids which bothers me somewhat. I have trouble swallowing which I put down to sjorgens and trouble breathing when I am tired, which I attribute to asthma.

I should mention that the weakness is bilateral and worsens with flares/overuse. However the muscle wasting is unilateral, which confuses me and makes me wonder if more than one thing is going on.

I am a bit of a black and white person and like concrete answers. grey areas and confusion irritate me, so I am far from an ideal aptient in all this.

Guess, I need to be more patient. Oh well!!!

skezier

Hi Suzy,

I am sorry you're getting this one as well.... I have lost 2" off one leg and its all muscle waisting and its cus I can't use it right as its the one the lumber effected really badly before the decompression.

I am loosing a lot of muscle over time and I don't know weather its cus I am no longer using them as much or if they are being eaten.

Like you they have said ms on and off for the last 15 years..... Mine can't be as I had a ct scan 10 year ago and only had one lesion and another one done 5 years later had only the same damage and thats to do with a very bad head injury I had in my teens so now...

they blame that.... I guess it might have some credence though?

I think (rightly or wrongly) that fighting back as and when I can to keep the muscles strong is they thing to do.... They just tell me that the oa and the pa are stopping them from working right and well I think once they can label it they stop trying .... for me they have and the what ever is going on with my brain became a donkey to pin the tail on as often as they like.

He has so many and a companion now as well.... each have about 60 tails.

Its wrong though flower and in your case the inflammatory thing in the bones and muscle are possibly to blame with the muscle waiting? I wish I could tell you a cure but hang in there and leaving you a ((((( ))))) and a sachet for Izzy. love Cris xx

Starburst

Hi Suzy,

This sounds very frustrating for you. I find my GP rarely listens, so I tend to avoid too. It seems a natural response, right? I'm glad you're going to the rheumy though. I hope your appt comes through soon and that you can get some answers.

I don't know if this will help you at all but my rheumy said lack of movement can cause your muscles to waste. I blew it off. But after 2 weeks in a plaster cast, that leg is considerably smaller and flabbier than the other. I don't know how much you move though or if this applies to you.

Sorry I couldn't be of more help. I hope you do get some answers and fast. xx

suzygirl

Thanks Cris and starburst, I went away and had a good think. Then I remembered that the muscle weakness was one of my initial symptoms, it came on very dramactically and quickly. One day I couldn't lift my hands to dry my hair or turn the pedals on the bike. When swimming, I would be unable to climb out of the pool and couldn't make the ice skates move.

I am so silly, have no idea why I am unable to remember these things, panic, probably! :roll: I did mention it to the physio though and it helped her identify what the problem was.

Think I am going to see the gp over my eyelids rash. May as well bite the bullet and check it isnt related to the muscle weakness, which I am really hoping it isnt. I just get put off by no quick fix answers and referrals for more tests etc. Sometimes, I just can't see the point. I am already on meds and it won't change anything, I will still have the same difficulties. I just can't be bothered by it all at times, and just want to live my life rather than filling with it with endless tests and doc visits.

Does anyone else find that? I know it probably isnt a sensible attitude, but I hate having my life consumed by all this more than it already does.

skezier

Hi Suzy,

Oh right there with you flower....

I made a choice back along... I know what the payback will be but i will pay that price...

Hate it though Love, tea, a ((((( ))))) and a bucket of bone ease. Cris xx oh and a huge bowl of gourmet and another of dry food for Izzy xx

lavenderlady

so sorry you have to go through all these tests most of us are the same my life is spent at the hospital or DRs gets you down at times, I spent years having scans on all of my body over and over again to find the cause of my muscle weakness it was thought to be MS and sometimes I do still wonder as my gut instince tells me it is but they've settled on SMA i too have problems swolloing and being breathless they too think is asthma not 100% sure of that,
I see the neurologist every year more tests each time, got to see a new nerve consultant in September as my back is totally numb so is my right side arm and leg, they put long needles in my muscles to check for nerve movement whcih came back my right arm is basically dead as far as nerves are concered same for most of my back, the test sounds horrendous but it didnt even bleed, lets hope they find your problem soon and be 100% sure of it as that does cause your so much worry michelle

suzygirl

Hi Michelle, thanks for your reply. Can I ask what SMA is? Sorry for my ignorance. I have part of back numb as well, one of these days I will get round to mentioning it to the doc It always get forgotten as there is always something else more important going on. I had assumed it was down to the degenerative disk disease and OA in my spine. It is very odd having it numb, but it isn't too troublesome fortunately.

Cris, Izzy says thanks for the food. She is very hungry at the moment, as she has been bought a new food bowl and new cat food. She dislikes them both and is choosing not to eat instead. What a diva!!!! Just like her owner Think I may have to give in and go back to the sachets, she loves routine and dislikes change. All I have changed is to tins, instead of sachets. :shock: Fussy madam! Hope you are ok x

valval

my back got kind of numb the other week it was because all the muscles had gone into spasam due to problems with sternum and with anti inflamatorys and exercises have sorted it val

skezier

Hi Suzy,

The numbness flower I do get in the lumber. The whole thing goes numb on the outside but has this deep routed pain deep in the bones.....

Mine happens when I have aggravated it too much and they tell me its the peripheral nerves and I have nerve root damage in there as well.

The spasiming val said about.... I have the botox for that and it i really good cus mine never unlock now without it.

tis over due but she is doing a shopping list for the back and neck and she is just trying to fit me in with theaters as T has 2 out cus they are broken.....

Money is very tight this end and they don't seem to be being repaired....

Izzy is naughty flower. cats are like that eh?

i once trapped a load from a trout farm, some where neuters and returns but he wanted half the number.... I had to keep a few and one... Suzy one would only eat gourmet seafood platter...

Now she was 4.5 lbs and was living in a rabbit warren eking a survival out of bins and I kept saying to her she didn't eat that out of them!!!

Hey she tamed (with me) and was such a ice cat.. some of the others never managed to stop hissing at me

Leaving you a ((((( ))))) and a hope your doing okish just now? Love Cris xx

suzygirl

Cris, you did make me laugh, with the gourmet seafood platter and the bins story!!! Izzy has just relented, eaten a little and gone to sleep! She has finally got a collar, up till now she has been too tiny for one. We got a kitten one at the weekend and it fits her now!

My back numbness is at thoracic level, the vertabrae or disks hurt at bone level but if you touch the skin there is no sensation. I only know cos when hubby rubs my neck and goes down my spine the feeling stops. Somehow, I dont see it as a big deal compared to everything else. Its my neck that really hurts and causes trouble more, I assume it is connected somehow. Can't see what they would do for it anyway?

Hugs and a cuppa for you!!!!

Val, that is interesting yours is connected to the sternum, I do have problems with that when I flare, which I will mention to rheumy when I finally get another appt! Hope you are ok x