[jellyjazz]

I've been *touch wood* fairly well lately so have been busy with getting some uni work done but didn't want anyone to think i was ignoring you all - i came by to say Happy Christmas!

On some not so good news it has been discovered that i have muscle wastage in my left hip due to a flare a few months ago - i was prescribed crutches for going in town and day trips:worried: After feeling sorry for myself i went out and bought some stickers and now they look much nicer! Apart from the annoying clicking sound they are quote good really...i was able to go into town and i came home with no pain in lower limbs and joints at all!

Has anyone else had crutches? Or muscle wastage? Be good to hear from you

Holly xx

 

[Katharine]

Hey there

It's good to hear from you again and even better to know that you've been doing pretty well.

I think many people here have had to use either cruthces or a stick at certain stages of their disease.

As far as I know though (someone correct me please if I'm wrong), muscle wastage doesn't usually occur in lupus. It can occur in certain other "overlap" diseases - I also have polymyositis which can do that to an extent though I'm not sure if "wastage" is really the right term. So far I have been lucky to just have severe mucle weakness though I do remember Mum actually getting wastage years back (her illness was also left untreated far longer than mine).

Hopefully the crutches continue to help. Have they mentioned doing any physio to help with that too? I'm sure it would be a case for physio. I do physio regularly and it is helping to keep things more moblie and, hopefully, strengthen some weaker areas.

My hips are very painful too, and even when everything else is good that can remain a problem, but that's caused more by tendon damage than muscle problems.

Anyways, I hope that that all gets a lot better. Hope you have a wonderful Christmas.

speak soon,
Katharine

 

[Lily]

((((((((((Holly))))))))))) I'm sorry to hear about your muscle wastage. Unfortunately it can occasionally occur with muscle inflammation (lupus myositis) that has been left untreated. The muscles usually affected by this are the thighs, neck, shoulders and upper arms. Usually a blood test is taken that reveals an elevated CPK, sometimes an EMG or muscle biopsy makes the diagnosis. Very important for our doctors to be aware of this possibility so it can be treated with steroids at the time. Were any tests taken at all Holly

Another cause of muscle wastage can be from corticosteroids, but this occurs without an elevated CPK or abnormalities on an EMG test.

I hope you are able to get along ok with the crutches, I believe it would be a big adjustment and very difficult :hug:

take care Holly :hug:

love
Lily

 

[jellyjazz]

Hi Katharine,

They said i had the muscle wastage from the last big flare i had which left be bedridden for about 3 weeks - my fault for not explaining properly! So i don't think it was the actually lupus but it was me not being able to move because of the flare.

As for physio i've been doing that for a few months now - i've also gone through hydro which helped a lot. My Dad is about to buy me an exercise bike so i can keep the balance of exercise and rest going each day - i'm really hoping its going to help my fatigue

Have you used crutches yourself? I'm scared i will rely on them too much but they provide me with so much help! I can now walk around town and not be in any pain when i get back!

xx

 

[Katharine]

Hi again,

I have never actually been able to use anything to help me walking whether the pain came from hips or feet (neuropathy) because all my tendons are so shot. Crutches would put too much strain on my shoulders which are almost as bad as my hips. They would also not do my very weak and wobbly wrists any good (same for a stick), so when things got bad I hobbled...

Thankfully I can now walk pretty normally most days but there was a time I didn't know where to turn to get some help/relief.

The exercise bike sounds like a good idea.

I'm sure you won't rely on crutches too much. We do stop using any kind of aid quite naturally when the pain and weakness recedes. In the meantime using them will stop you from doing any more damage or causing any more inflammation through walking in an "adapted" way if you see what I mean.

Katharine

 

[lazylegs]

Hi Holly,

Last year I suffered some muscle atrophy even though I have been treated aggressively and get daily exercise. My rheumy's advice is to walk, walk, walk. My neuro had me increase my yoga position holding times to help build strenth. Bike riding is a good form of exercise also, but you need to make sure you get in enough weight bearing activities.

Take care,
Lazylegs