Thin Leg

[llamehtdos]

My right shin has been giving me pain, particularly at night for last year, now wakes me up. I have also been falling over because my leg gives way. I've had a scan to exclude blood vessel problems and that was clear. I have now noticed that my right leg is getting thinner and shin bone sticks out. Is this anything to do with limited systemic sclerosis (ANA centromere positive) or is it something else? should I mention to my rheumatologist or my GP? I take Plaquenil for joint pain/RA and omeprazole for GERD/hiatus hernia. I also have Raynaud's mainly hands and feet.

[positivedaybyday]

Hi,Your pictures are a reminder of how both my legs looked like when I was first diagnosed with Diffuse Systemic Sclerosis. I had lost a stone in weight & had muscle loss in both legs. It was very difficult & painful to walk.

Whilst in hospital the Nutritional Nurse talked to me in regard to my diet. It was a great time for me in this respect, as most things which are generally bad for you I was encouraged to eat, e.g cream cakes, full cream milk etc. I was given a booklet which gave examples of meals to combat the muscle loss.

The weight improved & my legs became stronger, though it was a slow process.

With the numerous stays in hospital & specialised treatment my body is now back to normal. It did take 5 years.

The falling which you mention could be related to the muscle loss as your leg is not strong enough at the moment.

I would definately contact your Rheumatology team to discuss. It maybe you can send them photos too.

Don't delay as a fall could mean a few broken bones!

I hope your leg improves as you gain strength. Xxx

[llamehtdos in reply to positivedaybyday]

Thank you for your insight, unfortunately I've put on 2 stone in weight and don't really know why. I also suffer breathlessness and am awaiting a follow up CT scan as the first one showed shadowing at the bottom of my lungs, ? early inflammation. I wish you well you seem to have been through an awful lot.

[Redwine53]

I can’t really help you re the muscle loss, but you must eat lots of protein to help build up your muscles - so my daughter told me, as I have lost 2 kilos recently, having been told to eat less fat as my cholesterol is now high! It’s one thing after another. Also can you self refer to an NHS physio, I did when the muscles around my ankles started hurting, the guy really helped,

Your poor feet look really sore too, I now have to go to a podiatrist to get my nails cut, and to sort out any sores. I now wear gel insoles as I feel like I am walking on stones, they are a great help. I am in the 5th year of scelerderma, myositis and lupus.

Hope you get sorted soon and gain strength.

[llamehtdos]

Thank for your reply, unfortunately I've put on weight! My feet are sore and exactly as you say walking on stones, in fact I can feel and see hard little lumps. I like my sketchers, nice and cushioned.

foot with lumps

[OldTed60 in reply to llamehtdos]

I don’t suppose you’re hypermobile are you? I ask because these lumps on heel rung bells. I saw a post about them in relation to Ehlers Danlos Syndrome /EDS - which I have along with systemic sclerosis and others associated. I don’t have the little lumps but it’s definitely most associated with EDS - I just looked it up to check: aafp.org/pubs/afp/issues/20...

Re muscle loss on your leg - might you have lost weight then gained - but the muscle tissue hasn’t yet caught up? I have visible muscle tissue loss in my right (dominant) thigh but the GP thought it was just part of my dramatic scleroderma related weight loss.

[llamehtdos in reply to OldTed60]

I am hypermobile and score high on the Beighton scale, I have suggested EDS in past and my daughter is ?EDS but they have decided to go down the ME route with her. I've not had weight loss, just a bit of weight gain. But agreed some of the lumps are the same as the article.

[cowhide]

Hi, I have my right leg which is also showing signs of muscle atrophy and the shin bone is becoming more prominent. I am not losing weight. At times in the summer both my shins were really aching at night. My right foot has been puffier than my left for several years now . I assume it is all scleroderma - related, I have limited SSc Anti-centromere positive.

I did mention this to my rheumy although she is not a scleroderma specialist. She has been suggesting I go on hydroxychloroquine for a couple of years now (I'm already on mycophenolate) so with this extra evidence (along with some more hand changes) that 'things are changing' I have now started on it.

[llamehtdos]

I always thought mycophenolate was a step up from hydroxychloroquine as my rheumatologist has talked about stepping up to methotrexate or mycophenolate. I guess each individual is different, it took about six months before hydroxychloroquine made any noticeable change for me. I found I could stand in the mornings and walk down the stairs without too much pain, before it would take an age to stand and move about. Unfortunately, does nothing for shin pain, Reynards, breathlessness and skin tightness on my hands.