Does anybody suffer with painful, heavy legs when walking. I have recently developed this and it is worrying me. The pain goes away when I stop walking but whilst walking I literally have to think so hard about putting one foot in front of the other the pain and feeling like my legs are full of lead is so bad. I suffer with DVT’s too so my circulation isn’t great.
Any help gratefully received.
Thank you
I've had a DVT also on a flight from NZ and they told me it wasn't connected to my Scleroderma. But i knew it was. Yes I have trouble walking, legs feel as if they are running right out of fuel, muscles aching seems like theres no oxygen getting to them etc and find I need a trolley at the supermarket to help. I do have Chronic Fatigue tho as well. Hope you get some relief somehow x
That’s exactly how I feel, have you had a diagnosis at all for it? X
It was the DVT that first took me to the doctors to get to the bottom of my health issues back in 2013. Diagnosed finally after ANA test with limited scleroderma. No, no pills for that just deterioration and the illness playing out its course no doubt. Let me know if you ha e any luck. Been waiting for my 6 monthly appt with the Rheumy which stretched to 10 months with their cancellation.
I will keep you informed. I have had limited schleroderma for about 15 years and seem to be getting some new symptoms. Good luck.
Just love your lovebirds. We had two when my boys were little. Very noisy though.
Yes, so painful. See if your doctor can order a arterial study on your legs. It's done with blood pressure cuffs and ultrasound it checks the circulation and blood flow. I was told I had peripheral artery disease, that blood supply is important to keep your bones alive, between that and steroid knee injections that didn't work ever I have just found out my bones died parts of my knee bone both sides. Iam now going to see a surgeon for knee replacement. Ladies be aware of circulation and your t scores with osteoporosis. And stay away from steroids of all kinds! Good luck and this limited systematic scerloderma is no good at all. Iam only 58 yrs way to young for all these issues.
Hi, I have acute systemic sclerosis diagnoised 2 years ago. The heavy aching legs were terrible, not being able to walk & intense muscle pain. It was excruciating.
I had nerve tests on my legs which also showed myositis. I saw the physiotherapist via my consultant who specialises in systemic sclerosis & started exercises slowly. I was determined to push through this. I started to walk through the pain, gradually increasing my walks. It was really hard & many times I had to stop & hold onto a tree & rest. I started to include a range of exercises on my walk, including waking fast and using farm gates to bend my legs similar to a squat but using my arms as support. For the last 4 months the leg pain has gone,,wow I can't believe it! Now, I don't know if the exercises are the key to this miracle as at 1st I had so much muscle loss & weakness. I go to Hydrotherapy once a week which is sublime & the only place I can totally relax my body. I'm seeing my consultant in September so I will be asking her thoughts on my miracle legs at the moment. It's taken 2 years to get to this stage. I did have stem cell treatment May 2018 so it could be a result of that too.
Speak to your consultant to be referred to a physiothapist & to see if Hydrotherapy is available to you too.
I wish you all the luck in the world as this condition is an upward struggle for us all. Xx
Thank you so much for your reply I will certainly talk to my doctor about it. X
Hi, I'm Jevyne. I do too. So weird. But I refuse to give in to that and a push thru it. I make mysrlf,walk a little more each,day. It gets better for me. I was jogging a bit even. I have bad Raynads as well and that includes poor leg circulation so anything I do to up the ante is beneficial. But that is ne, u have to figure this gs out for self under watchful eye of Dr.
I agree with the comments about getting studies done on your legs. The main one is an ultrasound. There is also a type of CT with contrast called "run off" studies [here in the US] that also can show plaque build-up and circulation issues.
I have found some compression socks on Amazon for runners that are knee high that i wear for the leg pain and ankle swelling that I ABSOLUTELY love,especially when I will have a day where Im busy.
Thank you, I have been referred to a vascular specialist. They will do what’s called in the UK an angiogram to check the arteries into my legs. Could be claudication apparently. Yet another thing to deal with. I actually have some of the compression stockings and they do help a bit. X
My legs constantly hurt asked go fir something to help with pain and was told ibruprofen and paracetamol they take the edge off but nit fir long
I've realised that my painfully legs play up more as I relax in bed. Yesterday I was up and down my little steps deadheading my flower baskets, the pain last night was so intense that even after painkillers, I then had to smoother my legs in deep heat to get any relief. I was made aware it was due to my systemic sclerosis 🥺
I started getting this but my Scleroderma consultant put me on steroids (heavy dose of 60 mg tapered off over six months) and it solved the problem. Luckily.
Painful toes :(
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