Legs

[Maryjcl]

Morning all, just wondered if anyone else feels like their legs are a ton weight, not too much pain but really heavy making it hard to walk round and tiring x

[Hidden]

Yes my arms and legs both feel like this for much of the time. No explanations though although I have Sjögren's, neuropathy and Raynaud's.

[Maryjcl in reply to Hidden]

Hi, thanks for replying. I only have the diffuse scleroderma don't have any of the others at the moment but sure that can change 😁 The leg thing is so strange, do u have scleroderma? X

[Hidden in reply to Maryjcl]

Well I'm under a specialist Scleroderma doctor and my ANA has a pattern relating to Scleroderma or Myositis but so far he's calling it primary Sjögren's (confirmed) and thinks i only have a mild Raynaud's secondary to a severe small fibre neuropathy.

I think they assume the heaviness is part of the famous Sjogrens fatigue with me as I've had nerve conduction tests to rule out anything affecting my large nerve fibres. It is very bad at night - I feel I can barely move my arms and legs around the bed. Have had it for a few years - first started up when I was misdiagnosed with RA. When I told my neurologist she looked at me like I was off my trolley so I've given up asking about it now. I do have "significant wear and tear in my lumbar region and degenerative changes in my cervical spine but not sure if these would cause this horrible heaviness in all my peripheries?

I'm on max dose of Mycophenolate.

Sorry not to be more useful about this.

[Maryjcl in reply to Hidden]

No u have been a help, I have arthritis in my spine and osteoporosis at the bottom of my back also think I have arthritis starting in my hip so maybe this has something to do with it. Either way I am going to ask for it to b checked x

[Hidden in reply to Maryjcl]

In that case it could be sciatica related perhaps? I didn't manage to get an answer about this out of the Scleroderma doc but he did confirm that CT last year shows I have quite severe degenerative arthritis in lower back and hips. I try hard to keep active and do Pilates to strengthen my core. I have my name down for OT and physio because standing for any longer than 30 seconds is becoming really difficult.

[Maryjcl in reply to Hidden]

I know what u mean it's hard to get answers. I find it hard sometimes to stand for a while and sometimes can't sit for too long either..very frustrating x

[Hidden in reply to Maryjcl]

Oh me too - moving about gently helps me most but my work is very sedentary.

[resilient7]

Yes I have been diagnosed with limited scleroderma and raynauds for 6years now and have complained about leg weakness and to some extent arm weakness for at least 3 years now but no tests offered by rheumy. My GP did a B12 blood test but no follow up offered. I am going to put more pressure on for Sjogrens tests as I do get a lot of fatigue sympoms and dry mouth etc. I must say it is a frustrating symptom to cope with.

[Maryjcl in reply to resilient7]

It sure is frustrating, just been told I have the start of raynauds so this might b a reason x

[frillyhilly]

Hi, I have had Primary Raynaud's for too many years to mention. The reason I got the diagnosis of Raynaud's was because my legs felt heavy and hurt all the time. I could only find relief if I covered them with a heavy warm throw/cardigan/etc (lightweight and warm did not help).

Once I changed my life to stop Raynaud's attacks my legs got a lot better but I would periodically get the same thing - usually after I had been walking for a while.

These days I get the same thing but it has shown itself to be caused by water retention. I only need a little extra water in my legs and they feel heavy and that dull pain all over starts. If it's being really bad, my bones start to hurt as well and then they feel cold.

I believe that even slight water retention combined with Raynaud's drops the circulation, so leading to the pain and eventually coldness which will be followed by a Raynaud's Attack.

The thing that made a huge difference for me is an electric bed which allows me to raise the foot end - even a small raise all night makes a huge difference. When I'm laying on the "sofa" I use a wedge to raise my legs a little and this also helps.

The other thing is to see if you can exercise your legs - I find just raising my heels slightly and dropping them down, wiggling toes, and generally fidgeting helps some. Exercise books for the over 60's are good because they try to help with the circulation problems people get as they become older - I had to start on these when I was in my 40's :O] Or better still get to see a Physio (it was a physio that pointed me at the over 60's books!).

As you can see I've been lucky so far in that I haven't had to resort to prescriptions to deal with it.

I hope you find something soon, Nicola.

P.S. Just thought of this - warning it sounds silly - also I have a physical disability in the pelvis, which gives me "sciatica" so it might be irrelevant. My husband regularly squeezes my toes and feet. If I don't react he carries on until they tickle. This loss of feeling in the feet also spreads into my legs making them "heavy". Once my feet are ticklish within about 10mins my legs are much better. Sounds daft, but it works for me.

[Maryjcl in reply to frillyhilly]

Thank u Nicola, the tickling toes thing made me smile. All this has been useful as I have just come from the hospital and been told I now the start of raynaulds so this might be the cause. Thanks again Nicola, take care x

[Suzyannayoung]

Hi Maryjcl , I have diffuse Scerledema , raynauds ,also polymytosis . When I was first diagnosed 5 years ago I remember I was having problems getting upstairs at work and difficulty even getting off a chair, my specialist must have taken notice if what I was saying as run some more blood tests, looking at my ck readings , which were 10,000 instead if under 100. He said I had hit the jackpot in immune , just my luck. I mention this as my legs and arms feel like lead weights and make everyday things of just moving about very hard work and I am soon in a sweat . Because you have been diagnosed with raynauds maybe they aren't looking for anything else. Hope you find thus helpful .

[Maryjcl in reply to Suzyannayoung]

Hi suzyannayoung, thank u for replying. This is exactly how I feel and can also have sweats doing the simplest of jobs. I have diffuse scleroderma and have recently been told I also have raynauds. Maybe I should ask for further tests to see if there is anything else wrong, as if this is not enough 😁 Take care x

[Suzyannayoung in reply to Maryjcl]

Hi there, yes I would ask for tests, I'm never really sure which disease causing what symptoms, not that it makes much difference. Fingers crossed you don't have anything else, but if you do you need to know as I nearly lost my mobility at one point and lived downstairs for 8 months, could do nothing for myself without Help. It causes muscle damage , they get how much by the c/k reading in a blood test. The earlier it's picked up and treated the better the outcome. Fingers crossed for you 😊

[Maryjcl in reply to Suzyannayoung]

Thank u for the heads up, take care xx

[MilkMaid]

Hi Maryjcl.

I have scleroderma and swollen heavy lower legs, muscle fatigue etc. Since I have been on Methotrexate & wear compression socks the heavyness has virtually gone during the day

[Maryjcl in reply to MilkMaid]

Hi milkmaid, thanks for replying think I'm going to speak to my rheumatologist and ask for more tests or at least some medication to try and ease it. I'm on mycophenolate at the moment, take care x