Severe leg pain/weakness

[flowflow]

Does anyone get severe leg pain (mainly thigh and calf) and leg weakness? I find getting up each morning very tricky due to pain and sometimes when I stand my legs physically shake. I have noted I’m losing muscle tone in my thighs but I do try to walk frequently. Walking has become hard and something I feel I have to force myself to do. I feel I need to do it for my muscles sake but it hurts and now I get severe burning and rashes on my legs (mainly thighs) some days when I do walk. Drs are baffled. I’ve been told I have UCTD and suspected systemic scleroderma. I read about something called myositis and wondered if it could be connected to that or if this is normal for scleroderma? Thank you for any comments.

[MEW53]

Hi flowflow,

Happy New Year.

I got very ill in 2014 and suddenly couldn’t get out of bed, I baffled my doctors.

I lost power in my legs and in my arms and lots of pain and then went to see a rheumatologist privately for my initial visit then he was keen to do lots of tests on the NHS and after getting admitted to hospital for 8 weeks, I was told I had Myositis with a Scleroderma overlap (systemic sclerosis). Early diagnosis is important but as it’s rare not many doctors have come across it. I’m fairly stable now and am on a good cocktail of drugs.

Don’t give up but get checked out ASAP so as you don’t lose any more muscle power.

Good luck.

[flowflow in reply to MEW53]

Hi happy new year! Thank you for your reply. Can I ask how they diagnosed it? I mentioned to my Gp the worries I’m having as it’s definitely getting worse. I looked my symptoms up on line (I know that can be a bad idea but sometimes a must!) and myositis came up. I mentioned it to dr as a could it be this and nothing’s happened. Everyone seems to be blaming it on fibromyalgia but this is definitely a change and something different. I waked yesterday and literally the pain kicks in straight away and the burning is just horrendous. How much did it cost to go private ?

[MEW53 in reply to flowflow]

Lots of blood tests, several other tests, CT scans, MRI scans, videofluoscopy (to check the swallowing issues out), gastroscopies, endoscopies, PET scan, all sorts of camera work. I can’t remember exactly what went on and I was very ill, however I did keep a diary which helped the medics at the time.

My initial visit was nearly £300 which included a steroid injection but I decided it was well worth it as he was expert in his field and he trained at the Royal Free Hospital in London (this is a centre of excellence for the condition). When I saw him a few months later my condition had worsened and he was stunned to see my decline. I still see this consultant every 6 months and then get referred for various other tests.

I have monthly blood tests so that I am monitored regularly.

[flowflow in reply to MEW53]

Hi, thank you again for your response- can I ask a daft question but if you saw a private consultant then how do you get referred for nhs tests? I was told if I went private I couldn’t then have any tests on the nhs? Are you feeling better now or monitored mainly with steroids? Thank you for speaking, helps speaking to folk who ‘get it’.

[MEW53 in reply to flowflow]

I kept my NHS appointment that was a few months away and as he was the same consultant I got all my tests done on the NHS in his out patient clinic. I’m feeling much better than I was in those very dark days and I couldn’t walk for a year, I walk with a stick, I’m on steroids and mycophenolate mofetil. I started with cyclophosphamide infusions in the hospital which made me feel dreadful for several months. In 2015 a year after diagnosis I was moved onto Mycophenolate which has helped enormously.

[Melarky]

Recently diagnosed with Myositis using an EMG test (fine needle into muscle with electric current passing through) not pleasant but this is the test they use. I have a diagnosis of overlap mixed connective tissue disease. On methotrexate and hyroxychloroquine. Started treatment in August 2019 and already seeing significant improvement! Ask your consultant for a referral for this test sounds v similar to me! Take care and good luck 🤞🏻😊

[MilkMaid]

Hi Flowflow,

Go Private and get a diagnosis. Most of the consultants will do NHS work and will transfer you on to their list if they can. Early diagnosis is key so it is money well spent. Good luck

[positivedaybyday]

Hi Flow Flow

I had flu Xmas 2016 ( my trigger ) & felt as if my body was at war.

I too had two private consultation''s by a German doctor whilst on holiday.

My tests at that time were all blood tests as I felt like you.

The 1st tests showed my whole body was inflamed. He thought at the time it was an after effect of the virus & to give myself time for the body to recover.

It didn't work, I was similar to you problems with my legs & strange things happening.

I lost a stone in weight very quickly & felt dreadful.

I went back & he took more blood tests, he was shocked at the difference in me.

This time I was diagnosed with diffuse systemic sclerosis & told I needed urgent medical attention.

I went to my GP armed with blood tests & a letter from this Dr.

Thank God I had these as he had never heard of this condition.

It's SO important to get the right diagnosis. After many stays in hospital & intense treatment I'm finally more stable.

So many times in hospital I came across people that had waited an awful long time for a true diagnosis. The problem here is it can then lead to organ damage.

I was so lucky, you have to keep pushing & take control as it can be a lottery.

Good luck. I have myositis too. Xc

[Brand1985]

I suffer with leg pain and pain in my feet! I get a lot of bad cramping in my toes and legs! I'm on naproxen 500mg

[Lelly13]

Hi. Yes I get the leg pain and stiffness I've been diagnosed with scleroderma morphia probably due to radiotherapy. Like you I find walking hard but feel better afterwards. But cannot walk too long or sit too long as I feel stiffer.

[Jada1999]

Hello I too had pain in my thighs and hips. Could not get up unassisted. Legs literally shaking while standing. Muscle tone changed. Weight loss. Weak . No energy. Diagnosed with a polymyositis. interstitial ling disease. Pulmonary fibrosis.

[Ncoff]

Yes I struggle to walk up and down stairs without pain in knees, and feet