Hi 😊 I was diagnosed with limited cutaneous systemic sclerosis in October 2023, aged 58, after sudden onset Raynaud’s in May 2023, together with very obvious nailfold capillary changes, and progressively worsening musculoskeletal pain and swelling, and intermittent severe burning / pain in my fingers and toes and the arches of my feet. Blood tests came back ANA centromere positive. Nifedipine seems to be controlling the Raynaud’s well, but I am really struggling with the ongoing musculoskeletal pain, tightness and swelling, and associated fatigue. I was first put on hydroxychloroquine, which unfortunately was ineffective, followed by methotrexate, which worked like a dream for 3-4 months, after which my symptoms returned with a vengeance, together with painful mouth ulcers, so my consultant has just started me on mycophenolate mofetil, but has stressed that this can take three to four months to show any benefit. I have now been on it for six weeks without any improvement and am really struggling with the musculoskeletal symptoms. The best way I can describe them is a sensation of having heavy weights constantly attached to my arms and legs, and a feeling of tightness in my forearms and lower legs. These symptoms worsen throughout the day and with exercise, causing pain and swelling. These symptoms are debilitating at best and disabling at worst, to the point where I am currently not able to drive or walk very far, and I have been signed off work (I am a secretary) until the mycophenolate hopefully takes effect. I am having regular physio and am trying to keep as mobile as I can, but the lack of improvement is getting me down and I feel as if I am in limbo waiting to see whether the mycophenolate works for me or not. I am interested to hear, therefore, firstly whether anyone else shares these symptoms - this weird disease seems to manifest differently in everyone! - and secondly whether mycophenolate has helped. Thank you for reading and I look forward to hearing from anyone in the same boat 😊
Musculoskeletal pain, tightness, and ... - Scleroderma & Ray...
Musculoskeletal pain, tightness, and swelling in limited cutaneous systemic sclerosis - feel as if I have heavy weights on my arms and legs?
Sorry I can't be much help just wanted to let you know that you are not alone. I also suffer pain every day, especially across the back of my shoulders and in my neck. My arms are also very heavy. I am not on any treatment for this, just keep being told that it is degenerative and that it will not get any better. Good luck
Thank you so much for responding and sharing, it definitely helps to know that I’m not alone in this. Sorry to hear that you aren’t on any treatment for your symptoms, that must be tough to deal with. 😢
you are most certainly not alone we are all hear to support each other yes all of what you have described I have suffered with a few more symptoms I won’t go on about but feel free to look back at previous posts I take Hydroxychloroquine and Rituximab also iloplast infusions alongside viagra for raynaulds as nifedipine is not my friend unfortunately your right this journey is hard with so many varying symptoms and each person deals with their pain in different ways I find heat works for me I wrap myself in an electric blanket this helps with the joint pain or as I describe turtles knawing my bones physio helps a little and I use CBD heat cream you can buy on amazon this gives some relief. I sadly have had to take early retirement as mine is systemic and nothing lasts very long at all for me but know your not alone xxxxx
Thank you for sharing, it really helps to know that someone else suffers with and understands these symptoms. I’m so sorry that you’re also suffering with other symptoms and have had to take early retirement, that’s a huge thing to deal with in addition to everything else. The treatments are definitely trial and error, but I also find that heat is the one thing that works well for me. I’ll definitely investigate the CBD heat cream and will look back at your posts. Thank you again. Xxx
here’s a link to a previous post about supplements. Seem to help me when I have similar symptoms
healthunlocked.com/sruk/pos...
Thank you so much, that’s really interesting and helpful! I will definitely investigate and try some. 😊
Again, like the prescribed drugs, it might take a few weeks for your body to absorb enough of these supplements to notice an improvement in symptoms. Good luck with finding relief.
Good point! Thank you again for taking the time to respond, for your suggestions, your kind words and your support, much appreciated.?😊
Hello,
I was put on MMF last year and it took comfortably 4 months to start feeling the benefit and at nearly 6 months in, it is still continuing to have a positive effect on my skin. My rheumatologist explained that our white blood cells renew every 3 months, hence why it can take so long for the drug to work. I called them after 3 months and said I was worried that it wasn’t doing anything and they told me to persevere and if after 6 months there was no change, they would review my meds.
It’s hard being told to be patient when you desperately want relief from the stiffness, pain and heavy limbs but there are a few things I did to alleviate some of those symptoms.
Stretch! Don’t underestimate the power of some really simple/limited and gentle stretches for your body. It’ll be the last thing you want to do but it will benefit you in the long run. And moisturise - do everything you can to keep the skin supple, especially on the arms where the tightness is ever so debilitating. I also took 800mg of ibuprofen in the mornings and this also helped me to get through the days semi normally.
The pain in my knees/joints was one of the first things to go as the MMF started to work at about 8-10 weeks in, followed by the tightness in my thighs and skin on my arms, gradually allowing me to straighten them again. My hands are slowly improving and they are no longer fat and puffy in the mornings, although they are definitely swollen just not as bad. My consultant explained that my fingers would most probably never be quite the same again as a few skin changes have already taken place but it is what it is.
This is basically a really long winded way of saying hang on in there, it WILL start to get better. You’re still building it up in your system now you’re up to the full dose at 6 weeks in - it’s annoying but it does take time. You’ve got this!
Hugs x
Thank you so much for responding, this is exactly the encouragement I needed, especially re the time it takes for the MMF to work, so I just need to be patient a little while longer! You’re definitely right re the stretching, I’m doing the exercises the physio gave me every day, even though some days they’re more difficult than others, which I find frustrating, and you’re also right re the moisturising. 😊 Unfortunately, my rheumatologist has said I can’t take ibuprofen or other NSAIDS, but hopefully I’ll see some benefit from the MMF in the next few weeks. Thank you again. x 😊
Hi,
This all sounds very similar to me. Due to the muscle involvement I was diagnosed with systemic sclerosis overlap with myositis.
I too was prescribed mychophenolate which I am still on. I was unable to work for a year but am now able to work full time- yes it’s hard but still doable.
Having rituximab infusions which I get every six months was the turning point for me.
I hope that you’ll be able to see some improvement soon.
Take care
Thank you so much for reaching out, it’s really comforting to hear that you can relate to these symptoms and I’m not the only one!
My consultant has just taken a further raft of blood tests looking for possible overlaps, so it will be interesting to see whether they show anything, and she is also planning rituximab as the next line of treatment if the mycophenolate doesn’t help sufficiently.
It’s really good to hear that you’re back at work full time - do you still suffer much from horrendous fatigue that seems to come hand in hand with the other symptoms?
Thank you again for reaching out. 😊
I'm with everyone else here - hang on in there with the MMF. I too experienced the sensation of heavy weights on my body which was very worrying. It was 3 months for me for the Mycophenolate to show effect and I was then able to get back to near normal in many aspects of life. I still get tired but nearly as badly, so have to pace myself. My hands are badly affected (and gut the worst in my case) but exercises are hugely helpful. There are some on-line physio exercises on the SRUK website. I go to a Stretch class (sort of gentle Pilates/yoga) and find that very beneficial. Also supplements as appropriate - turmeric is renowned for its anti inflammatory benefits, but probably best check with your consultant or GP. Very best wishes.
Thank you so much for reaching out and sharing! 😊 I find it so difficult and frustrating trying to explain my symptoms, so it’s so good to hear that you understand and have experienced exactly what I’m describing. Thank you also for the encouragement re the MMF, I really needed that too. Pacing myself is something else I’m struggling with, but it really does make a difference, especially with the fatigue, so I need to work on that too. I’m also going to investigate additional exercises and supplements, which seem to be really beneficial. Thank you again for your support. 😊
Hi dear Giggles65,
Please check your CPK level, is your level of Creatine phosphokinase very high ?
I am 62, have diffuse Scleroderma with severe kidney damage and had similar problems with you, all my muscles badly aching, with ulcers, swelling, burning pain in my fingers, etc., etc..
For almost 2 years i could not walk more than 10 meters, could not sit in a chair for more than 10 minutes because of the pain, even changing clothes was an ordeal because of the pain in my arms and shoulders. This situation eventually affected also my gastro-intestinal system, could not eat much, was loosing weight and continuosly vomiting, and at one point i almost had lost all hope, i thought i was done for, that there was no solution.
Then my doctors decided to put me on Immunoglobulin (ImgA), which changed everything for the better. They said that the disease (Ssc) had caused "Secondary Myositis" because CPK levels were high for more than 18 months and Electromyograms showed 60% loss of muscle function. So i was given (ImgA), intravenously once a month, and within a few weeks my muscle pains simply just "went away".
My legs are still weak, still very slow on uphills and staircases, but all that aching pain has disappeared, i am so grateful, almost back to normal, the pain has stopped, i can walk long distances, i am eating without vomiting and can do a couple of chores daily without all that pain and suffering.
I hope this helps... possibly worth looking into ?
Thank you so much for reaching out, that’s really interesting! My consultant has just taken another set of bloods and I’m seeing her again for follow up in three months, so will hopefully get some answers then. It’s really good to hear that you’re got a diagnosis and treatment which is working well for you. Thank you again. Take care.
Hi there. I too have this leaden limbs with bone pain symptom and have suffered it for about 14 years. Initially I was misdiagnosed with RA, then rediagnosed with Sjogren’s with Raynaud’s and finally diagnosed with Systemic Sclerosis - never sure if limited or diffuse as I have an antibody more diffuse but could be the severe end of limited - was told it makes no different though.
I was put on Mycophenolate at start of pandemic having tried all the others from this family of anti-rheumatic drugs. It’s helped the fatigue and I’ve never had the early and aggressive RA/ inflammatory arthritis symptoms back. However the leaden arms and legs and fatigue with bone pain - mainly in legs - only finally gave me some reprieve after two rounds of IVIG in 2022 and 6 momths ago, Rituximab. The Prof I saw at Royal Free suggested this biologic as a good second line treatment for MSK issues and lung and skin involvement. I don’t have any lung issues now although these were definitely starting prior to mycophenolate. And my skin involvement is minimal - mainly quite prominent telengecstasia and furrowing around my lips. But for the first 6 months I definitely noticed that the resting bone pain in my legs and my physical stamina had improved. It’s slightly coming back now but not as bad. My arms and hands still suffer from the leaden sensation and I can’t stand for long due to legs folding but guess a lot of this is just some long term damage. Anyway it hasn’t got worse and the absence of resting bone pain in leaden legs is one of main reasons I’m going to continue with Rituximab in May.
I suspect there’s a mild Myositis component to this for me - either Polymyositis or Dermatomyositis- both often associated with my scleroderma antibody and my rheumatologist agrees. I believe that Methotrexate and Hydroxichloraquine are both better for MSK symptoms than Mycophenolate - which is more useful for organ involvement. Maybe you should ask to try methotrexate or Hydroxichloraquine if mycophenolate doesn’t help enough?
Thank you so much for taking the time to reply and share your experience. 😊 Leaden limbs is a great description for this symptom, which I’ve been struggling to describe! I’m encouraged by your experience of mycophenolate and rituximab, which my rheumatologist is considering as next line treatment for me if the mycophenolate doesn’t provide sufficient benefit. Hydroxychloroquine was unfortunately ineffective for me, as was methotrexate after only a few months, so I’m pinning my hopes on the mycophenolate with the option of rituximab in the future if required. Thank you again, I really appreciate it. 😊
You’re bery welcome. However I forgot to add that I have degenerative disc disease affecting my entire spine and also that I’m hypermobile so had wondered if these factored in to the leaden arms and legs. But reading all the replies here makes me more sure that it’s mild Myositis and that’s how it started as well when I was misdiagnosed with RA.
Sorry to hear that you’re also suffering from those too, that’s a lot to cope with, but it definitely seems from the responses that the leaden limbs are a common symptom amongst us, and I’m really glad that I reached out and am so grateful to everyone for their replies.
I was diagnosed with diffuse systemic sclerosis in November 2022, although I don’t suffer from skin tightness particularly. When I was first diagnosed, I really was under the weather, swollen hands, feet, exhausted, lost weight, thinning hair, sore arms and shoulders. I am on hydroxychloroquine and nifedipine.
Most people with autoimmune disorders have a gut imbalance so I take pre and probiotics (The Nue Co) plus turmeric and circumin and these days I feel really well. I ride horses, travel, scuba dive (although that might be changing soon as I have mild lung involvement) . I hope you find some answers and the treatments help.
Thank you so much for your reply and for sharing your experience. I’m really happy to hear that the hydroxychloroquine and nifedipine are working for you and that you are feeling so well, that’s really encouraging to hear! 😊
I think after the initial flare up, for me it calmed down and as I became less stressed that also helped. Stress is such a damaging state to be in, I think you have to find a state of calm, which is really hard when we feel so overwhelmed and worried. There are so many knowledgeable people on this forum and I have learned so much.
That is a very valid point, and I’m only just realising how much everything has affected me mentally as well as physically. And yes, I’m so grateful to everyone who has reached out on here, the sharing of stories, information, and support has really helped and given me the boost of positivity I needed. 😊
Hi,
I am feeling exactly the same, I have Sjogrens and also ANA positive centromere antibody. I am currently on hydroxychloroquine but don’t feel like it is doing anything at all. My pain in my neck is being put down to degenerative /wear & tear following an mri of my neck & spine. I try to do stretches everyday but the heaviness in the arms and legs never eases
Thank you so much for taking the time to reply and for sharing. I’m really sorry to hear that the hydroxychloroquine isn’t helping and can completely relate as it didn’t benefit me either and my symptoms continued to worsen whilst on it. After six months my consultant changed me to methotrexate, which did help for a little while, so hopefully you can be offered an alternative to hydroxychloroquine too. The constant heaviness is exhausting and depressing, so I really feel for you. Take care.
Upper back pain
Worsening Raynaud’s 
Has anyone been prescribed Mycophenolate for stiff and painful hands rather than for ILD?
Do you experience 'Painful legs and moving toes' (PLMT) together with Raynaud's?
Advice please 
