Shoulder Pain - CREST Symptom? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Shoulder Pain - CREST Symptom?

sunnycloud
sunnycloud

My mother has CREST and at the start of lockdown started feeling a stiffness in her left shoulder. Six months on she barely has any movement and is in constant pain and discomfort. She had an ultrasound a month ago and was told that she has calcium deposits and spurs. She has been referred to a musculoskeletal department whereby she has been given physio exercises to do at home but is doubtful that these will work. Has anyone had similar with joint stiffness and if so what treatment have you had? Also, is anyone under a specialist department for dealing with CREST or just under regular GP? Keep well everyone X

17 Replies
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You want Rheumatology Department. That is where I am seen.

sunnycloud
sunnycloud in reply to amc282

Thank you for replying. Wishing you well.

I have calcification of both shoulders and after many steroid injections to relieve pain and give movement I finally had shoulder surgery. Within 9 months the calcification had come back and before that I had complications which meant the pain was even worse. I am now back to steroid injections. I also have severe calcification of the hip but they won't do anything about this and physio barely helped.

sunnycloud
sunnycloud in reply to laucar1

Thank you for replying. I wish there was something more that can be done for you, my mother and all other sufferers. Wishing you well.

TRY WILD LETTUCE EXTRACT I AM USING IT FOR PAIN. WILD MOUNTAIN HERBS THEY ARE GREAT HOPE IT HELPS. KISSES, HUGS LOVE JULIE

Thank you Julie, I will pass this onto my mum. X

Hi there, so, if your Mother has CREST, then this is the old term for usually the Limited form of Scleroderma, it is an acronym that gives reference to some of the typical symptoms that fit with the condition - Calcinosis, Raynauds, Esophageal dysfunction (it is an american acronym!) Sclerodactyly (tapering of the fingers/thickening of the skin in the fingers) and Telangiectasia (the spidermite blood vessels seen on the face, hands, neck, chest, mouth/lips). There are underlying processes to all these symptoms and really your Mother needs to be seen by a Rheumatologist for careful monitoring and treatment.

Depending on her age, her shoulder problems may be unrelated to the scleroderma. It is common to get calcification in joints related to osteoarthritis as we age, especially if people have been sports people or had occupations that required repetitive movements of certain joints. Women are more susceptible genetically than men. She may however, also have inflammatory issues with her joints related to the scleroderma, so again it needs assessing and treating appropriately.

It is essential that she uses her shoulder, as inactivity and lack of movement through disuse are more of a problem that will occur and make the pain ten times worse. Start doing the physio exercises, gently and for very small amounts and build up gradually. Do what I call exercise snacking. A couple of minutes while you wait for the kettle to boil, or while you are sitting watching the TV....or whatever fits into your routine. Little and often rather than doing 20-30mins at any one time when you remember.

Check that your environment is organised so that you don't have to do extreme shoulder movements to reach into kitchen cupboards, or when washing and dressing or doing anything that is an issue.

Hope that all makes sense

All my best

Lucy xx

sunnycloud
sunnycloud in reply to LucyJean

Thank you So much for your advice Lucy. My mother is 70 so possibly age related rather than scleroderma. She is calling her GP this morning to see if she can be referred to a rheumatologist. Wishing you well. X

Physio exercise is what prevents most of my joints seizing up as I have severe osteoarthritis and scleroderma is also a form of inflammatory arthritis. If I don’t exercise I can barely move, so my advice is to do them!

Thank you for the advice. I’ll make sure she continues with the exercises. Wishing you well.

I had calcification from going to Pt without an X-ray that would have revealed a bone growth rather than a muscle problem or torn rotator cuff.

I do have crest now but do not know if it was related.

They wanted to do surgery but I was reluctant.ok now after cortisone shots.

I guess I still have the bone spur.

sunnycloud
sunnycloud in reply to Ricexxjm

Thank you for the information. Wishing you well x

Hello Sunnycloud. Sorry to hear your Mum is in so much pain. Yes, I have CREST or systemic sclerosis as some consultants call it. I go to the Rheumatology Consultant at my local hospital where I've had excellent care. If she doesn't already see a rheumatologist, then get your GP to refer her. My GP has told me a couple of times that he knows nothing about this disease - it's difficult to diagnose and as it's incurable she needs to see a specialist. I was diagnosed 5-6 years ago - I'm nearly 80 now and still ticking along but as I get older I'm aware that the disease is progressing.

sunnycloud
sunnycloud in reply to Betsie

Thank you for your advice Betsie. I was only reading your Blog the other day and told my mother about you! Keep well xx

Betsie
Betsie in reply to sunnycloud

I'm tickled pink that you found my blog - I presume you found the page about Systemic Sclerosis Scleroderma etc. from the menu. Hope you are able reassure your mum.

I am sorry to hear about your mum’s struggles. It does prompt me to explore more my shoulder stiffness and pain so thanks for that. I’ve had shoulder Pain for 8 yrs now and while initially I had some physio about it,

It didn’t make much of a difference and I’ve continued to struggle over the years. I didn’t think it would be CREST related (mainly as it kicked off 4-5 yrs before my scleroderma diagnosis) but seeing how Many others are struggling with something similar it might very much be the case...

what are the right ways to explore this in more detail and to understand if it’s scleroderma related?

I've had rotator cuff problems in the past and the simple exercises the physio gave me were fantastic, the pain I'd struggled with for months went in under 2 weeks, so now if I feel any discomfort coming back I just do the exercises again. I know your Mum may have other issues going on but doing the exercises as instructed will be beneficial, good luck!

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