Hello everyone!
This is my first post - I'm just wondering if anyone else gets pain in their shoulders or groin area at all with their condition? I find the pain in the shoulders is when I wake up some days and the groin is after I've been walking for long periods of time. Do you think this is tendon/joint damage perhaps from the Scleroderma?
Hello SarahJane, welcome to this wonderful site, we are a friendly bunch and will always help in whatever way we can. As regards to the pains you mention, all I can say is SNAP! I have just put it down to this very interesting condition we live with, and everyday it throws us some new symptoms for us to live with. Next time you see your rheumy mention it, so it puts your mind at rest. Smile and wave, smile and wave. xx
Thanks Fairy, I think you're right I'll mention that at my next appt but already feel better that people replying get similar symptoms so part of the "norm" with this disease to some extent! Xx
Pleased to meet you SarahJane - I too have systemic sclerosis and have pain in my shoulders. It's got so bad I have had to give up knitting. I'm uncomfortable in bed and can't lie on any shoulder for too long. I get a lot of pain in the right side of my lower back after walking a very short distance and when I first get up in the morning. I think the aches and pains are part of this disease as I understand rheumatoid arthritis is all part of this condition. Very occasionally my rheumatology department gives me a steroid injection in my shoulder joints. I also find that carrying bags, even not very heavy ones, sets off shoulder pain. I now choose the most lightweight handbags I can find, usually fabric ones, as leather has weight even when it's empty; and I find it a good excuse to indulge in Kipling handbags which I love - they're lightweight and washable and come in all sorts of styles and colours. [ No I'm not a sales person nor am I on commission, just a bit nerdy (lol) ]. It's great to have you with us - you'll find that this is the only place you can have a good moan and people will understand what you're talking about.
Hi Betsie, thanks for your reply! I know exactly how you feel, I've woke up some times crying in pain with my shoulder, the first time it happened I thought I'd dislocated it! Now I'm trying to sleep on my back as much as possible. Thanks for recommending the bag, I've been using backpacks to distribute the weight but not always convenient, I'll definitely look into those.
Yes I can see already that this is a great place to be, I've been reading a few posts and feel more at ease that we all know what the other is facing and can help 💕 all the best
I definitely have the groin thing happening just on my left side though. Sometimes it feels as though my leg is going to fail me and I am going to go down as it comes and goes and there's no rythym to it. As you say thank goodness others have the same. Keep moving I guess is the answer.
Yes I know the feeling! It ends up making me limp whilst I'm walking but when I sit and rest it goes relatively quickly , this was actually one of the first symptoms I had before my diagnosis and I just thought I'd pulled the muscles 😑 but I agree, keep moving it the best advice I would give too. Thank you for sharing
I also have these exact symptoms I researched it and this is what I found.
Excess fluid can Joint stiffness and can also be caused by inflammation and can occur anywhere on the body including the shoulders, elbows, wrists, knees, ankles and hips.
Mine happens more when I stand in one place for a long time and fluid collects in my legs causing swelling. But it will happen sometimes getting up from a chair and after 3 steps it happens. When the fluid build up your joints are floating and over lubricated.
I sleep on a wedge pillow that keeps me at about a 35 degree angle. This forces me to sleep on my back which helps with the shoulders.
That makes a lot of sense, when it was happening in the beginning I started taking Glucosamine which builds fluids around the joints but found it irritated it and worsened the symptoms- after your info, no wonder, i was just adding more fluid to the problem!
Thanks for your reply, I'll look into getting that wedge pillow too as I always end up waking on my side
Hi!!
Wow! Just read your post! Yes! Yes! Yes! Its been getting worse lately, its odd, sometimes the pain is so intense.
I don't understand....
It's comforting to know we're not alone! Have you spoken to your specialist about it at all? If so did they advise anything? I'm speaking to mine in August
Hi again everyone. I too have a wedge pillow. A good one is about £60 - if you Google reflux pillow you'll find the ones made of good quality foam that will last without going all saggy. I was advised to use one to help with reflux and uncomfortable stomach. Now that I'm used to it I can't manage without it. What makes me laugh is that when we go away it doesn't do your street cred any good have to swan into a hotel with the big wedge monster under your arm so I hide it in one of my husband's zip up suit cover bags. I use the wedge thing with my my normal pillow on top of it. The wedge is quite long so that you don't get a crick in your back.
I get this too although I have Sjögren’s rather than Scleroderma so far, originally diagnosed with RA. The groin pain can take my breath away with each step - it’s right in my genital area just now - so undignified! My GP thinks it might be sacroiliac in origin and I’m wondering about some sort of spondyloarthritis as I have other nail problems and painful fingertip top joints.
I think most of these conditions bring about arthritis or arthralgia of some sort. Mine is presently in the base of my spine and my groin. Sometimes in my shoulders too. If I lift anything at all I pay in my lower back and groin and if i make myself walk as much as possible each day I pay too - but not as much as I think I will pay if I don’t!
My inflammation levels are always pretty elevated so I’m minded to think that the two go together - although these days I have no inflamed looking joints to speak up for me. And I use memory foam pillows to prop myself and extra soft pillows for arms and legs. The bed is such a tangle by morning - my husband says I’m impossible!
Hi Twitchy toes,
I keep moving as much as possible too. Have you thought of trying an anti-inflammatory diet at all to try and ease your inflammation?
I tried this (AIP diet) last year but it seemed to only make things worse in my case?
I've just looked online at the diet and it states it removes grains, legumes and dairy maybe this had a factor? I cut out nightshade vegetables and ate more fresh fish I found that this helped along with eating Fage Greek yoghurt which has 5 bacteria's for good gut health - this eased my inflammation (I still have bad days but found they were less) perhaps try that see if it benefits you at all
Systemic sclerosis and memory/confusion..?
Systemic sclerosis and vein
CREST systemic sclerosis 
