Chronic pain with scleroderma? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Chronic pain with scleroderma?

momo17 profile image

Hi, I have suffered with debilitating pain that I had attributed solely to my scleroderma as that is how it all started - pain n joints n stiffness all over…but now roughly 9 years in I am beginning to wonder if it is more chronic pain syndrome as my consultant says bloods show no inflammation in muscles and being aware that other scleroderma sufferers had pain initially but are no longer dealing with it, I am not sure. I try to be a very positive person n def not idle but sometimes I’m completely disabled with it n everything is a struggle so don’t think I am imagining it. I can hardly lift a shopping bag or anything without feeling like I need physio! My consultant said quite often if you are used to dealing with pain the nerves become super sensitive n even after inflammation gone, you will still feel it. Anyone else had similar experiences or researched into this as I’m just wondering if usually the pain would tail off with scleroderma ? Or if u are still in real pain what stage of the illness are you at?

22 Replies

I was diagnosed with LSSc with overlap about 30 years ago having been sent to the Rheumatology Clinic with chronic pain in my joints and muscles, at that time there were raised inflammation markers. . About 20 years ago I had a major flare up where any sort of movement was a big deal and I started taking Methotrexate, which has been great for me although I am now on a low control dosage. . However I have continued to have a certain amount of pain and stiffness in my joints and a lot of pain in the muscles of my legs and thighs when walking, but no inflammation markers. Like you I have put these down to Scleroderma. A fortnight ago I went to see a different consultant because I was having other symptoms such as restless legs, burning sensations in my legs, hands and feet at night, hyper sensitivity to noises etc... He found all my pressure points very active, I knew they were painful but was unaware of that significance and he diagnosed me with Fibromyalgia. It is quite common in the general community but he said that about 1 in 3 of people with Scleroderma get it. Apparently there is no actual cure, really good quality sleep, and gentle but consistent aerobic exercise to keep the muscles strong are needed, but I find just knowing what is going on helps, and I have been started on Amitriptyline which seems to be helping too. Taking it early in the evening means I get up feeling bright rather than like a zombie.It might be worth you checking this out with your Dr. or Consultant for yourself. Good luck.

momo17 profile image
momo17 in reply to SBQ1971

Thank you so much for your reply. That is really helpful to know. I’m glad you’re feeling some relief from treatment. I will def mention this to my consultant. I have been looking into biofeedback. It’s expensive but if it helped I feel it would be warranted. I’ll see what I’m advised. Best wishes with your ongoing medication n thanks again

wild lettuce extract, ebay, mt rose herbs love julie

Interesting!. I was about to pose a similar question, as in my mind my chronic back pain is intimately linked to the LSSC diagnosis as they happened around the same time, even though both the general rheumatologist and the Scleroderma team at the Royal Free say they are not connected. I’m generally fairly in tune with my body and it’s reactions, after decades of chronic issues, and to me the two also feel linked!

After too many years bashing the computer for long hours and with doubtless a bad posture - and of occasionally resorting to physiotherapy and paracetamol for neck, shoulder etc pain, suddenly one day 2 summers ago I became rigid with pain in my upper body (rib cage and into the neck). Breathing, eating, lying for more than 10 mins, sitting for more than 10 mins, reading, cleaning teeth, washing hair, stepping into the shower even - all agony/ impossible. GP prescribed strong and then stronger pain killers. All I could do was walk, slowly, constantly. Lost loads of weight.

One day I tottered past a sign saying 'massage' and tottered in. Turned out to be an osteopath, with whom I then worked for months on various stretches. One turning point. Another was being prescribed Mirtazapine for anxiety (after I had told the GP I was suicidal) - this drug also helps you sleep and relaxes the muscles. Suddenly, with a bit of better sleep, I could 'dig into' the stretching more and it started having a noticeable improvement. Slowly weaned off the strongest painkillers. Reduced the osteopath visits from weekly gradually down to every couple of months and now very rarely.

I had had to give up working as I am self-employed and it was all computer-based. So had to move to a cheaper rented home. Another turning point - filling and emptying boxes (all big movements rather than little ones like making food or reading/ typing) loosened up my muscles more. As if, at the end of a tiring day of unpacking, my body/brain knew THIS is what genuine muscle tiredness is, not that other thing that it was in a feedback loop of pain about.

Along the way, I was referred to the specialist pain service run by Camden NHS – it took 18 months of screening for suitability and waiting for Covid to ease, but I finally joined their 10-week pain management course earlier this summer. About 10 of us, via zoom in these times, talking about chronic pain and ways of dealing with it. I was a bit sceptical – after all, they started with the very clear message ‘we can’t take your pain away’ (!) but in fact has been very useful. Understanding the mechanics and chemistry of how pain works in a body/ mind was really useful in then recognising how my body was tensing up in advance of the pain – and finding ways to change thoughts, reactions and know when to reach for the various things that help, and how to set goals for very slowly building up activity levels.

Also along the way, having been referred to a muscle-skeletal team and then a rheumatologist at the local hospital (UCLH) she, brilliantly, spotted that my long standing Raynaud's and long-standing GI issues (for both of which I has seen UCLH consultants about either occasionally (Raynauds) or yearly + (GI clinic) might come together as SSc. She referred me to the Royal Free - and yes, a year later, I got a definite diagnosis of LSSC. As to the back pain, it was diagnosed as relatively mild osteoarthritis where some ribs join the spine, to which my muscles and pain receptors just simply overreact by inflaming and jamming up everything else.

So in my mind, that pain in my upper back (which I do still get every day/ night, though much, much less, and that seems most triggered by being immobile and becoming quickly very stiff in the muscles, and builds up in the night but eases with movement in the day) is linked to the LSSC. Even though the Drs say I don't have inflammation markers and that it is not connected.

Now, what with continuing the osteopath's stretches (although I no longer need to see the osteopath himself) and the muscle-re-building ones, and all the stretches on face, hands, feet, hamstrings etc etc that SRUK and the specialist nurse advise, I do 3 HOURS of 'physio' every morning, and some 10-15minute top-ups during the day. But at least it means that for most of the rest of the day I can be virtually pain-free, smiling or at least not in a foul mood with my husband! And even do a bit of work or contribute to society through volunteering. And big movement things like gardening in short bursts, going for longer walks and even a bit of cycling. As I've learned more about LSSC over the past year, I view all of this as investing in my future, by holding off the worst stiffening as long as I can. And on days when I can only fit in a shorter session to get over the night, or not at all, I can cope for a day but longer than that I definitely feel a worsening and stiffening.

So my advice:

• Stretch – work with an osteopath if you can afford it (even if for just one or two sessions to show you some movements and how to progress them at your own pace)

• Sleep – give yourself the best chance of good sleep to help your mind and body relax

• Ask about a pain management clinic/ referral where you are, to see if they run a similar course.

• Alexander Technique can help you re-learn good ways of holding and moving your body that provoke pain less.

• A specialist pain consultant, who also suffers from chronic pain, had an article in I think the Guardian around the time NICE said chronic pain sufferers shouldn’t be told to take paracetamol anymore. He said to take Boswelia and also Turmeric enhanced with Curcumin/ Black pepper. The osteopath also suggested I take magnesium citrate for muscle health and anti-spasming. Expensive but they do seem to have helped (in that when I have recently stopped them for a few weeks, I got worse again).

Sorry for the essay! But I wondered if anyone else recognised this type of pain and connection to SSC?

momo17 profile image
momo17 in reply to LadyTrundle

No that’s brilliant. All really helpful. I did wonder about some muscle relaxant medication as I am quite an anxious person n I can feel the muscles tightening when this happens. Also I have osteoarthritis too so I feel exactly the same - like my muscles are overreacting n everything else is following suit. I will check out your recommendations. I do go regularly to the osteo and physio but we’ve always just put it down to the scleroderma. Now I’m not so sure. Thank you n best wishes

LadyTrundle profile image
LadyTrundle in reply to momo17 is a link to another article about Boswelia and Turmeric that I seem to have saved for myself in the past. What I was really looking for was this:

Although I didn't do much Alexander Technique (at the start it was too painful, then moving, then lockdown) I did do enough to realise how it 'isolate' different muscles and let the tension drain out of them. So I'd be thinking 'I'm not tense" then think about that muscle on top of my shoulder and 'allowing' it to relax - and it's amazing how you realise the tension there when you feel it actually relax. The link above is to a 10-mins semi-supine relaxation that the AT teacher pointed me towards. Takes practice but is like magic. With practice I can also make it work sitting in the car or at the cinema, or even going for a walk if my neck and shoulders seize up.

momo17 profile image
momo17 in reply to LadyTrundle

Hi, thanks so much. I do notice I tense so much. I will try this technique to help relax. begin with an apology...but I cannot have a good nights knees are really very severely affected by osteoarthritis so, sleeping in the same position, on my side, then trying to turn to ease the pain from being immobile, I have to awaken to turn, but the pain is so bad that I cry then cannot sleep again, and so it continues all night long. Then, during the day, my back is in pain, as are my knees and hip which I was told has also osteoarthritis. I was taken off prednisolone and put onto an alternative, Azathioprine and this has caused nausea,vomiting and thought that the pain was enough but the side effects of this anti rheumatic drug is causing me to consider suicide.

momo17 profile image
momo17 in reply to marilynmcl

Hi Marilyn. So sorry you are feeling so low. There are times, a lot of times you feel like there is no escape from the pain. It is constant. Do you have a good support network in family and friends? It is a cruel illness and often people have little understanding of it, that’s why these forums can be helpful. You should try n speak to someone tho even if they can’t help with the actual pain, it will hopefully help you when you share how you are feeling. I don’t know what else to say that wouldn’t sound patronising as I’m sure you’ve tried to be positive but just feel beaten. I try all sorts to help with this but It’s very difficult. I hope you can find some medication that agrees with you and get some relief. Take care x

Hi Marilyn. My heart goes put to you for what you are going through. I want to echo Momo in the help that talking can give, and hope that you don’t just think that other people would get fed up. Use us! Does your hp know how you are feeling ie suicidal? Do reach out and be explicit. There may be pain-related mental health support eg ask to see a clinical psychiatrist for assessment. That’s who knew enough to pick the right drug to help me at that point as it’s not an obvious one. Thinking of you x

momo17 profile image
momo17 in reply to marilynmcl

Hello Marilyn. It was just to say thinking of you too. I hope you managed to talk with someone to let them know how bad the pain is making you feel and good luck with your health professionals in sourcing other treatments. Take care x

Bkart profile image
Bkart in reply to marilynmcl

bkart in reply to Marilynmcl

Hi Marilyn, no need to apologise for how you are feeling, although I seem to be doing it more and more these days! People on this site really understand how you are feeling and this has really helped me.

However I am concerned that you are having suicidal thoughts, I too have felt like this. Please if these thoughts become unbearable, RING YOUR GP, Speak

to someone you trust with your thoughts, RING SAMARITANS, they won’t judge, they will listen and help you. At times like this we can feel so alone but reach out and get the help you need and deserve, you are not alone.

Good luck my fellow warrior, hoping your pain improves and keep safe.

try wild lettuce extract from ebay or mt rose herbs i use it works great 10 drops under the tongue in the morning and same at night. let me know how it works for you. love julie

Hi Julie. Thanks for that. How long did you take it before noticing a difference in your pain?

30 seconds it worked right away pain went away i take it night and day 4oz ebay for 18.00 and up. good luck hope it works for you

I have been going to a Chiropractor for regular 'de-kinking' for years because of back pain, and always come away feeling taller and more supple. My daughter is always saying 'shoulders Mum' as I tense my shoulders and neck where I have osteoarthritis. During lock down I have been doing zoom Pilates classes with her - she teaches but not locally to me - so that has been a bonus. Stretching seems to be very important. I might try wild lettuce sounds interesting.

momo17 profile image
momo17 in reply to SBQ1971

Yes, I’m going to try that thanks to Julie for that suggestion n just organising a 1-1 yoga session. I did yoga for years but as the illness took hold because of pain n skin tightening I grew more n more rigid. I was quite amused as the yoga teacher said he found it interesting that I thought I wasn’t fit for an actual class as yoga is for everyone. He clearly hasn’t seen a scleroderma sufferer before with my curled hands n limited movement in every joint. Also the thought of any one activity for an hour will be a struggle!! I can but try tho. Thanks for your reply. Best wishes

marilynmcl profile image
marilynmcl in reply to momo17

My are amazing! You won't let things get you down obviously! My heart goes out to you and I hope you find this wild lettuce of help. xxx

I was diagnosed with fibromyalgia after I complained to my rheumatologist about pain, stiffness and persistent fatigue. Apparently it’s common to develop fibromyalgia if you have a chronic condition like ours. Im on amitriptyline for pain and insomnia and have found CBT and mindfulness very helpful in dealing with my symptoms also.

momo17 profile image
momo17 in reply to Midgebite21

Definitely seems like fibromyalgia could be a possibility. Just remembering I have amitriptyline so I might try it again. Thank you midgebite. I find meditation/mindfulness helps with my sleep n positivity also. Best wishes

I think I had amitriptyline but it did nothing for having to take tramadol but it does make me feel sick..the other tablets are having a tango dance in my tummy just now...have 13 to take in the morning with more in the afternoon then more in the evening. Am physically sick of them all. My daughter keeps nagging me and so does my husband...have you taken your pills mum? have to eat! Yes, it goes in my mouth then into the handy bucket! Or, it is the diahorrea which is a blessing especially as my toilet is upstairs...and as I cannot move except in slow motion.... nuff said! Am not going to go as far as suicide but boy do I wish I was no longer here and all pain was gone. I am trying to be more positive but I cannot see me getting any better, only worse. So, hey ho....just have to put up with it all. xxx

momo17 profile image
momo17 in reply to marilynmcl

Oh I know. It’s hard. I have a similar amount of pills to take and when you don’t feel they’re doing much it’s sole destroying., but….I’ve just took my first step to being more mobile today in a 1-1 yoga class and altho I felt I couldn’t do all that much I think it’s helped greatly with my mind set. He teacher was brilliants n said there is no can’t do’s here so put me a ease and I thoroughly enjoyed it. Obviously it was expensive a 1-1 but a great way to gain confidence n assess how you feel about going to an actual class. That’s great you have your husband and daughter around. It sounds like even tho they may nag, they want to be there for you. Hopefully you can let them know how you’re feeling. Take care x

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