Hi all, my symptoms started in November 22 and have rapidly progressed. I struggle with mobility I can’t walk far due to swollen feet and legs causing extremely tight skin and have very little use of my hands and fingers. Fatigue hits me occasionally and walking from one room to another is like completing a marathon . I am struggling to manage daily routines and having to rely on assistance from friends and family. My employers are being extremely considerate and have allowed me to work from home the past couple of months just completing administrative duties . As a civil servant with operational duties I am concerned about ever being able to fulfil my job role again. I have OH involvement and for the time being working from home has been agreed but I know this will not be possible long term.
I live on my own and need to work and am really worried about my future. I am due to start immune suppressants although I really do not know what this consists of yet, is it just a new medication but life will be similar to how it currently is, or will life change considerably?
I know there is no cure, but hoping I will gradually get more use out of my claw like hands and be able to go for walks again and be active. I just don’t know enough about this condition even though I am trying to read as much as I can, but it is scary and I am feeling overwhelmed and really worried about my future.
I am 52 and feel like life has stopped. I’m pretty much house bound, not able to work properly, not be my usual active self, I can’t draw or paint, do any of my hobbies, looking after myself is becoming more difficult , I’m scared.
Sorry to moan, I know there are much worse off people out there.
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Vicky_S
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hello. I liked your post reluctantly because obviously I really don’t like what you’re going through at all. Please moan away anytime. My hands are my working instruments as a professional artist and are troublesome but not classic scleroderma although to mr they feel tight, lock and were swollen for a few years. Now my worse systemic problem is my gut from mouth to bum. All I can say is that I’ve been under rheumatology for 12 years now and things can and do change. My diagnosis came when I was 48 and was initially presumed to be rheumatoid arthritis, then briefly, MS, then I was diagnosed with Sjögren’s and now scleroderma. I think overlap syndrome is probably a good summary.
Apart from severe GI involvement, Raynaud’s and sicca - it hasn’t got worse. I don’t have other organ involvement so far. I’m on an immunesuppressant called Mycophenolate and Iloprost infusions for Raynaud’s and quite a lot of other meds too.
I’m 60 and really it’s just the GI stuff that holds me back quite s lot. Scleroderma is a very heterogeneous disease ie presents in many ways. Even diffuse can sometimes remit and treatments can be extremely effective.
Best of luck to you and I hope others here can advise on the OH and work related adjustments. X
Thank you for replying it does bring some comfort hearing from someone who actually has experience of this weird condition. I believe its Mycophenolate that I am due to commence so I will have to see how this goes.
I’m sorry to read about how you are suffering, it really is such an extensive and unpleasant disease.
I hate the deterioration of use in my hands, i am now developing ulcers in my finger joints, and my raynauds can come on whilst i am sat inside the house for no reason at all. A few years ago i discovered i could draw quite well, and also learned how to carve both of which i love to do, but now unable to do anything. I feel like i have all this extra time but its wasted. I know i need to learn to take one day at a time, its very hard .
Thank you again and all the best for your journey.
To me it seems urgent that you start treatments for Raynaud’s and immune-suppressant for active disease asap. Hopefully this will make a big difference to your hands and digital ulcers. Try not to assume things which are affecting you so badly now will necessarily remain or worsen. They might - but these days targeted treatments are pretty effective and you may well get back to your creative passions once they are in your system.
Hi Vicky so sorry for your diagnosis and struggles. Your question is very difficult to answer as we are all so different. There doesn’t seem to be one simple course of progression and everybody seems to react differently to the medications. I would suggest just going along with everything OH offers you for as long as possible and try not to stress to much about ‘what ifs’ in the future. Stress is definitely not good for autoimmune disorders. I appreciate this is easier said than done but one thing I have learnt over my 20 year scleroderma journey is to deal with every day as it comes. I have heard of many people who have started immune suppressant therapy and had good results. They may never be what they once were but are much more able to function on a better level. Try and stay positive and perhaps contact citizens advice or other agencies that may be able to offer advice on benefits in case you do have to stop work in the future. By asking questions now whilst your still working may help alleviate some of the anxiety your feeling now.
Moan away, we all need to have a good rant every now and again and this disease is a 💩 fest.
thank you for replying it is good to hear from people who have experience of the condition, my family and friends are as much in the dark as me having never heard of this before.
I have been told I could apply for PIP which is something I need to look into and its a good suggestion to speak with the CAB.
I had virtually all of these problems when I developed scleroderma roughly 45 years ago. I’m now 76 and fitter than most of my friends of a similar age. I walk for miles and have a very active life. The only thing I have left of my symptoms are a slightly clawed right hand and mild Raynaud’s. I was treated with Penicillamine - starting on a very low dose and building up until my symptoms began to clear up. I never see this drug mentioned now and I don’t know why as it certainly worked for me.
Thank you for your reply, it’s good to hear there is light at the end of the tunnel, i hope it happens sooner rather than later.
I know i need to learn to be patient, i just wish this would go as quickly as it has developed but i fear there is more to the journey before i reach a turning point.
I’m so sorry to hear about what you are going through. I’m an ex OH adviser and always encouraged clients to keep diaries of how symptoms are impacting on daily living- it should help with PIP evidence and when going to appointments with consultants
Fingers x you get the correct treatment and the symptoms reduce quickly for you x
Hi Vicky,You have come to the right forum for support as we have all gone through this experience. Here you can shout, scream to your hearts consent to try & release your fears. We're excellent listeners!
So sorry, you have this awful diagnosis. I too have diffuse systemic sclerosis which was very aggressive after my diagnosis in July 2017.
It is mind blowing & frightening!
As Midgbite21 said this disease is individual,in that each case differs in severity & symptoms.
I presume you're under the care of a Rheumatology team specialising in Systemic Sclerosis.
Trust in your team & gain as much information as you can of your individual case. We've all investigated the Internet & it is very scary.
The hospital have leaflets which describe how this condition can cause issues in different areas of your body
Keep a folder for future reference.
It's handy too to keep a diary of your daily struggles e.g moving around in the house, dressing & washing yourself, physical changes to your body & how you're dealing with this situation.
So much can happen in a short time your mind can get overloaded.
When you have hospital appointments ask a good friend or family member to accompany you to jot down conversations & answers to questions you may have.
Prepare for the consultations by listing questions & fears you my have.
All this builds a picture for you & helps to digest information.
Sometimes the hospitals may have conferences on Systemic Sclerosis for patients & family. Ask if any are planned for your hospital. Taking a family member or friend helps them understand this disease & give you the support you need.
Definately contact Citizens advice & see if someone can help you on the benefits side of things sooner rather than later. A claim can take a while to process. It maybe that they send someone to your house to start the process if you're unable to visit an office.
Keep all details of your hospital letters from the hospital & medication prescribed.
The immune suppressant medication helps to control this disease.
The tight skin is another symptom of this disease. You will have your skin tested & if the disease is very progressive, the severity will show on a Roden score.
This is where your Consultant looks at 17 areas on your body with a top score of 3 for each area. 3 being the highest score. It's a good indication of how quickly your case is progressing & how the immune suppressants are working to stop the progression.
You have a arduous journey ahead. Try to keep positive & fight this disease. At times you'll feel overwhelmed & upset. Let it all out, cry if you want to.
Your emotions will come in waves, some days you'll cope better than other days. Try to take each day at a time & seek support from family & friends when needed.
I hope this reply helps a bit. Please come back to us & let us know how you're doing. We're all here for you. Xxx
Thank you, everyone on this site is very supportive and lovely, its taken me a while to post anything unsure if my symptoms warranted support as people are struggling with far worse.
There have been many tears, most from pain, but also fear.
I have a hospital appointment in a few weeks, a good friend is taking me as I can’t drive at the moment i will prepare questions and make sure my friend takes notes.
Thank you for all the advice its really helpful, very much appreciated. x
It's good you are going with a friend. Take him/her in with you as it's sometimes difficult to take it all in. Write down questions beforehand. Good luck. X
So sorry to hear how you are suffering. I think it is important you get help in some form to help you deal with the mental aspects this disease has on you. Stress is so bad for you but dealing with a diagnosis of a disease in itself can make matters worse.
Your symptoms are very similar to those I experienced when I was diagnosed 3 years ago. I have been taking mycophenolate which is an immunosuppresent plus steroids. I still suffer from stiffness in the limbs but I am much more mobile. I was 67 when I was diagnosed and still working but I decided to retire. Hopefully you will benefit from the medication as I have done and will be able to return to a more normal life.Good luck
I was diagnosed in May 2021 and was experiencing many of the symptoms you mention. My consultant kept me off work for 11 months as he said my body needed time to rest. I am prescribed Methotrexate, 25mg weekly, and seem to be tolerating it quite well. I had hoped it would be a miracle drug, and by and large it is, as my internal organs have been spared so far. Two years on my face, hands, wrists, stomach, ankles and toes are still tight and stiff, but there are some areas where my skin has softened, which is lovely. It is rather frustrating to not be able to put shoes and socks on independently, nor indeed to be as independent as I once was, but I have become accustomed to my mobility and motor function limitations and adapted as best I can. On another positive note, I have been back in work for 13 months, using a range of aids, including a powered wheelchair to try and reduce the extra pain and fatigue after physical exertion. All in all, I am in a better place than I was 2 years ago which is wonderful. I still have a regular rant about the Scleroderma sabotage...but that's okay... And don't let anyone tell you any different! I hope you see some improvement soon so that you can enjoy your interests once again. Take care, RR 🙂
Thank you so much for the response, it really means such a lot hearing about other’s experiences, especially when there a lot of similarities to mine.
Work is such a worry but i will take the advice from Midgebite and contact the CAB, im hoping if I’m unable to return to my present position that they will try to arrange a managed move, but that will come with time.
Thank you again for sharing your experience it really helps hearing from people who know more about this horrible condition. x
Dont you dare worry about moaning this disease is debilitating and unless you've got it you dont know. Try anything and everything because it is trial and error you will get there.
hi Vicky, it certainly is a shock being diagnosed with systemic scelerderma, I was diagnosed with this, plus lupus and myositis 4 years ago, when I was 66.
As many have said, I am also on mycophenolate which seems to have slowed down my progression, it takes about 3 months to become effective.
No one seems to have mentioned steroids, though I may have missed that. I found steroids amazing, my very swollen ankles and wrists went back to normal size, the fluid around my heart and lungs went ( I assume as I am not breathless). I am now tapering and on 3.5 mgs. The rheumatologist let’s me reduce at my own rate!
Good luck, I am sure things will improve, just listen to your body , and there are lots of practical ideas here.
I have limited systemic sclerosis and have lost internal organs overnight with no warning. I had to retire at 52 and found a website called BenefisandWork who helped greatly with my PIP claim. Hope this helps and agree with others, you definitely need medical intervention now 🥰
If people want this Rheumatologists often use it as a “last resort” to which by the time they get around to it it’s already late into the disease and damage.
They try to put people on these crap treatments like methotrexate and cellcept as a standard protocol and only are willing to try other things when people have already been given these other standard treatments and havnt had progress. But they already know these treatments don’t do enough and it wastes valuable time.
Plasmapheresis is relatively safe by studies and what I’ve researched. I’ve spoken to a head nurse who said he’s done it aswell and generally there’s no major complications. I’d say it is potentially the best bet besides another generic thing I’m looking into.
I feel like I have to tell people about this even though I havnt been able to get this treatment yet as it seems really promising and I’ve spoke to others who had some success suppressing further issues with the illness
can I ask, have you lost your subcutaneous fat? Fat in palms of hands, feet, painful to stand or lean on things? Lack of padding fat. Has this happened to you? And if so was it sudden or relatively fast ?
hi running blind22 yes after 4 years I feel as if I am walking on stones having quite suddenly lost the fat around my right ball of the foot. Took about 6 months to be really painful. I saw my rheumatologist last week and she recommended silicone soles, I bought a pair from Amazon and suddenly I can walk without pain. Going to order a couple more pairs for my sandals and trainers. It’s trial and error finding a pair that are comfortable. Soles Insoles worked for me. Good luck.
I had a listen to some of the presentations attached, i havent heard of this before but I am quite new to this. My consultants have discussed possible stem cell treatment if the Cyclophosphamide, hydroxychloroquine and then the mycophenalate (think thats it 🤔) is ineffective. I am currently struggling with anaemia and need to have a blood transfusion, so my blood is struggling!
Re the loss of subcutaneous fat from palms of hands and feet - no not yet, my palms are still solid, fingers still pulled so tight they are like claws…. My feet and legs are no longer swollen but they still get very tight, my ankles and wrists feel like they are being strangled every evening, my thighs and calves get very tight and my face unbearably tight sometimes pulling the skin so one eye is smaller than the other. I may not have experienced the weight loss as i am also menopausal on top of everything else 😳
I am totally fed up of all the appointments, feeling exhausted all the time and struggling to manage simple tasks, i do feel very alone even with all my families support, no one understands it …… I don’t properly understand it! Ive been off sick for quite a while and i know my employers will struggle to hold my position open as I should be operational which is absolutely not going to be possible for a long time with my claws!
Ive done it again and properly moaned and moaned and I don’t think properly answered your question….. sorry x
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