I have limited Systemic Schlerosis. I struggle with the cold, have severe Raynaud syndrome and have digestion issues. My skin is affected as are my joints. I also have recurrent bladder infections which are mainly managed but every now and then flare up.
I have episodes of malaise and brain fog and sometimes feel quite overwhelmed by basic tasks. This is particularly when I am cold. During these periods I suffer from headaches and my hands and joints ache and skin gets very dry, tight and itchy. I get quite anxious and don't know where to go for help and reassurance. I'm not ill enough to seek medical assistance but I feel unwell and find getting on with things challenging.
I was diagnosed during Covid and consequently feel that I didn't get the information and support that I need. I would really like to know what living with this condition is like for others.
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JustJanet59
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Hello Janet, I also have limited and also Sjogrens. My raynauds is getting more severe and on and off I get nausea and cramps out of the blue. There are more red spots on my face and some skin thickening over my eyebrows. I am 74 and thankful I am not a young woman so the skin issues don't bother me so much .
Thank you for your reply. Do you have someone who offers you support when you are having symptoms? Is there anywhere I can get advice if I don't need medication?
Hello Janet. I am attending a rheumatologist who my gp referred me to. Are you under the care of a rheumatologist. I prefer to avoid pharma drugs and I just treat the symptoms... I keep my hands warm with gloves as much as possible and I take sips of water to deal with the dry mouth. I have sjogrens which caused this . There is a facebook group for Scleroderma where you can get a lot of support and hear of others experiences.
I feel the same as you unfortunately, I feel I have just been left to it, my knowledge mainly consists of information I have sought out myself on the internet and this site, which is very useful . New symptoms arise ,I mention them to my Rheumatologist who seems to always say the aren’t related to systemic sclerosis and we will keep an eye on them. I to have recurring UTI, protein in my urine and stomach ,bowel issue that are under investigation at present, I just go to my Dr and get referred, my GPS don’t seem to understand the disease and have limited knowledge .I feel the support isn’t there and there is no services working together to help us with our symptoms.I haven’t been given advice either and don’t get support , I feel like you, quite isolated.I was diagnosed nearly 12 months ago, so not sure covid is the cause of your lack of support.I haven’t been advised of anywhere to go ,to seek out support advise other than my Rheumatologist,who told me to call the nurse team and leave a message and they may get back to me within 2 days. Not that helpful at all.
As you Rheumatologist given you anything like that ?
I believe there maybe a support group on this website.
I feel for you and wish you well and know you are not alone.
Thank you Anne. It is becoming more and more clear. I recognise that it is different for each of us and perhaps quite confusing for GPs. Onwards and upwards - hopefully
So sorry to hear that you are all struggling so much, please ask your GP's even your rheumatologist to refer you to a specialist Scleroderma clinic. Depending on where you live there is the Royal Free in London, The Royal in Bath, and others further north around Manchester I believe. Dr. Paulings has recently gone to Bristol from Bath so I think one is being set up there. Do ring the Scleroderma help line for further information if you haven't already done so and there may be a support group near you, where you can met others with the same problems. Good luck
Hi Janet I was diagnosed 13 years ago and had very good support from rheumatology until covid struck now nothing. I had digital ulcers on 5fingers and my thumbs which I have managed to clear up myself, GPs haven't a clue. I have been waiting now for 7months for an appointment with rheumatology, we are on our own, very disorientating.
Thank you Janet. My previous rheumatologist before covid she has retired now, was brilliant, she advised always wear gloves and keep the core of your body warm, I have hand warmers and a heated gilet which help. As regards digestive issues I only have lactose free milk, no caffeine, nothing spicy and definitely no alcohol. Take care.
I was diagnosed circa 30 years ago and got no info and no specialist referral. If you looked it up on the internet (only just invented) it said that you were unlikely to live more than 7 to 10 years! I was surprised at 40 I was still alive. I have made life decisions on the basis of the little I know... never married, decided not to have kids etc etc The best thing I can advise is that you join every on line group you can and then work out which you are most comfortable with and which are the most helpful. In my opinion Healthcare doesn't go as far as considering how you might 'feel', if you ask too many questions they try to make you feel stupid, my impression is the truth is they don't know and won't admit it. I'm sorry that sounds quite negative but after 30 years the truth is I only get really ill when I go to a doctor, if I stay away I remain stable 'ish.
I am in the US. Seems very few doctors go into rheumatology here. I think this is because they really don't have a clue about auto-immune diseases. Most here want to put you immediately on drugs with the most horrible side effects. I'm 72 diagnosed with crest syndrome with 3 of the symptoms. RET I've had reynauds all my life.
my impression as yours and sorry to hear but no apologies needed for sounding negative, we dont all have a positive story and I relate ton what you say. best wishes.
Hi JustJanet59, so sorry to hear you are feeling so alone and isolated. This really is a tough disease and the sad truth is the majority of doctors have no real understanding of systemic sclerosis apart from a small chapter in a medical text book they once read in medical school. I am the one and only sufferer my GP practice has ever had and I’ve been diagnosed 20 years. It’s still quite a rarity in many rheumatology departments too and therefore with few patients to care for their understanding of the condition is also limited. Also with limited patients the chance of funding for research is further curtailed. It’s a vicious circle I suppose. There are a few U.K. based scleroderma support groups on Facebook. I live in Scotland and our wee Facebook community is lovely and supportive. They sometimes have meet ups. The Scleroderma and Raynauds SRUK is great for information and helpful hints but asking on here will always get you lots of helpful advice. It’s always good to know your not totally on your own and others do understand how you are feeling. Sending hugs 🤗
I think It is also worth joining SRUK , it is not that expensive and you get a really good and informative magazine with information about ongoing research.
I have limited scleroderma and raynauds, Like the majority here, I find it so hard to get informed advice from my doctor and my rheumatology consultant changes regularly. The Rheumatology helpline staffed by nurses, is however , extremely helpful and prompt to return my calls
No one in the rheumatology dept has any expertise or expressed interest in scleroderma
Who do iask ro be referred to a specialist dept such as Bath, Bristol or the Royal Free? Is it the rheumatology dept or my GP?
JustJanet, You don’t seem to be getting the correct help from your rheumatologist. At the least you should have an annual echo and lung function tests, as well as skin tightness assessed and urine checked every few months.
You say you have severe Raynauds yet you ‘don’t need medication’. Who says? Most of us are on medication of some sort for Raynauds, which in scleroderma can lead to ulcers and gangrene. Meds such as silenafil, iloprost, nifedipine are all used to help prevent severe Raynauds leading to amputations.
’ Your skin is affected,’ again, med such as mycophenolate or methotrexate are prescribed to help reduce skin involvement and disease progression.
Vit D deficiency is very common in scleroderma and can make you tired and brain foggy, as can anaemia, iron deficiency might be present if you say you have digestion issues- have these been checked? Despite working out of doors, my Vit D was so low my bones were aching until I started taking supplements (had to have high dose on prescription to get levels normalised).
‘Digestion issues’ should also be thoroughly investigated.
I appreciate that not everyone wants to take the medication offered and others may experience side effects so come off them. However, the reason that a scleroderma diagnosis is NOT the practical death sentence that it once was, is the rapid increases in knowledge about the disease and medication over the last 20-30 years.
I am not under the Royal Free or even a scleroderma specialist, but my rheumatologist checks in with me every 8 weeks, I have bloods every 12 weeks (required as I am in mycophenolate) and I am on a gastro enterologists list so I see or speak to him every 6 months or can phone his secretary up if I need advice in between. I also have the annual echo and LFT as mentioned above.
There are official guidelines on how scleroderma should be managed and your rheumatologist should be following these.
Check out the SRUK website for further info or speak to them about a Royal Free referral.
I agree totally with Cowhide. My treatment is exactly the same. I also try to drink plenty of water to keep my kidneys, skin, blood vessels right. I take low dose amlodipine 5mg for Reynauds, Vit D ergocal RX gel caps, liquid mycophenolate. I also take Schiff’s PRObiotics (not pre) gummies (2) daily and only if needed, Pepcid Complete for acid reflux. Both are over the counter store shelved products. If you are constantly feeling anxious or sick, monitor your blood pressure. Have your doctor monitor your BUN & creatinine levels. You want to keep your kidneys well because they can affect your BP and body temperature.
I too suffer from limited cutaneous systemic sclerosis, scleroderma since 1996, from 2010 when I lost both my large intestine and colon and was not expected to survive.
Can I ask who diagnosed you with SS? What was the outcome from this diagnosis. Surely they didn’t allow you to leave with no ongoing plan in place or information. Each one of us presents differently with this condition and I once read that it is the cruelest of all the autoimmune diseases.
I was originally diagnosed in Lancashire, then moved to Yorkshire and now have a consultant in Liverpool. Since 1996 I have always had medical intervention and consider myself lucky to be a patient at a hospital which does specialise in this condition.
From what you say I really think you need to push whoever made the diagnosis for further information and a rheumatologist for your Raynauds which I also have. You don’t mention if you suffer from Sjögren’s syndrome but they can also help with this too.
I was diagnosed by a Rheumatologist and for the first year underwent a huge number of tests. I have since moved to Scotland and am hoping that I will be seen by a rheumatologist at the end of October. I am very grateful for all the responses I have had. The conclusion I have come to is that there isn't a lot of support. You are lucky if you get a good specialist and as you say it is not a kind disorder.
I think everyone has given you lots of good ideas on to the sort of support you should be getting. There is just a couple more things I woukd like to mention based on my own experience. Firstly I actually have had UCTD for nearly 20 years but my rheumatologist has said I have moved towards limited systemic sclerosis particularly with my gut problems. From what he has told me it may be your uti problems are related. I developed crippling pain nausea usual SIBO digestive problems along with urine retention and actually a prolapse and my rheumatologist believes it is all related to systemic Sclerosis. It is possible SIBO can cause uti’s because of the bacteria being in the wrong place but at the very least you should be seeing a gastroenterologist preferably with knowledge of systemic sclerosis. If you have weight loss you may need antibiotics. Of course the regular lung function and heart checks are essential as others have said. I am lucky enough to go to the Royal Free.
I do hope all the replies have helped you feel less alone.
Thank you so much for you response. Really interested in the uti link. I have had problems with my bladder for years. I will explore it with my GP too. Really useful - thank you again
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