I was diagnosed with late onset Raynaud and Scleroderma in November 2018.
This was as a result of a blood test taken by my GP in June when I was unwell and she couldn’t find the cause so literally ticked every box and the results came back that I had slightly raised levels of Centromere antibody. I was referred and finally saw the consultant in November. Apparently I have abnormal nail fold capillaries too.
I have had mild Raynaud’s for a long time but not bad enough to do anything about it. However on reading I have discovered that Losartan is prescribed for the symptoms and I have been on that for years for blood pressure. I do not seem to have any of the skin condition or ulcers etc. However for years I have had a cough and been breathless which I blamed on being overweight until I realised that scleroderma could affect the lungs. Also my yoga teacher had said that she didn’t think my breathing was right. Tests have shown that I have very mild fibrosis of the lungs and I am being referred to see a specialist. I am also very tired most of the time but put this down to the personal family stresses. My joints and lower back ache and I have very little strength in my thighs which has been the situation for years.
Having read posts on this site I find the whole thing confusing and scary as a lot of people seem to suffer quite badly from the various symptoms. I have a daughter with complex mental health issues which causes me a lot of stress and my 90 yr old dad is a in a care home with dementia and my 88yr old mum has bowel cancer and a stoma bag but lives independently with support from my brother and myself. I am 65 and feel that I can’t afford to be ill!! I try to look after myself and do yoga and disco and meet with my excellent and supportive friends. I need to lose weight but find it incredibly difficult as one of my pleasures in life is eating out with friends (worry about difficulty in swallowing too as I often choke on food - not badly). I have never been able to lose weight and of course exercise is not pleasurable for all sorts of reasons. I am married and my husband and I enjoy eating out and when family circumstances allow going on nice holidays which help keep both of us sane. I don’t know how he will cope if I am ill as I have always been the strong one and the carer.
I suppose I am just looking for some reassurance. My consultant seems very efficient and approachable and has referred me for numerous tests and I will be seeing him on 21st May for my third appointment when I will be going with a list of questions. I realise I am lucky that I have only just been diagnosed and I do not suffer from as many symptoms as many others but I just needed the chance to offload as I worry about the progression of the disease. Also, is there a diet that is more beneficial to sufferers? I think I need to tackle my lifestyle which is not going to be easy especially perhaps ditching the whisky nightcap which helps me to get to sleep. Sorry this is a bit rambling. I am new to all this!
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Supermum54
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Unfortunately systemic scleroderma leaves new area unscathed. Your breathing is concerning you probably should get a right sided heart catherization to rule out pulmonary artery hypertension. I know you mentioned some fibrosis interchanged interstitial lung disease. I right now require oxygen 24/7. Yes it’s difficult at times but early intervention predicts the heart. Good luck I think you a few more tests before a plan of care is done. Debbie
Hi Thanks for your reply. I think I am very much in the early stages with the tests etc. My consultant reacted very quickly when a couple of weeks after I contacted him to say I was worried about my breathing as at the first appointment I was a bit shocked to hear the diagnosis. He immediately sent me off for tests. I am not terribly patient and like to know what I am dealing with but I think it’s a slow process getting everything checked etc. I am in the UK so it’s often very slow to get into the system but once in it’s usually not too bad. Not sure if the referral to the lung consultant will be treated as a new referral. I will just have to be patient but it does seem that I have been caught early as my heart is strong apparently.
I have had Raynauds for most of my life and feel fortunate that it didn't become scleroderma till my early 70s. One symptom you mention, the cough. I had an irritating cough for several years and eventually the rheumatologist said he though it was reflux. he prescribed Lansoprazole and the cough has more or less disappeared, so make sure you flag it up.
Hi Bearman. Thanks for your reply. I have been on Lansoprazole since February and although it may be helping slightly I still have quite a troublesome cough. I have asthma too which doesn’t help. I think my next visit to the consultant on 21st May will be more informative as I have had more time to try and work out what might be linked and what might not and to ask the right questions.
Hi, I know it isn't easy to lose weight so I would say give yourself reachable targets, substitute foods that will be healthier for you and when you're eating out, look at the healthy options, go for chicken, fish, salads etc. Sweet stuff is my downfall so I try and swap things for fresh fruit. Drink plenty of water too, believe it or not, we're not always hungry as we think, just dehydrated. Aim for 1-2lbs a week loss and don't beat yourself up if you don't do it just keep on. When you've lost your first half stone, you'll feel pleased and so much better. Get together with friends and family and have a weigh-in day, pay a couple of pounds and treat yourself after you've lost your first stone! Give it a go and I wish you love and luck for the future x
Hi Marie. Thanks for your reply and comments. One of my daughter’s mental health conditions is an eating disorder which reappears quite regularly when other things are getting out of control. It’s been in our lives for 15 years. As a result we cannot talk about diets and weight loss at all. I won’t go into the details but living with someone with this condition makes life extremely difficult and over the years I have comfort eaten. I don’t want to follow a specific diet as I don’t think they work long term. I just need to get my head around trying to eat less and not snack and obviously make healthier choices. I wondered if anyone had found that certain foods helped with the condition rather than diets as such. I am sure the reply will be healthy foods!
I did the South Beach Diet years ago with my dad because it was recommended for him since he had heart issues and it's a way to lose weight without exercising. I tested it by only walking 10 min to work and home for lunch while I did it and I lost 60 lbs in over a year. It also improved my health a lot. That was over 10 years ago and I still use it as a guideline, but I'm in a bad flare up now of fibromyalgia or something autoimmune. I have 3 markers, scleroderma, ANA and thyroid. But it's an easy way to lose weight atba healthy pace without exercising.
Hi Julie. Thanks for your reply and helpful comments. I don’t really want to follow a diet as such, rather just make healthier choices. I know what to do, it’s just making my mind do it!! As stated in a comment to another reply my daughter has had an eating disorder for 15 years and that has affected us all as a family and we do not talk about dieting or body shape or sizes in our family. That’s not because we are avoiding the subject but because it can trigger reactions that we don’t want. I know that I am a comfort eater and need to address that. 😁
That is so important for your daughter. I think we place far too much emphasis on food and exercise these days and the stress and guilt of it contributes to all of these physical issues as much or more than the actual food. I honestly believe we should be able to eat anything we want, in appropriate amounts, so I have been stubbornly refusing to try any other diet suggestions myself until now because I'm suffering enough physically to try anything. But I'm still stubbornly seeking a way to heal and get back to eating how I like and telling everyone there's a better way! We'll see if it works! 😊❤️❤️❤️
You sound like you have a lot to contend with and trying to tackle food at the same time always seems almost cruel! I have a bit the same attitude as you I think. Let me know if you find the solution! 😀
It totally does! Last night and today I couldn't even have a tea or coffee because I couldn't hold a mug. That and giving up the few food items I really love bum me out more than some of the physical limitations. I'll keep you posted! 😊❤️❤️❤️
Oh dear that sounds awful. I am so lucky at the moment that other than a cough and the mild fibrosis I don’t have other symptoms but I will be asking my consultant when I go quite a lot of questions! I have read that spicy food isn’t good for reflux but I would hate to have to give that up! Keep me updated. Lynne
Hi Supermum from New Zealand, so pleased you are being well looked after by the medical people. I am 67, diagnosed 5 years ago. I know its hard, as you say 'always been the strong one and the carer', now is the time to make yourself a priority!!!!! Your family will carry on, perhaps not in a direction that you would like, (we have a son with mental health problems and we have had to 'let go' to quite a degree ). Let others take the stress. Yes, eating out is problematic, but you sound as if you are the sort of person that will work around the problem. Best wishes.
Thanks for commenting on my post. It’s a bit more complicated than just letting go although believe me we have done that to a great extent, compared to three years ago when my daughter was in A and E 200 times in a year, but it’s the constant mental strain of when the next phone call will come from the services but it has got easier with my daughter but the underlying risks are with us every day. Also my mum needs support to live independently. She has dealt with a lot over the last year, bowel surgery and now a stoma bag, husband taken into care with dementia so suddenly on her own after 67 years of marriage. . My brother and I share the care which is not too onerous but requires a 45 minute journey for me which is the wearing bit. My brother lives nearer and deals with emergency stoma bag visits but he had a stroke a few years ago and is not as healthy as he should be! My other daughter is busy building a free lance career after getting married a couple of years ago and she has had to deal with a mentally ill older sister for a long time. She is visually impaired so can’t drive which means she can’t help out with mum which she would willingly do. I am also very conscious that when we are gone she will be the one dealing with elder sister.
All this has nothing to do with scleroderma! Sorry. I do go on a quite a few holidays but my phone never leaves my side but I also do private yoga which I love and disco which I have done for five years although that’s more difficult because of my breathlessness. So I am trying to look after myself! I also have regular massages and facials so I am very lucky that I have all these opportunities. I think I am still trying to come to terms with the scleroderma diagnosis. Take care yourself.
By the way Heather in NZ we visited NZ for my 60th birthday and travelled round in a camper van. We loved it and I did the skywalk round the Auckland Tower for charity and loved that too!
I disagree, it has everything to do with Scleroderma, you are juggling Scleroderma as well as your families needs, You indeed are a Supermum. Again do take care of yourself.
So pleased you enjoyed your visit to New Zealand, we are very lucky to live in such a beautiful place.
Keep us updated on how you are going. Best wishes Heather
ok go to a immune specialist in your area ask your doctor for a referal now, raynaud's is a cold weather problem move to warmer climate when its cold outside wear gloves protect hans and feet. do not get cut your hands can get infected gangrene. rheumatologist also. dietician would help a lot. i have ethromyalgia its worse than raynaud's i can not stick my hands into water with out screaming. coounseling is great for support, meditation, art therapy. YOUR IMMUNE SPECIALIST DO A CT OF PELVIS, CHEST, LUNGS FOR DAMAGE. DO IT NOW! speak up be your own advocate. hope this helps love julie
Thanks for your advice. I am under a good specialist who is already referring me for more tests. Moving to a warmer climate is not an option for me because of family commitments but my Raynauds is not too bad at the moment.
is about Ankylosing spondylitis (AS) there are some good ideas to prepare yourself for your specialsit visit on the 21st........ but I bet you done a few listed already Best wishes Heather
Thanks for that Heather. I will certainly use it as a guideline for my list! I have a lot of questions but one of the areas of concern are my lower back and joints particularly on my left leg so that info will certainly be useful in preparing for the appointment. Thanks 👍
My situation is similar to yours in some ways. I am 63 and was diagnosed with scleroderma 5 years ago. I had problems with breathing, have nearly lung funstion tests and lung capacity had declined. I do yoga twice a week which I enjoy and think is good for me.
I have seen numerous consultants. None of them ever mentioned my weight, which I find surprising as I was bordering on being in the obese category according to my BMI.
Last year I decided to do something do out it and have lost 2 stone. I wasn't easy but I feel so much better with my breathing and generally.
We also enjoy eating out and holidays, especially cruising, where temptation is everywhere.
I was hard to resist all the delicious puddings so I would just have a small taste instead of eating the lot. When the bread basket came round I didn't have any, knowing I would soon be tucking into the meal. I tended to choose fish I stead of meat and asked for extra vegetables, no potatoes.
At home I ate a lot of home made soup which is filling, nutritious and healthy.
I didn't buy any specific diet food. I cut down on portion size, didn't deny myself anything I fancied but just had a little taste. Some days I would cut out one meal completely, either breakfast or lunch, it was hard but I got tbrough it knowing I would be eating a nice meal later.
When we eat out my husband and I will often share one meal, maybe with an extra side order, and always share pudding.
I have lost 2 stone and do far kept it off. We are going on another cruise next week and won't deny myself a few treats but will be mindful of what I choose to eat.
I am sure you would feel so much better if you could manage to lose some weight. Try replacing one meal a day eith homemade soup or even a packet soup if you don't have time to make it. I usually make a lot at once and freeze it.
I always have some of Ainsley Harriot cup a soups in the cupboard. It I feel hungry it fills me up so I am not tempted to snack on biscuits.
Just take it in small steps and don't beat yourself up if you have a bad day. Just get back on track the next day. Once the weight starts to come off it will spur you on to stick to healthy eating.
Thanks for all your helpful advice. That’s the way I need to do it, rather than following a specific diet. I have started trying to make a few changes particularly smaller portions but my daughter is having a particularly bad time at the moment so I don’t have the headspace to do much more. My husband and I went out twice last week with friends, a rare occurrence for us to be out twice and I made health choices and skipped dessert at both meals but I didn’t enjoy the meal as much as I would have if I had had what I really wanted! Skipping dessert wasn’t too much of a problem. It’s a case of re-educating my pallet 😋
Well done skipping desert. Believe me once the pounds start coming offend you start to feel healthier it is a small price to pay. I know it difficult When you are worrying about others. My daughter had severe port natal depression and wad admitted to a mental health unit. Not long after I was diagnosed with s letodsrma. I'm not blaming her but I do wonder if the stress brought it on.
In the past when I try to cut down I don’t lose any weight which makes me lack motivation to continue long enough for it to work! My daughter has been ill for nearly fifteen years and I do wonder if the strain is in part to blame. As I mentioned in an earlier post my elderly parents also need care! I do yoga on a one to open basis which really helps as well as a disco class which I struggle with physically but I have made great friends and have a laugh! Must dash as it’s time for yoga! Sorry to hear about your daughter. There was someone on local radio talking about post natal depression this morning. It sounds awful. Luckily I don’t have depression. Thank goodness!
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Best wishes Heather
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