I’m 36 and was finally diagnosed with limited systemic sclerosis in March. First noticed with raynauds symptoms and hair loss . I also had painful arms from the elbows down. Since then the pain is now in my lower legs as well. I have lost a stone in weight in 6 months and am just considered underweight for my height. I’m not hungry forcing myself to eat and can only eat small amounts. Recently I’ve been waking up with heartburn too. The rheumatologist doesn’t want me taking anti inflammatories. The pain is unbearable at times. I’ve started hydroxychloriquine but only 5 weeks ago I know it takes time to work.
I spoke to the rheumatology nurses they say these symptoms may not be related to the scleroderma (but I know they are) and to see my gp. My gp is really good and helpful but he doesn’t know enough about the condition and says my symptoms are related to the scleroderma. Where do I turn? I just feel like I’m being pushed from one to the other. Im not seeing the rheumatologist until November. Any advice would be really welcome.
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Ivy999
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Try an autoimmune elimination diet - it really helps! Its something to try while you are waiting to see specialists. All your symptoms are likely to be connected. Improve your gut health and other symptoms will likely improve too!!
Hi Ivy, Do you feel your rheumatologist has any expertise in scleroderma? Certainly most of the symptoms you describe seem to fit. The reflux is definitely an early symptom for most people. You can ask your GP to put you on something like Omeprazole for that. Where do you live? You may want to consider asking your GP to refer you to a rheumatologist who specialises in systemic sclerosis, e.g. Royal Free London, RNHRD in Bath, etc. You can fund a list of these specialists on the SRUK website. Out of interest, are you on any medication for your raynaud's? I only mention it as I tried many and several of them made my lower limbs swell up and get very painful. That particular symptom is not familiar to me in scleroderma itself so I just wondered if it ties in with any Raynaud's medication for you. Hope this helps.
Hi sosie thanks for replying I think it would be useful to see a scleroderma specialist as my rheumatologist isn’t. I’ll speak to my gp about it. Thanks for the advice.
I was taking nifedipine for the raynauds but now that is unavailable Ive been prescribed caracten but haven’t started taking it. I think that’s an interesting thought. It would be useful to know what causes what sometimes? Does medication cause other symptoms and make things worse or is it the scleroderma? It feels like a minefield sometimes. My legs aren’t swollen they visibly look ok they just ache.
I live in the East Midlands. There aren’t any specialists in my area. I can travel though. There are a few in the West Midlands but I don’t know what they’re like? Or do I ask for a referral to the royal free? It’s a bit of trek but may be worth it?
Might be worth speaking to your GP about the arm swelling, as it is listed as a rare side effect of nifedipine and felodipine. My GP tried a drug called lacidipine that worked for me without the side effects. That was after trying about seven others first! I am also on sildenafil now, which I find really effective.
There is a wonderful rheumy called Dr Erin Vermaak who is now based somewhere up in the midlands. I saw her when she worked at Bath. You could google her to find which hospital she works at now. She knows her stuff and is absolutely lovely. Unfortunately, with such a rare disease it's hard to find the expertise, but it sounds like your GP is on the ball. Good luck.
Hi I am in the East Midlands and we have a wonderful rheumatologist in Nottingham who has a thorough knowledge of scleroderma. It is Dr Lanyon and I see him at the Treatment Centre which is situated within the Queen's medical campus.
I live in the East Midlands and I go to Royal Derby Hospital Rheumatology. There are 2 Consultants within the Rheumatology Department who have specialism in connective tissue disorders. I haven’t felt totally confident about my care and my GP referred me to the Royal Free in April (even if I just go once, at least I will have a second opinion). I don’t know how long the wait will be?? I was diagnosed 3 years ago but I don’t know which type of scleroderma I have.
I didn’t have too many issues until the beginning of this year - now I have pains in my feet, general aches and pains in arms and legs plus uncomfortable face/tooth ache. I take Lansoprozole but have ‘issues’ with Methotrexate hence why I want a 2nd opinion.
I meet up with others in the EM quarterly in Birmingham - it helps me a lot to chat to them. You would be very welcome to join us.
Thank you for your message I am also under rheumatologists at RDH and like you don’t feel completely confident. I don’t think the rheumatologist I see specialises in scleroderma.
I’m sorry you’ve more recently been struggling I think a second opinion is a good idea. So many people recommend the royal free and professor denton.
It’s all a mine field isn’t it?
It would be helpful to chat to other people it’s really kind of you to offer.
Do you do Facebook? Our group is called the Birmingham Raynauds and Scleroderma Group. We also post our planned meetings on this site. We meet in the John Lewis cafe which you can get direct access to from New Street Station. I usually go by train from Burton. Last time, we met on a Sunday morning and there is obviously time to go shopping etc if you want to.
So sorry that is all no fun. I didn’t tolerate hydroxychliriquin. As soon as I got heartburn this year my docs put me prescription Prilosec to protect my esophagus and I don’t get heartburn anymore. I also am vegan and gluten free. Eliminating dairy and gluten at the very least can drastically decrease inflammation. I was just put on anti inflammatories for a knee injury and they do help my chronic pain due to inflammation but I agree they aren’t great for more then a short period of time. If your docs are just passing you back and forth try a new set of eyes and get a second opinion if you can. For me the more active I stay and the stricter I am with my diet the better I feel. Here in the states docs sometimes use methotrexate to try to put you in remission and calm your body down. I use it but don’t love it and am hoping to go off it st my check in next week good luck. I was about 36 when I was diagnosed. My biggest issues now at 46 are finger damage from Raynauds and having to not go all out all day and let me body have down time and more recovery. Hopefully some specialists can look at your symptoms and give you things that will help you. Good luck.
Thank you for your advice zivagirl. Think it’s definitely worth looking at my diet but I find it hard to make changes. I am very active I play sport and walk miles. Im possibly too active. It’s a fine line being active is good, but it seems to make the fatigue and pain worse. I just force myself to do these things. I don’t want to give in. But maybe it’s too much. Thanks for replying and good luck
I am super active also. Runner, hiker, weight trainer. I hate stopping and sitting down. I have three kids that I run around with. I had to adjust my calories but I have been vegetarian almost my whole life it really was just finding alternatives for dairy and gluten and where i live in Seattle it is so much easier then even 5 years ago. Luckily my docs encourage me to stay as active as I am and say it helps keep me healthier. I now take Nifedipine and Sildiafil for my PH and Circulation. It takes a while of trial and error to figure out hat combo of stuff works for you so keep fighting.
Do you feel like the vegan fist has made a difference for your condition? I’ve been semi-vegan (I.e taking fish and the occasional dairy) for a few months and wonder if it’s worth going all in.
Also, what kind of hand damage have you got from the scleroderma? I was diagnosed same age as you more or less and 3 yrs in right now ...
I have been vegetarian since I was a teenager so I went vegan with my daughter last summer on the advice of a pain doc. For sure the no dairy and and no gluten are huge for inflammation and all my docs across the board agree with that. I did recently add back in eggs for some dishes like during passover(everything calls for eggs) and certain baking things. but i try to stay vegan as much as i can. i rarely have dairy and gluten it has to be a super special occasion like vacation pizza. I had my first finger ulcer two years ago and it lasted 9 months this year I had one that I managed much faster and it was only 4 months. I have some permanent tissue damage from both( both my index fingers). My nails are all ridged and rounded over and I can't fully bend or straighten them with out pain. I use a lot of really thick healing balms, rechargeable hand warmers, my steering wheel heats up. seat warmers, layers, gloves, you name it I do it. I try to keep my hands as warm, and clean as I can. things like fine motor are really hard but i do them like gardening and weeding I just know that i will be sore the next day. The more you keep your hands warm and healthy the better. once the damage sets in you can't turn it back. I am trying to maintain where I am. My finger are slow I don;t have good circulation and they can;t feel as sensitively as they used to but i do almost everything I want to do just a little slower and I need to give them more breaks. I take Nifedipine and sildinifil as well as use essential oils and see a naturopath. I tell my docs I will take the least amount of meds i need to lesson side effects so it for sure is a balancing act and my doses change with the weather. I hope that helps. I am happy to share any info I can.
Hello Ivy999 sorry you are feeling so "abandoned". I went through exactly the same response from my gp when I started turning up with the same symptoms as yours. It wasn't until I'd lost about three stone and the practice nurse was alarmed and had a word with my gp who up until then had treated me as if I was a hypochondriac. I believe your symptoms are definitely related to scleroderma as this condition affects internal tissue thus causing your digestive problems. It was about 3-4 years of complaining to gp before I got to see a rheumatologist, same symptoms as yours etc. I was told to use a reflux pillow. Google it - it's a big wedge that means your upper body is at a raised angle to help prevent reflux. I find it does help - not very elegant looing though. I've been hydroxychloroquine for a few years now and I'm ticking along despite the occasional "off" day when my insides feel awful and I get a bout of aches and pains. Happy outcome is to being 3 dress sizes smaller. Eating is still a bit of a problem and I'm currently trying gluten free to see if that helps.
I was suffering from SIBO for 2 years before being diagnosed by a breath test, but I had lost loads of weight and finding it hard to eat. Possibly you could do with having a breath test too.
When I was first diagnosed with scleroderma 5 years ago I did a lot of research andvwentvto a conference bath. It was a long way to go but worth it. They advised me to ask my GP for a referral to the royal free in London which I did. I didn't have to wait too l8nf for an appointment to see prof Denton who really knows about scleroderma. I had lots of tests and we prescribed various medications which I was reluctant to take but after looking further inti what had been prescribed I still take most of them and have been relatively well. I take nefedipine for raynauds which harms really helped. It does now day corcaten nefedipine on the pack but I haven't noticed any difference when taking it. I would recommend you get a referall to a specialist as soon as possible. I l7ve in Yorkshire and it is a long way to go to l8 don but I do go once a year and see a local rheumatologist in between. He is not an expert in scleroderma but is very helpful in referring me to other specialists I need such as heart and lungs.
excuse me tumerick and yogurt with active cultures probiotics. it nails autoimmune disease. you need to go to an immune specialist. go see another doctor for advice. that is wrong. pain specialist. raynaud's is a cold weather problem amlodipine, slindelifil are two meds that can help. move to a warmer climate. go see a digestive doctor also hope that helps you. love julie
I have to disagree that Raynauds is a cold weather problem, I can be sat in a hot bath or out on a warm day, it is a circulatory issue, nothing to do with the weather.
i have to agree i am the same that is what i was told now i have it all the time when its hot and cold. is there any family history. try to find out. hugs for a better day. julie
try eating small meals like a handful of nuts, fruit, during the day, boost, ensure, are very good bone broth is excellent. chicken noodle soup. blue berry powder, blueberries, blueberry juice, sardines, add pepper to tumerick to activate it. salads are good if you have a problem swallowing solid put it in a blender and make a soup out of it. same thing. that is what i do. probiotics i no longer vomit. crest syndrome and raynaud's i feel for you. message therapy, counseling might help and family support is important. julie
bone broth, protein plus, boost, biotin for hair loss, avocados try putting fat in your diet, see N IMMUNE SPECIALIST, pain doctor, neurologist, rheumatologist, eat small meals like nuts, fruit during the day, ask about gerd medicine. its common barium test. probiotics ND TUMERICK WITH PEPPER, KILLS AUTOIMMUNE DISEASE. read about it shows a lot of promise. get a referal now do not wait get a heart, lung, pelvic scan scleroderma has a high incidence of cancer rule out damage now. julie
probiotics, tumerick with pepper, blueberries, nuts, sardines, avocados, coconut water, gatorade, promethazine for nausea, i have raynaud's too slindelafil or viagra for my hands and amolodipine, move to warmer climate is what i was told. keep your hands covered with gloves during cold weather, in the grocery store for cie cream wear gloves when you come home place a towel over the ice cream top and pry it off you will not burn your hands. also ask about hand pt. they have tricks for making life easier. grab sticks, grab squeezers for pens and toothb brush, using different textures teach your brain to remember what they feel like. hope that helps. julie
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