Scleroderma & Raynaud's UK (SRUK)

Meh

Meh

I’m a very positive, optimistic person! I have a lot of patience and understanding. I never moan, I never complain, and I take everything in my stride, but I’m really struggling now :(

I know it’s hard to believe as they say this disease is slow progressing, but I genuinely fell ill over night, I watched a rash develop all over my body which left me with permanent Livedo Reticular, skin thickening, Raynauds and bowel problems the very next morning. Since then, my symptoms and new symptoms have worsened significantly. This was only 5 months ago!

I had three rheumatology appointments in the space of 3 months, I was prescribed a high dose of steroids and hydroxy but neither made one tiny bit of difference at my follow up, but visual signs and symptoms had actually worsened - as noted by my rheumatologist.

That’s when I was referred to Dr John Pauling, a scleroderma specialist. However, that was on the 9th January. There was a delay in my appointment with Dr Pauling, because of funding issues due to the fact I’m welsh! I finally have an appointment with him on the 23rd April.

Between 9th January and 23rd April, I have had no follow up or check up, I haven’t even had blood drawn. Considering I was seeing my rheumy every 4 weeks and having bloods done weekly because of the severity of my condition, I’m struggling to understand why I have now just been left.......

I went to my GP on Monday about my shoulder - he asked me what weight do I use at the gym? I accused him of taking the piss right ?! He said he only asks because the damage in my shoulder is what he would expect to see in a body builder !! I’ve literally ripped my trapezius into two!!! I do not recall doing this, just a slow progressing amount of pain over the course of two weeks, until it was so severe I could not get out of bed.

He also prescribed me Laxido, as I have suffered chronic constipation for 5 months now. Laxatives are having no effect whatsoever! It feels like my whole gut is shredded and inflamed, I’m in so much pain. I look 9 months pregnant and in severe pain. I’ve lost so much weight and I feel weak, I’ve been nauseous and vomiting bile for two weeks now, although I have a full stomach. I also had fluid around my right ventricle heart valve that was proven by an ultrasound, but nothing has been followed up?

I’ve just this evening come out in the most horrendous rash all over my body! For the first time in 5 months, I’m really suffering :(

Doctors tomorrow, I hope I can have a colonoscopy ?

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You should look at your diet to see if anything could be triggering your symptoms. Diet plays a big role in autoimmunity. Look at websites such as Amy Myers, paleomom, josh axe, mark hymen. I would cut gluten +/- dairy out as soon as you can. Definitely gluten. We have done this for our son who has an autoimmune disease and seen really good results. Your doctor most likely has no experience of how powerful diet can be. Please look into it and consider it.

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Hello JazPont, I am so sorry you are experiencing such pain, you did the right thing on coming on here to talk about it. I know I am not beside you holding your hand, nor can I give you a hug, but know that I am thinking of you. I hope your visit to the doctors goes well and that they can offer you something that will go towards making you feel better than you do at the moment, sending you hugs, x

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Really feeling for you. You’re getting there but it’s so frustrating that it’s taking so long. You’ve been passed on to a doctor who should be able to help you more than anyone else.

Your rash reminds me of when I started with chronic pancreatitis. I’m not suggesting that’s something you have but it was a sign that my body was in distress. One I started taking enzymes, the rash went away. Antihistamines didn’t help me but they are worth a try?

Really hoping you get some more answers and treatment that helps you soon c

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Hi Jaz

I'm appalled how you've been left waiting - just really pleased you have that appt with Dr Pauling booked.

Hope tomorrow's Drs appt is positive and he's proactive in helping your symptoms. You've been so patient and reasonable. Whether he can help or not he should have been seeing you regularly whilst waiting for you to see Dr Pauling - same for the rheumatologist that discharged you.

Sending hugs and letting you know I'm here for you x

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Praise Jesus for bringing you a doctor who gives you answers and a possible cause for your condition, I pray for you. No body deserves to suffer what you've been going through all these months, thank you for being strong. That takes tons of courage, I will keep praying for your end of all this to come soon and you can get on with your life. Your much to young in having this in your life, you are a person that is no greater or lessor than anyone else. This world's way of thinking is trashed, putting people in a category is childish

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Hi. Can you not get your Dr to push through your appointment as a matter of urgency, waiting till April 23rd is too long in my book. Or ring the hospital yourself and ask an emergency consultant to fit you in. You look extremely sore, try some baby camomile lotion. Wishing you all the best x

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Hi, Jaz I had the exact rash about two months ago all over my body. It is very painful, itchy. Mine was caused by a lung test I had. I had the contrast dye and found I was allergic to the iodine in it. I too had to have a high dose of steriods to get rid of it.

We are all struggling with this illness and all in different ways. I understand how strong you are. I am the same I will only go to the doctors if I have too. So take care.

I have noticed at our doctor's surgery the appointments are getting so long away. It gets me because you need the doctor asap not the end of next month. I could not get to see a doctor and was told to go to the chemist. Thankfully the chemist is in the medical centre and he had to write a referral for me to see a doctor urgently. The medical centres are getting so big with thousands of patients that the doctor and patient. When they knew you as gone out of the window.

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Aww Jazpont I hope u get sorted and start feeling a bit better soon, sending hugs xx

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Hi! I've been told that sometimes the disease can start really aggressively and then it starts to slow down with age. If I'm honest I think that's been the case with me (and I hope it will be for you). I had my diagnosis in Oct 2016, and then overnight i had problems with my kidneys, heart and lungs in March 2017. My skin was tight and dry, my muscles wasted away and I lost a VERY large amount of weight. But recently, my now my skin is softer (although quite patchy in colour) and I don't feel as weak so there's always hope, plus I managed to regain some kidney function.

I can't claim to be optimistic like you, I struggle to cope with being so weak I rely on help from my parents and my partner, but I do know that things tend to get better once you've got a good doctor on your side. So even though things suck right now, they will get better.

I've had the daily vomitting thing- it was like a clear saliva/bile thing for me, never food and always in the morning- mines caused by weak throat muscles. Basically my saliva builds up because I can't swallow it efficiently and then it has to come out. The gagging can cause bile as well. Ive been taking lansoprazole lately and thats really helped for me. The fluid around the heart sounds scarier than it is and if it's genuine cause for concern it'll be investigated, I've had that too and the guy doing the test said it wasn't anything to worry myself over. Weight loss can be balanced with calorie drinks like fortisip, a dietician can prescribe them but it seems like you're struggling to see the right teams...

Sorry this got a bit long. I hope to hear a happier update soon :)

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Hey hun, I'm so sorry this is happening to you.. I know how scary it all is.. I hope you get the answers you need to treat this.. stay strong .. sending love and hugs x

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A dozen doctors and no relief. It’s sickening..... 🤨.

A colonoscopy won’t do any good sweetie. Unless you have blood etc in your stool.

I wish you had a TCM practitioner near you. To try a different medical discipline.

I’m sorry your suffering so. ☹️

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JazPont,

My heart was breaking when I read your post... It so unfair on you ... I was diagnosed with Crest in January this year, told they would give me a leaflet (Which didn't exist) and told to come back in June ! Since then I have had almost every test in the book and have found my Liver is in dire straights and I have extensive neuropathy , I can't feel my toes and have constant tingling in my hands ... I have lost a stone and a half in 3 weeks.. Does anyone else suffer from nerve damage what can be done about that ?...

Its sad to read so many people suffering who don't deserve it..

I have just this weekend started a gluten free diet to see if that helps ?

Wishing everyone a miraculous recovery xx

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Jazz you are an amazingly brave young woman and l am so angry that your treatment options have been delayed because of politics. Do try to get an earlier appointment now you are funded. Dr. Pauling has a great insight in to Scleroderma so you should be in good hands finally.

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