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Scleroderma & Raynaud's UK (SRUK)

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Newbie to Scleroderma

Vicrum88 profile image
9 Replies

Hello!!

I'm a newbie and looking to make contact with people who have similar issues to my own! I'm constantly cold, I have a brown foot due to hyperpigmentation of the skin, freezing cold hands and feet 24/7 and the occasional blue nose to match! - gotta love Rauynards huh!!

Reaching out! Xx

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Vicrum88 profile image
Vicrum88
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9 Replies
MissusTee profile image
MissusTee

Hi!I’ve had scleroderma since I was 17, 52 now! I have also got 3 other autoimmune conditions. I have had severe gastric problems, joint Issues, severe raynauds, calcinosis and a lot of fatigue. Sounds as if you’re at the start of the journey?

Vicrum88 profile image
Vicrum88 in reply to MissusTee

Hi MissTee! Thank you ever so much for your message! Forgive me, but it's nice to meet someone who has 3 autoimmune diseases too! From reading your message, I feel like I've just read my own medical notes! Despite me being poorly for a few years, my diagnosis is brand new to me. I've worked for the NHS for 14 years and had never heard of Scleroderma or Myositis till my own diagnosis. I too have the calcium cluster deposits happening. Any tips on how to deal with things are most welcome! Xxx

MissusTee profile image
MissusTee in reply to Vicrum88

I don’t have any tips for calcinosis, if they stay under the skin- just leave them. I got an abscess on my hand last year, as I tripped and fell on it, and eventually a large lump popped out. Just don’t pick or trip!

Poppy221 profile image
Poppy221

So I have intermittently cold hands - much better now that I am on vasodilators for other problems. No pigmentation issues. I've got various other things wrong - pulmonary hypertension (which is why I am on vasodilators) sluggish peristalsis and acid reflux and inflamed tendons. However the medications have worked really pretty well and there is not a lot of inflamation left and the daily tablets keep my guts mostly under control- and if I am having side effects then they are the same as the symptoms but less. I am one of the ones who is doing well on medication - it can happen. Are you seeing a rheumatologist and getting help?

Vicrum88 profile image
Vicrum88 in reply to Poppy221

Hi Poppy!! Thank you so much for your reply! It certainly sounds like you've a lot going on! I was finally referred to Rheumatology back in November last year and then seen them twice in December. I've had so many tests done throughout December it's unreal! - don't get me wrong though, I'm grateful for them! I'm currently on Cocodamol, Amitryptiline and the occasional Diazepam when my muscles go into spasm in my neck. I've been given meds for my hands and feet to open the blood vessels but I'm terrified to take them. I suffer with severe headaches and I've been warned that the meds for Rauynards can give people terrible headaches so I'm trying to pluck up the courage to try them. She was reluctant to change my pain meds till all results were back so I'm hoping that when I next speak to my specialist that she'll adapt my meds for me. I've got a "rehab" app with OT and Physio on 4th Feb because my mobility is really low. How do you cope with really bad days? So far I've learned to keep warm, take painkillers and cry it out. Trying to be brave is hard sometimes xxx

Poppy221 profile image
Poppy221 in reply to Vicrum88

Keep warm, lie down, do something to distract yourself. I like reading. Depending on how well my brain is working I can sometimes read a book - I re-read quite a bit anyway. So I pick a book that makes me laugh like "A Cat Called Birmingham" by Chris Pascoe - with the really daft things the cat does. Or something that takes me away like Kate Humble writing "Thinking on My Feet" - accounts of walks she's been on both in the UK and on assignment abroad - she describes things very well. Or "Footloose on the Appalachian Trail" - written by one man about his long walk along....you guessed it. Other times I watch TV - usually re-watch when I'm brainless. Pick something where the plot isn't too hard to follow.

When not feeling too bad, I'd stand up and do some gentle exercise - like lifting a leg up, or slow knee bends. Not a good time to be saying it, but I find going to an osteopath really useful if anything is so severe as to go into spasm - and ask them for exercises. When you see the physio, ask them for exercises. I have tight shoulders and do ones where I gently tilt my head from side to side and also turn my head from side to side. Years back they did get very painful when I was doing a lot of manual work like redecorating. Stretching always helped then.

The other thing to hold in mind is "this shall pass" - or it has for me. I'm actually on a bit of a low today - though far higher than your lows. This morning I walked half a kilometer but was tired the whole way round and then the flu like aches and pains started. So after lunch I lay on the sofa with the cat and a book and alternated reading and snoozing and listening to the cat snore - I find cats snoring rather relaxing. Another relaxing thing to do is to watch a meditation video. Look on YouTube - I find some annoying, so you may need to try a few to find one that works for you. Anything that relaxes you helps. You might want to ask also for Cognitive Behavioural Therapy help - some CBT folks specialise in helping people with chronic diseases like autoimmune and diabetes. It is easy to be scared and short days and dull weather can drag you down too. I find stress makes me far more likely to have a few down days - a couple of times I've felt the flu like aches and pains come on at the end of a really annoying phone call. (Yes, I did order the goods, yes you did take my money, the fact you can't find my order doesn't mean I didn't order them. etc, etc.)

I very rarely get headaches and when I do, it's all to do with tight muscles in my neck and shoulders and I stretch, massage, apply a heat pad and it eases.

I take multi-vitamins, extra vitamin D and cod liver oil capsules. (Need to make sure that you pick a brand of cod liver oil that doesn't have vitamin A in it, if you are mixing it with multi-vitamins. With the fat soluble vitamins like A you can overdose as they build up in the system. The water soluble ones it is harder to hurt yourself with.) If you do decide to take herbal supplements check carefully about how they interact with the medications that you are taking and will be taking when you choose to. Some herbal supplements can have odd interactions - cause the other medications to be slow to absorb, or fast to absorb so you have the wrong size of dose. I think there can be other interactions too - none of them fun.

Regarding your medication - have they got you on a slowly increasing dose? When I started mycophenolate mofetil it was gradually increased and I was told that if I had problems such as headache or upset stomach to come back to them and they'd give me a different regime which increased it even more slowly. I started with 2 a day for either a week or two weeks (forget) then 3 a day for a week (or 2), evenly spaced, then 4 a day, evenly spaced, then shifted the four a day to two, two times a day. Each change would cause a flare up of side effects for about two days - but my side effects were loose stools and a few exciting gurgles.

Sanmateogirl107 profile image
Sanmateogirl107

ELECTRIC BLANKET, ask doctor about PRAZOSIN 1MG. if your in pain try (wild lettuce extract) ebay has it i take it for crest, fibro, severe headaches etc works great, heated gloves on line, try to stay in when its cold. to help you sleep crush a twig of rosemary under the tap of warm bath the smell will help you relax and sleep. good luck love julie

Vicrum88 profile image
Vicrum88 in reply to Sanmateogirl107

Hi Julie!! Thanks for replying to my post! I will certainly give some of your remedies a try! I'm all for the herbal approach! I've not heard of heated gloves before so I'll also look into that. Xxx

Shalomyy profile image
Shalomyy

Hi, sorry I do not have time to give a full response but please research Thiamine (Allithiamine research Dr. Lonsdale's research) and also Dr. Constantini. healthunlocked.com/cure-par... do not remember where I heard it but thiamine deficiency is related to Raynaud's. Stay away from or limit caffeine which is vasoconstrictor. Look up foods rich in nitrates like arugula and beets that will have vasodilation effects.

I do not recommend any vaccine for anyone. Especially any vaccine that is not FDA approved. I am a nurse. Also, stay away from pharmaceuticals if possible or as much as possible. Do as much research as you can on vitamin C, probiotics foods like natto which is full of vitamin K2 and not synthetic. nyrture.com/blog/natto-k2-b...

smile.amazon.com/gp/product... (organic vitamin c liposomal form)

Vitamin K2 is necessary to get calcium into the proper places in your body (your bones, teeth, etc).

Best doctor is God YHVH. Pray that he will heal you and if not that he will help you through it so that you will grow in understanding Him and His will.

All the best! I will write more when I have time.

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