Scleroderma

[Nogodsnomasters]

Could anyone talk to me about this autoimmune disease if they have it or have experience with it in their family? I want to start off by saying Im not diagnosed with this illness but I am beginning to suspect I have it possibly in the mild form, i know it has varying degrees. I also want to add that I have health anxiety which my GP is aware of and I may be way off but it should also be known that my sister had Raynaud's, arthritis and developed pulmonary hypertension and passed away at the age of 31 and these can have genetic family links. Raynaud's and scleroderma are closely linked.

I'd appreciate someone talking to me about this as my anxiety is sky high and I'm not sure my GP would take me seriously.

Anyone know anything about this disease at all? I really need someone to talk to. Maybe should have put this in mental health in case I'm going insane.

@Nogodsnomasters you have my sympathies, I have Lupus. And I find Health Unlocked really good as it's full of posts and knowledge. I think there is a Scleroderma one? Anyway, it's a very populat site. There's also an autoimmune disease board on here.

Ask your GP to do bloods an refer you to Rheumatology or Immunology.

I'm so sorry about your sister. X

Thank you so much for replying. I feel silly talking to my GP as they know about my health anxiety and I'm worried I won't be taken seriously (especially in the current climate of covid) if I ring up and say "I have developed reflux, I have dry discoloured skin patches and I have waxy/shiny/tight skin on the backs of my hands and I have poor blood circulation" it sounds like unrelated things but they are all symptoms of the mild version of schlederma but it's such a rare illness apparently but so is pulmonary hypertension and my sister still got that... My husband thinks I'm fine and I just have dermatitis and acid reflux as do many of the general population! He could be right, I could be just crazy.

I'm sorry you have lupus, it must be hard to deal with.

Hi, don't feel silly, you obviously have something going on and could do with getting the ball rolling. It took years for my diagnosis. I have Raynaud's too.

Tell the GP all of that. I knew I wasn't imagining/over thinking things and felt like I had to push for referrals.

What about asking the GP to refer you to dematology? They cover so many conditions, maybe do a biopsy. I've heard it's quite rare. I find GP's aren't very knowledgeable about autoimmune conditions, so a referral could be very useful to you. Do you fancy sending a pic of your hands?

Sending you lots of strength to speak up and find answers.

Hi op,

I know a little about this disease. When did the Raynauds start? Is it a new thing for you? Do your fingers go white or blue? As far as I understand with systemic sclerosis the skin tightening is rapid and soon you can’t close fists easily. If you pinch the skin on the top of your hand can you grab a flap or is it really tight? How severe is the reflux, is good feeling stuck? Any idea what your sister died of?

iheartniles I don't actually have a diagnosis of Raynaud's so I have no idea if I have it, my sister did though and she died of pulmonary hypertension after previous diagnosis of the Raynaud's, arthritis and thyroid issues.

My skin on my hands is quite dry and when I make a fist shape the skin goes shiny/waxy looking, I can grab a very small flap of skin on the back. The skin feels thin and I have bulging green veins, like what you'd imagine an elderly person to have but I am only in my 30's. I also have two discoloured round patches of slightly thickened/dry skin on the same place of both feet (outer side just below ankle bone). The reflux only started at the beginning of this year, gaviscon helps so I've never sought any GP help or advice over it. I also now get dry/flaky scalp quite frequently the past year when I'd never had dandruff before.

Do you have this disease, if you don't mind me asking? I appreciate your reply.

loveyoutothemoon thank you for being so kind. Do you mind me asking how you managed to get your diagnosis after years? I will try to attach a picture of my hands.

loveyoutothemoon thank you for being so kind. Do you mind me asking how you managed to get your diagnosis after years? I will try to attach a picture of my hands.

You're very welcome. I know how frustrating it is an like to try and help.

Unfortunately I can't really help with your skin issues. But a GP finally referred me to rheumatology. Was back and forth with them. Saw dermatology and had a biopsy - that was inconclusive. Then was referred to Photobiology for UV tests, which finally diagnosed me.

Please at least see the doctor. If they fob you off get another GPs opinon.

I have been tested for scleroderma - it's a blood test - as I have have a few symptoms of it. I have very severe Raynauds that I've had since a young age, on and off reflux and dermatitis. But I tested negative. I don't think your GP would dismiss you if you explain how much it's playing on your mind given your sisters early passing (sympathy - my own sister died age 38).

onlyreadingneverposting8 I had no idea it was a blood test diagnosis, from what I read online I thought it was kind of a multidisciplinary decision based on symptoms (if that's the right word!). I am so sorry to hear about your sister passing so young too, it's dreadfully hard.

loveyoutoothemoonandback I will ring the GP tomorrow morning and see if I can speak to someone. I am actually due a repeat blood test this month for a different issue I was having which found that I had slightly out of range liver function in july and they just asked for it to be repeated in a few months.

@Nogodsnomasters

iheartniles I don't actually have a diagnosis of Raynaud's so I have no idea if I have it, my sister did though and she died of pulmonary hypertension after previous diagnosis of the Raynaud's, arthritis and thyroid issues.

My skin on my hands is quite dry and when I make a fist shape the skin goes shiny/waxy looking, I can grab a very small flap of skin on the back. The skin feels thin and I have bulging green veins, like what you'd imagine an elderly person to have but I am only in my 30's. I also have two discoloured round patches of slightly thickened/dry skin on the same place of both feet (outer side just below ankle bone). The reflux only started at the beginning of this year, gaviscon helps so I've never sought any GP help or advice over it. I also now get dry/flaky scalp quite frequently the past year when I'd never had dandruff before.

Do you have this disease, if you don't mind me asking? I appreciate your reply.

No but I know people who do have it. Do your fingers go white or blue in the cold? Have they been like that since you were a teen or is it a new development?

Hi op i have Scleroderma.You must have Raynauds to be diagnosed with Scleroderma, its a very important part of the diagnostic process. Yes the skin on the hands needs to be tight, but you should also have swollen, puffy sausage fingers, ridged nails and bent twisted fingers.Severe reflux and trouble swallowing is also part of the diagnostic process, however as previous posters have said the vital element is a blood test, you must have ANA markers and most importantly for Sclero anti centrometer markers.
I would ask your GP for a blood test, say you think you may have autimmune issues, that way you can cover all your bases. Good luck.

redannie118 thank you so much for replying, I am sorry you have this, do you mind me asking how your diagnosis came about?

I don't know if I have Raynaud's, my finger tips do not go blue nor white the way my sister's did, however my whole palm side of my hands (including fingers) go red with white blotches, like as if you can see the blood underneath. My heels and toe pads can go white though. I definitely do not have swelling in my fingers. I know that some people can have milder versions depending on the immune response and if I do have it I'd believe it to be mild.

I don’t think you have it op but you should see your GP. If any doubts they’ll send you on to a rheumatologist. There are quite a few different antibodies expressed in scleroderma, I wouldn’t have a blind ANA & ENA test but get a rheum to check you over and they can decide if bloods necessary. But it doesn’t sound like you have it to be honest. The systemic sub type is really very rapid onset, with skin puffing and tightening within months of developing Raynauds, without the classic ‘blue phase’ I’m not even sure you have Raynauds, maybe just cold intolerance.

iheartniles I believe if I do have it I would certainly have the mild and slow onset version and possibly not even the systemic version? To be honest I don't know a great deal about it. The symptoms that I've described have all appeared within the last 12-24 months at the latest. I am speaking to the GP surgery today to organise my repeat blood test for out of normal range liver function but I really am in two minds whether to ask to speak to a GP themselves and request a further lab test on the blood I'll already be giving for ANA, I don't want to waste anyone's time or feel stupid.

My health anxiety really is woeful to the point I've had my son at the GP when a toddler convinced he had leukemia as he was such a sick and pale child, we were referred to paediatrics hospital and it was absolutely nothing. I've had counselling and CBT for this twice over the years, once before I became a mother and once during pregnancy with the maternity counsellor.

I was diagnosed funnily enough 5 years ago when i went to the doctor because i though i was going through early menopause! I was getting hot flashes and awful joint pain. GP did bloods and my inflamation markers were through the roof. Was sent asan emergency app to rhuemy who diagnosed. I was very lucky- i had all the markers on the check list and was very easy to diagnose.
As you say it can take 2 forms, limited and diffuse but even the milder limitied version is systemic( in fact its called Systemic sclerosis) I have limited and still have lung and digestive issues.
My sister has awful health anxiety and she constantly searches for a illness she may have, she says its like shes trying to justify worrying so much and put her mind to rest, however once it gets to the point its ruining your quality of life its an illness in its own right and more than worthy of treatment.
Please contact your gp. Get some bloods done to make sure everything is ok, then ask about some therapy or CBT to help with your health anxiety. Best of luck.

redannie118 that is quite a quick and easy diagnosis as you say for yourself, so you weren't aware you had Raynaud's or anything at that point when you went to GP but you did actually have it? That's my main worry, that I have these things without knowing about them.

I understand how your sister feels, it's definitely like if you find something it's worth the worry because you've "saved" yourself by catching it early but on the other hand the worrying is ruining your life.

@Nogodsnomasters i had Raynauds my whole life, but as its as common as hayfever i honestly didnt think it was anything to worry about.It did cause me issues, i got awful sores on my fingers and toes in the winter. I had always had a bad back, and when i got joint pains in my hands and my fingers started to curl i assumed it was just arthritis( my mum has it really badly) i had awful reflux as well, but as they all seem so random i never for one moment thought they were all connected.
My point is i never knew about Scleroderma before i was diagnosed, but i was very aware of all the day-to-day symptoms. Even if you do have Raynauds as i say its so common it really doesnt mean you have Scleroderma.Heres a good way to look at diagnosis. Limited Scleroderma is also known as CREST. Crest stands for each individual symptom that you must have to be diagnosed
C-Calcinosis. Calcium deposits under the skin causing painful lumps
R-Raynauds
E-esophogeal dismotility- severe reflux and swollowing difficulty
S-Sclerodactyly- bending of the fingers
T-Telangiectasia- small red spots/spider like veins on skin.
As well as these you need the bloods i mentioned before.
When i was diagnosed i was really ill. I will have issues my whole life, but as its a slow moving disease, its not urgent to be diagnosed quickly. If you have the diffuse( worse) version you would know very quickly as you would be very very ill indeed
I know you mentioned your sister having PT, but Sclero is not genetic or passed through families.
I hope this puts your mind at rest.

redannie118 thank you so much for the clarification of the CREST, my reflux is not severe, it's controlled with gaviscon and I don't have trouble swallowing. I do have red spots and spider veins on my legs, those have also just started in the last year along with the reflux. I do not have any lumps under the skin though, the only joint pain I have is sometimes ankles and knees, mildly. Does this sound completely unlikely then for me?

Hi @Nogodsnomasters, I found your thread when I was searching for information on Scleroderma as I'm in a similar position to you, I hope you don't mind me joining in to get some advice here, maybe we can go through this together.

I was googling today trying to figure out what these weird small white hard lumps were on my hands and fingers, it kept coming up with Milia but one article said calcinosis cutis which led me to read about Scleroderma.

I have Reynauds since I was 20, Reflux (currently under ENT), stiffness and swelling in right hand and a spidery rash on my chest and an almost love bite type one on my neck.

I am also severely deficient in Vitamin D, have joint pain and fatigue, digestive problems and an almost constant pain through my right back/shoulder. I generally don't feel well.

I'm 44 and put it down to peri meno and even tried HRT which gave me severe migraines, I've had physio and they suggested Fibromyalgia.

I was reluctant to call the GP as it's a rare condition, I even looked into getting the ANA test online to avoid looking like a wally but I bit the bullet and rang today. I've got a telephone appointment on Wednesday so I'm trying to research as much as I can.

@Nogodsnomasters did you request a test from your GP?
@Redannie118 my white lumps are like little scars does that sound right?

Thank you all for the information on the thread it's brilliant

@Nogodsnomasters- with the absence of pain in hands( which is a biggie) i would say yes, it does sound unlikely
@bettyshotspot mine are more raised than scar like,but as they are on your fingers/hands its possible. You are displaying a lot of symptoms and i would certainly ask for an ANA test. Sclero is very similar to many other autoimmune diseases( esp Lupus) so its really important you follow up with a good rhuematologist.

bettyshotpot absolutely join in! I'm sorry you are suffering and I'm glad you had the courage to contact your GP, I chickened out when I rang about my repeat bloods and just booked them with the receptionist without asking to speak to GP 🙄 I also looked up private blood test like you to avoid looking like a Wally but they're £112 here and I just can't afford to spend that at the minute.

Redannie118 the only hand pain I have is stinging and burning from the dry skin itself, no internal hand pain if that makes sense. Thank you so much for your advice and opinion, I truly appreciate it.