Hi - This is my first post - I was only recently diagnosed with scleroderma after what feels like an eternity of basically figuring out and chasing most of it myself. I had no medical issues at all 2 years ago and then bang - I feel like I've turned into some kind of mad hypochondriac. The frustration of waiting for test after test and just constantly being in limbo trying to get answers - the whole process has been so mentally as well as physically draining which I am finding difficult as I am usually so resilient. I think I have googled most of the Internet over the past year because it's the only way to actually find anything out. I've already given up on talking to anyone I know about it because you just get this blank look followed by what's that ? Where do you begin to even explain ? I had one aunt say 'ah, hopefully they can give you something for it' 😆I do feel quite isolated at the minute (plus I've just had gallbladder surgery so probably feeling a bit sorry for myself ) so hence I am searching for others in the same boat.
Recently diagnosed : Hi - This is my... - Scleroderma & Ray...
Recently diagnosed
Hello and welcome! You’ll find us a friendly lot. I have very briefly, met someone in the flesh who shares my condition, so this is a good place to be !
Ah, hello 😁 thank you so much !! Can I ask - you seem to have dealt with a lot of digestive issues. I have a few concerns on that front at the minute but I really don't know when I will see either my rheumatologist or gastroenterologist again - I have no definite follow up plan at the minute which concerns me. Is this a common problem ?
I do have digestive issues, which seem to be the first sign in all this. I’m mainly seen by Rheumy, 3-4 times a year ( much of that as part of their research) I haven’t seen a gastroenterologist in years. Way back when I started losing a lot of weight, I had a couple of endoscopies to check out the acid reflux but nothing since then. I haven’t really needed it: reflux is under control
Most problems have now gone south! Rheumy prescribed Rifaximin for SIBO because that’s very common in scleroderma. As to colorectal, I seem to have been on a waiting list since 2019. Rheumy have referred me again a couple of times, but nothing has happened.
If your hospital has a rheumatology helpline, it might be worth trying that: here you have to wait a few days for a callback but the nurses are extremely helpful and can sort out an appointment.
Failing that, and depending on your GP, that might be worth a try.
Any strange typing errors are due to a mobile and cold fingers
I started having digestive issues a couple of years ago before the raynauds and all the circulatory problems started 🙄 - I initially thought it was because of known gallstones - acid reflux, swallowing difficulties and pain - I ended up cutting out so many foods to keep it under control but likewise lost a lot of weight - about 4 or 5 stone. I still kept getting stomach discomfort though. I also had very low floic acid and B12. When I did get an endoscopy it was just a collection of small things that showed up - errosive gastritis, duodenitis, polyps, hiatus hernia, schatski ring - scan showed an air fluid level in the esophagus and diverticulosis in colon. I feel also it is lower down now that's giving me most grief - my system is slow stop now and I never have any appetite. Rheumatologist said yes, he thought digestive issues are due to the scleroderma but is passing it back to gastro to see what she can do ? I've only seen my rheumatologist twice - the initial appointment last May and the review last month - and that was only because I went through his secretary numerous times - he just left me in total limbo. I feel back in the same position again now to be honest. I get so frustrated- I don't know if it's just the system in general or if it's just my rheumatologist. My GP hasnt been a help either. Maybe I'm wrong but I just think I've a lot of issues going on very early on and don't feel very confident about it being managed. Thanks for the feedback and yes, I have the cold fingers with the osteoarthritis- your spelling is perfect 😁
Hi there and welcome to this small family of us with SSc. My presentation is very like Lupiknits. But I was only formally diagnosed in July last year by my own rheumatologist having previously been diagnosed further afield in 2019. Before that I was (mis)diagnosed in 2011 with sudden onset Rheumatoid Arthritis and in 2016 with Sjogren’s (seronegative - lip biopsy and sicca plus polyclonal gammopathy).
Without the internet I’d almost certainly not have known what any of this meant in terms of disease prognosis and treatments. I also discovered from the scleroderma Professor last year that I’m hypermobile and apparently this has been masking my scleroderma for a while.
I’m on Mycophenolate, Losartan and Iloprost, domperidone, eosomeprazole, Famotidine, Linaclotide, picolax and Rifaxamin plus a few others for thyroid etc. I’m in Scotland where my rheumatolgist sees or speaks to me every 3-4 months. It’s taken 4 years to get to the stage where I can contact her directly and not just at the mercy of reception or appointments system. She isn’t a scleroderma specialist, she’s the local lupus specialist - but I’m so glad she’s kept me on because she’s spread very thin with more common Lupus and RA patients here.
I had to fight hard to get under gastro - seeing them at 9am today! They kept discharging me for years and my neurologist and rheumatologist kept picking up the pieces. I’m also under colorectal waiting for a colostomy - if I don’t bail from this! I plan to ask my gastro for scope with D2 biopsies to confirm that my GI dysmotility is indeed scleroderma gut rather than Sjogren’s small fibre and autonomic. neuropathy or other as feel this might help inform our colostomy decision about safety and effectiveness. My gastro lot here seem keen to cut corners and work on assumptions rather than facts I’ve found.
It does all take years sadly. You have to be extremely proactive with all of this I’ve learnt and a having or acquiring a terrier-like disposition helps!
Good luck with getting the support you need and deserve x
Hi Pippa,Welcome to our exclusive group! One thing for sure you have all our support & can post your frustrations & worries.
This disease is so complex, no two cases are the same. It can lie dormant for years, progress slowly or all of a sudden raise its ugly head. It generally needs a trigger which can be different in us all. Mine was a flu like virus in 2017. Again the triggers vary, stress can be a factor!
I understand exactly how you felt in the beginning. The body telling you something is wrong & the mind making you feel like you're going mad!
Mine came out of the blue at the beginning. My hands turned red, puffy & serious pins & needles. Next trouble swallowing & opening my mouth. I started having strange pains in different parts of my body. Mainly in my feet, ankles, knees etc. Walking was very difficult & I was terribly breathless with no energy.
I was transformed from a healthy active person who enjoyed walking up mountains to a complete disaster.
A few of my partners family thought it was in my head as there were no real physical signs at that point.
Old Ted is right you have to be your own ambassador & push for more answers.
Don't be fobbed off!
I went to a private German Dr whilst I was in Spain. He was brilliant. So many blood tests & researched all angles. At first he put it down to the effects of the virus & hoped my body would start to slowly recover. It didn't! More blood tests showed I had the marker for Scleroderma being AHA positive.
At last I wasn't going mad! Proof there was something serious going on. He told me I needed urgent medical attention.
So, armed with the blood test results & a letter from this Dr I saw my GP. Can you imagine my horror when he remarked that he'd never heard of Scleroderma! I was referred to my local hospital as there was a specialist who dealt with this disease. After three weeks & agonising pain I hadn't heard anything! I chased with my Dr & my local hospital, without seeing me thought I wasn't an urgent case. An appointment would follow in 3/4 months time.
OMG panic!! I couldn't wait that long. I contacted BUPA as a long shot. Yes they could see me & start to review my case. I had no idea at that stage how fast my condition would progress. The worry being how much would all this cost?
Luckily for me my sister worked at a different hospital. She found a top consultant who was renown fir her work internationally in this field. Through my Dr I gained a referral. I saw her within a week & she admitted me straight away.
Luckily for me I was under a superb team. They covered every angle.
I was admitted initially for 2 weeks where they performed so many tests & investigations.
I had the extreme form of Acute Diffuse Systemic Sclerosis.
I was very aneamic. This is where they found I had a clump of cells bleeding in my stomach. Apart from extreme tiredness I was completely unaware.
I then started my journey into the unknown.
Today, seven years on I am so much better. Its been a struggle physically & mentally. Take control & push for everything you can. You know your body!
I hope you end up under a strong Rheumatology team who specialise in Scleroderma. This is SO important.
Keep us posted on your case & don't forget we're here for you. Big hugs!! Xx
Hello - thanks so much for the support- so glad you have got to where you are now. Yes, my mum died of cancer about 4 years ago now - I had changed jobs about the same time and had the most stressful year of my life - I don't give up easily so basically worked myself ill to the point I took a really bad virus, followed by shingles, then rosacea, then purpuric rash etc, etc,etc - so it began !! (I changed jobs by the way after that). I get a lot of what you are saying - I am used to being active - I am used to doing things for myself - being the fixer . I find now that I just get up for work every day tired and sore, I can't do the things I used to do in work because my fingers get stiff and sore and I just get so tired - it frustrates me. I won't be beaten though so I just get up and push myself and do it anyway 😁 - some days though are hard. I live in Northern Ireland and to be honest I don't know if that rheumatology team exists here - I've had to drive everything myself so far to even get to where I am now - it does concern me long term.
Hi Pippa,Your Dr should be able to find the nearest Consultant who deals with Scleroderma. He can refer you.
You will learn to adapt to the "new you". It does take time! I like you was so frustrated that simple thin"gs were so difficult. I was really hard on myself. I mentioned this to my Consultant who referred me to the Psychological department at the hospital. I had many sessions to help me adjust. I was able to change the mindset from "How stupid, you've dropped something again" to looking for the positive in the day. E g "Look what you've achieved" I've made a coffee & not dropped the cup! Under the right hospital team they can work wonders. My hospital even had a Hydrotherapy Pool where I could build up my lost muscle strength & ease my aching body.
Good luck with your journey! Xx
Thanks again - I think I need to get a bit more help from my GP even if I feel like a nuisance - I guess if he was doing his job well I wouldn't feel that way. There are obviously a lot of avenues out there I didn't know about and aren't being pointed out. Thanks so much again xx
Hello 😁 good to hear from you and about your experiences !!!! I am not a pushy type of person at all but have found over the past while that without starting to become that way you don't seem to get anywhere. I paid for my own private appointment initially which got me an urgent referral on the NHS or I would probably still be waiting - I just knew there was something really not right and was putting the pieces together myself by then. I tend to feel like I am being a nuisance though when I keep having to chase things and sometimes doubt myself. Medication wise I'm not taking anything other than omeprazole and nifedipine and I really had to push for that - I just get on with it to be honest. Ironically I work as a retail manager in a cold shop with a lot of fridges - im on my feet all day - they were constantly numb and sore - I had chilblains on pretty much every pressure point so badly that I struggled getting shoes on - I put up with that for over a year and just couldn't do it any more so again paid privately to get the prescription. It has made such a difference yet my GP could have given me that ?? As for my gastro - she just seems to look for cancer and if you don't have that you're OK- she doesn't seem to relate any of my symptoms to scleroderma at all - I don't think she knows a lot about it. As for my rheumatologist - i have worked out that he is head of dept and also attending 2 private practices at least 3 days, possibly 4 out of his 5 day week so my chances of decent follow up are slim - and he's def not specialised in scleroderma. I will have to bring out the terrier in me a bit more - you give me hope that perseverance pays off eventually !!! Oh, and I live in Northern Ireland by the way.
Hi Pippa,Unfortunately most Drs are out of their depth with Scleroderma. It's very frightening when you have such a rare disease & they state they haven't heard of the condition before!
You definitely need to be under a Rheumatology team experienced in Scleroderma. Don't settle for less!
Xxx
Hi Pippa, I thought I was reading my own memoir. My evidence was purely Dr Google based which wasn’t particularly well received by my Rheumatologist. They essentially allayed my concerns as the lab test Scl50 was negative. Therefore I don’t have scleroderma.
I was 43 yrs in NHS laboratory science so insisted on repeat / extended testing ….bingo…..Scl75 test was very positive for a rare version of Scleroderma.
Now on mycophenolate and symptoms have stabilised (got no worse). Just wish I had started sooner. Appointments do tend to be near yearly although the staff are amenable to phone consultations where needed.
Hello there 😁 my initial bloods just showed up the high titre ANA and complement C5 activation - no specific antibody either - my rheumatologist diagnosed it clinically because of the visual presentation - i think it was pretty obvious by the time i saw him. They just do a basic panel though as you say - I have toyed with the idea of maybe just paying to get my own extended testing done - it would make such a difference if the type could be pinpointed - but then I hear some people never show antibodies 🤷♀️- I don't get any treatment at the minute and because I have seen so many changes visually externally over the past year I always wonder what goes on internally that you can't see. On that note - how often do you get heart and lung checks ? And thanks for the info - it's really good to get chatting to people. I'm off work at the minute cos I got my gallbladder removed last week so I've actually got the time to sit and message 😂
Hi Pippa - welcome to the unique world of Scleroderma. This forum is a wonderful resource and the people on it are incredibly kind and supportive.
I was where you are a year ago…just been diagnosed after months of pokes, prods, confusion and uncertainty- getting the diagnosis was a relief in some senses. But also scary and overwhelming.
As the others have commented, you really do have to be your own advocate- you are not being a nuisance at all - you are being your own health champion. With this disease it is so important to be kind to yourself… you are dealing with a lot.
I see my rheumatologist twice a year, along with the specialist scleroderma team at Royal free. I also have lung involvement so see my respiratory doc too. I’m medicated and it seems to have slowed progression so far.
Take care of yourself and continue to lean on this amazing group for support when you need it.
Thankyou 😁 I've always been one of those go it alone kind of people - I've done so much over the past year to improve my diet and overall fitness - I've tried to stay so positive and to be proactive. Im used to being the fixer. I do hit walls at times though and to be honest feel mentally and physically drained at the minute. I've never reached out for help or support until recently - I've realised I can't go it alone on this one - it's so good to hear from other people who understand - it's been a very lonely couple of years ❤️
Hi Pippa, the scleroderma I have (now laboratory confirmed) is Scleroderma renal crisis. Scary sounding term but kidney and lung issues have resolved with mycophenolate (and other medications). I also had help with depression which wasn’t requested but NHS systems had picked up on a passing comment.
Maybe worth noting that my health issues (each autoimmune) after being a non smoker, non drinker and always athletic individual all occurred around Covid times although I had no record of having confirmed Covid illness.
Could we maybe have a form of long Covid?
Ah, i too am a non drinker and non smoker - i think i had been to the doctors about twice in the previous 10 years or so. I don't know about the long covid theory. For me the chain of events was being really run down, taking a viral infection around the end of 2021, then shingles February 2022 and then one thing after another then on. I did have covid once and i def knew i had it - but that was july of 2022 so i don't think it was the initial trigger. I sometimes maybe question the vaccinations though - you do hear of a lot of people all of a sudden having various autoimmune conditions or people who had existing conditions flaring up. Not many though with scleroderma 😆 - I have read up on scleroderma renal crisis - glad you have it under control 🙂
Good points. I was also quizzed about recent viral infections but unaware of anything obvious.
Scleroderma leaves me very stiff particularly in hands and wrists but unlike e.g. arthritis I have no pain in my joints. Thankful for some mercies.
Keep well.
My hands give me a lot of bother too - different lumps and bumps just seem to pop up on them all the time and they get very stiff and sore at - I had early osteoarthritis anyway but it just seems to have accelerated rapidly since the scleroderma. My neck and shoulder gives me a lot of grief especially at night but I actually got a physio appointment through just today so hopefully that will help with that 😄 I actually even joined the gym there recently to try and build up a bit of muscle strength. I'm only 52 so I'm not ready to give in just yet 😆
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