Panic at diagnosis of Scleroderma!

On Tuesday morning I had never heard of this condition. My Rheumatolgy appointment that morning put paid to that! By 12 pm that day I was a person with Scleroderma and I have spent the days since then in a state of utter panic. It's the unknown I fear. I've been trying to get to speak to someone at the hospital to answer questions that have concerned me since then, such as as they still checking for the type, what are they sure of so far. I'm awaiting an ultrasound of my heart and some sort of breath test?? I'm so terrified of my mouth becoming smaller or of my lungs and heart being involved. When I look at other symptoms I have had over some time, such as difficulty swallowing and weight loss, it all fits into place now. The reason I was referred was because I had a particularly nasty, chronic infection on my finger tip which needed debrided and is now healing well. Raynauds was, as I had suspected, diagnosed but my doctor suspected something worse was at play than only that, as I had been having raised levels in blood tests. I love walking, particularly hill walking and have always found I get a bit breathless when going uphill and am so scared now that this is the reason and not just normal breathlessness. I'm sorry this has been a bit muddled but this is how my head is feeling at the moment. It doesn't help that I have had a flu bug for over a week, to boot.

26 Replies

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  • Don't panic. You have already had the symptoms. Now they are going to be treated. That is what you needed.

  • Thank you zenabb.

  • I was diagnosed 2 years ago, in a similar way to you. I had never heard of it either. The scleroderma society have a helpline you can phone and the rsa is very good too. There is a pack you can get sent which may answer any questions you may have. You are not alone with sclero, there are lots of people out there with the disease.

    Everyone has differing symtoms and depending on the type of sclero you have, the treatments may differ too.

    Do not fear it, you will get help and the tests are are simple and not painful, they help the doctor with which treatment they will use for you xx

  • Thank you Lorraine. I've called the helpline and am getting stuff sent. I've also been online and looked at the recognised sites. This forum is great. I've spent a lot of time looking through posts. Think I just have to get my head around it...and then be more positive : )

  • hi, sweetie try not to panic.i too have scleradoma, its called crest. i have tumouc clarification in all my body. i have white chalking stuff comes from my fingers, they get infected. my next step if this doesn't dry up, i have to have tips of fingers off. so yes this is a scarery decease, but if we stress out the drs. say it gets worse yours doesn't sound to bad yet. i don't have the raysnaund. do you have chronic pain. i have so many calium lumps in my legs, hands its everywhere. i suffer so much with pain. all we can do is to pray to our lord to help us. if you need to talk please feel free to talk to me. I'm a 69 yr old mom and if i can help please let me know. hang n there sweetie, things always could be worse god bless belle

  • Hi Belle - thanks for your reply. I think I'm going to find this forum helpful. I'm sorry you are I so much pain from this. The only pain, if this is connected, which I'm wondering might be the case now, is joint stiffness, which I've had for years and just thought was due to aging. I'm flabbergasted at how different this is for everybody. Thanks again, and take care.

    Elaine

  • Hello EC,

    Commiserations - it's a hard one, finding out you've got Scleroderma. The path from illness to treatment was not a straightforward one for me. The NHS fiddled about for two years before giving me a diagnosis. It's essential is to find a sympathetic, understanding and responsive GP who will help push for the treatments you need. Informing yourself about your own illness and treatment options is important. Don't leave it to doctors to take the lead, is my advice.

    I have found the NHS community health team helpful re. orthotics for my feet (padding on the soles has become wasted), and providing splints to help prevent fingers from twisting. I have a daily Sildenafil pill prescribed to relieve my Raynaud's which it does remarkably well, as it boosts peripheral blood circulation. Still, sticking plasters on my fingers are endlessly required to deal with pits, splits and sore patches there (I've also got psoriasis). Dentistry is awkward; it's essential is to find a sympathetic, understanding dentist with small fingers (!). So far my internal organs don't appear to have been significantly affected, so I think my Scleroderma is the 'Limited' type.

    Sending you best wishes.

    Tim

  • Hi Tim - thanks, people are so supportive on here! It's actually thanks to a doctor at my surgery who put on a bit of a health MOT lately that this has come to light, so I feel I'll be in good hands with her. I think the rheumatologist was trying to play down the negatives and not alarm me - in fact she said to let her worry about it, but I like to take control of my own health so will be armed with questions when I next see her. The bottom line seems to be that people are being treated and dealing with the different symptoms and I'll just have to wait and see how mine progresses. It's good to hear that there are things like finger splints, should I need them. I'm being referred to orthotics too, but that seems to be for flat feet??

    Thanks again

    Elaine

  • So glad you are getting a good and supportive response from the docs, Elaine.

    The finger splints were made up in response to my horror at discovering my two middle fingers had swivelled round at 90 degrees to my palm (followed a period of knuckle ulceration). Sadly I think the horse has bolted and they won't go back (appear absolutely locked there). We unsuccessfully tried splinting to get them back in line. I have other splints ready in case the two index fingers follow suit, but so far so good.

    Re. orthotics, bear in mind for the future that you may need ones with extra padding under critical parts of the soles. However I don't know how general this ailment is within the CREST syndrome, so you may be fine.

    Re. progressing, it seems to me that nothing seems inevitable with this disease. It seems to have rather individual expression depending on who you are. It's like a flock of nasty and /or irritating birds, some of which come to roost on you, and others keep flitting about. The ones that settle are your birds. Get to know them. De-stressing can't be a bad thing to keep the rest at bay. I see a homoeopath whose strategic policy is to encourage symptoms to stay on the surface level of expression rather than settling deeper. Whether or not you accept the value of homoeopathic treatment (and many people who follow the biomedical model don't) just talking once a month to someone intelligent about my symptoms, my medical treatments and kinds of parallel assistance (e.g. allergy and mineral deficiency testing) is enormously helpful. So I'm not so alone with it all - this life-changing flock of nasties.

    Best wishes,

    Tim

  • How random it all seems! I like the bird analogy - it seems to sum it up well from what I've been learning on this ultra-steep learning curve! I want to explore all avenues, including the homeopathic one. I happened to have recently bought The China Study, by Colin Campbell, recommended by a friend for diets to help on the cancer front (I was diagnosed with bowel cancer 4 1/2 years ago, hopefully no longer an issue). There happens, coincidentally, to be a section on autoimmune diseases so will be looking at that too.

    I hope your on symptoms abate or even reverse at some point. You seem to be doing all you can to take control of things. Thanks for all your advice.

    Best wishes

    Elaine

  • Hi, I have been diagnosed for 13 years. I have lung involvement and all the gastro stuff too. I am still here and been treated by the fantastic team at The Royal Free and The Royal Brompton. Take charge but listen to the experts. Joint the Scleroderma Society and Raynauds and Scleroderma Association. They are fantastic. Join a support group, meet others, go to the AGM's and learn everything from others NOT from the internet. Stay positive and believe you will be fine. Take your pills and live, laugh and love.

    There may not be a cure in our lifetime but the treatment has improved since I was diagnosed and I am still here. I am 46 with 3 lovely children and husband and my lung disease which was seeing me off 5 years ago is almost stable. My hands are great, so not everyone suffers the same. For some they have mild issues for others severe, but treatment and research is improving and we can get help and give help.

    No matter how 'silly' you feel a question is we (one of us) will have been there.

    I was so frightened when I was told I had my three children in the consultants room with me, all under 3 years old, I was still feeding my baby. I thought the world had ended but it hadn't, life has changed but we are all well, happy and looking forward to the future.

    Good luck to you and to all of us, this is a wonderful group in which non of the members ever wanted to be a part of.

  • Hi Elaine, I have Scleroderma with lung fibrosis, among other weird and not so wonderful symptoms. The thing with scleroderma is that it is so diverse, and it affects everyone differently.

    You will find that many different tests will be done, and this may take 2 years or so. This is not unusual because of the myriad of variables that this disease presents.

    You will need lots of patience, the various tests are nothing to worry about, they are all designed to pinpoint your particular needs. Like everyone on this forum you will have bad days. There are many people here who will cheer you up.

    Your GP and Rheumatologist are always there to answer any concerns you may have, and the more information you can give them regarding how you feel in yourself, will help them to determine the best course of action.

    You will be surprised how you will be able to manage things after the initial shock. Worry is the enemy. Just think of the positives.

    Best wishes, take care.

  • Hi Trunchalobesity and Titanicus - thank you both for your support. I know I am at the start of a path with lots to take on board in the future - it's early days, and to be honest I keep hoping they've got it wrong... But the message I am getting from everyone that has answered, as well as those posting in other posts, is that the treatment is out there and that if and when something crops up for me then this will kick in. I feel absolutely fine at the moment, with really nothing more than the Raynauds symptom and being a bit puffed out when hill-walking (which could be normal) so long may that continue. I want to know what the tests show though - still waiting to hear about them. Then I'll have a better picture re what I am up against. The Rheumatologist said I might not get any symptoms for 10 or 20 years and it is mild. I understand the complexity, however, so know things progress at their own, unpredictable rate and with many differing symptoms.

    Thank you both very much again.

    All the best

    Elaine

  • Hi I was in the same situation last year, also never heard of scleroderma. saw rheumatologist last March and given probable diagnosis then had lots of tests before finally getting definite dignosis in November. Had some cancelled appointments which delayed things. Have had Illoprost infusion in December which has helped but now having increased gastrointestinal problems. Saw rheumatologist today and now being referred to gastroenterologist. I went through a period last summer when I felt very down but now come to terms with my condition and learning coping strategies. I have very supportive GP and Rheumatologist which helps. Hope you get all the help and support you need, best wishes.

  • Thanks for your reply, Bealepup. It's been a funny old couple of weeks. I've been up and down, though feeling more positive at the moment. I have had my written diagnosis, along the lines that my symptoms, tests etc indicate scleroderma - limited, CREST. I'm still in the process of having tests on my organs but am trying to be as rational as possible and not let my fears run away with me. Your post, along with others, reassures me that treatment is available for the various symptoms. I wish you all the best with your present gastrointestinal problems.

    Thanks again

    Elaine

  • When I first got my diagnosis, I was actually elated as my (previous useless) GP told me it was all psychosomatic. The there was a long period of coming to terms with the fact that it was incurable and out of my control- things I still struggle with! I can't lie- it is very difficult to come to terms with the fatigue and the lack of full independence. I really miss walking everywhere.

  • Hi Jessica- thanks for replying. I agree that the feeling of having no control is hard to take. I'm still having the preliminary tests at the moment - my PFTs were normal and I had an echocardiogram yesterday so hoping that shows nothing. I guess its just a waiting game.

    Elaine

  • Hi ECGordon, I am new on here and have found your post helpful. I went to the doctors a month or so ago with un explained bruising and really itchy sores on my feet. I came away, a week or so and blood tests later, with Raynaud's and scleroderma. I now have an appointment with a rheumatologist at the end of the month. I too had never heard of this and although I am not a worrying kind of person I now fear the unknown, especially as I have two young children one of whom has health issues of their own. Like you I have had symptoms for some time now but thought they were normal or put them down to other things. Seems I was wrong and now it all makes sense. I have, amongst others, muscle aching and stiffness, painful joints (although not that bad), tiredness, shortness of breath and my little fingers seem to almost lock sometimes.....strange feeling. You mentioned preliminary test - how long does it take to get through this and what does it entail? I don't know what to expect when I see the rheumatologist!!!

  • Hi ju5

    I'm just a newbie but glad my post has helped you a bit. It does help to know we aren't the only ones, doesn't it? I also have stiff joints, especially one shoulder, which the rheumatologist says is tendinitis and she scanned my finger/joint above it and found I had Inflammatory arthritis in the knuckle so I have Neenah given medication for that

  • Sorry, my reply sent off unfinished. I also wanted to say that the tests I have had were ECG, Pulmonary Function Tests and Echocardiogram. The PFT test was normal and I don't know the result yet for the Echo and I think as nothing was said my ECG might have been ok but not certain of that. I've seen the rheumatologist twice now and am going back in 2 months and will be monitored after that. I hope some of this is helpful to you. All the best with your appointment with the rheuematolgist. Elaine

  • Hi Elaine

    Thanks for the info. Yes it helps knowing im not alone. How long after your first appointment did you have the tests done?

    Ju.

  • Hi Ju

    My first appointment was in January, when I had already had blood tests done by my GP which the rheumatologist referred to. On that day they did bloods/urine test and I got an ECG. Within 2-3 weeks I got Pulmonary Function tests, which were normal, then a few weeks later saw the rheumatologist again - more bloods/urine sample. I had an Echocardiogram last week, although haven't had the results yet. Apart from all that, at the first meeting she did a nailfold capillary examination (looked at my finger nail under a microscope). So all in all, since my first visit 2 months. She will be seeing me again in a couple of months.

    Elaine

  • Know exactly how you feel, I`m in same place for last 4 weeks, have got appts cardio and chest for April but waiting rheumatology· Hoping you may have some answers by now, all a bit scary isnt it? Good luck!

  • Oh, I totally empathise with you..it's so difficult to get your head around something with such far-reaching symptoms!! Re tests, I've had Pulomonary function test and that was a normal result, and am waiting for the result of the echocardiogram, which I had a couple of weeks ago. I hope it all goes well for you with your tests. This is a great forum, with so much on it that answers our questions. Take care.

    Elain

  • Just to say . I have it . But I still run about and swim bit slower then few years ago . Had my tests lungs and heart fine at moment .

  • Hi chockers - thanks for the reassurance. It makes a difference to know that. My echo came back normal, which, as the rheumatogist says 'is very reassuring' 😊 I go walking and have had no more difficulty with the walks than before, so plan to go on just as usual. I reckon being positive is the best way forward.

    Thanks again - onwards and upwards!

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