Another newbie and worried my problems are so much less than others on here!

Diagnosed with limited scleroderma a few months ago having had Raynaud's for a while and developing an agonising sore finger. Had heart and lungs checked and so far ok - due a 6 month hospital check in April. Have the red spots on hands, lower arms, shoulders and face, difficulty swallowing certain foods and painful joints but don't suffer as much as a lot of people on here. I take adalat and lansoprazole and I am unbelievably tired all the time. Have had both big toes fused due to arthritis and trapeziectomy on left hand (removal of small bone at base of thumb) - 4 ops in the last 2 years. Fingers very puffy and hard to bend but skin not tight and shiny. I am sitting at the computer wearing thermals, scarf and gloves and still shivering although the central heating is on! Can be snug and warm in bed but then suddenly have cold shivers and can't get warm again.

Am now being checked by my GP as my palms and soles are continually burning but cold at the same time, my ears hiss and ring and I feel b***** awful most of the time as this wakes me up at night! More blood tests but no appointment free until January.

Someone please tell me that this is usual and I'm not just being pathetic as my other half thinks. I work full time in school and I'm finding it increasingly difficult to find the energy or enthusiasm I used to have. Would love to find someone living near me I could talk to.

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21 Replies

  • Your other half should be ashamed of himself. He has no idea what you are going through and how you are suffering. You need support right now to help you cope. I am sure others here will echo my views.

    It is important that you get to see a specialist consultant in the Rheumatology Department of your local hospital. I am so fortunate that mine has been very supportive with advice and treatment to has helped me adjust my lifestyle to cope with daily life. I have had Raynauld's and scleroderma for the past 12 years and feel drained and unable to cope some days. My partner is very supportive but like yours cannot understand why I am so lacking in energy, as it is not visible.

    My worse chore is going to the supermarket and visiting the cold isles so much so that I do not do it any longer as my system seems to shut down and I go into a panic. I always wear warm gloves as my fingers turn white at the slightest change in temperature, even on a warm day. The burning sensation when the blood returns is excruciating. My joints are so painful too.

    Take heart though as help is here with so much sound advice form others who have experiences to share. Contact the Raynauld's and Scleroderma Association or go online for copies of there extremely helpful leaflets.

    All the very best.

  • I was referred to the rheumatology department at my local hospital and had all the usual tests. I was told what it was, given a few leaflets, told to keep warm at all times and given an appointment for 6

    months time. At that appointment I was just checked over again and have next appt in April. Other patients looked ill so I felt I was being a bit of a nuisance! My GP is great but must be sick of seeing me! Feeling very sick and dizzy today but not at work which has to be good!

    I joined the RSA but until now felt daft contacting anyone :-)

    Thank you so much for replying - I feel much better!

  • First of all, no you are not being silly or over-reacting. Scleroderma is a nasty debilitating disorder. We are like delicate snowflakes, no two are the same and we are likely to dissolve into tears, or shivers, or pain at any time.

    I have had sclero since I was about 11, but it didn't really start to make itself a nuisance to me until about 22 when I started Raynaud's and Telangiectasia. Probably 10 years after that I began to have internal problems but it wasn't until I was around 40 that the systemic damage became obvious. I don't have any skin or joint involvement to speak of but my Oesophagus and bowel are badly affected and I have overwhelming fatigue which slows me down. Once we had children when I was 30 and 32 there was no way I could work as well as everythig else. Fortunately I didn't have to, we managed very well because my husband had his own business. For me though, there was no diagnosis until 2003 when I was 59. I had to put up with thinking I was imagining things until I had a sudden crisis which put me in hospital.

    In some ways it is easier if one has obvious skin involvement because others can actually see what is happening. For me there is nothing to show except some silly little red spots that look like big freckles and funny cuticles and swollen fingertips and anybody can see that they are nothing to worry about!!!! Except that for practitioners who know what they are looking at they can tell a sad story.

    You don't say how old you are or where you live. In the UK and US there are a number of centres where Scleroderma Experts can be found and it is advisable to seek out someone there rather than just a regular Rheumatologist.

    Keep posting and asking questions, nobody here minds, we know what it is like.

  • I won't bore you - you can read my reply to PatientX above!

    I live in Yorkshire and I'm 63 on the outside but a young, troublesome 36 on the inside ;-)

    I've always loved my food but now have to limit what I eat to avoid pain. Temptation sometimes gets me but then I pay for it afterwards!

    My head teacher at the school I work has asked if I can possibly arrange hospital appointments out of school hours - oh dear - some people have no idea do they? No one I know has ever heard of Scleroderma which doesn't help - you can't exactly stick a leaflet under their noses can you? Might be fun with some people though!!

    I too have the funny red freckles and weird cuticles. What once were lovely nails are now a mess and generally multi coloured without the nail varnish!

    I look too well to be feeling like I do so maybe I should wear a notice round my neck like a plague victim?

    Many thanks for your reply - much appreciated.

  • Hi newby we have the same user name but different spelling. So sorry that you are suffering so much it is a rotten condition and affects everyone in so many different ways. Please try and remain positive, easy to say I know. I have limited scleroderma and raynauds and very much empathise with your fatigue.

    Have you tried getting an appointment with the Royal Free hospital in London, they have a specialist team there and are excellent, just ask your gp for a referral they work in conjunction with the local rheumy consulant you are seeing at the hospital assuming you are under one.

    Hang on in there sending you my best wishes. Debbie

  • I didn't know you could ask for referral to another hospital!

    I will wait until I see my consultant in April - if I still feel as bad I will certainly do that.

    Thank you!

  • Don't wait until April, get on to it now. It could already be too late to start some of the medications which are available but the sooner you get proper care the better. There are other support groups in the UK you can join in with, I live in NZ and I correspond with a number of folks in the UK and that is how I know what is available to you. If you want to send me a private message I can give you some contacts who will help with advice and information. They will also know if there is somebody close to you you can talk to on a social level.

  • Hiya I have primary raynauds, mild/ allergy related asthma, touch of IBS, touch of eczema on my hands.

    Hopefully they all agree on here that no ones problems are less than others, each off us have different problems but they are no less significant. They maybe less or more in severity than the next person but different members are all able to offer each either support, advice, encouragement or just someone to have a rant with.

    If ur not sure on something ask a question on here, write a post or ask the RSA somebody will be able to help.

    I agree with patient x and judyt. Unless you are who know someone is going through what you are they don't understand or can't contemplate. For instance why we gloves all year round. Also try not to get too stressed easy said then done, take care over winter, and hopefully it will not be too bad this year

  • You poor thing. Afraid its awful to start with. You need good rheumatologist, plenty of things can help but it needs specialist treatment. Fatigue normal, you.arent a wimp. Good luck.

  • I was told by Raynaud association that the top consultant to see for this condition was at the Royal Free , London . At the time I had just been to see a rheumatologist locally who couldnt diagnose me , and wasnt interested . At the Royal Free they were very supportive and did extensive tests . Its a teaching hospital so has a lot more funding than other hospitals .

  • I too am a Yorkshire lass with limited scleroderma with secondary Sjrogrens. I have received the most incredible care by Prof Chris Denton at the Royal Free and more locally from Dr Maya Buch at the Scleroderma centre at Chapel Allerton hospital in Leeds. Sadly, 14 months ago I was also diagnosed with follicular lymphoma and more recently with a pre-cancerous tumour in my pancreas. I find it a pointless feeling low and depressed about my health, I still consider myself one of the lucky ones. Care is improving so rapidly in scleroderma due to the brilliant work of people like the RSA's founder Anne Mawdsley and organisation who provide information and support to patients and without whose charitable contributions to research we would all have shorter life spans!

  • Hi, welcome to the forum. Any problem you have,you can air it without a problem. Worry is your biggest enemy and you can defeat it via communication with the understanding people on the forum.

    I am particularly interested regards the reaction of your family. They don't understand because it's invisible, the usual reaction is ' pull yourself together and stop being lazy.'

    I will share with you the first comment a close member of my family said to me when I was diagnosed with Scleroderma. ' Trust you to have summat that no bugger has ever heard of'.

    I agree with the advice judt and others have given. Get medical help ASAP because as you know this time of year is even worse.

    God bless you, take care, and a merry christmas.

  • That sounds like a good old Yorkshire saying!? Made me laugh - thank you.

    Merry Christmas!

  • Ha ha ha!! I had the exact same thing said to me too!! I found that when I was diagnosed with scleroderma only those close to me understood what I was going through.

  • Welcome Gill, I'm new here too (with the same diagnosis as you). Wishing you all the best and hope you get the support you need. I've found this forum helpful and people have been very kind and given useful advice about what is a very daunting diagnosis. Good luck. Chloe x

  • You are not pathetic. We have all sorts of symptoms people who are healthy can't believe because it is unbelievable but true.

  • Everything you say is 'normal' for someone with Raynaud's and scleroderma! Fatigue is one of the most common and annoying symptoms. If you would like to chat you could call the Raynaud's & Scleroderma Care and Support Helpline on 07530 810 964. If you have a landline and leave your number they will call you back.

  • HI - I have a diagnosis of RA and what looks to be secondary Raynauds and secondary Sjogrens as well as Hypothyroidism. Presently my RA is being quiet but the other two are plaguing me. Plus I have itchy spots on my face - they do look a little bit like pink freckles but they are raised like insect bites and itch like no one's business! I think they are Urticaria and are some autoimmune type I also have extremely dry eyes and I'm currently in bed under duvet and blankets to try and warm up after a day out working. My legs feel as though they have been injected with Vicks rub or liquid ice. I spent most of last year in gloves, even holidaying in Tuscany in a heatwave! but now it's double socks and wooly chillblain protectors on my toes instead (although I have to wear gloves outside of course).

    The way I've been dealing with RA (plus friends) is to become a volunteer for NRAS. However I now always feel a fraud because others with it seem to have real RA whereas mine seems to take on new guises all the time and joint pain currently feels like the least of my problems. However the fact is that it's all part of my dodgy immune system and I'm too tired a lot of the time to be a productive member of our household as well as work and volunteer.

    But the volunteering has been my way of turning something very negative into something positive and I have also found learning about the various autoimmune conditions very interesting and never fails to put my own health problems into perspective. It does mean we are currently skint as my husband is in quite low paid work and I'm self-employed and not earning much with two sons at university and another one still to go. But for me having these problems has also signalled a change in lifestyle and could take me in many directions career wise and creatively. I hope you will be able to find some positivity in all this adversity one day too and perhaps see if the Occupational Health people in your school can help or maybe you could drop your hours to enable you to pace things more?

  • Hi hope you have settled in. I have crest syndrome and other things going on i also live in west yorkshire.

  • Hi GillB46,

    The only people who really understand how you feel are other sufferers. No, you are not imagining any of this. I was diagnosed in 2004 and have developed many symptoms including the ones you are experiencing. I have learnt to cope with all the complexities but every minute of every day and night is a struggle.

    All the replies you've had on this forum are completely true and accurate. It does't matter if you have more or less symptoms than another, we all experience many of the same symptoms and know just how you feel.

    The list of symptoms, in my experience just get longer and longer each day. Raynaud's and Scleroderma and Autoimmune Disease in general is very complex. There are many sides to Raynaud's hence the name "Raynaud's Phemomenon".

    Keep in touch on this forum, there's much to learn and much support to be had. Some wonderful folks meet here to share and to encourage each other. You are not alone. Take good care of yourself. I look forward to reading how you're doing. Try not to stress too much as that will only make the symptoms worse. Rest, rest, rest as much as possible.

    Best wishes. Graygirl1

  • Thanks for all the replies. I'm having a bit of a moaning time just lately probably because I'm tired. Everything seems to be happening at once! I sleep very little because of burning feet and restless legs. My joints are screaming and groaning. My ears are hissing and whistling and I am SO cold all the time - wearing gloves, scarf and thermals in a house with central heating. I am finding work at school increasingly difficult and I don't think I can carry on much longer - I need to sleep when it's time to get up!

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