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Posts posted by chockers

  1. :blush: Hi Folks


    I have mild scleroderma with R.A


    I have IBS so they say in the rheumatology department.


    Can someone tell me what their bowel problems are like other than me reading leaflets as they mimic what is not right and they both sound the same .


    I have small problems with acid which is ok with pills. My R.A doctors says I am too mild at moment to really do much more .(You can see the difference now since my diagnosis in 4 years, but its slow.)


    What are your symptoms like?


    :wub: :wub: :blush: :blush: :blush: :blush:

  2. Thank you. I am a lot colder this year .


    I wonder if I should take Nifedipine all year round? I have had changes (slight) since I have been on reduced Methotrexate(liver).


    I shall see someone; the nurse in July and R.A man in August.


    love Christine

  3. I have to use a emollient cream its like lard but stops the face drying out and flaking and the more you use it the better the skin becomes. I take a pot every where I go. When washing my face it's done with the emollient cream then when dry I put more on.



  4. Hi Folks


    I have rheumatoid arthritis with overlap scleroderma and Raynaunds. Just lateley if I have got cold my temperature has gone down to 35. Also I have been like this when I have had a fever. Last time I had a fever I had trouble it got to 40 and the lowest was 35.


    I also traveled home on a cold bus and my feet got cold and walked home half a mile with feet very cold and numb pulling a bag behind me which would had thought would had warmed me up.


    Do I need to speak to the R.A. nurse next time I see her? Does anyone else have this. I take nifedipine in winter wonder if I should take it in summer?


    I am also still wearing winter clothes as can't keep warm sometimes.



  5. Cover up might be the worst thing, I think it started off my dermatitis and I have never got rid of it. I can't use most things on my face now. The best thing is get it under control and then you may have a pink face. I found community dermatologist nurse the best as she had time to sort it and I got some camouflage make up from the red cross and it covers everything.



  6. Well I have big skin problems, all to do with my auto immune system not working. So it makes you prone to rashes.


    Try making an appointment with the community dermatology nurse, then try to get a referral to the hospital dermatologist.


    Now the dryer the skin the greaser the ointment you must put on. As creams just go in and 5 mins later skin is dry again, I use an emollient ointment looks like lard I wash in it and then rub some on and keep the face greasy if it's dry which might mean twice in a hour a few times a day.


    I have acne Rosacea and seborrhoeic dermatitis .I have it in my hair, face, ears and chest ( rare ), I would recommend the community dermatologist nurse as they have time to see what works and what does not and can inform the hospital better.


    You might have a fungal thing on your face, mine never ever goes; I expect I have it for life .Good control or a red face. I find hospital fine but really as the appointments are so far between them you need the nurse as well. She knows me well now and all I have to do is ring her and I don't have to see her.


    You need ointment rather then cream sometimes and you could have more then one thing wrong with your face with me it's a pain in the neck. The rosacea needs one cream the rest needs other stuff. I also need anti biotics for spots as they won't go very easily.



  7. I have thought if my finger is still mucking about next year I thought, you know. I will ask to have the end removed or end of my finger chopped off .

    Maybe that would be the end of a sore finger that has to be covered up :emoticons-line-dance:


    But how many more lumps am I growing? :great: Ha ha I will end up with stumps :lol:

  8. Update


    I have cancelled swimming until May. I now wear a mepore dressing on the end of my finger as that's the most comfy thing to wear. I keep it on most of day, cooking I just put latex gloves on, I just pop a glove on for messiy bussness and I wash my hands with the finger out of way. Washing up and cleaning I wear rubber gloves.


    It has changed a bit and now it looks like there's a bit more to come out, it's sore, painful to touch. It does not stop me from doing anything apart from swimming.


    I might buy a cast to cover it and go swimming but I have child like hands so won't be supprised if they are too big?


    I suppose I will be like this for a while?


    Christine :happy-dance:

  9. Hi I have had both. The worst was the diet beforehand.

    I knew nothing of the top end, was sound asleep, the bottom end I woke in middle

    and saw my insides on the t.v bit but it got painful so they just gave me a other shot and was out

    for the rest of it .


    Nothing to it really; the thought is worse. Diet was lovely bovealy and the running to the loo

    clear out time ha ha they give you something to drink to clear you out. Otherwise not much too it.


    Christine :emoticons-line-dance:

  10. Hi folks


    Well my nurse says I don't have crest and my rheumatologist says there's no such thing as crest or limited, he worked at Royal Free, so what ever I have he will be an expert as he would had seen it.


    Today I had to ring the Raynaud's and Scleroderma people because (sorry no-one answered) my calcinosis popped - it grew over night and started to pop out of the skin, with a load of liquid calcium (white stuff). The Raynaud's and Scleroderma lady (Ann) had just done a survey on them and knew what to tell me to do. I ordered some antibiotic cream from the chemist (forgot the name) and I am keeping it dry and covered.


    It was the biggest the nurse had ever seen, I went to the connective tissue nurse on Friday. Today I rang our help line but the nurse (mainley R.A.) rang back - go to doctors. That would had been totally useless as it just looks like a scab or a hole, but I can see the core inside. And doctors just don't know they have never seen them. So I have my finger covered but its comfy as using the right stuff.


    Anyway that's me today.


    ha ha ha ha



  11. Hi Folks.


    Well, I've been to the nurse today.

    She says my calcinosis is the biggest she has seen...wow.


    It has not got a hole in it. I have been swimming this week with 2 plasters on it. I wash my hands but don't soak them and I also keep gloves in my pocket.


    Every now and then something rears its head; No real diagnosis, apart from overlap rheumatoid arthritis and scleroderma.


    I've also been told to rest more. ME!!! Doing too much....Ha! christine

  12. I can remember you well and would know you if I saw you, even if I saw you just the once.


    I did not come to the AGM last year as I felt I knew enough for now and had been to the rheumatoid groups as well, but will come to the AGM next year 2012 rather then this year, as it's the 30 year thing.



    Hope you are well.


  13. Hi Sue


    No this was not my normal doctor. He looked at my finger but he said it was a whitlow. They have 5 minutes per person per visit so no way would he go though my notes. I did say too him it was scleroderma realted.



  14. I have Hypothyroidism and feel fine unless it goes to pot.


    If you feel fine then you are stable so don't leave off your thyroxine; your body does not make it and you need your pills.


    You also don't pay for pills from the doctors; it's now free if you take thyroxine.



  15. Hi Amanda

    Yes I keep forgetting to post .As I like think theres nothing wrong ha ha .

    Do you rembember me I met you in 2009 agm .I am going to miss this year and come 2012 the 30 yr one

    As been twice .


    So how are you .


    love Christine chris the little lady

  16. Hi Folks


    Guess what I have done...I picked the calcinosis on my finger to get it to pop ha ha! Now I have a big white round ring which doctor says is infected, you can hardley see any redness. As I have a lot of antibiotics for acne rosacea he has put me on double as they don't work well and may be not the best ones to be on. There are issues with the methotrexate.


    He thought it was a whitlow (felon, infection in a finger tip) but it's not and that's on my notes. Now it's on the tip of finger and had a go at covering it, the plasters made it sweat so I will have another go at finding something else.


    Now what do I do to stop it ulcerating? I also have Raynand's with the tips of fingers being cold. Yes I am always banging it even with gloves on!


    Is there anything I can do?


    Thanks Chris

  17. Well I have faith in my rheumatologist as he once worked at the Royal Free in London and has seen a lot of Scleroderma.

    I would have good care if I needed it ....


    I am lucky to have him even if I don't know what type of Scleroderma. I know why, it's because when I went to get diagnosis for the R.A I took a list. I had started to get white fingers and remembered to tell them most things. Then I had a blood test, the new type of blood tests which pick up everything plus Scleroderma. So then I hardly knew I had it .


    Four years on you can see I have scleroderma slightly .Things now have moved on a bit. They have been testing me for this and that

    with the dermatologlist and rheumatologist together. So likely that's why I found tests had been sent on to the other hospital for testing on the blood form so I guess I have Crest. Will ask next time.


    I was letting them tell me as I guess they will test me a few times to make sure? I have the signs I have it.


    love Christine

  18. Hi Folks.


    I have scleroderma overlap with Rheumatoid Arthritis. I am well controlled.


    I got a copy of my bloods for insurance reasons and to fly out and I see on there they are testing me for CREST though I've not been told yet. Guess they might be still testing me?


    I have Raynaud's, Calcinosis, little red spots, heart burn, tight skin on face and scalp, Irritable Bowel Syndrome as well as the R.A. (very little joint damage.)


    So how do you know you have it ?


    I guess I might have.