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Vanessa

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Everything posted by Vanessa

  1. Hi there Whilst my Raynauds is managable I have to take daily precautions and my best friend is my handwarmer which is produced by a famous lighter maker. I fill it with fuel every morning and carry it in my pocket. It stays warm all day and a can of fuel lasts for quite a long time. Also I find skiing mitts better than gloves and for getting in to the car when its cold one of those microwaveable grain filled affairs. I actually have 2. One is shaped like a hot water bottle and the other long and slim to wrap round achey shoulders. Only disadvantage is they have a seriously weird pong and can't be washed so soon look a bit grubby. I wish I had a heated steering wheel but then we can't have everything we wish for. Having said that I used to wish I had tighter facial skin and now I wish I hadn't! Vanessa
  2. Skin improvement after Iloprost

    Thanks for the reply Amanda. I remembered you saying before that you may have had some improvement but others have talked more about the benifits with their Raynauds. Is there any chance of moving this to the main forum? Thanks Vanessa also - do I need to take towels to The Royal Free- thinking of that rush hour train ride where its every man for himself and wondering how big my luggage needs to be!
  3. Finger Nails

    Hi Purr I, too have, developed deeply ridged and pitted nails since developing Scleroderma. They are also much harder. Vanessa
  4. Just in case anyone else has been driven mad by wearing a bra, I have found a solution. I googled sleep bras and finally ended up with the most comfortable soft jersey cotton little number with not a vicious underwire or scratchy fastener in sight. It is actually a nursing bra but who cares. Bliss!
  5. Iloprost infusion

    On my upcoming stay at The Royal Free I am to have an Iloprost infusion. Since having Nifedipene my Raynauds is much better anyway and if I am careful I can almost avoid having episodes. Have those who have had the infusion found that it has helped with skin softening as I was told that this sometimes happens by the hospital? Have there been any other benefits as there certainly seem to be a lot of side effects?
  6. I am going into the Royal Free next month for 5 days Iloprost and some tests. Can any old hands at this please advise. Do you take pyjamas for all the time or do you change into clothes during the day? Towels, hairdryer? Are you in a ward with other Sclerodermians or general people? Are the wards mixed? Is there a fridge as I have Chinese herbal teas (yuck!)which I boil up every night but could predo some and put it in a Tupperware? When they say tests, any idea what kind? I am actually really looking forward to getting there. Vanessa
  7. Cant stand tight bras!

    Actually I am a 36D and the sleep/nursing bra I got is fine even though I am not flat chested. It has a wide stretchy(quite pretty in fact) underband and is quite wide shouldered. All very good.
  8. Dried out throat

    Thanks for all the feedback folks. The trip to Royal Free went really well. Prof. Denton wasn't in that day which I was really dissapointed about at first but soon completely reassured when I met Doctor Fonseca and Dr Ong. I do have Diffuse Scleroderma and I am to go in for 5 days Iloprost and assessment. They said it should be in about 6 weeks. I am feeling relieved to know that things are really getting sorted now. I had a wonderful weekend as both my girls came home from university to visit and made a real fuss of me and we all went out for a very long lunch with some lovely friends on Sat (hence the alcohol naughtiness) Also they put me on Fluoxetone for the nerve pains and it already seems to be working and I guess I shall have a permanent smile on my face from now on. Tra la la Vanessa
  9. Experts!

    I am so pleased for you that you got seen so quickly and all went so well. I will have my 1st appointment next Thursday and can't wait. Who would have thought that the prospect of a hospital appointment could be so exciting! Hey ho. Vanessa
  10. Hi All. I seem to be moving really quickly and it is all a bit scary. I began with pins and needles and numbness in mid May of this year and Raynaud's (which is now pretty bad) started in June. Swelling in my hands started early July and they are now extremely swollen and uncomfortable. Early September brought painful and burning knees and elbows and swollen painful feet and general tiredness and feeling of being unwell. By October my hands had become very tight and difficult to use and I developed tenderness in my face. In November the rheumatologist told me I have limited scleroderma CREST syndrome although my blood tests were mostly normal! Since then another set of tests have been done as well as chest and hand x rays and I am waiting to hear back from UCL for an appointment as my general practitioner has now referred me to there. But since seeing the rheumatologist my neck has become very tight between the jawline and collarbone and has gone darker in colour and the flesh has taken on a "cottage cheese" appearance and my face feels as though it has become thicker and spongy under the skin. My eyes are dry and I wake up with a dry mouth during the night. The last couple of days my arms have become tighter and whilst all this skin over my whole body has been tender for a while with sort of "nervy" and stabbing pains now my inner thighs feel as if there is something more happening. Also on thinking back to when I first became ill apart from being stressed at that time and having caught a couple of cold/ flu type things which was unusual for me I did get chilled a number of times. Has anyone else got this illness after become chilled more than usual? I am a bit fed up with wondering what each new day will bring but trying to keep my spirits up - which in fairness I am managing. Also terribly cold isn't it? Vanessa
  11. Sorry. I meant I am being referred to Royal Free hospital. The doctor I am seeing just now at West Middlesex Hospital is a general rheumatologist.
  12. Just need to talk

    Hi Gigi Just wanted to say I really understand how you feel. I have only been diagnosed a few weeks and sometimes still forget when making plans that certain things are just NOT gonna happen. It takes a bit of coming to terms with the fact that my energy levels are shot to pieces. Also I finished a relationship with someone who was quite abusive almost 2 years ago and was really starting to have fun and enjoy my freedom with both my kids at uni. Seems like after years of looking after everybody else I am now learning to take care of me. On the upside I have treated myself to a giant flatscreen television and am thoroughly enjoying my evenings wrapped in my furry blanket curled up on the sofa just vegging out. And importantly I am blessed with some WONDERFUL girlfriends and one or two nice male friends too who are only too happy to join me. Things could definitely be worse. Keep your chin up and remember we are all here for you.
  13. I am rather confused and hope that you will be able to shed some light. I saw the rheumatologist two weeks ago and at the time of my visit was having a nasty Raynauds attack. It was my second visit and he told me that he had received back the results of all blood tests bar one and that the good news was that they were all pretty normal. I asked him what in his opinion was wrong and he told me that I had limited Scleroderma, CREST syndrome which I had not heard of. The symptoms which I had (which have become even worse inthe last two weeks) were very swollen, turgid fingers,a tightness over my hands particularly the right one which made it hard to close, loss of grip,tightness in wrists,electric nerve type pain in my arms, sensitivity to tightness of clothing, watch etc.swollen, tender feet,tenderness in face,general sensitivity all over skin,burning in elbows and knees, general fatigue, dryness of eyes and my hair seems to be dropping more than usual. He gave me a painkiller on my first visit which was a great help and on seeing my Raynaud's in action started me on Nifedipress which is the lowest dose of Niferdiprene (as I have low blood pressure and need to build up to a higher dose) for the Raynaud's. I went home and looked up Scleroderma and it made sense. My general practitioner agreed to refer me to The Royal Free and waited for the letter from the rheumatologist. When this arrived it made no mention of the Scleroderma CREST. Luckily my best friend was at the appointment with me otherwise I may have thought I had dreamt the whole thing. The letter said that my bloods were remarkably normal apart from slightly raised ESR of 26 and an AST of 39. C-reactive protein was normal at <5mg/L and immunoglobulins and thyroid function were normal. Autoantibody screening tests were completely negative. These included neg results for ANA,ANCA,DNA,ENA and Rheumatoid factor He was still awaiting results for the anti -CCP antibody. Normal creatine kinaise. He said in the letter that I continued to be symptomatic with pain in several joints and the consequences of severe Raynaud's in my hands. Explained his starting me on low dose Nifedipine because of low blood prssure saying that he would up to triple the dose gradually. He concluded by saying that at the present time, the working diagnosis is one of idiopathic primary Raynauds syndrome, as there is no additional evidence to support the diagnosis of a connective tissue disorder. When my general practitioner recieved this he called me to explain that he would have to refer me to Royal Free with Raynauds as that was what was in the letter which he sent me a copy of. I do not understand very much about the blood tests although I have looked on the internet but I am not sure of the implication of these blood signs but what look like clear physical signs. Can anyone advise please. Also over the last 2 days my right hand has become so swollen and tight that it is causing me concern. using the computer definitely makes it worse.
  14. Skin/nerve pain

    Hi Jill I am experiencing nerve/electric pains right now and get them frequently. I have this problem particularly with my lower arms. I find it helps to dampen tea towels,put them in the freezer for 20 minutes then wrap around my lower arms for a short time. Obviously it is important to take care that they are not too cold but it certainly relieves the problem for me. May be worth a try. Best wishes. Vanessa
  15. Infection

    Do you think eating just probiotic yogourt is enough before taking meds then? I have been eating a bowl of rice with soya milk before tablets as I thought it had to be something pretty solid. Having said that the old tum is growing steadily! Vanessa
  16. Having a hard time

    Hi Mioceans, You really seem to have so much to deal with that I just wanted to send you loving best wishes. Thinking of you. Vanessa
  17. Finished another study today (DISTOL)

    Thanks Lisa. And very best wishes to you.
  18. Hi Everybody I was diagnosed last week with Limited Scleroderma CREST and I am still getting my head around the whole business! I started having symptoms of pins and needles an numbness in my hands and feet back in mid May of this year and shortly after this Raynaud's began. My hands started to swell up in July and now I have permanent hard "sausage fingers" They began to kind of curve inwards and get really hard, turgid almost - and the backs of my hands- all the time during the past couple of weeks. I have started trying to stretch them quite hard and I am making tight fists and pressing my hands flat and it seems to work but do you think that I could do any harm? Also the Raynaud's is improved over the last couple of days as the rheumatologist gave me nifedipress when he diagnosed me( I was having several episodes per day) and now only once or twice daily, but I am getting it in my nose now! Every time I go out! Any ideas how I can prevent it there as it is a bit difficult to cover up although I do walk around holding it with my gloved hand looking even more nuts than usual. Lastly I am really quite worried as for the past few weeks my jawbone, cheekebones and the bone under my eyebrows have been very tender in a sort of line each side. With the nose Raynaud's I am wondering if this means that it is moving to my face. Any ideas? It just seems that the whole thing has progressed quite quickly to me. I am so happy to have found the forum as I do feel a bit "lost and lonely" and I REALLY appreciate you taking time to read my tale of woe. Bewildered Vanessa x
  19. Newly diagnosed and still stunned

    A very big thank you to all of you. I have asked to be referred to Royal Free Hospital but I guess it will take a while for my appointment to come through. Meanwhile I have always refused to wear a hat of any description because it does me no favours at all. Now I reckon I will be treating myself to a balaclava and embracing the "armed robber" look with gusto!!! Felt as though my little nose was going to drop off today. Oh how the mighty have fallen. Off to give my digits a quick pull before bedtime. Sleep well. Vanessa
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