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About giorgigirl

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  1. Aw thanks everyone for replying. I went to the hospital today, and they think my little toe will not have to leave me which is good news. They suggested the sore spot is a possible a blood blister, strange comment as when I look at it in a mirror it looks white and I thought a blood blister is red, but hey, so I am not entirely convinced, however, it does seem to have lessened in the pain area over the last couple of days. They have been quite thorough and have told me to go back in two weeks time for a further check...I think I will use this two weeks to contact my sclero specialist and ask t
  2. Hi Everyone, I recently was admitted to hospital as my little toe was going a nice purple colour. I had an angioplasty in the hospital, where they inserted balloons to widen some viens/arteries. Its now two weeks on from this, and the underside of my little toe seems so sore and quite painful. The colour still isnt that great, although not quite as purple as before. I am thinking that perhaps I am developing a digital ulcer or a sore of somesort due to either the scleroderma or the critical ischema that I had. Has anyone else experienced this type of thing? and if so what treatment was offere
  3. Aw I know what you are saying but at the end of the day our bodies are just a vessel and it is our soul that eminates our beauty and that can never been damaged by scleroderma or any other desease. Hard to remember and hard to deal with I know. But you know at least you have a partner to share your thoughts, to cuddle up to, someone who is there to lessen your fears. I have lived on my own now since 1989, I was married once but I have not met anyone since then that re lit my fire so to speak and now, since having this desease for a few years I have given up all hope of ever having that compa
  4. hi, Well have you considered that perhaps you may have a frozen shoulder or calcific tendonitis. Both cause chronic shoulder pain and this can radiate in the neck and arm area. I have had issues with this for 2years now, cant sleep on my right side and it causes too much pain, cant lift anything heavy, have worse pain if I have driven my car or have done the hoovering!! At first I could not even lift my arm to comb my hair, and I havent been able to reach behind my back with my right arm at all. After two years of steroid injections, extensive physio and hydrotherapy, I am now going for
  5. Hi Sherion, Sorry to hear that you also have had to experience the same. I was at least lucky enough to be able to have three lots of steroid injections, which did give temporary relief. I also found hydrotherapy sessions also gave slight improvement. Perhaps this may also help you a little if you cannot tolerate steroid injections. I am going to push for arthroscopic surgery I think rather than manipulation. This is when they place a camera in the shoulder and then they can cut through the lesions which, from what I have read on the net is less complicated than manipulation as there is a
  6. Hi everyone, Just wanted to know if anyone has suffered with a frozen shoulder along with their scleroderma. I have had one now for about 2 years with no real improvement with tradtional methods I.e. physio, hydro, steroid injections etc. I was referred to a shoulder specialist who I saw today and they suggested that I undergo a shoulder manipulation under anesthetic but she wanted to check this out first because it requires breaking the leisions that have caused the shoulder to freeze and she was unsure if this was the best way to go due to the muscle involvement etc with scleroderma. I
  7. Hi all, Since I have had this lovely desease, I have noticed that I have to write most things down, especially appointments, when I sent off things like letters etc as otherwise I just can't remember.....I have also noticed that I can read something and things just dont register even though I have thought I have read and internalised what was said.....I seem to get days mixed up, names mixed up, cant remember how to spell the simplest of words and generally I really dont think I am as mentally sharp as I use to be. Im 52 and accept that as we age we tend to get more forgetful, however I am no
  8. oh dear, Im doing it again!!!!!!, I have just re read your story and see you have already answered my question.....yikes, does scleroderma effect brain functioning? I really am beginning to wonder cos I keep making silly mistakes like this..lol Anyhows best of luck once again Giorgigirl
  9. Hi Barbara, sounds great and I wish you the best of luck.......when are you on and what station......are you doing a slot on radio4 or is it local radio......Im from the UK and would like to tune in sincere regards giorgigirl
  10. Hi steph..anne Welcome to the best support group you can get. Im sorry that you have been diagnosed with CREST and I guess you are feeling a little frightened and confused at the moment, I know I did when I was first diagnosed nearly two years ago now. You will find this place a wealth of information and the support from others, who know what you are going through, invaluable. May you find peace in your heart and please post whenever you feel the need to off load your troubles, frustration and also happy times. Sincere regards Giorgigirl
  11. oh dear, i keep getting my left and right side mixed up!!!!! the last post I sent should all read left side pain, and left side breast........doh sorry guys.....must be the tablets!!! Giorgigirl
  12. Hi Tammy, Sorry to hear that you had to have a biopsy. That is something that I have not had to experience at the moment as they think I only have mild PBC and have used the M2antibodies as confirmation of the desease and felt that a biopsy was instrusive and not needed in my case. They are just monitoring my liver function tests and presumably checking on Alk Phos for any indication of deterioration. I am in the Uk and perhaps they look at these things in a different way, I dont know. Anyway, I know I am getting fed up with the pain on my right side and have an appointment coming up next mo
  13. Hi Anne, Glad you found the information useful and I just wanted to wish you good luck at your next appointment. Sincere Regards Giorgigirl
  14. oh thanks for the welcome Pam....yes ive been around for a couple of years now. I wasn't sure if Sclero effects the muscles and nerves in this area, and thanks also Shelley, I suppose it could be sciatica, but thought you had to have back pain with that....suppose the best policy is to get it checked out....just dont like it when things like this happen in these areas if you no what I mean. Oh well, we have to put up with worse lol Thanks anyway for the helpxx
  15. Hi, Has anyone experienced burning, tingling pain in their buttocks and backs of their thighs.....it is there as soon as you have sat down for 10mins and laying on your side does not make it go away. I have also noticed that when I go out for a short walk, there is pain and stinging in the tops of my legs, which doesn't seem to go away and in away makes it worse ....really not sure what this is all about but have had it now for nearly two weeks. It really is a pain in the rear!!!!! thanks in advance for your replies Giorgigirl p.s. I did have an angiogram just before ho
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