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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 their opinion as I am due to see them shortly for a six month check up and they are unaware of the issues that have recently occured. LOL I always feel a lot better when I have talked to them as, like all of you know, unless you see someone who truely understands this desease, there is always this nagging doubt that they maybe professionals but they aint specialists!!!!. Love to you all Oh and a quick update on the shoulder manipulation I had about a month ago.....they said after the op that the shoulder was well and truely frozen and they felt it hadn't been that successful and I might have to go back in for another op using a camera and then cutting away the stuck tissue, Funnily enough, this is what my specialist suggested in the first place but my local hospital decided the more cruder op first..just proves my point really about professionals and specialsts as mentioned above LOL...still have issues with the range of motion, but there was some improvement. At least having a couple of steroid injections gave me some energy for about a week!! so its not all bad, hehehehe Take care all of you and keep smiling
  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 offered. I have pushed my local hospital to see me next week to check it out before it gets worse, but you know what it's like...we worry..too much some times and want answers from people who really know...and thats got to be this board !!!! Cheers everyone Giorgigirl
  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 companionship. I thank my blessings that I do have two wonderful children (young adults) that I can call upon in my time of need. Our physical appearance may change, and everyone changes with age regardless of health issuses, but at the end of the day it is purely physical, you will never lose the real you and this is something that your partners first fell in love with, just as you fell in love with them. May you find peace and love in your hearts and continue to share your friendship, love and respect with your companions Giorgigirl
  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 arthroscopic surgery or manipulation to try and regain the range of motion and lessen the pain. This is a really painful condition that can go on for months and months, I hope that you both get some relief from the pain that I know you are having Sincere regards Giorgigirl
  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 risk of fracture. Both procedures have good results as far as I am aware in relation to improved range of motion and decrease in pain. Yes, both require physio afterwards to regain muscle strength, (I have a lot of muscle wastage from this after 2years) but all things considered, hey I would just like to be able to shave under my right arm!!!!!! I hope that you find some form of therapy that works for you and regarding your comment that you were told just learn to live with it, well I am not prepared to just live with mine, I have lots of other pain due to the sclero to live with and if there is something that can be done to release my shoulder then I will go for it, I am sure if these doctors has similar experiences, then they would not take the attitude of 'just learn to live with it' eh? Sincere regards Giorgigirl
  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 am glad she was being cautious and wondered if anyone had any experience of anything similar and what procedure they used after conventional methods failed. As always, many thanks for any replies and my best wishes to all of you Giorgigirl
  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 not totally convinced that this is the only reason for these occurances. I have also noticed that my head does a jerk to the left on occassions which has been happening for the last nine months or so. So my question is to all you lovely people...does sclero effect the brain, its function, the capacity to remember, those sorts of things....or am I just growing old gracefully but my brain has decided to go at at slightly quicker pace!! Sincere regards to you all Giorgigirl
  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 month which I will push for something to be done. I have also found belonging to a PBC support group here in the UK similar to this site helpful....perhaps if you havent done so, you could check them out. I have also found that recently I have had an itch on the underside of my right breast, this comes and goes but I also think this is PBC related, and again will ask for this to be checked out. I do have multiple gall stones but they havent caused me enough bother for them to do anything either!!!.....perhaps if some of these doctors had to live with our symptoms on a day to day basis they would do more about these things. I did find I had itchy skin for a number of months when I was first diagnosed but this has settled thank goodness as I know the itching can be a real problem for some people, I guess I have been lucky here. I hope you get some more information from others on the board and like I said, check out support groups for PBC if not in your own country then check the ones out in the UK, I have found them so helpful, just like this one for my scleroderma Sincere regards Giorgigirl
  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 holiday and they made entry through the groin.....just wondering if this has had anything to do with it also.
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