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About danielle

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  1. Happy Holidays and a Happy New year to all. I wrote to you back in May and your help was very useful. My husband is now progressively worse with diffuse scleroderma. He has had pneumonia six times this year, and is in and out of hospital continually. I have had to leave our business to provide round the clock care (most days) and move into a ground floor flat for mobility purposes. He now suffers severe dizziness, blackouts, debilitating headaches (which last for days at a time) and his mobility is very limited. He struggles to even wash up as leaning over the sink causes him great pain. The refluxing is worse often leaving him choking and after a bout of that he often says he feels like he was drowning. He swells from his toes up past his hips and cannot walk and the pain is horrendous. Does anyone else suffer this? Steve also has lots of isolated red blotches over his arms and hands. He gets extremely hot, which makes his breathing and symptoms mentioned above escalate rapidly. His use of oxygen is daily and pretty much all day. I was told by the specialists he would be able to be 'maintained' yet I am looking at a man who is struggling to move off a sofa. I am at my wits end on what to do and how to make him more comfortable and terrified of what even the next few months hold. Any suggestions would be greatly appreciated. Danielle.
  2. Thank you for your well wishing, things are very chaotic at the moment. I have spoke to the Royal Free today who have called Steve in for an emergency appointment. We found out yesterday Steve has diabetes bought on by the steroids and yesterday was full of new symptoms. We have now been prescribed muscle relaxants, and nutritional shake so fingers crossed this will make a small difference. We will keep you posted, thanks for the advice.
  3. Hi Shelley, We found your message very informative, we have been to the doctors today, who have prescribed Steve muscle relaxants, so fingers crossed this will make a difference.
  4. Hi Sam, My partner on his right side of face is swollen from his jaw to his temple with tremendous pain, and very red round the swollen area. This is the first time he has experienced this and its getting worse, it has come from no where. If you find a solution please let me know. Danielle
  5. Hi guys, First of all I would just like to say how helpful this site is and secondly thank you for all the support, this site is a breath of fresh air and informative. This week has been full of highs and lows but we're learning to cherish the highs. We booked our wedding for next month and can't wait!!!!! :emoticons-yes: Steve has had many changes the last few weeks, leg swelling is reducing but lung pain is growing and breathlessness increasing. They have upped pain meds but it is not making much difference. Also in the last week his mouth is getting smaller (he's struggling to open it) with serious pain in jaw joint and over the top of his head (crippling). We are now in soup but a few mouthfuls and the pain is too bad so he won't eat any more. This concerns me greatly as he needs to eat for strength. Also with the head pain he is almost collapsing, increasingly dizzy and says his vision is getting 'mistier'. Can anyone offer any suggestions? Steve is now back in bed, he may manage to load the dishwasher or make a sandwich but he is getting more restricted. Also does any one else feel constantly sick but never actually are? Any suggestions would be greatly appreciated. Danielle
  6. Hi Shelley, Thanks for the post, it's so nice to see people take notice. This site has really opened up a release for us. Steve has been put on water tablets in last week which helps mildly with the swelling (at least you can make out a foot, ankle and leg). The methotrexate has gone up today. The pain has been pretty bad the last few days. On a bright note we had 5 days of Steve feeling nearly 'normal' (still with leg pain) but it was the first time he has sat in our pub for over a year. It's a real boost to see he can have good days as we haven't had that in over a year, so although he's more frustrated at relapsing, I'm pleased we had some quality time and laughs :-). Beginning to wonder what my next move will be as received appointment from Royal Free, 29th July, and he spent a week with them middle of March, and feel that this is far to long a wait in his current position. I understand that there is limited specialists and I am the 'neurotic' girlfriend, but this waiting game we've played for far to long and I can't help thinking that if we had been seen sooner and we wouldn't have spent time in hospitals that couldn't cope or knew nothing about the condition and he wouldn't have developed to this level. Maybe I'm wrong and now we're going back round this hamster wheel again, is this normal process? Thanks for listening, it's hard to explain to people when then don't understand and finding answers is difficult. xx
  7. hi, thanks for your response, We have seen specialists at the Royal Free in London and they seemed baffled by the swellings he displayed. He has been hospitalised with this and chest problems many times in the last year. We still have another 7 weeks before we go back to see if the methotrexate is working as he has been taken off Cellcept. He is still on 35 ml of steroids, they have just reduced it from 40, and it has been at that level for over 12 months. As for pain relief he already takes a strong opiate twice daily plus we have another one for break-through pain which is currently being used quite heavily. My concerns are surely on this level of medication his pain should subside but it just seems to get progressively worse and even when he has a 'good' day, (I haven't seen one now for at least 10 months which is becoming very disheartening) he still has to use the extra medication. Is there anything I can do to make this better as we seem to be banging our heads on the wall, and it is now very frustrating. I don't want miracles just the pain and swellings to be lessened so my partner has a better quality of life, as he is no longer able to walk very far and very rarely is able to do more than shuffle round our flat. Considering he was a fit healthy man a year and a half ago and woke up one day and this all appeared with only elbow pain as a symptom in the weeks running up to that day, for his own sanity I need to find answers and would be grateful for anyone who could give us some tips x
  8. I'm looking for some help. My partner was diagnosed 10 month ago but due to many hospital mix ups we have only just seen the specialists. He is on very strong pain medications. His legs are extremely swollen and he has lots of head pain, has anyone got any ideas that could help us with pain relief?
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