feel so unwell

[MCC]

I'm really sorry you are in so much pain. Hugs x

[Sangye]

I'm so sorry, Gwen. I've had that kind of joint pain and it is unbearable. It usually indicates highly active Wegs. Also, when my lungs were fully hemorrhaging I only had a dry cough. I'm worried about you. It doesn't sound like things are under control at all and that they're trying to manage it only with pred.

[gwenllian111]

I've been on cylco since I was 14 years old, but as I got older, the side effects became of an allergic type. I have serious nausea, diorreah, high temp, inflammed heart and lungs, and liver failure - which sounds horrendous, but I suppose they would use it again if it was a matter of life or death. Very last resort though.
Thanks Chris - I just sent the hospital secretaries an email asking for the doctor to leave a prescription for tramadol for me to pick up at some point throughout the day. The lack of sleep due to pain is strating to get me down a bit now. Also, I was thinking of asking to be referred to a physio or occupational therapist for help with aids. Does anyone else have aids to help, ie. walking sticks etc?

[gwenllian111]

I'm so sorry, Gwen. I've had that kind of joint pain and it is unbearable. It usually indicates highly active Wegs. Also, when my lungs were fully hemorrhaging I only had a dry cough. I'm worried about you. It doesn't sound like things are under control at all and that they're trying to manage it only with pred.

Hi Sangye, that's what I was worried about was a huge flare lurking around the corner too. My cough is up and down at the moment, but I dread the moment when I hit to point of no return, if you know what I mean.

How are you?

[pberggren1]

Gee Gwen, this is very serious. It sure sounds like a flare to me. I would get to your main hospital where your Wegs doc is right away. This has to be addressed now.

[gwenllian111]

I'm seeing my gp this morning, hopefully rheum at some point this week. thank you so much for your kind replies, it really really helps and I don't feel so alone.

[DEE]

Thanks Dee. Come to think of it when I was in hospital last week I was on tramadol and it helped a lot, but I don't have any at home. I will have to ask the doctor for some when I next go to clinic.
Do you ever find that the pain eases when you're up and around in the day? It's the night time pains that I struggle with so badly particularly.

Hi Gwen
yes I take mine first thing and it gives me some relief throughout the day and then I take again an hour before bed . In answer to aids question I use a walking stick ,would not go far without it .

[Psyborg]

I hope your doctors are able to figure something out for you as soon as possible. I think the not knowing part is almost as bad as the pain sometimes, like the anticipation of waiting for the other shoe to fall. I hope they can figure out some immuno suppressant that will work for you

[Sangye]

Gwen, please never feel alone. Remember that you can post on here day or night and someone will reply. And you can always PM me.

I wish I could be there to whisk you to your doctor's office and tell them, "DO something for this woman!" 'Cause you know if anyone could get them to listen, it would be me.

[watersedge]

Sorry for all your pain, you are so young and have had this for such a long time. You should go to the hospital and refuse to leave until they do something and listen to how it is affecting you. Hope you find some relief soon.