Hi Everyone
I see it was June I believe since I last physically posted here, though I have checked in. I am so sorry for my absence, but I was physically unable to post.
I have had a very difficult few months, unfortunately I suffered a stroke in mid July, which left me right side slightly paralysed, and speech difficulties, this was entirely attributed to my APS. Lots of tests obviously, and lots of input from all consultants involved in my care.
I am pleased to say things are gradually improving, least regards the stroke after affects, I am having physiotherapy 2 x week, and have been speech therapist, day at a time.
On the Lupus side of things, I have found myself caught up in a differing of opinions between my GP and Rheumatologist. I still suffer dreadful burning pains in my joints, moreover my feet and hands, and the only thing that gave me any sort of relief for any length of time was Dexamethsone shots.
My Rhuematologist asked my GP to commence monthly shots to save my having to trek up to the hospital, unfortunately he was not keen to adminster this, two fold, he prefers to give steroids orally for better control, plus he was not happy to give me either shots or pills until I have a bone scan. He also feels that we had not explored all avenues to try to get my pain under control, so far Gabapentin not able to tolerate even a therapuetic dose and the same for Pregablin.
As you know my GP has been my most staunch rock, and I do see his point, so I agreed to a trial of two new antidepressants supposedly effective for pain, Venalfaxine, total disaster, very very ill on this, so then moved to Cymbalta, both at 60 mgs.
The Cymbalta in my view is the most evil drug I have ever encountered, it had me hallucinating, and I did not sleep a wink for 4 days, on the 5th day I found myself seriously contemplating harm to myself, and I have never had those thoughts, and I stopped taking it on day 6. I see my GP tomorrow for review, but I am not prepared to trial anymore medications of this nature, in fact I wish to go back on the Amitryptiline which at least tapers the pain off, and ensure I get at least a result sleep.
Sadly thus far, the Plaquenil does not seem to have remarkably improved things, but on the positive the headaches have lessened, and the temperature spiking stopped, but I am still suffering dreadful fatiguge, joint pains and chills.
I have removed myself of the discussions between my GP and Consultant as the stress of trying to please everyone was not helping me at all, so down to them to sort this out, and put their thoughts to me. I see my Consultant Rheumatololgist again in 3 weeks.
Please know that I am still absolutely thrilled at the care I have received from everyone so far, really they are all trying to help me so much, but I have a hard enough time coping with day to day things if you understand me.
I try to remain positive, its not in my nature to be honest to curl up or give up, and I still take an awful lot of inspiration from some of you remarkable folk here, who have been on this journey a lot longer than I.
What I have found distressing is all but one or two friends have stopped calling, and returning my calls or mails, and the very nature of this disease can leave you feeling somewhat isolated, my family however have been super.
Sorry so long everyone, and now my co-ordination skills are improving I hope to seriously try to input here.
I see it was June I believe since I last physically posted here, though I have checked in. I am so sorry for my absence, but I was physically unable to post.
I have had a very difficult few months, unfortunately I suffered a stroke in mid July, which left me right side slightly paralysed, and speech difficulties, this was entirely attributed to my APS. Lots of tests obviously, and lots of input from all consultants involved in my care.
I am pleased to say things are gradually improving, least regards the stroke after affects, I am having physiotherapy 2 x week, and have been speech therapist, day at a time.
On the Lupus side of things, I have found myself caught up in a differing of opinions between my GP and Rheumatologist. I still suffer dreadful burning pains in my joints, moreover my feet and hands, and the only thing that gave me any sort of relief for any length of time was Dexamethsone shots.
My Rhuematologist asked my GP to commence monthly shots to save my having to trek up to the hospital, unfortunately he was not keen to adminster this, two fold, he prefers to give steroids orally for better control, plus he was not happy to give me either shots or pills until I have a bone scan. He also feels that we had not explored all avenues to try to get my pain under control, so far Gabapentin not able to tolerate even a therapuetic dose and the same for Pregablin.
As you know my GP has been my most staunch rock, and I do see his point, so I agreed to a trial of two new antidepressants supposedly effective for pain, Venalfaxine, total disaster, very very ill on this, so then moved to Cymbalta, both at 60 mgs.
The Cymbalta in my view is the most evil drug I have ever encountered, it had me hallucinating, and I did not sleep a wink for 4 days, on the 5th day I found myself seriously contemplating harm to myself, and I have never had those thoughts, and I stopped taking it on day 6. I see my GP tomorrow for review, but I am not prepared to trial anymore medications of this nature, in fact I wish to go back on the Amitryptiline which at least tapers the pain off, and ensure I get at least a result sleep.
Sadly thus far, the Plaquenil does not seem to have remarkably improved things, but on the positive the headaches have lessened, and the temperature spiking stopped, but I am still suffering dreadful fatiguge, joint pains and chills.
I have removed myself of the discussions between my GP and Consultant as the stress of trying to please everyone was not helping me at all, so down to them to sort this out, and put their thoughts to me. I see my Consultant Rheumatololgist again in 3 weeks.
Please know that I am still absolutely thrilled at the care I have received from everyone so far, really they are all trying to help me so much, but I have a hard enough time coping with day to day things if you understand me.
I try to remain positive, its not in my nature to be honest to curl up or give up, and I still take an awful lot of inspiration from some of you remarkable folk here, who have been on this journey a lot longer than I.
What I have found distressing is all but one or two friends have stopped calling, and returning my calls or mails, and the very nature of this disease can leave you feeling somewhat isolated, my family however have been super.
Sorry so long everyone, and now my co-ordination skills are improving I hope to seriously try to input here.
