Hi all,
I thought it was about time I updated you on my painful feet
seeing as you were all so kind with your suggestions.
- see previous post
http://www.thelupussite.com/forum/showthread.php?t=70432&highlight=painful+feet
The tegretol has actually had a very good effect. I mean my feet are stilll rather "tender" and I can't stand that long but they have hugely improved (the neuro asked me how I would express the improvement in % and I said 70%) and I actually dare go and do a little shopping now and then and no longer find myself sat on the floor or in tears. My little "trip" to Ireland last week would have been sheer torture without this improvement. I still have quite a bit of pain in the heel but can get relief from standing forward a bit on the balls and toes which a month ago would have been impossible. I don't even know if the heel pain is the same thing. It might not be. My hands have also almost completely stopped hurting at night, so obviously the two really were linked.
I saw the neuro again today and she has asked me to increase the dose of tegretol further just to see if I obtain any further relief. If I do, then great, if not, we'll drop the dose back down to where it is now.
The neuro also did an EMG. I had wondered why she had decided to do it herself but apparently she was a bit doubtful about the last one of my legs. The report seems to have disappeared somewhere and the only comment she has is "normal" which she found odd as it didn't tie in with physical examination. Anyway, she did both legs and hands/arms again. The hands/arms are much the same, a slight worsening, but very slight. She says the legs are no way normal as she had quite a lot of difficulty actually doing the tests. She often had trouble finding the right "spot" and testing properly (which wanst' the case with the hands/arms). I then had to guide her when she did finally hit the spot as she couldn't "see" anything on her machine. It's not particularly serious as the nerves definitely work but she says I have significantly reduced sensitivity. I actually knew that but it's cool that someone actually believes me now!
Don't ask me more on the technical side of it, it's all pretty new to me this nerve stuff and I get mixed between the French and English. I'll probably understand more when I have seen her report as I'll have time to read it through. She had explained to me before that there are two types of neuropathy. She described one as affecting the "electric cables" inside us and the other affecting the "coating" of those cables. I don't know which kind I have and I suppose it doesn't matter much so long as things remain stable.
I've probably explained all that in the most unclear way possible :lol: Sorry if I have. I haven't posted much these last few days as I have been so utterly exhausted but I managed to sleep really well last night and another two and a half hour "nap" this afternoon so I thought I'd give it a go!
hugs to all and thanks again for all your suggestions. Here's hoping it continues to improve!
Katharine
I thought it was about time I updated you on my painful feet
- see previous post
http://www.thelupussite.com/forum/showthread.php?t=70432&highlight=painful+feet
The tegretol has actually had a very good effect. I mean my feet are stilll rather "tender" and I can't stand that long but they have hugely improved (the neuro asked me how I would express the improvement in % and I said 70%) and I actually dare go and do a little shopping now and then and no longer find myself sat on the floor or in tears. My little "trip" to Ireland last week would have been sheer torture without this improvement. I still have quite a bit of pain in the heel but can get relief from standing forward a bit on the balls and toes which a month ago would have been impossible. I don't even know if the heel pain is the same thing. It might not be. My hands have also almost completely stopped hurting at night, so obviously the two really were linked.
I saw the neuro again today and she has asked me to increase the dose of tegretol further just to see if I obtain any further relief. If I do, then great, if not, we'll drop the dose back down to where it is now.
The neuro also did an EMG. I had wondered why she had decided to do it herself but apparently she was a bit doubtful about the last one of my legs. The report seems to have disappeared somewhere and the only comment she has is "normal" which she found odd as it didn't tie in with physical examination. Anyway, she did both legs and hands/arms again. The hands/arms are much the same, a slight worsening, but very slight. She says the legs are no way normal as she had quite a lot of difficulty actually doing the tests. She often had trouble finding the right "spot" and testing properly (which wanst' the case with the hands/arms). I then had to guide her when she did finally hit the spot as she couldn't "see" anything on her machine. It's not particularly serious as the nerves definitely work but she says I have significantly reduced sensitivity. I actually knew that but it's cool that someone actually believes me now!
Don't ask me more on the technical side of it, it's all pretty new to me this nerve stuff and I get mixed between the French and English. I'll probably understand more when I have seen her report as I'll have time to read it through. She had explained to me before that there are two types of neuropathy. She described one as affecting the "electric cables" inside us and the other affecting the "coating" of those cables. I don't know which kind I have and I suppose it doesn't matter much so long as things remain stable.
I've probably explained all that in the most unclear way possible :lol: Sorry if I have. I haven't posted much these last few days as I have been so utterly exhausted but I managed to sleep really well last night and another two and a half hour "nap" this afternoon so I thought I'd give it a go!
hugs to all and thanks again for all your suggestions. Here's hoping it continues to improve!
Katharine