Holly,
Am glad you liked the article.
I agree with your sentiments re PT.
I'm not sure what treatments you have already tried and therefore what other treatments there are left for you to try. Have you been prescribed any medications at all? I read that gabapentin and pregabalin are sometimes given for pn; I tried them for my fibromyalgia and, unfortunately, both drugs befuddled and fogged my brain really badly and I suspect that the pregabalin triggered my getting a condition called ocular myasthenia gravis, as myasthenia gravis causes muscle weakness and a side effect of pregabalin is muscle weakness - albeit any muscle weakness is supposed to be dose-related and only temporary, i.e. it should go when the drug is stopped. I also gather that Botox is sometimes used for pn and there's such a thing as an intrathecal pain pump....but being a newbie I have no idea about the details of those, their pros and cons etc. What concerns you the most about neurostimulation? It will be so interesting to hear what Dr B suggests.
What to expect in London?
Re: What to expect in London?
Hi Dusty,
Thank you for your post. I have tried lots of different medication, I felt VERY weird when I took gabapentin but am currently tolerating 300mg pregabalin daily. I wouldn't want to take any more. I have tried other ideas of various specialists but the pregabalin has been the most effective. I'm really sorry to hear it doesn't work at all well for you. Yes, the brain fog is bad but the muscle weakness sounds more serious, you have been extremely unlucky.
I haven't tried Botox or a pain pump. The latter is probably in the same category as neurostimulation for me - I don't suffer sufficiently. Clearly that makes me very fortunate but it is nonetheless a problem to have life curtailed (by that I mean my inability to join in a sporty family) but still be able to function in a low key way. The pregabalin definitely helps but I'm not the person I was and 11 years on I still find it hard to accept.
The effectiveness of PT debate interests me - I wonder if my sudden onset PN could possibly be helped after all this time. I have no other injuries (past or present) or obvious causes other than I was really keen on exercise before the day I found myself with pain that has been with me ever since. I think I probably have to work on accepting my lot rather than chasing to improve matters. When i have my next patch of bad days I will review that. I always do.
You are becoming very knowledgable very quickly! It does sound as though you are in an unbearable position though. You really do need to gain some better control very soon. I really hope this will be possible for you.
Take care,
Holly
Thank you for your post. I have tried lots of different medication, I felt VERY weird when I took gabapentin but am currently tolerating 300mg pregabalin daily. I wouldn't want to take any more. I have tried other ideas of various specialists but the pregabalin has been the most effective. I'm really sorry to hear it doesn't work at all well for you. Yes, the brain fog is bad but the muscle weakness sounds more serious, you have been extremely unlucky.
I haven't tried Botox or a pain pump. The latter is probably in the same category as neurostimulation for me - I don't suffer sufficiently. Clearly that makes me very fortunate but it is nonetheless a problem to have life curtailed (by that I mean my inability to join in a sporty family) but still be able to function in a low key way. The pregabalin definitely helps but I'm not the person I was and 11 years on I still find it hard to accept.
The effectiveness of PT debate interests me - I wonder if my sudden onset PN could possibly be helped after all this time. I have no other injuries (past or present) or obvious causes other than I was really keen on exercise before the day I found myself with pain that has been with me ever since. I think I probably have to work on accepting my lot rather than chasing to improve matters. When i have my next patch of bad days I will review that. I always do.
You are becoming very knowledgable very quickly! It does sound as though you are in an unbearable position though. You really do need to gain some better control very soon. I really hope this will be possible for you.
Take care,
Holly
-
Dusty_in_Hope
- Posts: 119
- Joined: Sat Jul 11, 2015 2:11 pm
Re: What to expect in London?
Hi Holly
Thank you for your kind words and good wishes.
I guess I am in rather a pickle, to say the least, but I'm going to investigate the treatments listed on this page http://www.pudendalhope.info/node/20 as there do seem to be at least a couple of drugs mentioned that I haven't tried before (for my fibro), so maybe I might be offered something other than gabapentin or pregabalin for this pn-like pain that now besets me - with fingers crossed that I won't react badly to them.
I am not surprised that the pregabilin helps you as - apart from the brain fog and the possible associated ocular muscle weakness - although I wasn't on it for long, it was nevertheless the only thing that made any improvement to my fibromyalgia pain....on just a very low dose I noticed that my muscles were less stiff in the mornings and they were also a little bit less painful. (My getting myasthenia could have been coincidental to me taking pregabalin as it came upon me post-menopause along with hypothyroidism - which often occurs post-menopause - and hypothyroidism has a connection with myasthenia (both being auto-immune diseases); I'm somewhat grateful that what triggered it isn't certain, so that I can't blame myself for anything.)
No consolation I know, but from my own experience of having to live with fibromyalgia for over 18 years, I too still find it hard to accept - usually on my 'bad' days. I have stopped chasing a cure for it though, but I still try to keep up to date with the latest theories and potential treatments.
I guess I am, as you say, becoming knowledgeable about pn quite quickly - but that's mostly down to you and the other lovely helpful people here on this forum
You take care too and....
Good luck with Mr B.
Dusty
Thank you for your kind words and good wishes.
I guess I am in rather a pickle, to say the least, but I'm going to investigate the treatments listed on this page http://www.pudendalhope.info/node/20 as there do seem to be at least a couple of drugs mentioned that I haven't tried before (for my fibro), so maybe I might be offered something other than gabapentin or pregabalin for this pn-like pain that now besets me - with fingers crossed that I won't react badly to them.
I am not surprised that the pregabilin helps you as - apart from the brain fog and the possible associated ocular muscle weakness - although I wasn't on it for long, it was nevertheless the only thing that made any improvement to my fibromyalgia pain....on just a very low dose I noticed that my muscles were less stiff in the mornings and they were also a little bit less painful. (My getting myasthenia could have been coincidental to me taking pregabalin as it came upon me post-menopause along with hypothyroidism - which often occurs post-menopause - and hypothyroidism has a connection with myasthenia (both being auto-immune diseases); I'm somewhat grateful that what triggered it isn't certain, so that I can't blame myself for anything.)
No consolation I know, but from my own experience of having to live with fibromyalgia for over 18 years, I too still find it hard to accept - usually on my 'bad' days. I have stopped chasing a cure for it though, but I still try to keep up to date with the latest theories and potential treatments.
I guess I am, as you say, becoming knowledgeable about pn quite quickly - but that's mostly down to you and the other lovely helpful people here on this forum
You take care too and....
Good luck with Mr B.
Dusty
-
davis42727
- Posts: 1
- Joined: Sat Apr 30, 2016 10:53 am
- Location: Philippines
- Contact:
Re: What to expect in London?
I hope I know that Dr so that I can reply to your concern, I know some Professor in London but London is too big to know that specific person or Dr.Anyways, hoping that you will be Okay in the long run.
Study Tours