Discussion
Hi all.
I recently broke my Sacrum (bone consisting of 5 fused vertebrae in the lower spine) and have had surgery to plate and screw it back together. The healing was going well at first and I was mobile on crutches. Around 2 to 3 weeks ago however, what started as pins and needles in my feet has manifested itself into pain, if various levels based on what I'm doing.
At rest the pain is strong, to the extent it's hard to take my mind off, and sleep isn't possible. Any touching of the feet needs to be done extemely carefully, and should anything brush up against either foot, ie: a duvet, sock or putting trousers on, it's agony and I'll make quite a noise. If I put weight on my feet It's unbearable, and to do so with my full body weight when I stand causes my entire body to tense up and my mind to effectively go blank for a second, it's that bad. Once im on my feet my body gets better at dealing with it, but to walk a few feet is still excruciating and brings me to tears every time. Needless to say walking is pretty much a no go at the moment so I've gotten used to crawling around and climbing into my wheelchair, or onto the sofa or toilet. Luckily my family are around to help me with meals and other things I can't manage.
I've been prescribed a drug called gabapentin which helps block the nerves, which while it allows me to slightly take my mind of the pain when at rest, doesn't take much of it away. I've also been given oral morphine to be taken in the evenings to help me sleep. This has provided some decent results and I now generally get 4 or 5 hours sleep instead of 30 mins - 1 hr. Doctors say this is caused by the nerves healing. Sadly it's a very ambiguous time frame ranging from weeks, months, years or possibly indefinitely albeit with probably a slightly lesser level.
I've had 6 weeks full pay at work, I'm about to move on to 6 weeks half pay, after which it's SSP, which will cause huge problems. I've aware that I could then claim benefits, but I'm hoping I'll manage to make it to work before this, even if it's just wishful thinking.
Anyway, I posted up to see if anyone has experienced any similar injuries and had found anything useful for healing, relaxing or daily living. I've never experienced pain like this, despite breaking bones several times in the past. At this point, my life is potentially going to get pretty difficult, and so ill try anything. Herbal remedies, breathing techniques, stretches. It could help!
Thanks for reading
I recently broke my Sacrum (bone consisting of 5 fused vertebrae in the lower spine) and have had surgery to plate and screw it back together. The healing was going well at first and I was mobile on crutches. Around 2 to 3 weeks ago however, what started as pins and needles in my feet has manifested itself into pain, if various levels based on what I'm doing.
At rest the pain is strong, to the extent it's hard to take my mind off, and sleep isn't possible. Any touching of the feet needs to be done extemely carefully, and should anything brush up against either foot, ie: a duvet, sock or putting trousers on, it's agony and I'll make quite a noise. If I put weight on my feet It's unbearable, and to do so with my full body weight when I stand causes my entire body to tense up and my mind to effectively go blank for a second, it's that bad. Once im on my feet my body gets better at dealing with it, but to walk a few feet is still excruciating and brings me to tears every time. Needless to say walking is pretty much a no go at the moment so I've gotten used to crawling around and climbing into my wheelchair, or onto the sofa or toilet. Luckily my family are around to help me with meals and other things I can't manage.
I've been prescribed a drug called gabapentin which helps block the nerves, which while it allows me to slightly take my mind of the pain when at rest, doesn't take much of it away. I've also been given oral morphine to be taken in the evenings to help me sleep. This has provided some decent results and I now generally get 4 or 5 hours sleep instead of 30 mins - 1 hr. Doctors say this is caused by the nerves healing. Sadly it's a very ambiguous time frame ranging from weeks, months, years or possibly indefinitely albeit with probably a slightly lesser level.
I've had 6 weeks full pay at work, I'm about to move on to 6 weeks half pay, after which it's SSP, which will cause huge problems. I've aware that I could then claim benefits, but I'm hoping I'll manage to make it to work before this, even if it's just wishful thinking.
Anyway, I posted up to see if anyone has experienced any similar injuries and had found anything useful for healing, relaxing or daily living. I've never experienced pain like this, despite breaking bones several times in the past. At this point, my life is potentially going to get pretty difficult, and so ill try anything. Herbal remedies, breathing techniques, stretches. It could help!
Thanks for reading
I've an incomplete spinal cord injury, almost 14 yrs in, and suffer the same, right leg only, from mid thigh all the way down.
Tried pretty much every drug known to man, as well as most other forms of therapy.
I've often said if I was given the choice of walking again, but still in pain, or never walking again, but no pain, I'd choose the latter.
Pain can drive you to despair, it can ruin your life, take it over and become everything you think of.
The only way I cope is by keeping busy, I work and play pretty much non stop, keeping my mind off the pain, as soon as I think about it, i.e. Now, Christ it hurts.
Good luck in finding an answer, let me know if you find the golden ticket.
Tried pretty much every drug known to man, as well as most other forms of therapy.
I've often said if I was given the choice of walking again, but still in pain, or never walking again, but no pain, I'd choose the latter.
Pain can drive you to despair, it can ruin your life, take it over and become everything you think of.
The only way I cope is by keeping busy, I work and play pretty much non stop, keeping my mind off the pain, as soon as I think about it, i.e. Now, Christ it hurts.
Good luck in finding an answer, let me know if you find the golden ticket.
I have neuropathy in my feet, it is unknown whether it was caused by shingles, virus, heart issues or diabetes.
I have had all the nerve tests, and simply there is no resolution for me, just management. It may improve and may not.
I have been slowly given different types of medicine, and currently on amitripyiline, lyrica and 60mg codeine up to 4 times per day. TBH the codeine doesn't really touch it, just takes the edge off it. I am off back to the doctors to see what else can be done, if I don't nag them then I don't get anywhere.
I also have a problem that some of the medicines are not useful for my heart condition.
As a result I decided to try CBD as an alternative to codeine, it seemed to work for about a week but the pain came back with a vengeance.
Sleeping is a barsteward, at times. And the effects of the chemicals can make you feel tired the next day.
Whilst I didn't have a similar cause as the OP, I have full sympathy for the pain and discomfort you are experiencing
I have had all the nerve tests, and simply there is no resolution for me, just management. It may improve and may not.
I have been slowly given different types of medicine, and currently on amitripyiline, lyrica and 60mg codeine up to 4 times per day. TBH the codeine doesn't really touch it, just takes the edge off it. I am off back to the doctors to see what else can be done, if I don't nag them then I don't get anywhere.
I also have a problem that some of the medicines are not useful for my heart condition.
As a result I decided to try CBD as an alternative to codeine, it seemed to work for about a week but the pain came back with a vengeance.
Sleeping is a barsteward, at times. And the effects of the chemicals can make you feel tired the next day.
Whilst I didn't have a similar cause as the OP, I have full sympathy for the pain and discomfort you are experiencing
Welcome to the nerve damage club OP.
I suffer from neuropathy in feet, legs & hands, all caused by diabetes. I take a combination of Gabapentin & Amitripyiline & Codein etc to take the edge off the pain. The biggest problem I find is that I am unable to sleep much at all averaging 4 - 5 hours a night is the maximum.
Taking more of Gabapentin & Amitripyiline makes me like a zombie all day trying to stay awake.
I wish you well OP.
I suffer from neuropathy in feet, legs & hands, all caused by diabetes. I take a combination of Gabapentin & Amitripyiline & Codein etc to take the edge off the pain. The biggest problem I find is that I am unable to sleep much at all averaging 4 - 5 hours a night is the maximum.
Taking more of Gabapentin & Amitripyiline makes me like a zombie all day trying to stay awake.
I wish you well OP.
Having responded to this thread, I started thinking about alternatives again.
Something that the Germans treat neuropathy with is alpha lipoic acid (apparently you need the r variety). It's an antioxidant.
Might give that a go, a tad expensive though, £30 ish for 100 tablets or 50 doses.
Something that the Germans treat neuropathy with is alpha lipoic acid (apparently you need the r variety). It's an antioxidant.
Might give that a go, a tad expensive though, £30 ish for 100 tablets or 50 doses.
I switched from gabapentin to carbamezapine for my TN. Found it worked much better. I'd avoid amitriptyline, in larger doses, like many drugs that treat neural pain (Consultant - "We don't actually know how these work") it's an anti-depressant and will zombie-fy you - as another poster has noted.
It might be an idea to keep a diary, noting when you're in more pain, and when things are easier. It would allow you to see if there's a pattern, which will help you make the right changes.
Things to look out for are how you are:
Things to look out for are how you are:
- at the beginning/middle/end of the day.
- when you're stressed (muscles tense putting pressure on nerves).
- after you've eaten (stomach expands putting pressure on nerves).
- when it's cold/damp.
My OH suffers from something very similar. See the attached:-
https://www.pistonheads.com/gassing/topic.asp?h=0&...
As mentioned, her symptoms have been a lot worse in the last week since she flew short-haul in a cramped seat.
I think we have resigned ourselves to the fact that she will never get complete feeling back but managing the pain/discomfort would be a start
https://www.pistonheads.com/gassing/topic.asp?h=0&...
As mentioned, her symptoms have been a lot worse in the last week since she flew short-haul in a cramped seat.
I think we have resigned ourselves to the fact that she will never get complete feeling back but managing the pain/discomfort would be a start
Thanks for the replies everyone.
Sorry to hear a few of you suffering with these symptoms for such long periods of time, I really feel for you. I've hardly been able to cope with a few weeks let alone several years.
Most of the medicines you've stated I've been prescribed, some work and some don't. Interesting to hear about the alpha lipoic acid though. As for switching to carbamezapine, is this something my GP would allow on NHS or is it something I'd have to buy elsewhere?
Keeping a diary is a good idea. My parents and I note down better days, worse days and what drugs worked well and when. Means we've come up with a system that minimizes my time spent in huge pain, at least to some extent. When the pain first started it was awful and nothing we did seemed to work.
Thanks again for all the input, it's very helpful
Sorry to hear a few of you suffering with these symptoms for such long periods of time, I really feel for you. I've hardly been able to cope with a few weeks let alone several years.
Most of the medicines you've stated I've been prescribed, some work and some don't. Interesting to hear about the alpha lipoic acid though. As for switching to carbamezapine, is this something my GP would allow on NHS or is it something I'd have to buy elsewhere?
Keeping a diary is a good idea. My parents and I note down better days, worse days and what drugs worked well and when. Means we've come up with a system that minimizes my time spent in huge pain, at least to some extent. When the pain first started it was awful and nothing we did seemed to work.
Thanks again for all the input, it's very helpful
Quattromaster said:
carinatauk said:
Something that the Germans treat neuropathy with is alpha lipoic acid (apparently you need the r variety). It's an antioxidant.
.
Looks interesting, I'll be taking a look into this further. Thanks..
Quattromaster said:
Quattromaster said:
carinatauk said:
Something that the Germans treat neuropathy with is alpha lipoic acid (apparently you need the r variety). It's an antioxidant.
.
Looks interesting, I'll be taking a look into this further. Thanks..
Quattromaster said:
carinatauk said:
Your my tester for this, how are things progressing? when I read about it there was one suggestion it took a few weeks to start working
Only 6 days in at the moment, 2 x 300mg a day.No change at present. But on a positive note, no side effects either.
My father has been suffering with neuropathy from a stroke a few years back, in particular with his left leg.
Given that he's a Prof of Physiology he's not swayed by magic remedies or anecdotal evedince.
Recently he's been taking tumeric capsules and despite being acutely aware of any placebo effect he seems to be making good improvements in mobility and pain management.
There do appear to be a few medical studies indicating that there could be an effect, however most I've read appear to be anecdotal and conclude that more study is required.
Curcumin has a low bio-availability so if you were to try some get the capsules that contain piperine as well.
I had a disc collapse at C6-C7 and for months suffered with pain in my shoulder, elbow and wrist that I could only describe as being worse than tooth ache, so I feel your pain so to speak.
From what you've described it has to be worth a try, I really hope you get some respite.
Given that he's a Prof of Physiology he's not swayed by magic remedies or anecdotal evedince.
Recently he's been taking tumeric capsules and despite being acutely aware of any placebo effect he seems to be making good improvements in mobility and pain management.
There do appear to be a few medical studies indicating that there could be an effect, however most I've read appear to be anecdotal and conclude that more study is required.
Curcumin has a low bio-availability so if you were to try some get the capsules that contain piperine as well.
I had a disc collapse at C6-C7 and for months suffered with pain in my shoulder, elbow and wrist that I could only describe as being worse than tooth ache, so I feel your pain so to speak.
From what you've described it has to be worth a try, I really hope you get some respite.
Jesus, some sobering stuff here, I think I have a nerve issue in my back, very minor, just annoying and it comes and goes, apparently down to some wear in my spine, its like an electric current being passed through my mid back or someone tapping their fingers on it, nothing like any of this though, with rest, pain killers and a hot bath it can be persuaded to stop, so guess I am lucky. Doc did Bone Density scans and it cam back normal thankfully, just told me to take Calcium supplements.
I find that exercise helps it, back extensions, guess it strengthens the muscles around it.
I find that exercise helps it, back extensions, guess it strengthens the muscles around it.
Hi all, thanks for the replies and sharing your stories. It's all helped me along the way.
The update for me is mostly good news. After dealing with the severe nerve pain for about 6 weeks, it's now gone, almost as quickly as it set in, taking around 7-9 days. I'm not sure if anything I did really helped, for me it seems the body just got over it which is lucky. There is still residual pain in a tendon in my left foot, and my lower legs are both extremely tight and sore, but it's much better than the neuropathy.
Medication didn't seem to work much for me at all to be honest, so I won't recommend anything as a treatment. As pain relief however, I'll mention the liquid oramorph (morphine sulfate) that i obtained on prescription. It was the only thing strong enough to ease the pain at night and allow me a few hours of precious sleep.
Keeping active was definitely important, and I'd suggest getting in a swimming pool for anyone suffering similar symptoms to mine. Keeping well fed and drinking water too was definitely a good move. Planning my days in advance to accommodate personal activity, making sure to keep regular contact with friends and family for me was a must to keep a good mood.
Overall this has been an incredibly trying period for me. It's the longest I've been of work since leaving school at 16 (now 27) and despite all the literal pain I've had, the toughest challenge for me was keeping my spirits up and remaining mentally sound. I can now hop along on crutches, although my legs are massively weakened, and my left leg won't quite go straight. Amazingly I can also drive my car which gives me a bit of freedom. Apart from a sickness bug I've been struggling with this week I'm pretty happy.
To those of you still battling nerve damage, pain, or any health complications, I wish you the best of luck and sincerely hope you can make some progress to offer you solace.
Cheers
The update for me is mostly good news. After dealing with the severe nerve pain for about 6 weeks, it's now gone, almost as quickly as it set in, taking around 7-9 days. I'm not sure if anything I did really helped, for me it seems the body just got over it which is lucky. There is still residual pain in a tendon in my left foot, and my lower legs are both extremely tight and sore, but it's much better than the neuropathy.
Medication didn't seem to work much for me at all to be honest, so I won't recommend anything as a treatment. As pain relief however, I'll mention the liquid oramorph (morphine sulfate) that i obtained on prescription. It was the only thing strong enough to ease the pain at night and allow me a few hours of precious sleep.
Keeping active was definitely important, and I'd suggest getting in a swimming pool for anyone suffering similar symptoms to mine. Keeping well fed and drinking water too was definitely a good move. Planning my days in advance to accommodate personal activity, making sure to keep regular contact with friends and family for me was a must to keep a good mood.
Overall this has been an incredibly trying period for me. It's the longest I've been of work since leaving school at 16 (now 27) and despite all the literal pain I've had, the toughest challenge for me was keeping my spirits up and remaining mentally sound. I can now hop along on crutches, although my legs are massively weakened, and my left leg won't quite go straight. Amazingly I can also drive my car which gives me a bit of freedom. Apart from a sickness bug I've been struggling with this week I'm pretty happy.
To those of you still battling nerve damage, pain, or any health complications, I wish you the best of luck and sincerely hope you can make some progress to offer you solace.
Cheers
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