I have horrendous nerve pain from my shoulder to the ends of my fingers, in the bottom of my left leg and the top of both thighs its constant and im totally fed up with it, its like im being crushed hard in those places. I was put on amytriptalene a while back and its been upped and upped but its still very hard to cope with. Does anyone have anything that works for them (besides getting blind drunk lol) Krissy xx
Hi Krissy, I know how severe nerve pain can get you down.
Back in 2000 I had chronic nerve pain, in the back of my thighs and bum cheeks, so bad that it made me bad tempered and totally fed. I was put on amitriptyline, starting on 20mg a day. The dose was increased to 100mg at night, before it zapped the pain.
Sometime later a different neuro said she wanted to get the dose down, so 75mg was ok. But then she wanted me to go down to 50mg, which I did. Then BAM!! The pain came back with a vengeance. I returned to 75mg and have been on that ever since and it does work for me, with no side effects.
Last Sept I saw another neuro about heel pain. This is like your description of being crushed in a vice. For 2 years, it was thought this pain was pressure pain. I tried several types of heel protectors in bed and a variety of pressure relief mattreses…nothing helped. So then it was decided it must be nerve pain.
I went on pregabalin…75mg x 2 a day. At first it made me woozy, so I reduced the dose until I got used to it. Then it reduced the heel pain for a while. But it stopped helping and yesterday I upped the dose (via GP) to 75mg x 3 a day.
There is also a nerve pain drug called gabapentin, which folk talk about here. I havent tried that one.
Perhaps you can talk to your GP/neuro/MS nurse about these nerve pain meds, eh?
luv Pollx
Hi Krissy, I was put on amitriptyline for neuropathic pain but this was only increased up to 50mg once a day at bedtime. Because it wasn’t helping the docs added in gabapentin which again was gradually upped until I was taking 1200mg three times a day. I was having to take 6 - 800mg of tramadol a day too, just to function through the pain. If the amitriptyline isn’t working as a sole therapy you should definitely be started on something like gabapentin too. I’m on 150mg of venlafaxine daily for depression and some more recent antidepressants (compared to amitriptyline) like venlafaxine have been shown to effectively minimise neuropathic pain. Didn’t work for me - pain specialist says I have ‘intermittent, spontaneous central neuropathic pain’ and took me off the other pain meds and put me on one called Tapentadol which is an opiate type with added sorts of activity. BUT has the major disadvantage that you absolutely cannot take any alcohol whilst on them. This really did ruin my Christmas. And New Year was a little dull also. I did think the ‘no alcohol’ advice might be just them being overly cautious so I ignored it on a Christmas night out and had a couple of glasses of red… REALLY not a good idea. I’m sure I was still a good long way from the ‘coma and death’ they talked about on the warning leaflet, but I definitely was close enough to peek over the edge of the precipice… Anyway, Krissy, you have pharmaceutical options aplenty at this stage so make sure your GP or your MS nurses work with you to find the combination of meds that works best for you. Chronic pain is exhausting and utterly demoralising but there IS help out there. Good luck!!
Thanks for your advice, it’s very much appreciated. I am seeing my consultant soon though not sure how long i’ll wait as I was seeing him privately because of the long wait but obviously I dont have the funds to do that anymore and I wont go to my doctor as he has been awful in all of this and not helped much at all, I dont know what an MS nurse is but I shall enquire Thanks Krissy xx
Hi again.
As your GP has been so awful, you must change your GP…either to another in the same practice, or a different practice altogether.
If you have been diagnosed with MS, you should be able to get access to an MS nurse.
luv Pollx
Im reading this with intrest, I am suffering very badly with neve pain, in fact it woke me from my sleep. I have stabbing pain in my toes and cramps and shooting pains in my legs. What Im wondering is I had 2 glasses of red wine last night and i wonder could this have had an adverse effect on my existing pain
Im reading this with intrest, I am suffering very badly with neve pain, in fact it woke me from my sleep. I have stabbing pain in my toes and cramps and shooting pains in my legs. What Im wondering is I had 2 glasses of red wine last night and i wonder could this have had an adverse effect on my existing pain
Yea I am in the process of changing surgeries Poll as I asked if could change doctors within my practise and was told they would have a meeting about it and decide, which I think is awful, I should have the right to choose so im ditching them altogether, which I should of done ages ago tbh as they have let me down a lot. Anon, I have found that the opposite happens with me, ie I feel less pain if I have alcohol, fortunately I cannot have alcohol due to bladder issues or I may have uaed it to help my pain… Not a goid idea Krissy x
I take gabapentin which has helped but, due to kidney disease I can only take 1800 mg a day which isn’t enough to manage the pain totally, at night my hands and feet burn and my arms hurt soooo much I want to cut them off, I think I need to add in something else. Nerve pain is so horrible I do sympathise with you.
I take gabapentin which has helped but, due to kidney disease I can only take 1800 mg a day which isn’t enough to manage the pain totally, at night my hands and feet burn and my arms hurt soooo much I want to cut them off, I think I need to add in something else. Nerve pain is so horrible I do sympathise with you.