Last reply 1 year ago
Neuropathic Pain

Hi Guys,
Been a while since I posted here.
I’ve been suffering lately with sharp shooting pains going through my arms and legs. My ms nurse says it sounds like neuropathic pain.
Me being me and being sceptical about what these people tell me would like to know if other people suffer the same thing and how it feels to them.

Sometimes I feel like i’m making the pain up when it comes and goes but when it comes it’s sharp then i remember that the pain is very real.

Thoughts?

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stumbler
1 year ago

Hi @dukes0445 and welcome back.

Here’s some details of neuropathic pain. Have a read and see what you think :-

https://www.mstrust.org.uk/a-z/altered-sensations


naomih
1 year ago

Drugs…ask for drugs… If not working, take more drugs…if still nit working, change drugs…drugs…drugs…drugs!!!! then when drugs work, stop taking them… It just proves
That you NEED drugs!!!


dukes0445
1 year ago

@stumbler – thank you. I will have a look.
I just wondered how it felt for other people.


Anonymous
1 year ago

Hey @dukes0445

Sorry to hear about your pain. I also suffer from Neuropathic pain. I get it in my legs, feet, arms and hands. It is like a randond sharp shooting pain and it comes out of nowhere. It can last a few seconds to a few minutes at a time and in can coem just once a day or several times a day. Sometimes I am just sitting watching TV and then you feel like jumping as it can take you so by surprise. I know what you mean about feeling like like we are making it up, cause it is so random it is hard to tell people and as it passes I used to think that was it but it keeps coming back.

I also get buzzing sensations in my legs when I walk – or if I stand on those raised paving stones for the blind at crossings – they can send shooting shock waves up my legs lol I am currently on Gabapentin for this, I upped the does of this at the end of last year and it is helping more now but maybe the dose needs to be higher for me. I take 300mg 3x a day. Maybe you could as you GP or MS nurse about going onto Gabapentin? I think there are other drugs out there for this type of pain, I believe Gabapentin is considerd the starting point.

Anyway – hope things settle down for you and if you need any more information or want to ask me any questions feel free.

Take Care
Avril


dukes0445
1 year ago

@avrilt hey Avril. Thank you for your comment. It’s really helpful comforting in a way to know that other people feel the same thing. Everything you described is exactly whats happening to me. Yep every time it passes i think oh that’s it now too but it just comes back. I have spoken to a nurse she has asked my gp to test for any infections and to prescribe me something for the pain. I was given Gabapentin last February during my last relapse when my legs went numb, but i stopped taking it as it was difficult to get a repeat prescription snd I wasn’t actually in pain so I didn’t see the point in continuing it. But now i feel like i need it!
It’s the strangest feeling. Will it ever go away?


cameron
1 year ago

It’s disappointing that your GP didn’t follow up on that first prescription and get you sorted on Gabentin. Probably time to get your MS nurse on your case.


Anonymous
1 year ago

Hey @duked0445

Glad I was able to help. But I am not sure if it will go away, I still get pain despite the Gabapentin. But my dose has been adjusted recently which really helped but I am an idiot and when I felt good I stopped taking in for like a week but now the pain has started popping up again. So I reckon with the right dose and if I keep taking it as prescribed it will settle down and hopefully go away, but I guess with MS there are never any guarantees. So just follow up on a prescription and if you don’t feel a benefit go back and get the dose changed, it will take time to get the right balance but like I say don’t do what I did and stop when you feel good. You need to remember the drugs are making you feel good. I guess it is hard, in that before MS I always thought of pills/medication to be temporary till you got better. But this is a lifelong battle so we need to stick with what the Doctors give us to allow us to win the war!!!!!

Take Care
I have accepted your request so if you need any more info just drop me a PM

Avril


polepole
1 year ago

@dukes0445 Hi, sorry to hear about your pain. I can empathise. I have constant neuropathic pain in my right arm and hand. It comes and goes in waves but it’s always there. I started out taking amtriptyline but it caused insomnia, even though it’s supposed to have a sedative effect. Both my MS nurse and GP were dumbfounded but shows how we all react differently to meds.

I’m trying norotriptyline now and if that doesn’t work, it will be on to something else. My GP says it’s just trial and error. @avrilt is spot on that meds take a while to kick in. Hope you find something that works for you.

Hannah x


lmhf
1 year ago

Hello, sorry to hear about your discomfort. I also suffer from chronic neuropathic nerve pain. It’s always there pulsing pain about every 15 seconds through my right leg, right fore head, and left buttock! Crazy, even had a Neuro tell me that it wasn’t phiosologically possible! Ha

Anyway, I do take Gabapentin twice daily. It takes the edge off the pain so I can function better. Everything seems more pronounced at night.

Do ask for some pain relief so things can be more bearable. I’ve continued to have this pain for eight years, so, it’s pretty draining.
Based on some of the previous posts I may ask my Neuro for a change and see if I can do better.
Hope you find something that works soon.

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