Pain. Please help?: Hey I'm hoping someone can... - Ataxia UK

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Pain. Please help?

Lucycord123 profile image
12 Replies

Hey I'm hoping someone can help me because my doctors are useless. I'm on cocodomol 30/500 x 8 per day and was.on pregablin 200mg x 3 daily. Pregablin was bringing on my tremor so I'm trying gabapentin just now..I've started on lowest...about a week into it I'm only a 3rd of the way to max dose to see if it helps. I'm in so much nerve and muscle pain that it's limiting my lifestyle..spent most of the week in my bed. My doctors says I just need to keep going to see if it helps ...I'm in agony ...is there anything that can help?

Lucy

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Lucycord123 profile image
Lucycord123
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12 Replies
pinjem profile image
pinjem

I am so sorry. Many of us know how devastating pain can be. I think I remember that Gabapentin takes a week or so to even start to work- I cannot remember so I might be wrong. I'm replying to send best wishes, a virtual hug, support.

BlanketTime1 profile image
BlanketTime1 in reply to pinjem

my mum keeps skipping dosages and i have to remind her it takes a while to work fully.

paul456 profile image
paul456

Hi Lucy really sorry to hear your in that much pain can’t be easy. Gabapentin can take 2 to 3 weeks for it to fully work but will ease the pain each day so will start to take effect soon. You take care my friend! Your pain will stop soon 👍🏻

wobblybee profile image
wobblybee

Many of us will be empathetic, pain is something we’re familiar with, myself included. As well as trying prescribed meds, you might consider asking your GP if you have a local Pain Management Clinic..

Staggy1 profile image
Staggy1

I have worn cbd patches which have helped my back pain- ill send you a picture of them so you can try them x

Ginger1 profile image
Ginger1

I'm on Gabapentin and it's generally used for pain management I believe. Keep perservering. If you're on Statins, they can also cause pain & I understand Coq10 if taken alongside can help, so even if you're not taking statins, it might be worth looking into. Good luck

Oroklinibabe profile image
Oroklinibabe

Hi LucyLike u I suffer nerve pain , I take gabapentin but I also take cannabis oil daily, I get mine privately thru sapphire clinics in Harley street. It helps enormously.

Legs-alive profile image
Legs-alive

Hello Lucy. I’m so sorry to hear of the pain you’re having. Have you been diagnosed with certain conditions? I have polyneuropathy-nerve pain. & I take pregablin, I started off on amitriptoiln that didn’t work, I then moved onto gabapentin & after getting to the max dose moved onto pregablin & av been on max dose for a couple of years now, they tried both pregablin & amatriptlin together but the pain was still there so they moved me onto the morphine patches, starting on the lowest dose & now on 70mg, I also take the pregablin.

I have also been diagnosed with dystonia(muscle pain) & have been started on Baclofen for that. I don’t think they’ll start you on anything else for your nerve pain until you get to the max dose of the gabapentin, but I could be wrong, but if I were you it might be best asking them to try mixing you on 2 different medications together for the nerve pain, which a lot of ppl have to help it & a separate medication that’s specifically for muscle pain.

Unfortunately it often takes a while to find a gp who understands you & who you feel comfortable with but I’d try seeing different gps until you do find the one then only have contact with that gp so that they can get to know you & understand you & your pain. Also if you’re not already seeing a neurologist at the hospital I’d ask to be referred to one & kerp at them until they do! Neurologists are specialists in nerves & can really help with medications.

Good luck & keep on at them until someone dies listen to you.

Lucycord123 profile image
Lucycord123 in reply to Legs-alive

Thanks for your reply. I have SCA2. Yeah the GPS right now dismiss my pain...I have my neurologist next Tuesday.

Lucy

paul456 profile image
paul456

How are you my friend are you any better.

I hate people suffering plays with my head 😐.

Lucycord123 profile image
Lucycord123 in reply to paul456

thanks Paul...unfortunately not but I have my neurologist tomorrow..I'm praying she helps because I can't keep up with my work constantly obsessing over my pain and I really don't want to retire so young. Hope you're well.

Lucy

Driven1 profile image
Driven1

I have been able to alleviate muscle pain by attending a massage therapist. She loosens the tight muscles where ever they may be from hand, calf, back or gluts. Reduced my Baclofen intake by 60% doing this. Am able to walk again without sticks and longer strides as an extra benefit.

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