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Suicidal with nerve pain

I was diagnosed with MS 14 years ago, and my primary symptom has been nerve pain. This manifests itself as trigeminal neuralgia, and a sensation of burning in my feet (from my ankles down, it feels like I’m wearing boots made of lava that are two sizes too small). I’ve been through nearly all of the anti-epileptic drugs to treat nerve pain - gabapentin, zonisamide, carbamazepine, pregabalin, zonisamide…now taking levetiracetam and topiramate.

6 weeks ago I started on Aubagio (after failures on all the injectables, Tecfidera and Fingolimod); since then, my nerve pain has got steadily worse, to the point where I’m going out of my mind with pain. There are 3 possible reasons why it’s got worse - current pain meds are losing their efficacy; my MS has got worse; or the Aubagio is making it worse (having seen my MS nurse last week). However, nothing has been suggested to alleviate this

I’m at the end of my rope. I can’t sleep, I cannot get comfortable in any position other than laying down. I cannot see a way out. There are no anti-epileptics left for me to try (other than sodium valproate, which I’m not keen on taking); and that’s if ever hear back from my neuro.

I’ve started hurting myself in other ways to distract myself from the pain in my feet. I’m not sure how I can carry on.

Any advice/help would be very gratefully recieved

Sarah

sarah

do not attempt to hurt yourself in any way!!

if your GP is approachable - try to get him or her onside.

they may be able to track your elusive neuro down

i can’t suggest anything med wise but couldn’t leave this unreplied to.

it isn’t a pain you can describe to non sufferers so that makes you feel isolated too.

carole x

Sarah, Agree with Carole except for “if your GP is approachable etc etc”. This is a time for insisting something is done re your Neuro. Your MS Nurse also needs the polite insisting message telling them exactly what you’ve put in your thread. Please just do it. x

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Hi Sarah,

I understand the pain you are in. I had TN myself for a few days until I realised that a tooth was the problem. There isn’t anything to compare it with and it completely overwhelms you.

Has anyone talked to you about surgery? There are a number of procedures available to relieve your pain so you’ll need to discuss the benefits and risks of each one with a specialist.

I agree with Carole and Tippy you should tell your GP that you are hurting yourself.

If your GP won’t listen you can always see a specialist as a private patient. You can always be transferred back to the NHS for the treatment itself.

I’ll be looking out for your posts.

Anthony

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dare I suggest you consider er ‘alternative’ drugs?

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Hello Sarah

Your pain sounds horrible. Truly horrible.

You’ve not mentioned Amitriptyline for the burning feet. I assume you’ve tried it?

I was also thinking about actually physically cooling them down, with ice packs, a cooling towel or Magicool. Do any of these help?

I have no experience of TN. I can imagine how bloody horrible it is though.

Do see your GP and don’t live with feeling like you have to hurt a different bit of yourself to take your mind off the pain. There must be more out there that can help.

’Alternative’ drugs might indeed work, but one needs a reliable supplier of them, and a means of ingesting such. And of course, they are, sadly illegal. You could try CBD paste instead. Have a look at Aluns posts on the PPMS board for more information.

I wish I could suggest more and try to help take some of the pain away. All I can do is sympathise.

Sue

HAVE YOU EVER

Have you tryed cannabis high in cbd? i take it for pain at night and to help me sleep,you can get cbd oil which is legal but try to get 10% or over for it to work, i wouldn’t be able to cope without the cannabis for the pain at night it is terrible when you can’t sleep at night hope you find something to help.

Sarah I went to see a pain specialist and ended up on Lopromate after several different drugs several of those you have listed made me feel awful. Hope you find something. Don

Hi Sarah, I totally sympathise. This is 1 of my main problems. I do use cannabis (I am not ashamed giving it’s name). Without it I would be like you. I have tried every prescribed medication on offer, but I was so drugged on them I didn’t have a life. My last resort offered was spinal cord stimulation, which is very invasive & could cause more problems than it would alleviate. Out of desperation I used Cannabis, I can now at least get some sleep. I know it’s not for everyone, I’m lucky I know where it comes from. I hope you can find something soon that suits you, I know exactly what you are going through. Tracey xx

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Sarah, I have no wise words, no solutions for you. But… Life with ms is shit. What is great with this forum is everyone gets its shit. Even if it’s framed in positive tones.

Thinking of you at this point that it’s too much.

It is brave & strong of you to share how you are feeling here.

please use that strength to share your ‘real’ with your gp. P.s. If you phone for an appointment, tell them it’s urgent, accept a ‘call’ from a doctor & when you get a call back… Tell the gp how you really feel.

big big hugs, hope you get help soon

Hi Sarah - I’m so sorry you feel so distressed and that you are hurting yourself to cope. It must be very hard. Please tell your GP, and remember The Samaritans - call free, any time on 116 123 - so you can talk and be listened to. I have in the past, and it helped at a time when things felt very bleak. Take care xx

Thank you all for your very helpful and supportive replies. The pain in my feet seems to have stabilised (which in my case, means it’s gone back to my “usual”). Weirdly, since it’s turned much colder, and I’ve been wearing less clothing, it feels like I’ve slightly lowered my core temperature and this appears to have had a beneficial effect on my pain. I do suffer with extremes of temperature - can’t cope with heat and if I get too cold I lose the ability to warm up. I do use cannabis when I can get it; it does help and to be honest, I enjoy the “high” of it as a release. It’s been over a week since I saw my MS nurse who was going to speak with my neuro about further options and I’ve heard nothing. This, alas, is the norm. I will mention Lopromate; I do take Amitryptiline but someone has suggested I ask to switch this to Nortryptiline. That is, of course, if I ever hear from my nurse again… Many thanks again, Sarah x

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I’ve looked for this drug but can’t find it - do you know the correct spelling or brand/generic name?

Sarah x