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Neuropathic pain - some help and advice please.

Hi Forum community,

I’d like some help and advice please!

I’m suffering from severe neuropathic pain. It started about a year ago; I was managing the pain on 1800-2400mg daily of Gabapentin for the first c.9 months and coping with it, but have now had to gradually step upto the maximum dosage of 3600mg as the pain has increased! The pain is also worse when I’m trying to sleep at night-time. I’m also about to add amitriptyline 10mg at night to try and help me sleep. The pain is mainly across my chest and in both my arms and both legs plus my hands. It’s not the sure of pain I can ignore and it’s making me very difficult to live with!!

What pain relief works for others? Any hints and tips on coping with it? How long has your’s lasted? Any other advice or words of wisdom?

Thank you.

Hi, I have been on Gabapentin for about 8 years, since my hip replacements and pregabalin since my MS diagnosis. Both good drugs but sometimes they don’t help the pain in the limbs. Best thing I have found is ‘hot & cold’. I will put a cold compress on my limbs for an hour then a couple of hours later will put a hot water bottle or now I have a small electric warmer onto my limbs. For me the change of temperature soothes my limbs and offers me a better nights sleep. May be worth a try.

Hi Richard,

I’m sorry to hear about all the pain you’re in.

First of all, are you absolutely sure it’s neuropathic pain? One possible reason neuropathic painkillers (like Gabapentin) might not be doing the trick is it’s not neuropathic.

MS pain can be very complex, and it isn’t all nerve pain, even though that’s often the first assumption by the medics.

I wonder if you’ve tried any ordinary but stronger painkillers, such as codeine, to see if that touches it at all?

On the whole, I’d say I have vey little nerve pain from MS. I have some mild discomfort, such as pins and needles, but it barely counts as pain.

A much greater problem, however, has been constant musculo-skeletal pain - from spasticity.

For this, I take a combination of muscle-relaxants (Baclofen and Diazepam) and conventional painkillers - paracetamol, ibuprofen, and codeine.

Of these, codeine is the most effective, and can be used in any combination with the others (none of them adversely interact with each other).

Unfortunately, I don’t tolerate the codeine well - it tends to make me a bit headachy and nauseous if I use it too frequently - so I’m constantly treading a fine line between managing the pain, and managing the painkiller side effects. It’s not ideal, but I get by with a bit of faffing around.

I have tried Gabapentin before, after coming under a lot of pressure to, because of insistence it must be nerve pain.

I was always sceptical it was, but agreed to try, just in case - sometimes the only way to check which kind of pain it is is to see which drugs it responds to.

Gapapentin made absolutely no difference, from which I concluded I wasn’t dealing with nerve pain, and carried on treating it with conventional painkillers.

I’m not saying they’re a complete solution, and all is well, because of the side effects, but they look like the best I’m going to get.

So if you haven’t already, I’d at least try some ordinary cocodamol, in case you’ve been assuming all the time it’s neuropathic, when it’s actually muscular.

If it responds to conventional painkillers, you might also benefit from muscle relaxants, as they would help relieve muscle tightness which is causing the pain.

If you’ve already tried all this, but it didn’t work, then I’m sorry for suggesting something that was no help. But if you haven’t, it’s worth a try, in case the neuropathic label was wrong.

Tina

I am on amitriptilyne 10mg at night and it works up till about 3 in the afternoon when my pain creeps back up again. I was also given codine which doesn’t really help on its own but does work when I take paracetomol with it. I am newly diagnosed and in the very early stages so this may be changed at my next appointment but they are working for me.

Thanks for the advice, Pops

I have been holding ice packs in my hands starting from yesterday and rubbing them up and down my limbs which has helped to take the edge off the pain after I get up in the morning. I will try using a heater/hot compress aswell. I need to do either both or one of these before I go to bed too.

Is it a coincidence that it’s got worse as we moved from Summer to the damp of Autumn and early Winter? Just a thought.

Hi Richard,

First off, read what Tina has written - and then read it again.
Neuropathic pain tends to come in two main forms:

  • “electric shocks” which can really make you jump.
  • a feeling in one or more limbs like the “worst toothache in the world”, or, like that limb is being “squeezed from the inside out”.
    The chest pain could be the dreaded MS Hug.

You need to sort out which is which.

Second, a recommendation from a rather senior nurse:
Take 2x500 mg Paracetamol, and 2x200 mg Ibuprofen at the same time. The para should act within an hour, the ibuprofen will take longer. If they do the trick, then you do not have a neuropathic pain problem

Let me add that I am not qualified to prescribe, and that when my GP gave me that Ibuprofen dose for some back pain, he added some omeprazole agains a stomach upset. I have. however taken the one without the other.

Geoff

Richard, certainly the colder, damp weather has not helped and I hope the summer returns quickly. I’m a cricket coach in my spare time and used under layers or skins I think they are called when I played. It’s not very sexy but I wear them now under my suit for work. Keeps my limbs warmer and takes the edge off the pain. Don’t give up on the gabapentin, I gave it up for a few weeks and it was awful, went back on it and was a little better.

Hi Anita…

You write a great reply - thank you. :slight_smile:

Absolutely sure? Well it seemed to be the most obvious answer as my symptoms of tingling and burning sensations were diagnosed as neuropathic pain by my GP and MS nurse.

I will try co-codamol. We have some in our medical cupboard, but just discovered it’s out of date! The conventional painkillers I was trying at the start were Ibuprofen and paracetamol (at maximum daily dosages) although I tapered these off after around April as I built up the Gabapentin dosage and was virtually pain-free. It’s a fine balancing act of drugs, pain and side-effects plus all the other options!

I also has IV steroids at the end of January to speed up recovery from a relapse that started in December when my bladder stopped working. (The early dosage of oral steroids had no impact!). The steroids haven’t/didn’t really help the neuropathic pain.

I haven’t taken muscle relaxants for my pain so that’s another option I can discuss with the medical world.

Thank you.

Thank you, and yes I did reread Anita’s post a few times!!

Luckily, I’ve never really had the electric shock type pain(apart from once when I thought my arm was on fire!) although have had the MS hug to differing levels; the worse being having to call an Ambulance as I thought I was having a heart attack!

Thanks for your advice on Ibuprofen/paracetamol…I started taking some today too and the pain has reduced slightly. Coincidence?

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Hi, I get really bad pains down my left leg and left hand which feels like they are literally on fire - I can’t take gabapentin as I have renal failure so the only thing I have that usually helps is a Lidocain patch prescribed by my GP. They are roughly six inches X five inches and I stick one at the top of my thigh (and sometimes if it’s really bad one round my lower arm). I think you can ‘wear’ three per day and they last hour about twelve hours. Unfortunately if I need one at night they often get stuck to the duvet! I need to come up with a better solution - perhaps a soft bandage over the plaster (or pyjamas would probably do the same). My GP said they use them for people with shingles (which is neuropathic pain) so he thought I could give them a try - they certainly work for me - could be worth a try - it’s a horrible pain and one that’s difficult to get away from.

Thanks for your reply. Have you tried/are you planning to increase the dosage of amitriptyline? Richard.

Thanks for your reply. You’re right; some days there’s no escaping the pain…

Sounds like you’ve have it really tough with the added renal failure problem. Sorry to hear that.

Richard

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Cannabis has been proven to provide relief during such situations.

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So, next piece of advice please?

My body is now “tremoring” and has been virtually all day and I’m very aware of it.

It’s not visible; but I can feel it mainly across my chest and arms. It was bad this morning, easing slightly now. It’s left me totally exhausted.

Any advice on how to cope and medication that worked for you.

Thanks. :slight_smile:

Never tried it. Coped so far. I guess perhaps I should?

Usually by now, an Admin has posted a boil plate disclaimer (and rightly so,) reminding readers that cannabis is not a legally available ‘dietary supplement’ in most forms, in most places in the UK. And this is true.

It is true and it is heart breaking. Heart breaking because in so many other places outside of the UK, people are able to exploit the benefits of this herb, which requires no other subsequent drugs or strategies to manage myriad side effects, unlike many of the legal, industrially produced alternatives.

Additionally, within the UK, those who enjoy a puff recreationally who then develop MS themselves, or have close associates who are afflicted, continue to break outdated laws to their own, victimless benefit. (This latter route is how i gained my opinion on the subject, and which in turn motivated my research into its use).

I wish you luck. The research and resulting literature on the uses of Cannabis for the alleviation of MS symptoms including but no limited to pain and spasms, continues to grow. Sadly it is a politicised topic of discourse and is heavily muddied by fear mongerers, half truthers and those who point blank would have this subject written off as taboo.

In whatever environment, in whatever context, i would urge anyone, especially those running out of options / endurance, to consider Cannabis to be a very viable course of action. And no, you will not become a stoned out hippie, nor is it a gateway to you becoming a smack addict.

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There are many well-publicised claims that cannabis can be an effective treatment for MS. Cannabis contains a variety of chemicals known as cannabinoids which may relieve symptoms such as spasticity and pain. However, in the UK, all cannabis-based products are controlled drugs under the Misuse of Drugs Act and, therefore, the MS Society does not support or encourage the purchase, production or distribution of illegal cannabis under any circumstances. There are also concerns over the harmful side-effects of cannabis.

Clarity needed

The MS Society does believe that the situation around access to medicinal cannabis needs to be clearer. There needs to be improved access to properly-trialled cannabis-derived medicine provided by the NHS. This could help reduce the numbers of people buying and selling illegal cannabis for MS symptom relief, and reduce the harmful side-effects of the drug.

The National Institute for Health and Care Excellence (NICE) recently published its draft clinical guideline for the treatment of MS – in it, NICE recommended against the prescription of Sativex, a licensed cannabis based medicine to treat spasticity in people with MS.

We believe that this was based on a flawed assessment of the evidence for the medicine. In addition, the guideline development process does not allow for wider consultation, unlike the full technology appraisals that NICE routinely undertakes.

Sativex in Wales

However, the All Wales Medicines Strategy Group (AWMSG) recently became the first health technology appraisal body in the UK to recommend Sativex for use. This means that Welsh people with MS will be routinely able to access Sativex.

There are no disease modifying treatments for progressive forms of MS and as a consequence there is heavy reliance on symptomatic treatments, such as Sativex, to reduce the impact of the condition on an individual’s ability to undertake daily activities.

In the absence of a positive recommendation from NICE, we are significantly concerned that people with MS who are unable to privately fund access to Sativex may turn to illegal alternatives instead.

Stewart (admin)

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A wonderful, informed, intelligent and impartial post. I am grateful. Genuinely and sincerely grateful. For too long, medicinal Cannabis has been dismissed and marginalised as part of the ‘Reefer Madness’ doctrine.

Although MSSUK recognises that such plants remain illegal and thus cannot condone visitors of this site attempting to acquire or consume such contraband, I am heartened that you are at least able / inclined to detail what progress has been made.

I hope that as the world turns away from outdated and baseless attitudes, the wealth of data will grow and Cannabis will be recognised as a viable tool for managing MS caused symptoms.

I do not have rose tinted glasses; i do not perceive Cannabis as a ‘cure all, magic bullet’; but i do know that it is one of the oldest species of plant to be cultivated by humankind, for more than just its cannabinoid compounds (fibre, oils, food etc)

Wales endorses the provision of Cannabis derived medication; Durham Constabulary refuses to enforce anti-Cannabis laws and in Canada, the government run liquor stores union are petitioning to be permitted to sell recreational Cannabis (as medicinal outlets are already legal and widely established).

That Cannabis is still prohibited to so many whilst a growing population are given permission is unfortunate, but at least places like this allow us to help spread the discussion and indeed awareness. Hopefully one day, i will no longer sit back and say to myself “i cannot believe we are still having to protest this!”

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Hello everybody,

I am very grateful for finding this thread. In the past 10 days I’ve had tightness around my upper torso, and I find it difficult to breathe. Mild pain, which seems to be moving from left upper chest,to right upper chest, to epigastric area. In the latter muscles are clenched tight as mad. It never happened to me before. Although I’m not in a lot of pain, the constant heaviness and persistent nagging sensation are driving me mad. Through the day I can manage somehow, but when the night comes everything is just triple bad. I was rushed to ER on 30th of Dec, therefore heart attack,collapsed lungs,heart tamponade and other sinisters have been out-ruled. Blood tests, X rays to the chest, heart echo, ECG- all good. They clearly didn’t have a clue what was wrong with me. Subsequently I went to see my GP suggesting about the ‘‘MS hug’’ and he honestly admitted he had no idea what I was on about. Next thing, contacted my MS nurse who straightaway jumped to the conclusion that I was having a neuropathic pain and suggested Pregabalin. The thing is, I’m reluctant to start with it, because to my understanding this is a pain relief medicine and as I already said, my pain levels are tolerable. It’s the cramped up sensation and heaviness on my chest what I’m looking to get rid off. I absolutely don’t want to be taking medicines I do not need, plus I have the understanding that Pregabalin is an extremely addictive and difficult to come off medication with a lot of side effects. Me being ME, I will probably get them all.

So, I was thinking more about some sort of muscle relaxants type Cocodamol ( I’ve got some lying around). I am reading a lot about Baclofen so I requested it from my MS nurse,but she hasn’t answered me as yet. Suppose she has to consult the MS specialist first., so I’m not getting that solved through the weekend. I am also taking on board what’s being said here about the combo of Paracetamol plus Ibuprofen, I will try that too…

What do you all think? Any suggestions and ideas are more than welcome…

Hi,

Given that the pain is extremely bad, personally, I would at least try what has been prescribed, before rejecting it as “not suitable”.

All drugs have some risks and side-effects, but I don’t think Pregabalin is known as a particular nasty, so I don’t see what you’d have to lose by trying for a while, just to see.

I haven’t tried Pregabalin, but Gabapentin, which is, by all accounts, very similar. It is true you cannot come off suddenly, especially from higher doses, but that is also true of Baclofen - which you are willing to try.

I don’t really understand the rationale for being afraid to take one, but not the other.

I only ever took Gabapentin in case it might work. In my case, it didn’t (which was much as I’d suspected), but if I’d never tried, I wouldn’t have known for sure. If it had worked, I’d have been kicking myself for not trying sooner.

Often, the only way to know if something’s going to help is by trying it. We all like to think medicine isn’t trial and error, but quite often, it is.

After weaning off Gabapentin, I had a slight rebound of symptoms that hadn’t previously bothered me, such as pins and needles in fingers. These hadn’t been my reason for taking it, but I guess it did damp them down anyway, so that when I came off, I noticed them more. I may have come off a bit too fast (instructions were very vague - not a lot better than "Use your commonsense!) So I was slightly annoyed my attention had been drawn to symptoms not previously found bothersome, but it was only a passing phase.

I didn’t otherwise experience any problems withdrawing, or any side-effects generally, except feeling a bit giggly and silly (“tipsy”) when I first started.

For me, the most conspicuous feature of Gabapentin was failure to do anything - good or bad. So it was pretty pointless persevering. But at least I can say I tried, so it’s one to cross off as: “didn’t help”.

And having demonstrated genuine willingness to try. I can’t get the old: “We can’t help if you won’t even try” line.

If it had worked I’d have been overjoyed. I didn’t lose anything by the experiment.

Tina