Neuropathic pain

I think the reason one person may respond to one medication for neuropathy and another person won't may be due to the cause of the neuropathy, i.e. diabetic neuropathy vs. traumatic neuropathy from an injury, etc., or erythromelalgia (that feels like a neuropathy).

For a neuropathy in one leg due to an injury I took nortriptyline for years. Of all the tricyclic antidepressants, nortriptyline worked the best and had the least side effects when compared to say, amitriptyline. Many years ago 50mg at night worked for me and now I take 25mg at night because I'm taking other sedating meds.

NelliePledge said:
seems to be worse in hot weather for example.
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This sounds very much like erythromelalgia. Do you find it difficult to wear shoes and socks? Like @ladycatlover I developed erythromelalgia in both feet (but due to an injury) and pregabalin helps. Pregabalin also helps with the pain of FM.

One member of an erythromelalgia forum urged me to try venlafaxine XR (extended release) and it made a huge difference. Some people find it sedating and some find it energizing, so the best way to try it is to start with a morning dose. You don't want to take something that will be energizing in the evening!

Now I take all three meds, nortriptyline, pregabalin and venlafaxine XR.

For neuropathy without any other explanation I really recommend just trying nortriptyline at night at the highest dose you can tolerate. The first week is the worst as far as sedative effects, then later on it will not feel as sedating. If you have erythromelalgia then pregabalin and/or venlafaxine XR would be worth a try. If you do try venlafaxine, make sure you try the XR form because (1) it works better and (2) is much less likely to cause nausea. You have to take it with food.

Perhaps a pain specialist can help you the best. I think if all else fails, a small dose of an opioid such as hydrocodone or morphine would be helpful. (Yes, I take those too.) It's good to have a pain specialist recommending this since primary care physicians may not be willing to go that route.

https://www.cochrane.org/CD011209/SYMPT_nortriptyline-neuropathic-pain-adults

https://www.cochrane.org/CD007076/SYMPT_pregabalin-chronic-neuropathic-pain-adults

https://www.cochrane.org/CD011091/SYMPT_venlafaxine-neuropathic-pain-adults

https://www.cochrane.org/CD006146/SYMPT_opioids-neuropathic-pain

ETA: venlafaxine can make hypertension worse depending on the size of the dose.

NelliePledge said:
neuropathic pain which I get in hands and feet most noticeably at night
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Night-time pain is also typical of erythromelalgia.
 
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Wonko said:
n=1 but I've been taking ALA (split dose of 1g twice a day, so total of 2g a day) for a few days now and my neuropathic pain has increased to the point where I have had to restart gabapentin to compensate.

It's not bad, just at the bugging me level, and it could be coincidence, just thought I'd mention it.
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I had an increase in pain last night but I thought maybe it had actually decreased last week (due to lipoic acid started...?).


Did a Cochrane lookup of the lipoic acid. There's the one positive Chinese study but of questionable quality.

The other study was with cancer patients who had neuropathis pain, and lipoic acid made them much worse and the quality of the study was better.

I'm stopping it. I had my hopes. Oh well.
 
I'm still awake, mild pain but enough to stop me from sleeping.

I was about to look up if magnesium could be the culprit (taken as part of ZMA, zinc, magnesium and B6 I think), about an hour before sleep, as directed. Since I started taking it my sleep problems have gotten worse, could be coincidence, based on what you've posted could be the ALA.

I've had a few months where falling asleep, provided I hadn't done too much, wasn't an issue. For probably the first time in my life since I was a child I could routinely fall asleep in 15-30 minutes.

Seems that's behind me now, as I did virtually nothing yesterday.

Off to look up the ZMA, I have noted previously, I think, that certain mag supplements can cause me issues, which is why that was my prime suspect.

Dunno.

ETA - okay done that. It appears a small number of very lucky people can't sleep if taking ZMA, guess I'm one of them. As I probably need the Mg at least I'll use them in the morning, after a few days respite as I really could do with some sleep over the next few days.

I may drop the ALA over the same period to see if that helps the annoying neuropathic and joint pain.

But tonight I need sleep, so I will probably take a nip of oramorph to help things along, when I get organised, or bored enough to move.

Some idiot put it just out of arm's reach.
 
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Little Bluestem said:
I thought magnesium helped with sleep. There is a product called Magnesium Kalm that is supposed to be taken at bedtime.
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Only some in my case.

Glycinate helps me sleep but malate doesn't, can't remember what was in it but the previous bottle of magnesium something I got, coz the one I knew worked was no longer being sold, really didn't work, made me feel terrible.

Can't take crystals in the bath either, puts me on edge, anxious, and can't stay in the bath.

My body is just fussy when it comes to magnesium
 
Thanks for comments @CFS_for_19_years i took 10mg of amitryptiline at night for 18 months for insomnia alongside the 25mg of pregabalin for pain. Even at these very low doses I was still getting sedative hangover after months. Then amitryptiline stopped being of much benefit and given the sedation I wasn’t prepared to increase the dose. I tried replacing with 10mg nortryptiline which still had sedative effect and wasn’t helping with sleep so gave that up and got my friend to buy over the counter low dose melatonin in the US to bring back for me which does help somewhat with my issue of getting to sleep- I usually get 6 hours or more when I do get off. I take the pregabalin only when it burning gets too much and try to ignore it most of the time as luckily for me it’s not really bad pain. I reckon im just one of the people that’s very sensitive to sedation side effects. I’m not brilliant in mornings with the ME symptoms but the sedation would just make me feel even worse, even when I had some energy I was mentally slowed down. I think I’m going to have to stick with as needed pregabalin for now. I’m reluctant to ask for a referral to a pain clinic as the dose I take is so low they won’t take me seriously thinking it is basically a placebo because it is too low to be effective. I don’t want to get entangled with a referral to pain clinic as they will be trying to get me to do CBT again. Which I need like a hole in the head because I have a very effective counsellor I’ve been seeing on a maintenance basis for years and as a result my mental heath is in pretty good shape.
 
The first lot, well the prescriptions I got from the first GP who gave me it, of ami were 5mg. They could knock me out cold wherever I was, about 13-14 hours after I took them. Which could be inconvenient until I figure it out. I was a mature student at the time, snoring away in lectures, or even the cafeteria, or pub, was 'inconvenient'. Couldn't do anything about it, I just fell asleep no matter how hard I tried to stay awake.

I changed GP's after a while and tried to get more, as at the time I was having issues sleeping and the routine stuff they give you just makes me itch, and I was told in no uncertain terms that ami was not, and never had been, available in 5mg tablets.

So no idea what was going on.

I do know that higher doses don't help me sleep, and I've tried over 300mg at once, all that does is make me unable to fall over, seriously, can't figure out how to stop standing up. Why such a high dose? TN, unremitting severe pain, all I wanted was to be unconscious, I didn't care if it killed me. And that was what I had.
 
I know someone who has osteo arthritis in his back and takes gabapentin as well as others and he takes 250mg a night. I was a bit shocked that i couldn’t tolerate 150 then 75mg of pregabalin when I heard the doses other people take. And that it made me fall over on 75mg. I can understand the sedation not being a big concern when pain is so terrible. I’m just lucky the burning I get isn’t anywhere near that. And I really would like to understand why my tolerance is so low. Even the hypertension medication I take made me drowsy when I started that but at least I eventually did get used to it after a few weeks.
 
I couldn’t tolerate amitryptaline either - even the smallest dose left me like a zombie during the day. Pregabalin and Gabapentin were horrible as well, dizziness, nausea, worse than just normal ME.
Tried spray on magnesium but not sure it had much effect.
Melatonin is a miracle for me. I get it online now and sent to the UK and it’s not expensive.

For the pain in my arms and hands I use resting night splints - they keep my wrists and hands straight and you can bend the ends to suit. I find that if I have my hands and fingers pushed flat and slightly backwards it would really relieve the pain that night and the next day. When pain was bad at night I was finding I would wake with my hands clenched tight and this hurt loads more. The splints stop that.
I don’t use them all the time as they are awkward, but they do make a difference for me when things are bad.
 
Wonko said:
I was about to look up if magnesium could be the culprit (taken as part of ZMA, zinc, magnesium and B6 I think), about an hour before sleep, as directed. Since I started taking it my sleep problems have gotten worse, could be coincidence, based on what you've posted could be the ALA.
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In my case, B6 leads to the inability to sleep. But I have a "B6 intolerance" (I get tremor and so on, too). Small dosages are enough to start this, it just takes longer than with higher dosages.
 
Palmitoylethanolamine (PEA), cannabidiol (CBD) and benfothiamine are neuropathy treatments with established research.

Mercury can cause neuropathy, and is only weakly chelated by ALA, causing a redistribution rather that elimination which is known to increase symptoms.
 
Just read this thread. I have been ill since before CFS and a deep burning pain was always considered a symptom of ME, especially in the large muscles like the legs, arms and back. It comes from the byproducts of anaerobic exercise such as lactic acid. I find the best thing for it is a very hot cherry stone bag (or wheat bag). Tramadol helps too but it stops me sleeping so I can't take as much as I would like.

Pains in my joints respond to heat as well (I have an old tatty pair of sheepskin mittens which are good!) but luckily paracetamol and NSAID creams take the edge off.

I have always had shooting, intense neuropathic pains as well. I take gabapentin for that which I tolerate fairly well, thank goodness. It also helps with the seizure like episodes I get so I am happy to take it. When you read about people addicted to it they are taking massive doses well beyond any prescription.

Some of the pain in my toes comes because they turn white with the cold. Raynaud's like disease is probably common in ME especially if we have compromised blood flow because of red cell problems. Some of the techniques for that might help.

I read a book about sleep by Matthew Walker recently. His methods are completely scientific and sadly he says that there are no sleeping tablets which actually affect sleep. Things like amytryptaline are just sedatives which explains the zombie effect. The melatonin system is just one of 3 systems which work together to bring on sleep so a supplement of that will have an effect.

He said that we accumulate a chemical during the day which makes us sleepy so I have been trying to go to sleep at much the same time and not to nod off before bed and it has helped me. This is not sleep hygiene as the psychs present it though.

In bed, I use a bed cage which stops the weight of the covers causing me pain and a bolster down the side so I can keep my arms in a neutral position and lift my legs onto it when the pain is too bad.

I have had type2 diabetes for over 10 years now and the neuropathic pains are getting worse. I keep a very good diet but my blood sugars rise when my ME flares so I do not have the control I would like. A bit of a worry there.

I do not think that pain in ME is given enough consideration. I suspect that even when it appears like other diseases some of the causes are different for us because of our energy systems being broken. A lot of the time I could not think for the pain and I feel very sorry for those who are sensitive to meds so cannot get even the partial relief I have.
 
ladycatlover said:
Some years ago I began to have burning palms and soles. They turned bright red too! I found out about something called Erythromelalgia, my GP at the time was happy to add it to my list of uncomfortableness, mainly to help me with claiming benefits (which were a lot easier to claim and generally a lot less hassle back then than they are now!).

I just thought perhaps the TEA (The Erythromelalgia Association) website might be of interest? I was a member for a few years, but I think now most of their stuff is freely available on their website. Even if you don't have EM perhaps some of their advice/ideas might be helpful.

Not as badly affected by it now, just sometimes it comes back for a while. I have no idea if I actually have/had EM or not. Patient descriptions do seem to sound like some form of peripheral neuropathy. Just taken a look at their Guide for Patients, and they do mention peripheral neuropathy.
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Sorry @ladycatlover, somehow I've missed you post. I have considered Erythromelalgia, but I don't have the redness that seems to be characteristic of this condition. I'll have a look on the website. Thanks!
 
aza said:
I have considered Erythromelalgia, but I don't have the redness that seems to be characteristic of this condition. I'll have a look on the website.
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A lot of patients with Erythromelalgia don't have the redness, myself included. There was a survey of several hundred patients that confirmed this. There are two things that distinguish EM:
1. Pain is worse at night.
2. Pain is worse during warm weather.
 
CFS_for_19_years said:
A lot of patients with Erythromelalgia don't have the redness, myself included. There was a survey of several hundred patients that confirmed this. There are two things that distinguish EM:
1. Pain is worse at night.
2. Pain is worse during warm weather.
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My son has the redness and gets hot but not a lot of pain with it. More redness with warm weather as well.. So many strange symptoms
 
CFS_for_19_years said:
A lot of patients with Erythromelalgia don't have the redness, myself included. There was a survey of several hundred patients that confirmed this. There are two things that distinguish EM:
1. Pain is worse at night.
2. Pain is worse during warm weather.
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That’s interesting thanks I will look because I have both. Really needed the pregabalin when I was in the South of France staying with friends last September whereas 8n the U.K. I live without as much as I can. Had some really bad nights in Marseille where it was around 20c overnight.
 
CFS_for_19_years said:
A lot of patients with Erythromelalgia don't have the redness, myself included. There was a survey of several hundred patients that confirmed this. There are two things that distinguish EM:
1. Pain is worse at night.
2. Pain is worse during warm weather.
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I didn’t know that. I live in tropical Brazil, the burning sensation is 24/7, unfortunately.
 
Post Millions Missing having neuropathic pain and I’m taking the pregabalin at night sedation still there in the morning but I can live with it as I actually slept at 2pm last night which is pretty good for me when in PEM. I’m not risking taking any during the day though. But this has reinforced that I DO still need to keep this medication on my prescription.
 
Been taking the pregabalin quite a bit recently and getting shaking in the mornings which I don’t get at all normally. I’ve just discovered that tremor is a common side effect of pregabalin. I’m swinging against pregabalin again and thinking I need to give ALA a try. Just wondering if you’re still taking it @shak8 and if you took it am and at night?
 
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