Neuropathic pain

NelliePledge

NelliePledge

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Staff member
hi I have a very low dose of Lyrica aka Pregabalin for neuropathic pain which I get in hands and feet most noticeably at night. I had a bad experience with it when I first started taking it because I’m one of those who are knocked out by medications. I’ve stopped taking amitryptiline or nortryptiline for sleep because the sedative hangover the following day just wasn’t worth the limited effect on getting to sleep. With pregabalin I simply couldn’t function on the initially prescribed dose of 75mg am and pm and the go advised to cut it to 75mg at night only. After that I was able to function somewhat and was able to get a taxi to meet some friends for lunch. While out I had a fall and sprained right ankle and left foot which left me struggling to move round at home and unable to get out of the house for a few weeks and stopped me driving any distance for a couple of months. I was already struggling with undiagnosed ME before the fall but after the fall there was a step up in all symptoms.

Anyway to get to the point. I went to GP and asked them to give me the lowest possible dose of pregabalin which turned out to be 25mg which I have prescribed am and pm. I took it like this for a while. Then I was also prescribed amitryptiline. I went for about 18 months until I gave up on amitryptiline. And I was also reluctant to keep taking pregabalin daily so I stopped and only take it when the neuropathic pain ramps up - seems to be worse in hot weather for example. And I try to only take it at night time.

Now I’ve been reading articles about pregabalin being made a class c drug. I was already aware that it is used as a street drug. Some of the articles mentioned the side effects other than sedation cardiac problems are mentioned well I already have hypertension and seriously overweight plus family cardiovascular history so even at a small dose it doesn’t seem like a good idea. I’m thinking of ditching it altogether so was looking for other options for neuropathic pain. Interestingly Carnitine, Alpha Lipoic Acid and Evening Primrose Oil all mentioned in article by Mayo https://www.mayoclinic.org/diseases...l-neuropathy/diagnosis-treatment/drc-20352067and the NHS mentioned Carnitine but says evidence is limited.https://www.nhs.uk/conditions/peripheral-neuropathy/treatment/

I already take supplement with evening primrose and Carnitine but must admit I do have spells when I miss supplements for a few days because I’m not disciplined at filling up my tablet boxes and if I haven’t got the boxes filled I usually just take my BP tablets and magnesium cos I need the BP ones obviously and I notice the difference with no magnesium.

Oh dear this is turning into a ramble what I’m trying to get at is anyone specifically taking Carnitine, evening primrose or alpha lipoic acid for neuropathic pain and getting benefits from it and if so what amount of the supplement do you take.
 
Being low or high in vitamin B6 levels can cause neuropathic pain.

I have no experience of using CBD oil in sensible doses, but I've read lots of comments about it helping people for pain of various kinds.

I can't take evening primrose oil because it does drastic things to my mental health for reasons I've never understood. It makes me suicidal very quickly. Starflower oil is even worse. I've never understood why these oils have this effect on me.

As for carnitine and alpha lipoic acid, I've never tried them so can't help.
 
NelliePledge said:
hi I have a very low dose of Lyrica aka Pregabalin...

Oh dear this is turning into a ramble what I’m trying to get at is anyone specifically taking Carnitine, evening primrose or alpha lipoic acid for neuropathic pain and getting benefits from it and if so what amount of the supplement do you take.
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I am on week one of a five-week trial of alpha lipoic acid (if indeed that's what's in the capsules) for some neuropathic fibromyalgia, pre-diabetes pains. The literature is fairly positive on lipoic acid for neuropathy.

The reason I opted to try it because a McGill Uni-trained MD on an internation pain research organization website was going to run a clinical trial with pregabalin plus alpha lipoic acid for fibro pain.

On the sleep med front: I take 25mg of trazodone and am used to the tiny hangover effect. Keeps me asleep, as otherwise I would be waking up 10x per night.
 
Alpha lipoic acid is on my 'to try' list, not for neuropathic pain but because it's a glucathone building block.

As one of the things it's used for appears to be celular repair it makes some sort of sense that it may help neuropathic pain.

I'd be interested in knowing if it's an 'instant' thing, i.e. within a few hours like a painkiller, or if it's a thing that helps over the longer term by repairing the nerves.
 
As long as low dose Lyrica works for you, you are tolerating it well and your doctor supports it, I would have ignored the warnings. (Coming from someone who hated being in Lyrica myself - we are all different.)

Have you tried different types of b12 injections? High dose Methylcobalamine is often mentioned for neuropathy.
 
I had the same issue with amitryptiline and couldn’t wake up even on the lowest dose. I was then given pregabalin and gabapentin but had nasty side effects - dizziness, feeling really weird, can’t remember the others at the mo but they were enough that I didn’t want to carry on.

Also the thing I didn’t like about these drugs was that you have to take them all the time and not just when you get symptoms.

I have dihydrocodeine for back pain and find that it works well for the nerve pain as well. I have read that opioids are not supposed to be that effective for nerve pain but it does quite well for me.

I did start trying cbd but again it needs to be taken all the time and without symptoms I keep forgetting to take it. Also it tastes hideous. And there are so many different varieties that it’s hard to work out which to take. Reading about the endocannabinoid system I think it’s worth pursuing so I will give it a proper go. Of the types I have tried the dropper bottle is better than a spray as you can keep the vile liquid in a smaller area :)
 
This is sort of unrelated, but in my literature search (after getting angry about a psych-social and functional somatic disorder article) I remember reading about how people with fibro, etc. focus too much on their pain.

That's the opposite of what helps me. If I don't tune in to my pain-fatigue and activity levels, if I deny them, I'm in for it and it's not pretty.

It's damaging to read psycho-social, functional somatic bullshite, but one has to be battle-fit. I guess.
 
Ah yes @shak8 reading about all that symptom focussing and catastrophising definitely increases the blood pressure. Im sure they can come up with some BS to tell me why I don’t take their zombie tablets unless the burning is off the scale. Let me see.. oh yes bingo feeling the pain reinforces my unhelpful sickness beliefs. And no doubt being sarcastic about psycho bullshit is also a perpetuating factor for my “cfs”
 
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.
 
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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The research article I read about lipoic acid used 600mg/day as their dose. They had positive results when they tested at 5 weeks out.

I wonder if you are taking too much?
 
shak8 said:
The research article I read about lipoic acid used 600mg/day as their dose. They had positive results when they tested at 5 weeks out.

I wonder if you are taking too much?
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I have no idea, I got the dose of 2g a day from somewhere, no idea where ATM tho.

It's in the queue for rechecking, with luck it might get done within 6 weeks either side of the end of the world ;:
 
Wonko said:
I have no idea, I got the dose of 2g a day from somewhere, no idea where ATM tho.

It's in the queue for rechecking, with luck it might get done within 6 weeks either side of the end of the world ;:
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You've got me curious. If you wade deep into the research article, they say that an oral dose of 600mg per day is the best of both worlds, as 1.2gm dose gives 27% of participants nausea. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2836194/

I'm trying 4% lidocaine cream. Directions say: do NOT apply to a large area of the body. No definition of what large area is.

I've caused some weird burn-y pain situation on my knee skin where I applied hot pepper cream (capsaicin). That product is a highly touted topical for arthritis, but on me, well, weird stuff ensues.
 
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I haven't looked very hard, basically just the tabs left open in my browser, which should have contained the information I used to determine starting dosage, but I haven't found anything.

It seems unusually specific for me to have pulled it out of the air, and nothing else I take is at 2g a day, so I'm a bit stumped.

The main new symptom I am getting, since starting the ALA (and increasing the arginine to 10g a day - Fluge paper protocol) is it feels like my feet are in sloshing cold water a lot of the time, like the shoes that I am not wearing are full of it, with a constant supply of cold water to replace any that my feet warm up. Like walking along in stream in plimsolls lol

Weird, and possibly a coincidence.

The other thing is my neuropathic pain in my back, shoulders and arms has increased, still mainly discomfort and an 'itch' but it's now at the level of 'distracting'. Most of the time not pain, although at night it becomes so, but I've previously learnt that it's a bad idea to let it get beyond even slightly 'distracting' as it takes so long to correct.
 
Hi guys. I also have burning neuropathy on hands, arms, feet, and sometimes back and shoulders.
I’ve been prescribed Venlafaxine, Duloxetine and Cyclobenzaprine by Rheumatologist who thinks I have Fibromyalgia and Pregabalin by Neurologist who thinks I have Chronic Pain Syndrome.
I haven’t taken any of them yet. I’m afraid I will turn into a zombie.
Actually I have tried Cyclobenzaprine 5 mg at night when I was feeling really bad and I had to stop it because I felt dizzy and sluggish. It did help me sleep but I had vivid dreams all night and woke up fatigued, as always.

The burning neuropathy began when I hit perimenopause and my oestrogen levels fluctuated a lot. Before that, my feet were always freezing. Once I reached menopause and oestrogen levels went rock bottom, feet started burning mainly at night. On the night of 12th February 2018 I had this ‘episode’ when my hands and feet suddenly became heavy and I felt I was going to faint but what happened next is that they started burning non stop day and night. It was a very hot night and I didn’t sweat, my body temperature must have raised very rapidly.

I also have allodynia when the burning is worse. Can’t stand shoes, flip-flops, bras, rings, anything really. I live in hot weather so this is really incapacitating.

I sleep with a fan, chill pillow and ice packs.

My question is, is this going to be permanent? Is it going to get worse? I don’t think I can handle it anymore.

Thanks for reading
 
Sending hugs @aza im a similar age to you and I only got diagnosed 3 1/2 years ago. I’ve had neuropathic pain for a few years before diagnosis but not extreme pain. I can understand what you’re saying about the hot weather aggravating the pain as mine was a lot worse in the summer when we had a hot spell in the U.K. last year and also I spent a couple of weeks in the south of France in September in very warm conditions and I did have to take pregabalin then. In the winter I just don’t have my feet under the duvet to keep them cool. It always seems to be worse at night doesn’t it. Your pain sounds a lot worse than mine maybe you need to give the pregabalin a try at a low dose to see how you get on and what the balance of pain relief/side effects is.

No idea if neuropathic pain always stays at the same level year on year maybe folks who’ve had ME & diagnosis for many years can comment on that.
 
aza said:
Hi guys. I also have burning neuropathy on hands, arms, feet, and sometimes back and shoulders.
I’ve been prescribed Venlafaxine, Duloxetine and Cyclobenzaprine by Rheumatologist who thinks I have Fibromyalgia and Pregabalin by Neurologist who thinks I have Chronic Pain Syndrome.
I haven’t taken any of them yet. I’m afraid I will turn into a zombie.
Actually I have tried Cyclobenzaprine 5 mg at night when I was feeling really bad and I had to stop it because I felt dizzy and sluggish. It did help me sleep but I had vivid dreams all night and woke up fatigued, as always.

The burning neuropathy began when I hit perimenopause and my oestrogen levels fluctuated a lot. Before that, my feet were always freezing. Once I reached menopause and oestrogen levels went rock bottom, feet started burning mainly at night. On the night of 12th February 2018 I had this ‘episode’ when my hands and feet suddenly became heavy and I felt I was going to faint but what happened next is that they started burning non stop day and night. It was a very hot night and I didn’t sweat, my body temperature must have raised very rapidly.

I also have allodynia when the burning is worse. Can’t stand shoes, flip-flops, bras, rings, anything really. I live in hot weather so this is really incapacitating.

I sleep with a fan, chill pillow and ice packs.

My question is, is this going to be permanent? Is it going to get worse? I don’t think I can handle it anymore.

Thanks for reading
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Hope there is something else for you to try. Sounds like neuropathy to me, itching burning, etc. New drugs should come out at some point. Are you diabetic? Have you been allowed an opioid for the pain?

Maybe another anti-seizure drug or something. Ask an endocrinologist?
I have fibro and am post menopausal by 14 yrs but usually have more ache-y, slicey, (but sometimes burn-y pain). I feel like a god with a huge wrench is twisting my muscles with all his might.

I'd like a nerve block to my entire upper body, arms, etc. Oh, and thighs burn and twinge as though I've exercised. I am pre-diabetic so I don't want to be diagnosed with Type II.

Another option might be to ask for a trial of estrogen to see if the neuropathy is assuaged. ?
 
Hi shak8,

No itching, just the normal itching for an allergic person, main problem is extreme burning. No diabetes, but my glucose level is a bit high and HbA1c is borderline, so possibly pre-diabetic. No opioids have been offered.

Endocrinologist has referred me to Neurologist and only offered me statins because both LDL and triglycerides are high, but they have been increasing since perimenopause started 10 years ago. Before that my levels were at the lower range. I didn't take statins.

I have tried HRT for 3 months and had to stop because it did nothing to hot flushes / burning and it brought back migraines which had decreased dramatically after menopause.

I have gained a lot of weight since menopause and I think this is one big issue that could be the underlying cause of my symptoms. Adipose tissue is an active endocrine organ and can mess up with the whole metabolism. I'm trying to have a healthy diet (I'm veggie, so already have some restrictions) and increase exercise gradually, but I'm living in a awful city, really hard to find a nice place to walk or run. I don't like gyms but I love walking. I used to walk my dogs (had 10) but now I only have a cat (rescue, my avatar) and although I put him on a lead he doesn't like to go very far. I walk to go shopping daily, I don't drive and rarely take a cab or bus, almost homebound really.
 
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.
 
aza said:
Hi shak8,

No itching, just the normal itching for an allergic person, main problem is extreme burning. No diabetes, but my glucose level is a bit high and HbA1c is borderline, so possibly pre-diabetic. No opioids have been offered.

Endocrinologist has referred me to Neurologist and only offered me statins because both LDL and triglycerides are high, but they have been increasing since perimenopause started 10 years ago. Before that my levels were at the lower range. I didn't take statins.

I have tried HRT for 3 months and had to stop because it did nothing to hot flushes / burning and it brought back migraines which had decreased dramatically after menopause.

I have gained a lot of weight since menopause and I think this is one big issue that could be the underlying cause of my symptoms. Adipose tissue is an active endocrine organ and can mess up with the whole metabolism. I'm trying to have a healthy diet (I'm veggie, so already have some restrictions) and increase exercise gradually, but I'm living in a awful city, really hard to find a nice place to walk or run. I don't like gyms but I love walking. I used to walk my dogs (had 10) but now I only have a cat (rescue, my avatar) and although I put him on a lead he doesn't like to go very far. I walk to go shopping daily, I don't drive and rarely take a cab or bus, almost homebound really.
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Have you considered metabolic syndrome? It involves a cluster of symptoms, such as high blood sugar without being diabetic, high cholesterol and an 'apple shape' body or central obesity: https://www.mayoclinic.org/diseases-conditions/metabolic-syndrome/symptoms-causes/syc-20351916
 
Hi @adambeyoncelowe,

Yes, I have. I think it's exactly what's happening but it doesn't explain all symptoms. I had a boyfriend who has Metabolic Syndrome and he didn't have any of my symptoms, so I guess there's something else going on. Also, I don't have increased thirst and urination nor blurred vision.

I'm already trying to improve diet and increasing exercise (which is hard in my current situation) and will try to address this the best I can. Meanwhile, I'm investigating what could explain the burning feeling and the extreme fatigue.
 
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