Burning neuropathic pain - help please

[FrankDI]

I am having a lot of problems with burning pain, mainly on my legs but also on my arms and sometimes on my shoulders. The burning feels like someone has spread hot chillis on my skin. It’s not a dull ache nor a shooting pain; it doesn’t feel like it is deep in the muscle, but maybe that is just my perception.

I’ve been in relapse since October 2014, and whilst some symptoms have eased, this burning pain has increased.

The pain doesn’t seem to relate to obvious activity, though it has been worse since I had a setback after a good week 2 weeks ago when I did too much.

My other major symptoms are neurological: nausea, tinnitus, night sweats, the general poisoned feeling and exhaustion.

I am currently taking 300mg gabapentin twice in the daytime, and 600mg at bedtime. This is not relieving the pain, which is worrying as this drug is supposed to target neuropathic pain such as this.

I am seeking suggestions on how to reduce this kind of burning pain. I live in the UK so cannot get certain drugs that might be available in other parts of the world.

Thank you.

 

[Marco]

Hi Frank

I'm no expert but it sounds to me like peripheral neuropathy/allodynia and possibly autonomic neuropathy.

At the very least your GP should be able to test for diabetes and autonomic problems and hopefully take it from there?

 

[August59]

I'm having something very similar except it is confined to my hands and feet. They are also very cold as well. Thyroid function appears to be good (my endo will only check TSH and Free T4 which both are normal).

My endo upon examination by skin test and SUDO Scan(?) says small fiber nerves appear to be perfect (or normal). He suggest that it appears to be large fiber neuropathy due to small fiber seemingly is normal and the fact that the pain feels deep. Even though fingers and toes are cold the pain does appears not to on the surface and has a sense of pressure.

I'm also experiencing intermittent vertigo, which does not seem to be positional vertigo.

 

[oceiv]

Hi, I'm new here. Just happened upon this thread. I have this type of burning pain, except in more places. It does feel exactly like hot chills.

What my doctors ended up doing was giving me gabapentin three times a day. I was originally on 900 mg, 300 mg/3 times per day. One doctor added 200mg to the morning dose and 100mg to the bedtime dose. This required an additional prescription for 100 mg pills, in addition to the prescription I had for 300 mg pills. The final dosage was: 500 mg in the morning, 300 middle of day, 400 bedtime. It was suggested I go higher by other docs, but I wasn't able to. See if your doctor agrees with this kind of approach. Your doctor can add the 100 mg at the times of day during which your pain is worst.

The extra gabapentin did help. Unfortunately, the thing that most eases this pain for me is avoiding the muscle motions that initiate the burning pain cycle. The pain cycle is much easier to avoid than to stop, once it's started. I think the kind of doctor who may best deal with this type of pain is one who specializes in RSD/CRPS. They can offer other strategies. Good luck! I'd be interested in any other strategies to help this kind of pain.

 

[August59]

Hi, I'm new here. Just happened upon this thread. I have this type of burning pain, except in more places. It does feel exactly like hot chills.

What my doctors ended up doing was giving me gabapentin three times a day. I was originally on 900 mg, 300 mg/3 times per day. One doctor added 200mg to the morning dose and 100mg to the bedtime dose. This required an additional prescription for 100 mg pills, in addition to the prescription I had for 300 mg pills. The final dosage was: 500 mg in the morning, 300 middle of day, 400 bedtime. It was suggested I go higher by other docs, but I wasn't able to. See if your doctor agrees with this kind of approach. Your doctor can add the 100 mg at the times of day during which your pain is worst.

The extra gabapentin did help. Unfortunately, the thing that most eases this pain for me is avoiding the muscle motions that initiate the burning pain cycle. The pain cycle is much easier to avoid than to stop, once it's started. I think the kind of doctor who may best deal with this type of pain is one who specializes in RSD/CRPS. They can offer other strategies. Good luck! I'd be interested in any other strategies to help this kind of pain.

I tried up to 1800mg's (3 x 600mg's) of gabapentin and Lyrica (2 x 150mg's). Neither one had a significant effect. I briefly tried amitriptyline, but I have never been able to tolerate even 5mg's of this med.

 

[oceiv]

@August59 1800 mg! I cannot even imagine. Sorry to hear that you didn't get help for your pain. Burning pain is the hardest to treat. I had transient side effects with both gabapentin and amitriptyline. My doctors encouraged me to stay on them and those side effects did eventually go away. It was rough until they did disappear. I couldn't tolerate any amitriptyline during the day. But at night, it helps me sleep. Better sleep in turns reduces my pain levels while resting. Activity is a totally different story. But with CFS/ME, every patient responds to medications differently. I think there are other anti-depressants (taken at a low-dose for pain) in the same category as amitrptyline and used if amitriptyline doesn't work.

The best advice I ever got for pain was whenever the pain starts, note the activity you're doing, stop the activity immediately so that hopefully you can break the pain cycle before it progresses and take extra medication before you start activity in the future. The key is to stay ahead of the pain cycle. Under doctor supervision, of course. The only other drug that helped this pain was Ultram, Doctors are often reluctant to prescribe it. I could only tolerate it very sparingly, like when I had to travel to the out-of-state doctor. It worked, but had very bad side effects. These days, my CFS/ME has worsened significantly, so I have minimal activity and can't travel at all.

I hope you find a solution!

 

[oceiv]

My endo upon examination by skin test and SUDO Scan(?) says small fiber nerves appear to be perfect (or normal). He suggest that it appears to be large fiber neuropathy due to small fiber seemingly is normal and the fact that the pain feels deep. Even though fingers and toes are cold the pain does appears not to on the surface and has a sense of pressure.

Cold extremities can also be symptoms of Raynaud's and RSD/CRPS.

 

[FrankDI]

Thanks everyone for your input and thoughts on the matter of burning pain. Yes, it is interesting how different people respond to the same doses of the same drugs. I have heard of a lot of people with ME suffering quite noticeable effects from gabapentin.

But for me it doesn't give me any side effects, but equally the pain relief is not fab at current dosage of 1200mg per day.

I am speaking to my doctor today about changing the dosage, so will see how that goes.