Amitryptyline (Elavil, Endep, Levate) For Nerve Pain

[cristiana]

Hello

 

I have some nerve pain (at least, so far that is what the doctors the pain is) and am contemplating taking some sort of medication to help.   It seems I might have had shingles without the rash after Christmas, but no one is sure if that is what is causing it especially with being an undiagnosed celiac for most of my life being in the mix.  Spinal nerve impingement has been ruled out by MRI.

 

I just wondered, has anyone had any experience of low doses of Amitryptyline for nerve pain and found it helpful.  On the whole my pain is just plain annoying but occasionally bad enough to make me want to  lie down in a quiet room - if only that would help, but it doesn't!  Neither do the normal over the counter pills like paracetamol etc. I would just like to know if anyone has been helped by this medication for any type of nerve pain.

 

Happy to hear some negative stories too, for a balanced picture.

 

Thank you.

[flowerqueen]

I have nerve pain due to degeneration of the facet joints in my spine and have taken Amitriptyline for years. I didn't think they were doing much good until I was weaned off them to go on something else (I also have fibromyalgia) then I realised that they were working! Warning though, they are possibly not suitable if you have heart problems. I recently had to start taking Amitriptyline again (long story) and as I gradually increased the dose I noticed my heart rate getting faster, so have decreased my dosage while I wait to see my doctor again. They also enhance Levothyroxine if you have a thyroid condition. I also found occasionally that I had to decrease the amount of thyroxine I was taking because of this, and also because my thyroid condition has improved since I came off wheat and gluten. Your doctor will know best though, so take their advice. Amitriptyline won't get rid of nerve pain altogether, but they make it more manageable. Good luck!

[cinpeb]

Hello

 

I have some nerve pain (at least, so far that is what the doctors the pain is) and am contemplating taking some sort of medication to help.   It seems I might have had shingles without the rash after Christmas, but no one is sure if that is what is causing it especially with being an undiagnosed celiac for most of my life being in the mix.  Spinal nerve impingement has been ruled out by MRI.

 

I just wondered, has anyone had any experience of low doses of Amitryptyline for nerve pain and found it helpful.  On the whole my pain is just plain annoying but occasionally bad enough to make me want to  lie down in a quiet room - if only that would help, but it doesn't!  Neither do the normal over the counter pills like paracetamol etc. I would just like to know if anyone has been helped by this medication for any type of nerve pain.

 

Happy to hear some negative stories too, for a balanced picture.

 

Thank you.

I, too, suffer from nerve pain and have taken Gabapentin for many years. It helps sometimes, sometimes it does not. At least the nerve pain has not worsened. I am not one to promote any kind of pharmaceutical, but in my case, it helped.

[IrishHeart]

I tried everything for neuropathy for years and none of them did a darn thing. SSRis, SNRIs, gabapentin, even a double facet joint injection

in my spine from a  neurologist.

 

Nothing helped and I burned and burned. I was told that disc degeneration and OA was causing some of the pain, ( have some discs that are affected, yes) but a spine specialist said that's not necessarily true. He felt it was inflammation from the celiac that had gone unDXed for so long. (he was right) My celiac doc and I agreed with him. My doc consulted with 2 neuros in NYC on my behalf and they gave dire predictions that it would probably never resolve, (they were wrong!) 

 

The searing pain I had is greatly reduced off gluten (3.5 years) and after physical therapy and weekly  massage and targeted exercises.

 

I simply do not believe in the fibromyalgia diagnosis that is given out to millions of people when doctors do not understand where the pain comes from.

 

Please,  do try and get relief from working with a good massage therapist. I cannot tell you the excruciating pain I was in ...and now, 3.5 years later,

I am really doing so much better. I can walk, ride a bike, work out in the pool, do yoga. My stamina has increased and my muscles are getting strong and toned. At one point, I was ready to take a swan dive off a cliff because of the neck pain, the constant burning, parasthesia and weak & painful muscles .

 

I hate to think of any of you suffering as I did...and thinking there is no relief from it because there is.

 

It may be uncomfortable at first to get moving, but once the muscles begin to respond, the nerve pain subsides and the muscles become healthy and pliable again. Just a suggestion. I wish you all relief. hugs, IH

[cristiana]

Irish Heart - hello again!  As you can see I am still on the quest for nerve pain relief.  I am definitely going to take your advice on board about the massage with my physio.  I agree with you that a lot of nerve pain is probably attributed to fibromyalgia.  In the UK although maybe someone reading this might disagree I feel people are not diagnosed with fibro quite as much.  I do remember my dear grandmother complaining about neuralgia and rheumatism (she was born in the early 1900s and seemed to use the latter term liberally although I was never really sure what it was, she also got arthritis but that was something else) and I do wonder if she might have actually had nerve pain.  

 

Yesterday I did a big walk and the pain was dreadful, as we have shared previously, exercise does seem to make it worse at first.  However, last week I had pain one day after an extensive walk, and the next day I was so furious with the whole pain thing bullying me into inaction that I decided to shake my fist at it and go for yet another walk and surprisingly, the pain was much more bearable after that walk, so I do think you are right, perhaps in my own situation I need to try to exercise my way through it.   

 

Thank you also flowerqueen and cinpeb - I still have just one more round of tests to rule out any nasties in my hip area.  I'm going to try IH's suggestions over the next few weeks while I wait for those results but if I do need to try some medication later, I will bear in mind what you have said.

[IrishHeart]

Hon, I do not think anyone should hurt themselves by overtaxing their muscles though, Just want to make that clear.  No need to do extensive walks. Do 10 minute ones...3 times a day. build up  your time. You don't want to overdo it and make them so sore you can't do it the next day. 

 

What I am saying is that slowly, one can get back to proper exercise...as your muscles heal off gluten.

A good MT can help. 

 

Healing is not a race, I am afraid and recovery of your muscles is slow. I have had to be very patient,

but I honestly think if no doctors are seeing nerve impingement or entrapment and you have been given the okay to exercise,

then it is in your best interest to go ahead. In my experience,I have witnessed that fibromyalgia is a self-fulfilling prophecy. And many people I know who were told "it's fibro, just live

with it"...did not even have fibro at all. It was celiac. I was headed for a scooter or wheelchair, they claimed..but I said ....absolutely not.!!

 

Investigate all ways to get your muscles back. No one should believe the fibro dead-end diagnosis.

 

One other thing...your nerve pain is not from blood glucose issues, is it?  

[cinpeb]

Being a massage therapist myself, I strongly agree that a good massage on a regular basis will help. Avoid deep tissue at all cost! Ask for a fibro specialist as they know how to gently treat the problem areas.

[cristiana]

Thank you both for this extra advice.  It is so appreciated.  Re: glucose sugar levels,I have had various tests not all that long ago but maybe I ought to have one redone just in case.  Meanwhile I had some accidental gluten today in piece of chocolate (why do they put it in chocolate?) so what with the sugar and the gluten and the caffeine I'm expecting some extra pain might be on its way!  

[flowerqueen]

I have nerve pain due to degeneration of the facet joints in my spine and have taken Amitriptyline for years. I didn't think they were doing much good until I was weaned off them to go on something else (I also have fibromyalgia) then I realised that they were working! Warning though, they are possibly not suitable if you have heart problems. I recently had to start taking Amitriptyline again (long story) and as I gradually increased the dose I noticed my heart rate getting faster, so have decreased my dosage while I wait to see my doctor again. They also enhance Levothyroxine if you have a thyroid condition. I also found occasionally that I had to decrease the amount of thyroxine I was taking because of this, and also because my thyroid condition has improved since I came off wheat and gluten. Your doctor will know best though, so take their advice. Amitriptyline won't get rid of nerve pain altogether, but they make it more manageable. Good luck!

 

Hon, I do not think anyone should hurt themselves by overtaxing their muscles though, Just want to make that clear.  No need to do extensive walks. Do 10 minute ones...3 times a day. build up  your time. You don't want to overdo it and make them so sore you can't do it the next day. 

 

What I am saying is that slowly, one can get back to proper exercise...as your muscles heal off gluten.

A good MT can help. 

 

Healing is not a race, I am afraid and recovery of your muscles is slow. I have had to be very patient,

but I honestly think if no doctors are seeing nerve impingement or entrapment and you have been given the okay to exercise,

then it is in your best interest to go ahead. In my experience,I have witnessed that fibromyalgia is a self-fulfilling prophecy. And many people I know who were told "it's fibro, just live

with it"...did not even have fibro at all. It was celiac. I was headed for a scooter or wheelchair, they claimed..but I said ....absolutely not.!!

 

Investigate all ways to get your muscles back. No one should believe the fibro dead-end diagnosis.

 

One other thing...your nerve pain is not from blood glucose issues, is it?  

Hi Irish Heart,

Re: discussion on Fibromyalgia.  Anything can become a self-fulfilling prophecy if you are that way inclined I expect; what worries me is that some doctors don't think it's a real condition (all in the mind), fortunately, there are a lot more that know this isn't true.  My daughter, has just forwarded me a newspaper article, not even knowing I was on this forum today.  I thought you (and others) might find it interesting:

 

Open Original Shared Link

[IrishHeart]

Just to be clear: I am not saying FMS does not exist. Of course it is not in anyone's mind. Pain is real.

 

I am saying that anyone with muscle pain is given this wastebasket diagnosis. If this excess blood vessel discovery is for real, then people who are  presumed to have fibro can now be ruled out as FMS sufferers. 

 

it's a wonderful diagnostic tool!!

 

You will notice that one commenter wrote this:

 

"I sincerely hope this is true and leads to a cure but one question nags me. Presumably those affected would have had this excess of blood vessels all their life, yet of those I know who suffer (luckily I’m not one, and pray I never will be) the majority have been fine until later in life (my next door neighbour, though having osteoporosis since her 50s, didn’t develop fibromyalgia until her 70s). So why haven’t they always suffered from it?
Read more at Open Original Shared Link

 

 

This brings me to my original point: 

 

Because they are probably undiagnosed celiacs that's why--their pain is not coming from fibro, but from celiac damage.

The vast majority of people being DXed right now....50's and older. 

 

coincidence? not at all.

[flowerqueen]

I take your point! It will be interesting to see what transpires. I have to admit that I was diagnosed with it in my fifties, although I've suffered with it for much longer. What I'm a bit puzzled by though is, if you have coeliac disease and it causes similar pain, and have cut out all gluten and wheat, why do we still have the pain? Should it not go or at least improve through abstinence? The spasms in my upper back have been alarmingly bad and am terrified of it getting as bad as that again, hence the medication.

Just to be clear: I am not saying FMS does not exist. Of course it is not in anyone's mind. Pain is real.

 

I am saying that anyone with muscle pain is given this wastebasket diagnosis. If this excess blood vessel discovery is for real, then people who are  presumed to have fibro can now be ruled out as FMS sufferers. 

 

it's a wonderful diagnostic tool!!

 

You will notice that one commenter wrote this:

 

"I sincerely hope this is true and leads to a cure but one question nags me. Presumably those affected would have had this excess of blood vessels all their life, yet of those I know who suffer (luckily I’m not one, and pray I never will be) the majority have been fine until later in life (my next door neighbour, though having osteoporosis since her 50s, didn’t develop fibromyalgia until her 70s). So why haven’t they always suffered from it?Read more at Open Original Shared Link

 

 

This brings me to my original point: 

 

Because they are probably undiagnosed celiacs that's why--their pain is not coming from fibro, but from celiac damage.

The vast majority of people being DXed right now....50's and older. 

 

coincidence? not at all.

[IrishHeart]

I take your point! It will be interesting to see what transpires. I have to admit that I was diagnosed with it in my fifties, although I've suffered with it for much longer. What I'm a bit puzzled by though is, if you have coeliac disease and it causes similar pain, and have cut out all gluten and wheat, why do we still have the pain? Should it not go or at least improve through abstinence? The spasms in my upper back have been alarmingly bad and am terrified of it getting as bad as that again, hence the medication.

 

There are people with BOTH celiac and Fibro, I am sure. What I am trying to get across to people is that too often, we are diagnosed with : FMS, CFS, IBS, etc, but the symptoms are the same as those of celiac, so people go undiagnosed for celiac disease based on the doctors who DX one thing at a time and symptom-treat it. This is my experience and that of so many celiacs I have met.

 

Also, you can have muscle and joint pain and not have fibro. I do. Lots of conditions cause muscle pain.

 

Have you seen a chiropractor, a physical therapist, a massage therapist? Maybe you could get some relief.

[flowerqueen]

Yes, many years ago, but my spine is crumbling (I've lost 3 & 3/4 inches in height) and it made it worse as the osteopath snapped my bones into place, instead of manipulating them. That's put me off for life I'm afraid.

There are people with BOTH celiac and Fibro, I am sure. What I am trying to get across to people is that too often, we are diagnosed with : FMS, CFS, IBS, etc, but the symptoms are the same as those of celiac, so people go undiagnosed for celiac disease based on the doctors who DX one thing at a time and symptom-treat it. This is my experience and that of so many celiacs I have met.

 

Also, you can have muscle and joint pain and not have fibro. I do. Lots of conditions cause muscle pain.

 

Have you seen a chiropractor, a physical therapist, a massage therapist? Maybe you could get some relief.

[IrishHeart]

Yes, many years ago, but my spine is crumbling (I've lost 3 & 3/4 inches in height) and it made it worse as the osteopath snapped my bones into place, instead of manipulating them. That's put me off for life I'm afraid.

 

 

snapped them into place? I do not know what that means. How is that possible....did she do some damage?

[kareng]

snapped them into place? I do not know what that means. How is that possible....did she do some damage?

 

 

I agree.  That sounds odd. If its that bad she should see a back surgeon.  They can fix things these days.  Some fixes aren't even super invasive.

[flowerqueen]

Well possibly made the problem worse, it would be difficult to prove it was her. The thing is, my bone scan (DEXA scan) I had after coeliac diagnosis showed early stages of osteoporosis (although, it took the hospital a year to actually tell me!