[Macophile]

Hi- I am at the end of my rope with my situation (I have PN/Autoimmune Disease/Fibromyalgia), I don't know how much longer I can live in perpetual pain with no light at all at the end of the tunnel (Except for those dang freight trains that keep trying to mow me down) So I am trying to do a little research. besides what i am on:

1) Gabapentin- 600mg tablet (5x a day)
2) Lyrica- 100mg caps (1 cap. 3x a day)
3) Baclofen- 10mg tablet (6 tabs a day)
4) Methotrexate- 2.5mg tablet (8 tabs per week)
5) Folic Acid- 1mg tablet (1 tab a day)
6) Vitamin D3- 1000IU tablet (1 tab daily)
7) Vitamin B12- 1000mcg tablet (1 tab daily)

does anyone have any suggestions about drugs or things that worked for them? I'm not really asking about pain killers (the docs just won't prescribe them- be answer i keep getting is that they don't work on PN, and that they are dangerous-, and I can't keep asking as then they think I am drug seeking), but if you take something else for your PN (or Fibro or Autoimmune) and it has helped (even if it is an off label thing) please let me know. Or if you can think of any other ideas please let me know those too- I am trying to collect them all before I see my DR in the middle of Oct.

Thanks!

[mrsD]

I'd get a Vit D test to see if you need a higher dose of that.
1000 IUs is fairly low. I'd also find a gelcap type, rather than a dry powder tablet. I think absorption would be better with a gelcap. Adequate levels of Vit D have shown a reduction in pain for those with chronic pain issues.

Most doctors will use Ultram (tramadol) for pain, for Fibro patients. If your diagnosis of Fibro is accurate, the new thinking is that narcotics don't work for Fibro patients, so doctors will not be likely to offer them. Studies have shown that pain receptors in Fibro patients are different, and already filled with endorphins compared to other types of pain states.

If your PN has been demonstrated to the doctors' satisfaction,
addition of Elavil may help with healing. New studies show this antidepressant actually works in the periphery to improve nerve function. I have posted about this recently, if you search "amitriptyline" you will find my post.

And there are Lidoderm patches. These work well, but require some experimentation to find the right spot to apply. Applied wrong, and no relief is the result.

[Macophile]

Originally Posted by mrsD

I'd get a Vit D test to see if you need a higher dose of that.
1000 IUs is fairly low. I'd also find a gelcap type, rather than a dry powder tablet. I think absorption would be better with a gelcap. Adequate levels of Vit D have shown a reduction in pain for those with chronic pain issues.

Most doctors will use Ultram (tramadol) for pain, for Fibro patients. If your diagnosis of Fibro is accurate, the new thinking is that narcotics don't work for Fibro patients, so doctors will not be likely to offer them. Studies have shown that pain receptors in Fibro patients are different, and already filled with endorphins compared to other types of pain states.

If your PN has been demonstrated to the doctors' satisfaction,
addition of Elavil may help with healing. New studies show this antidepressant actually works in the periphery to improve nerve function. I have posted about this recently, if you search "amitriptyline" you will find my post.

And there are Lidoderm patches. These work well, but require some experimentation to find the right spot to apply. Applied wrong, and no relief is the result.

As far as I know the Vit. D3 1000IU is the correct dose- it's the one my Dr. told me to take- it is interesting you mention the gel caps though, I thought about taken them instead but chose the tablets as they seemed more "common". But I will try the gel caps next time and see if this shows any results.

I don't know if anyone has read some of my previous posts, but I had a previous incident with Tramadol, once when I couldn't get a response from my previous pain clinic Dr for about 3-4 weeks, and my pain kept increasing I stupidly tried upping my Tramadol dose on my own- by 1/4 a pill at a time (I was on 2 at a time so I was taking 2.25 then 2.5, then 3 then 3.25 then 3.5 which is where I stopped) And I called and left a message for my Pain Dr. telling him I was doing this- as a last resort, as I couldn't take it anymore (I was so bad I couldn't stand on my feet really) - and He never called me back. I, of course, ran out of pills and the pharmacy wouldn't refill, the pain clinic wouldn't return my calls so I called my PCP and told them. They made me go to the ER where they did nothing as the Pain Dr. was from a dif. hospital. But the end result was I had to go off them cold turkey (so I went through withdrawal) and they wouldn't prescribe any more. So I think I am kind of stuck w/ no pain killers.

I probably should have mentioned that I am also on:
1) Amitriptyline- 10mg tablet (6 at night)
2) Topamax- 100mg tablet (1 at night)
3) Magnesium- 500mg (1 at night)
Although these are for migraines they say they could also help the PN and other issues.

As for the Lidoderm Patches, I do have those, but I can never figure out how to put them to get relief- I tried putting them on the places where the pain is, but no go- where do you put yours that seems to help?

[nide44]

For the life of me, I cannot understand why docs Rx Lyrica and Gabapentin.
They both do the same thing, only Lyrica does it better.
I'd try to go with just Lyrica 3x day at 450 or 600mg per dose and Ultram/Tramadol at 100mg 4x day for starters.
See if you can get off the gabapentin with a titration schedule.
Shouldn't take over a week to 10 days to do it.

That's the combination that works for me.

The B12, if in Methyl cobalamin sub-lingual form can be increased to 5,000 - 10,000 mcg per day with no ill effects, but B12 is for the long haul trying to repair nerves. It'll give some energy up-front, but helping with pain is down the road-usually.

The Baclofen is usually used for tremors in spinal cord injury patients,
why do you need to take it?

[mrsD]

This is a new video from UCSanDiego Medical College:
http://www.youtube.com/watch?v=TQ-qekFoi-o

It explains dosing. 1000IU is not adequate for most people in US. And you are in MA... which does not get alot of sun year round.

I would have the test to see what your blood levels are.
http://www.thehealthcarecenter.com/f...eficiency.html
The new recommendations for people who are NOT tested is 2000IUs daily.

I would make sure your magnesium is NOT magnesium oxide.
If it is, the absorption of this mineral is very very low... change to a chelate form for better results.

I have a thread here about the new medical direction Fibro treatment is taking:
http://neurotalk.psychcentral.com/thread20030.html
This is based on a conference I attended 2 yrs ago.

[pabb]

Originally Posted by Macophile

As far as I know the Vit. D3 1000IU is the correct dose- it's the one my Dr. told me to take- it is interesting you mention the gel caps though, I thought about taken them instead but chose the tablets as they seemed more "common". But I will try the gel caps next time and see if this shows any results.

I don't know if anyone has read some of my previous posts, but I had a previous incident with Tramadol, once when I couldn't get a response from my previous pain clinic Dr for about 3-4 weeks, and my pain kept increasing I stupidly tried upping my Tramadol dose on my own- by 1/4 a pill at a time (I was on 2 at a time so I was taking 2.25 then 2.5, then 3 then 3.25 then 3.5 which is where I stopped) And I called and left a message for my Pain Dr. telling him I was doing this- as a last resort, as I couldn't take it anymore (I was so bad I couldn't stand on my feet really) - and He never called me back. I, of course, ran out of pills and the pharmacy wouldn't refill, the pain clinic wouldn't return my calls so I called my PCP and told them. They made me go to the ER where they did nothing as the Pain Dr. was from a dif. hospital. But the end result was I had to go off them cold turkey (so I went through withdrawal) and they wouldn't prescribe any more. So I think I am kind of stuck w/ no pain killers.

I probably should have mentioned that I am also on:
1) Amitriptyline- 10mg tablet (6 at night)
2) Topamax- 100mg tablet (1 at night)
3) Magnesium- 500mg (1 at night)
Although these are for migraines they say they could also help the PN and other issues.

As for the Lidoderm Patches, I do have those, but I can never figure out how to put them to get relief- I tried putting them on the places where the pain is, but no go- where do you put yours that seems to help?

and i would bet no one told you of the antidepressant potential of the ultram, which makes the coming off that much really fun, not......yeah that level of vit D supp is way low....especially up here in new england....if you are carrying extra wt in fat, you may need more as well. The lido patches, try looking for dermatomes and match the nerve to the dermatome and put the patch over the nerve at some point between the end point and the spine, good luck

[daniella]

I am sorry if I state something by a different name that yo have taken or take. I get them mixed up with generic and reg name. What about a muscle relaxer like klonopin I am on? I also sometimes take at night my recent pain doctor rx it is for pain/muscle relax and aids in sleep called zanaflex. I am not that familiar with auto immune but have a friend who takes prednisone which I know long term is not the best but maybe for the short term? Do you think may be you need another opinion or look from a different pain doctor? Really that makes me boil how doctors don't call in rx and or call back. Hang in there.

[mrsD]

I've posted about placement of Lidoderms many many times.

The last posts, I even put up anatomical photos!

http://neurotalk.psychcentral.com/sh...light=Lidoderm
post #14

Putting the patches where you "feel" pain, is not the best way.

The best way is to interrupt the signals from the main nerves.
The lower back, the tops of the feet, behind the knees etc.

[Macophile]

Originally Posted by nide44

For the life of me, I cannot understand why docs Rx Lyrica and Gabapentin.
They both do the same thing, only Lyrica does it better.
I'd try to go with just Lyrica 3x day at 450 or 600mg per dose and Ultram/Tramadol at 100mg 4x day for starters.
See if you can get off the gabapentin with a titration schedule.
Shouldn't take over a week to 10 days to do it.

That's the combination that works for me.

The B12, if in Methyl cobalamin sub-lingual form can be increased to 5,000 - 10,000 mcg per day with no ill effects, but B12 is for the long haul trying to repair nerves. It'll give some energy up-front, but helping with pain is down the road-usually.

The Baclofen is usually used for tremors in spinal cord injury patients,
why do you need to take it?

Well according to my Pain dr (This is not the one who didn't call back, this is a diff. one- not that he is much help) Gabapentin and Lyrica are two different drugs that which they go after the same things they do it differently so sometimes people have to be on both. He decided i should stay on both after he tried to take me off the Gab. recently and my pain went up. And he refuses to give me more than 300mg a day of Lyrica (even when he though I was going off the Gabapentin)

As for the baclofen it has an of-label use of treating nerve pain.

[Macophile]

Originally Posted by mrsD

I would have the test to see what your blood levels are.
http://www.thehealthcarecenter.com/f...eficiency.html
The new recommendations for people who are NOT tested is 2000IUs daily.

I would make sure your magnesium is NOT magnesium oxide.
If it is, the absorption of this mineral is very very low... change to a chelate form for better results.

I have a thread here about the new medical direction Fibro treatment is taking:
http://neurotalk.psychcentral.com/thread20030.html
This is based on a conference I attended 2 yrs ago.

I don't know what the exact #'s are... he hever told me, he just said it was slightly low when I saw him and told me to take 1000IU.

And thank you for the link about the Fibro- I wish he had some kind of article published or something about this because I would love to bring this to my Dr, but they only want "official" printouts.