NeuroTalk Support Groups - No tramadol now

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- - No tramadol now (https://www.neurotalk.org/peripheral-neuropathy/26536-tramadol.html)

Barbara, i am very happy for you too, " Permanent Nerve Damage, My Butt! " were such inspirational words for all here to read, i am of the opinion that we all have a remarkable ability to heal ourselves, if given a chance to do so, finding the CAUSE is the only trouble and I really hope one day there will be no such word as idiopathic used in this very complex disease.

Quote:

Originally Posted by Daniella (Post 140659)

Thnaks. I'm going through the med issue now. I have tried Lyrica,Neurontin,Elavil and now on Cymbalta with nothing. I thought the cymbalta was helping when we increased but tis week has been hell. Med's never help me even when I was taking vicadin. That why I'm going more in the pain management place again cause I have not been to many. I need some relief. I'm so happy for you though.
I wanted to add something on the nutrition front. It is so important. You would be amazed at the difference in people with there mood,anxiety,symptoms,feelings when they go from malnurished to nurished. It is like they change completly. Its amazing. I have been wondering how or if they test for lack of fat in the body. Not on the body because I'm healthy weight and now I eat dietary fats but from so many years of not.I was reading about how people who don't absorb fat that nerve damage can happen so I wonder if it could be similar in someone who for so long was malnurished and lacked that nutrient. I would think since I have had so many blood tests for so many issues they would have but I know not to assume. Just like when people have the b12 issue it takes awhile once the damage is done. If that makes sense?

Yes Daniella, it all makes very good sense ...I do hope you can find some relief med/s, it must be so frustrating, i do think that your best chance of finding some sort of relief would hopefully come from a good pain specialist/s....seeing the tablet form isn't working for you, i am wondering if by-passing your metabilism and using those pain patches that DanP and others speak of, might help you more......... and i am with you 100 % about the nutriention, the differance can be remarkable, as i was running on very low b12 for god knows how long, it changed me from being someone that had big trouble making it through to lunch time at work, i would have to have a nap before finishing off the rest of the day which at the time i was just putting down to long hours of driving, how wrong was i.
I personally don't know much about body fat storage, someone else here may be able to help you with that, i do think it is well worth pursuing though, you may be onto something there, hopefully.

Brian,
I'm really happy for you, I'm sure that all you've done over the years w/ diet, exercise, and B12 have helped greatly as well - you certainly prove that the right environment can give rise to healing and nerve regeneration - I hope that your future is permanently pain and tramadol free!!!
Your news gives hope to anyone who suffers and struggles w/ PN

Alkymst

Thanks Brian. What patches are you talking about? I have the lidocaine patch and it doesn't help. I'm wondering about the fennyle(?) patch or something. I'm going to ucla I think if I go there which I think I'm going to for a trial and my apt is on the 4th. As for the fat what kind of doc would that be? I have a reumotolgist apt at ucla too on the 17th. I already went to the endocronolgist. You know before this I was on every med well not every but you know what I mean. It never helped. I only had weird issues. For ex I was on such a high dose of trazedone for sleep. It never helped the sleep and at such high dose I got migranes and walked into walls but was up. I need to find the right doc so far all the supposed "best" have been what I call nicken poops.

Daniella - the 'pain patches' Brian was talking about are the Duragesic Patches - the generic form is called Fentanyl Transdermal System and this is what I am using with excellent results.
For 15 years I was in horrific pain and all the usual meds the 'super specialists' RXed simply did not work for me. Neurontin (which never had FDA approval for use in treating Periphearl Neuropathy), Topomax, and all the other anti-seizure drugs the neuros were RXing did nothing for me. Cymbalta and even Lyrica didn't work on my pain. In Jan 92 my PCP suggested we try the Duragesic patch so on 1-9-02 I used my first 50strength Duragesic patch and I noted a fair reduction in pain but knew it was gonna have to be increased so on 4-10-02 we upped it to the 75 strength patch and that was even better. I got along pretty good for a few months but the pain still persisted and on 11-18-02 we started the 100 strength patch - and we were changing these patches every 3 days. My pain had always been constant and at the 7 to 10 level. Someone told me that if it was ever a 10 I would be unconscious - well, I was never unconscious so I conceded it must have only been a 9.5. (never argue with "experts") LoL
Anyway, I remained on that strength until April 24, 2007 at which time we upped the patch to 125 strength changing them every 2 days. We started changing every 2 days about 12-14 months ago because they were just not lasting that exta 24 hours. Since I started on the 100 strength patches that 7 to 9.5 pain has been reduced to a very liveable 2 - 4. I've been at the 2 to 4 level so long now that I can just about ignore it. I am 75½ years old and walk 1-2 miles each day (due to the heat I have been using my wife's stationary bicycle riding 7 to 10 miles each day). And, I still drive my car without incident. The only side effect I have is constipation which I control with OTC meds. I have been using these patches for 5½ years and, for me, they have done a fantastic job. The fentenyl in these patches are much stronger than morphine (ask your pharmacist) but the medication is absorbed slowly thru your skin into your blood stream....and I never feel any 'high' or drugged feelings. I function normally and live my life as best as a 75 year old can. I am dependent on these patches but am NOT addicted - repeat, NOT addicted!!! There is a huge difference in the two and if anyone doesn't know that difference then I urge you to research the subject.
I am prepared to go to 150, 175, or 200 strengths should it ever become necessary and as long as I can function normally. Pain control and the ability to function normally is the essence of pain management and for 5+ years I have achieved that and I pray this will continue till the end of my days.

Thanks Dan. I'm going to ask the pain doc on Wed about it and then also the other one in Sept. I would be willing to try that if they think appropriate. You sound like me on the med front and trying so many. Are the patches the size of the lidocaine ones?I didn't find that helpful but I read about the patch you have and that is a narcotic.Its safer though cause its lower dose? Thats awesome about how active you are. You give me hope.

Quote:

Originally Posted by daniella (Post 141006)

daniella, I am glad Dan chimed in and explained it properly, i was hoping he would..... As for the stored body fat you have got me there, off the top of my head i would have said Endo, but we need Mrs D really, but there are some really clever people here i hope will chime in and help you with that, maybe David or Glen or other knowledgeable ones here, might know.
Anyway i hope you find some relief and the sleeping would have to improve once you get the pain levels down.
good luck
Brian :)

This is such good news---you must have a lot of left-over magnets these days!

How nice.

Interesting that Dan's PCP was willing to help him with this. I have not found that all neurologists are willing to try very many different things. How nice that he addresses the problem as a means of giving Dan a life...

Cathie

Thanks Liza, yeah your not wrong :D there getting a bit dusty now and thats exactly how i would like them to stay :D :D
take care
Brian :)