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-   -   Its a Miracle! I'm Cured. No more PN (https://www.neurotalk.org/peripheral-neuropathy/202830-miracle-im-cured-pn.html)

eddie27970 04-01-2014 08:44 AM

Its a Miracle! I'm Cured. No more PN
 
I wish. April Fools :D. Nope, I've still got it. Burning and stinging in both feet, sometimes so bad i don't get out of bed, as much as 5 days straight, not even to eat. New here. Been reading posts for over a week. Went out and spent over $100 on vitimans and supplements, ordering some from Amazon, all based on what I've read here. Desparate for relief, taking everything, had reaction that left me freezing and running temp over 101, for about 6 hours. I commonly switch back and forth between Lyrica and Gabapentin about every other week, 6 pills a day. But enough about me. Many here are worse-off than I am. Just wanted to see if I could get a Smile out of someone this April Fools Day.

Lewie 04-01-2014 12:18 PM

Quote:

Originally Posted by eddie27970 (Post 1060686)
I wish. April Fools :D. Nope, I've still got it. Burning and stinging in both feet, sometimes so bad i don't get out of bed, as much as 5 days straight, not even to eat. New here. Been reading posts for over a week. Went out and spent over $100 on vitimans and supplements, ordering some from Amazon, all based on what I've read here. Desparate for relief, taking everything, had reaction that left me freezing and running temp over 101, for about 6 hours. I commonly switch back and forth between Lyrica and Gabapentin about every other week, 6 pills a day. But enough about me. Many here are worse-off than I am. Just wanted to see if I could get a Smile out of someone this April Fools Day.

How did you get cured? Thats why I clicked. Ya pretty funny. A good first post for sure.

cat1234 04-01-2014 12:19 PM

Quote:

Originally Posted by Lewie (Post 1060719)
How did you get cured? Thats why I clicked. Ya pretty funny. A good first post for sure.

You got me!!!:eek::eek:

Susanne C. 04-01-2014 12:22 PM

Quote:

Originally Posted by eddie27970 (Post 1060686)
I wish. April Fools :D. Nope, I've still got it. Burning and stinging in both feet, sometimes so bad i don't get out of bed, as much as 5 days straight, not even to eat. New here. Been reading posts for over a week. Went out and spent over $100 on vitimans and supplements, ordering some from Amazon, all based on what I've read here. Desparate for relief, taking everything, had reaction that left me freezing and running temp over 101, for about 6 hours. I commonly switch back and forth between Lyrica and Gabapentin about every other week, 6 pills a day. But enough about me. Many here are worse-off than I am. Just wanted to see if I could get a Smile out of someone this April Fools Day.

Not many of us are worse off than you, Eddie, five days in bed! That is horrible. Has your doctor talked about pain management? You should be able to get something that will reduce the pain and give you some of your life back. Severe cases of PN need a good pain medicine in addition to Gabapentin or Lyrica, as well as an anti- depressant. Have they tried anything else to help you? Gabapentin/Lyrica is not a pain medication, it can reduce some symptoms but is not enough in many cases.

beatle 04-01-2014 11:10 PM

Good one!

When did your PN start? I hope you do better than me. I've been in bed mostly for over a year. Numb feet with sharp pains and a host of other symptoms. I can barely walk.

Hang in there and don't lose your sense of humor :)

St George 2013 04-02-2014 09:17 AM

eddie :)
 
Thanks ! I needed a laugh this morning.....keep the sense of humor....it will come in very handy with this condition :)

Take care,

Debi from Georgia

eddie27970 04-02-2014 11:17 AM

Thanks to all. Didn't expect such responses. Put smile on my face to see these. Glad i could put smile on other faces.

As to Pain Meds, for over 10 years, I've been getting the exact same Morphine and Percasets from the Veterans Administration hospital. It's 100mg Morphine, 2 twice a day, and 5mg Oxycodone Percasets, 2 each as needed, 240 tabs per month. And, of course, they stopped helping about 9 years ago. At first, it's because of motorcycle accident that destroyed right foot. The limping went to damage in lower back discs. Then to Siatica in both legs. And then to PN in both feet starting about 4 years ago. MRI past January showed all Lumbar discs depleated, bone on bone, and arthritus in tail bone closing up holes little nerves pass thru to later join again to form Siatica Nerve. (I had always wondered exactly where in my back does this Siatica nerve come out of?) Come to find out, it's not one nerve exixting from one spot, but rather several small ones that come out in lower lunber area and tail bone that then join together to form the one nerve named Siatica. And all those little ones are pinched in my back.

Recently, due to "some study" the VA reduced Morphine to 30mg, 4 twice a day. .....about half of what I used to get, that hasn't helped in many, many years. The only other doctor I see is a Neurologist about 35 miles away. The side effects of Gabapentin had me "zoning" meaning eyes wide open but not comprehending anything going on. And I totaled a new Prius one morning, while "zoning" Ended up on 6 Lyrica a day, but had to cut myself back due to side effects, eyes open but only seeing black and white specs, like old TV not on a station, and muscle jerks, like jerking steering wheel across center line and almost head on into a van. Trying to eat was fun. Uncontrollable jerking sending spoon and food up and over back of my head.

No longer able to work. Already turned down for SS Disability due to lack of evidence I could work in another field other than my last job as millwright at saw mill for 18 years. Headed to lawyer's office to day for appeal. (Had thought SS would send me to doctor for more evidence when filling out form on Internet.) Also trying for more percentage from VA due to complications form foot injury.

And no help on pain. Other than cutting myself back on morphine to 2 at a time when I can tolerate it. Then taking extra when I cannot tolerate, such as today. Just to give example of how bad I suffer, have house I could rent "if" I could fix up some things on inside. Need about 2 good weeks of work. And have not been able to put in 2 days worth in last 6 months. Just cannot stand with PN in feet. And when I try, back pain puts me back down. Thus, the 4 and 5 days at a time, laying in bed, with only relief coming in my dreams, where I'm up and about. Hate to wake up, cause first thought is how bad feet burning.

PN in feet comes in stages. Just planter area burning and stinging. Next is the toes, feeling as if in a vice being squeezed, with a blow torch burning skin off. Then it travels up to ankles, stinging, like they are right now. But I need to go see this lawyer. Live out in country, closest big town is 35 miles away. All the Neurosurgeons, good Pain Doctors, and so forth, are about Hour and Half away. Hard for me to sit in car and make it that far. Have not been, yet.

Sorry for so long. and dumping so much at one time. Hope you-all doing better than me. And many times, I feel I'm not nearly as bad off as others on here.

Susanne C. 04-02-2014 01:00 PM

Thank you for posting. I was mistaken, I thought that you were only taking Lyrica and Gabapentin. With what you have been on I doubt that pain medication will help you unless it is one of the newer types with the pump implant. It would certainly be worth exploring that possibility.
I am currently getting decent relief from the MS Contins, 30 mg. 3 times per day, but I do not have all the complications in the back that you do.
I hope that you get some help and relief soon.

St George 2013 04-03-2014 01:40 AM

Eddie :)
 
Quote:

Originally Posted by eddie27970 (Post 1060912)
Thanks to all. Didn't expect such responses. Put smile on my face to see these. Glad i could put smile on other faces.

As to Pain Meds, for over 10 years, I've been getting the exact same Morphine and Percasets from the Veterans Administration hospital. It's 100mg Morphine, 2 twice a day, and 5mg Oxycodone Percasets, 2 each as needed, 240 tabs per month. And, of course, they stopped helping about 9 years ago. At first, it's because of motorcycle accident that destroyed right foot. The limping went to damage in lower back discs. Then to Siatica in both legs. And then to PN in both feet starting about 4 years ago. MRI past January showed all Lumbar discs depleated, bone on bone, and arthritus in tail bone closing up holes little nerves pass thru to later join again to form Siatica Nerve. (I had always wondered exactly where in my back does this Siatica nerve come out of?) Come to find out, it's not one nerve exixting from one spot, but rather several small ones that come out in lower lunber area and tail bone that then join together to form the one nerve named Siatica. And all those little ones are pinched in my back.

Recently, due to "some study" the VA reduced Morphine to 30mg, 4 twice a day. .....about half of what I used to get, that hasn't helped in many, many years. The only other doctor I see is a Neurologist about 35 miles away. The side effects of Gabapentin had me "zoning" meaning eyes wide open but not comprehending anything going on. And I totaled a new Prius one morning, while "zoning" Ended up on 6 Lyrica a day, but had to cut myself back due to side effects, eyes open but only seeing black and white specs, like old TV not on a station, and muscle jerks, like jerking steering wheel across center line and almost head on into a van. Trying to eat was fun. Uncontrollable jerking sending spoon and food up and over back of my head.

No longer able to work. Already turned down for SS Disability due to lack of evidence I could work in another field other than my last job as millwright at saw mill for 18 years. Headed to lawyer's office to day for appeal. (Had thought SS would send me to doctor for more evidence when filling out form on Internet.) Also trying for more percentage from VA due to complications form foot injury.

And no help on pain. Other than cutting myself back on morphine to 2 at a time when I can tolerate it. Then taking extra when I cannot tolerate, such as today. Just to give example of how bad I suffer, have house I could rent "if" I could fix up some things on inside. Need about 2 good weeks of work. And have not been able to put in 2 days worth in last 6 months. Just cannot stand with PN in feet. And when I try, back pain puts me back down. Thus, the 4 and 5 days at a time, laying in bed, with only relief coming in my dreams, where I'm up and about. Hate to wake up, cause first thought is how bad feet burning.

PN in feet comes in stages. Just planter area burning and stinging. Next is the toes, feeling as if in a vice being squeezed, with a blow torch burning skin off. Then it travels up to ankles, stinging, like they are right now. But I need to go see this lawyer. Live out in country, closest big town is 35 miles away. All the Neurosurgeons, good Pain Doctors, and so forth, are about Hour and Half away. Hard for me to sit in car and make it that far. Have not been, yet.

Sorry for so long. and dumping so much at one time. Hope you-all doing better than me. And many times, I feel I'm not nearly as bad off as others on here.

I know exactly what you mean about traveling any distance. I rarely drive anymore but have a husband, kids and grandkids that will lug me around to dr's appointments. That's one reason I cancelled an appointment I had at Emory Neuropathy Dept in ATL......just riding up there would be bad but getting out and traveling in a wheelchair all through that huge hospital....no thanks....not yet anyway. I'm on 1800 mg of gaba and 60 mg of Cymbalta (was on 90 mg Cymbalta but took myself back down to 60 night before last because I had the day from H E L L on Tuesday) shaking inside and out, dizzy beyond words, foggy headed, minor muscle twitching and nerves hurt everywhere. Guess I did the right thing because yesterday morning I woke up and actually had the best day I've had in months ! Scared the heck out of me....lol

For some reason, hoping it was the 90 mg of Cymbalta, my toes have went crazy.....burning fire....all of them, all at once. Haven't had that exact sensation before. Lovely. And the lightening strikes trying to come out of my big toes is always fun too :)

Seeing as how the meds affected your driving I'm thinking you'd need to stay away from millwright work.....lol....sorry.......I agree that you probably need a lawyer.....I was approved during my reconsideration stage for small fiber neuropathy. Seems as if the problems with your back and PN that you could get disability. Please don't give up on it. Just keep pushing and asking and filing.

Have the dr's never tried you on other pain meds ? I'm on vicodin and xanax as needed and it keeps the pain tapped down but not gone by any means. I know there are many other pain meds out there but I'm just starting this SFN journey and that is the only one I've used so far. My neuro doesn't give pain meds so I get them through my wonderful PCP. She's actually the only one I'll let prescribe them for me.

Dumping or venting is permitted anytime and I sure encourage it myself :)

Keep us posted please.

Debi from Georgia

eddie27970 04-03-2014 02:49 AM

Well, Ddbbie fom GA , and Susanne C., I'm glad to see I didn't talk to much in earlier message. I don't get out and about like I used to. And it seems I can get carried away with messages more-so now, than ever before. I had made a list of pain meds to ask my VA doctor about? He's been good about calling me when I call the hospital and ask to have him call me. Appointments are far and few between. In last phone call and asking about other pain pills he explains the VA pharmacy does not carry them and this is why I can only get. The morphine and Percosets, because this is the strongest the VA pharmacy stocks. Anything different and or stronger will have to come from an "outside" pharmacy. He tried to put me for other meds, but this was disapproved. And he also put in a request for the VA to pay for me to see an "outside" pain doctor. And the powers to be also disapproved this. One of the meds I hope someone will let me try is LEVORPHANOL. Wikipedia says its more useful for Neuropothic Pain. Anyone heard of this or tried it? I'm about to believe, due to so many years of the VAs same pain pills, I must be what they call opied tollerant. OK enough from me for now.

But short note on visit to lawyer today for help on SSDisability. Next step is a Review. After that, some 12 to 13 months later is the Hearing before a Judge. This guy today says they mainly get everything ready for the Hearing because in NC about all Reviews are denied. He said several times he is surprised i was denied because of all the medical proof. The denial letter makes a unique point of saying there is a lack of evidence to show my ability to work in some other fidld nof work, and therefore I'm not disabled according to their regulations. To me, in other words, they acknowledge all medical problems. But lack proof I cannot work in some other profdssion. Told this lawyer I feel there should be a doctor report that summerizes all my problems and relates this to my inability to work at all, let aloneretrain for something different. He agreed. And is sending forms fordoctors to answer that would normally be presented at the Hearing, but is going to have these orms added for the Review in 2 to 3 months. So, wish me luck (and more importantly, Prayers Please. Than you.)

St George 2013 04-03-2014 06:50 AM

eddie
 
On SSDI......Please stay in contact with your lawyer and read up as much as you can on getting disability. I also included letters from former co-workers stating how I loved my job and that they thought that if I could work I'd be right out there getting a job.....letters from my son, daughter, daughter in law and my very wonderful gyn ! I got that idea from the internet......when you fill out the daily living forms you need to think about how you feel on your worse day and use that info. After reading your posts I'm sure you are like me and that my worse day sucks and I'm in bed all day. And side effects of your medications are very important also. I had so much foggy brain at the time I had to look up the effects of each med on the internet and pick out what the side effects were. Didn't have sense enough to just name them by myself. Nothing worse than trying to fill out very important paperwork when you can't even think straight :)

I actually cried when they approved me.....just such a relief and I also knew that I could concentrate on my SFN without that big SSDI cloud over my head.

Boy that med you talked about above, Levorphanl looks like some mean stuff.....you know it's only given by injection right ? If you said how old you are I missed it totally...(I'm 51) are you on Medicare ? What about Tri-care ? My mom and dad use/used that since he retired from the Air Force. Some of her prescriptions are like $5.

And I'm a chatty Kathy.....also up for a good jawin'. When I feel like it. I'll go missing for a day or two from the site because I feel like poo but always get back on looking for info or something to get into :)

Let me know if any of this helps.

Debi from Georgia

Rosie33 04-03-2014 07:48 AM

Quote:

Originally Posted by eddie27970 (Post 1060686)
I wish. April Fools :D. Nope, I've still got it. Burning and stinging in both feet, sometimes so bad i don't get out of bed, as much as 5 days straight, not even to eat. New here. Been reading posts for over a week. Went out and spent over $100 on vitimans and supplements, ordering some from Amazon, all based on what I've read here. Desparate for relief, taking everything, had reaction that left me freezing and running temp over 101, for about 6 hours. I commonly switch back and forth between Lyrica and Gabapentin about every other week, 6 pills a day. But enough about me. Many here are worse-off than I am. Just wanted to see if I could get a Smile out of someone this April Fools Day.


You got a smile from me....I wish you luck, and will keep you in my prayers...God Bless!:hug:

CeCe55 04-03-2014 10:14 AM

Your post certainly caught my attention eddie! I am cured also, at least IN MY DREAMS. Thanks for the much needed smile. CeCe.

eddie27970 04-03-2014 01:53 PM

WOW!!! Talk about Pain!! Trying to use smartphone to write a post is a Real Pain. My laptop has a Hole in it, a Black Hole. Whenever I try to use it, I get sucked in to its Internet Black Hole for hours and hours.

No. I had no idea Levorphanol is only avaliable as a shot. I had put my hopes on it. And felt my heart sink to my stomach when I read your saying its a shot. That only leaves Hydromorphone (Dilaudid) I've had this about 3 times over the past 10 years. And they helped, a lot. I called them my "go to Hell pills." Because the Whole World could "go to Hell" and I wouldn't care. But doctors did not want to prescribe contiuosly, regularly.

I'm a Young 58 year old male. I was the Millwright at a log cutting saw mill for the past 18 years. But the last 5 years was a down-ward spin into bankrupcy and selling off land and all. I was their last employee. I had the same supervisor this.whole time , up to the last 2 months when he left to go work at another saw mill.

I only have 1 letter in support of my SSDisability, and its from my supervisor, covering my downward spin, from his hiring extra helpers for me, to my hurting so bad that I could only work 2 or 3 days a week, and how I was allowed to sit and prop my burning feet up.for half an hour 5 and 6 times a day.

Your getting letters from family and friends has inspired me and added little more "hope" for me. I'll be working on this. There is a lot of people that know my condition. I just got my last unemployment check. I have a house I normally rent for $600. But it has been empty close to year because I simply cannot finish the work. If the PN in my feet slacks off enough to where I can walk around, then it's only a matter of 10 to 15 minutes before my back is killing me, as in looking for a hole 6 foot deep to crawl in and be covered up.

Yes, have Tri-Care Standard. I was 30% Medically Retired crom the.Coast Guard due to motorcycle accident in 1978tatdestroyed my right foot. It's just like I had been in 20 years, except my retired pay is much, much less. And yes, some generic meds are cheap as $3.00. Name brand Lyrica is about $35 a month. What gets me is, its same price for 1 month, no matter if for 30 or 240 Lyrica per month.

I'm very Thankfull for all replys and any Suggestions, as well as bearing how others live and cope with PN. A criend from Scotland I met on FaceBook PN told me of NeuroTalk. I started reading here little over 2 weeks ago and went out and spent over $100 on Virimans and ordered Benfotiamine and D-Ribose from Amazon. Can't say if any of all this is helping. But can say when I went overboard taking it all I did get sick; freezing cold with temp little over 101 degrees.for about 6 hours for2 nights in a row. Stopped taking everything and went back with a few at a time to zee if I can figure out what I did to myself. OK enough about me.

One last thought on letters to SSDisability: I have about 12 people that are waiting to rent house. Several have beeninside and I showed them what's needed to be done. It's a funny thought to show SS letters from hopefull renters who can show my pain is keeping them from renting. ;-)

doubleagle15 04-03-2014 10:57 PM

Quote:

Originally Posted by eddie27970 (Post 1060686)
I wish. April Fools :D. Nope, I've still got it. Burning and stinging in both feet, sometimes sesential still get out of bed, as much as 5 days straight, not even to eat. New here. Been reading posts for over a week.without painout and spent over $100 on vitimans and supplements, ordering some from Amazon, all based on what I've read here. Desparate for relief, taking everything, had reaction that left me freezing and running temp over 101, for about 6 hours. I commonly switch back and forth between Lyrica and Gabapentin about every other week, 6 pills a day. But enough about me. Many here are worse-off than I am. Just wanted to see if I could get a Smile out of someone this April Fools Day.

I have improvement in my hands and feet by taking a vitamin called long life vitality by doterra. I also rub my feet with esential oils by the same company. I have not stopped my meds but I have cut back some feet no longer burn and I rub them witout pain


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