[eddie27970]

I wish. April Fools . 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]

Originally Posted by eddie27970

I wish. April Fools . 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]

Originally Posted by Lewie

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

You got me!!!

[Susanne C.]

Originally Posted by eddie27970

I wish. April Fools . 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]

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]

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]

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.]

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]

Originally Posted by eddie27970

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]

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.)