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Does anybody have Peripheal Neuropathy?

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Posted 8/24/2012 6:44 PM (GMT 0)
Hi to everybody in the Forum.  I sometimes type a message and end up discarding it. Not now though. I have this disorder/disease, whatever it is.   It has nothing to do with being a Diabetic. 

I have the allover type of burning that some diabetics have, I think. A big flare it will be in my mouth.  That's when I go to unhappy face cry     But it is like having a second degree sunburn on my skin but I didn't get the burn for real.  It's widespread type of pain that has a lot to do withmy diet.  There is a lot of symptoms.

I have questions about this ... and if anybody out there has it, that would be nice (not for you) but for me. When I talk with friends and email buddies, fb messages, etc., they look at me like I am a cracked nut, or tell me I need to get to a doctor.  This is truly a disease and I have it.  The big thing is I don't get enough sleep at night sometimes, and if and when I nap, I will wake up like with terrible skin burning sensations all over my body.  That's the only thing I can say about it. I take Lyrica and B12 for this particular disease.  Was getting B12 injections in 2008 in a weekly dose and doing that for around six weeks. That was a disaster as I was like a gearhead driver in a racecar it you get my drift.  LOL.

I have to do something because my B12 levels always stay at very  very low levels because my body don't do what it's suppose to.  I have had this, by the way, for over 20 years.  Imagine that, and not telling anybody about it for about 10 years because what I said in the first or second paragraph. 

P.S.  by the way, regarding my withdrawal that I went through,  I am having 'NOT' good day today, but yesterday wasn't too bad,  and I guess that is the highs and lows of withdrawal, too. 

hugs to all, grannytoo   yeah

 

Posted 8/24/2012 6:46 PM (GMT 0)
I am sorry, this is going to sound really weird, but I will say it anyway. Does anybody ever have that metalic taste in your mouth from any diseases you may have or even the neuropathy you have?

grannytoo, always forget stuff
Posted 8/24/2012 8:02 PM (GMT 0)
Hi grannytoo

I don't have neuropathy but I wanted to say i'm sorry that you are hurting so much with this. I can see why you can't sleep if you are having this burning feeling in your skin all the time. Have you tried any of the nerve pain meds for this? Wish I could help you. Please keep posting and vent when you need to.

Suzane

Posted 8/25/2012 3:35 AM (GMT 0)
Hi Grannytoo. I've been going to a Neurologist Past couple months to find out why I have numbness/burning in my feet. He said its was Neuropothy. I had MRI last week and they found a bulging disc "not surprised"! Anyway I go back 1rst of Oct. to see where we go from there. So far mine is in my feet and couldnt imagine it all over. I know it can be many things. My PCP told me that hes confident that I have Reflex Sympathetic Dystrophy and if my Neurologist didnt find anything he would put me on a nerve pain med. Think thats all I can tell you, wish I could help!
BTW I have metallic taste in my mouth sometimes. Never put alot of thought into it. Have you been to a neurologist? I'll be looking for a Grannytoo post to see if you get your answers and get well!!!
Posted 8/25/2012 4:10 AM (GMT 0)
I have peripheral neuropathy, but it is not from diabetes.  It is from fibromyalgia.

Most of the time this neuropathy affects my legs and feet.  I have pain and a gnawing, pulling sensation in both my legs, ankles and feet.  The only thing that helps this is Lyrica and the Oxycodone that i take.

Sometimes the pain goes into my joints or tendons, not sure which.  The pain can extend to my arms, wrists, fingers , shoulders and neck too.  Not really calling this pain the neuropathy, but more from the fibromyalgia I think.  Sometimes, I have to add 600 mg of ibuprofen to the mix to help ease the pain too.

Just thought I would share this with you.  I hope you get the answers you seek.  I went to a rheumatologist, and then a pain specialist for my pain.

Good luck to you.  Hope you have a great weekend.  God bless.

Lindaloo

Posted 8/25/2012 8:40 AM (GMT 0)
Thank you all for responding.  I hope  you all get yours under control too.  It's a weird feeling and yes, I don't get much sleep which is not good on the overall whole health issue. 

I have Fribromyalgia too and take Lyrica. And RLS.  I saw a neurologist in Illinois when I lived there a few years ago. I did not pass the Nerve Conducter test but wasn't this bad in the 90's and 2000s. As my Arthritis is raging in my body at a rapid rate, this seems to be getting worse.  The Lyrica occassionaly makes me sick. I have been on it for a long time.  I have a Rheumatologist here in VA, and he makes sure I have plenty supply of it. I need to get a neurologist for sure and maybe I can get some relief.  They do everything with the Central Nervous System. 

Thank you and if I find anything out for us, I will post it.  You all take care and have a great weekend.

hugs grannytoo

 

Posted 9/5/2012 10:41 PM (GMT 0)
Hey LindaLoo, when I was reading your post, I was caught staring at it for a few minutes, because you were describing your symptoms exactly like mines. This is crazy, Do you know how long I have been trying to explain these burning symptoms to people and my PM. Since having my third Laminectomy fusion, my leg pain and the burning has gotten worse. The pain starts from the L4-L5 area of my back, run down to my hip, from my hip through my legs and to the bottom of my feet where it sits and throbs. The burning is so bad. The only meds that work for me or the Lyrica and the Oxycodone. I have been given the Fentynal patch whereas I had to ask my PM to please take me off it, it did nothing for my pain level. I cannot even turn on my SCS when Im burning so much. The pain goes deep into my bones sometimes, causing my toes to open and numb and my feet began to twist. I do understand that its Peripheal Neuropathy, but I'm also thinking that it is a form of RSD. what do you think?

I'm so tired of playing guessing games with my doctors. I want a diagnoses and I want the right type of pain meds to help me control this demon. I cannot sit or stand too long before the pain starts.

Please get back to me on this one.

Lynn

Failed Back Surgery Syndrome
3/2008- Laminectomy Fusion
7/2008- Laminectomy Revision
2011- Spinal Cord Stimulator
2012- 3rd Laminectomy Fusion
Posted 9/6/2012 12:40 AM (GMT 0)
Lynnack,

I don't think my pain has anything to do with restless leg syndrome, but at this point, I keep an open mind. I know it hits me when I awake and every four hour to six hours when I need to take the oxycodone again. I know the Lyrica helps too, because when I don't take it, it hurts much worse. Like I said, I need the motrin too at times. I do whatever it takes to find relief. I take hot baths and it is such a relief for about an hour. Then the pain comes back.

As for my back, I had back surgery about thirty years ago and on and off I end up with sciatica that runs down my right leg, radiculopathy. During that time, I wear Lidocaine topical patches on my lumbar spine on each side and I get almost immediate relief. I highly recommend it to you and to anyone that has back pain such as sciatica.

Now my pain specialist follows my case and prescribes my medication. She is very good and I have a good rapport with her. I think that is half the battle with chronic pain- that you have a good doctor who listens to you.

I hope something I have said may have been of some help to you. Keep me posted, will you. And God bless you.

Lindaloo
Posted 9/6/2012 9:33 AM (GMT 0)
Hi Grannytoo, I also have neuraphathy in my feet it is so painful. I started with a neurologist 3 mos. ago but the only thing that seems to help me is capasian ointment. It is made with the hot peppers. They call it the hot pepper cream. I have to have B12 shots which my doctor wanted to start the other day. Is this the reason for the neuropathy? Does anyone know?

Jazzie
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