http://neurotalk.psychcentral.com en Mon, 23 Nov 2009 21:30:59 GMT vBulletin 30 http://neurotalk.psychcentral.com/images/ca_evo2/misc/rss.jpg http://neurotalk.psychcentral.com http://neurotalk.psychcentral.com/showthread.php?t=108796&goto=newpost Mon, 23 Nov 2009 04:41:36 GMT Hi, I have had a high C-reactive protein for several years. Been tested for Arthritis conditions. Test are always negative. Do any of... Hi,

I have had a high C-reactive protein for several years. Been tested for Arthritis conditions. Test are always negative.

Do any of you have issues with chronic inflammation with the Neuropathy?

BonDon ]]> Peripheral Neuropathy BonDon http://neurotalk.psychcentral.com/showthread.php?t=108796 http://neurotalk.psychcentral.com/showthread.php?t=108793&goto=newpost Mon, 23 Nov 2009 03:33:51 GMT Hello Everyone,
I'm new to this forum and am in desperate need of help in dealing with this neuropathy. I'm 25 years old and first started experiencing tingling in both hands in February 2009. After numerous MRI's and an EMG, the neurologist diagnosed me with Small Fiber Neuropathy. By then I was experiencing burning pain in my upper and lower extremities, and at times, heaviness in my legs. I have had all kinds of blood work done and the cause has yet to be found (although I have kind of given up). I'm in pain 24/7, have very little strength to do anything, and feel like all my muscles are constantly aching.
I have difficulty swallowing pills, so I am taking Neurontin in the liquid form, but it isn't helping much. I'm on a low dose, but going any higher gave me severe headaches. I tried the lydoderm patch, but that didn't do anything for me. My neurologist said there really isn't anything he can do for me and referred me to a pain specialist.
I'm depressed, sad, and have begun to feel angry. I don't know what to do and at the same time feel that if I don't get this neuropathy under control I just may lose it.
A recent episode of really severe pain brought me to the emergency room, but even they couldn't help me. At times I feel like my entire body is burning.

I'm thinking of going to Mayo clinic's pain rehab program in Minnesota as a last resort at getting my life back. Have any of you been there, and was it helpful in managing the pain?

I'm feeling so hopeless right now.
Thank you so much for reading this. ]]> Peripheral Neuropathy MiriamS http://neurotalk.psychcentral.com/showthread.php?t=108793 http://neurotalk.psychcentral.com/showthread.php?t=108784&goto=newpost Mon, 23 Nov 2009 01:01:13 GMT New neuro prescribed it 2 weeks ago. I'm just on 20 mg. per night. It lets me sleep soundly and even if I wake up to use the loo, I can fall right back.

The doc said he's dx'ing it instead of elavil which had caused a lot of brain fog when I took it about 4 years ago. My main issue with doxepin is that it causes pulsating, tremory feelings throughout my body which are quite unpleasant. Doc confirmed that this is one of its side effects.

Does anyone have any experience with this drug? I'm thinking of getting off it because of the internal shakiness. ]]> Peripheral Neuropathy antonina http://neurotalk.psychcentral.com/showthread.php?t=108784 http://neurotalk.psychcentral.com/showthread.php?t=108640&goto=newpost Sun, 22 Nov 2009 01:38:05 GMT Hi everyone I'm new here....when I joined, I was floored at how many people and posts there are with peripheral neuropathy ! :grouphug:
That in itself is quite a comfort - knowing how easy it will be to talk to you...

I won't go off on a long speal, but in a nutshell here's me : Small Fiber Neuropathy of 5 years, It's in both legs and it's getting harder and harder to walk, go upstairs,,etc... The pain is absolutely intolerable... tried ALLLL the standard meds to no avail... the only thing that has kept me from losing my mind are the stronger opioids, but I'm so tired of being on them and my tolerance just keeps going up. hormones are depleated, etc etc.... Desperately want my life back, so am going to do the SCS (spinal cord stimulator) in the hopes that i can back way off of these meds. HOWEVER, after being on the Fentanyl 100 mcg patches for over a year I know it will not be easy to quit. I've heard of how awful the withdrawals are and I've experienced it to a small degree when I've tried to taper down.....i quickly slapped another patch on cuz i realize how terrible it's gonna be and i don't think i can take that degree of torture!

I will be talking to my pain doc soon about this, but i wanted to get support and advice from the ones i trust the most - - the patients !
Would appreciate input from you, good OR bad. I must face the reality of what I'm dealing with...
I will go ahead and submit this post, and in the meantime I will look thru the stickys. I know there is a lot of wonderful advice and info on PN.
My other concern besides the withdrawal, is HOW to determine my pain level during my SCS trial implant because to be quite honest, I'm afraid I won't know where my original pain ends and the withdrawal pain begins !!

Please Help !
Rae
:thud: ]]> Peripheral Neuropathy Rrae http://neurotalk.psychcentral.com/showthread.php?t=108640 http://neurotalk.psychcentral.com/showthread.php?t=108628&goto=newpost Sat, 21 Nov 2009 23:33:48 GMT Hi All. Last Thursday, Alan and I went into NYC to the CBS building. They hold the Peripheral Neuropathy Support Group meetings every 3rd Thursday... Hi All.

Last Thursday, Alan and I went into NYC to the CBS building. They hold the Peripheral Neuropathy Support Group meetings every 3rd Thursday of each month.

I brought along my camera. I only got 3 photos but at least you can see the size of the room and the immense table we all sit around.

I shall bring my camera next month for the next meeting. It's December 17. If you wish any info, just contact me.

I put the photos in my photo album.

Here's the link to it. The first three photos are the ones I took at the meeting.

http://neurotalk.psychcentral.com/album.php?albumid=30

Melody ]]> Peripheral Neuropathy MelodyL http://neurotalk.psychcentral.com/showthread.php?t=108628 http://neurotalk.psychcentral.com/showthread.php?t=108608&goto=newpost Sat, 21 Nov 2009 10:38:27 GMT Hi there. I have not posted here for a long time. I logged on the other day and saw a post from Mrs d saying that anti seizure drugs can cause a... Hi there. I have not posted here for a long time. I logged on the other day and saw a post from Mrs d saying that anti seizure drugs can cause a depletion of folic acid and calcium. I have been on Pregabalin (Lyrica) for about 2 and half years now. I have very painful hips and I am wondering if this could be a result of taking the Pregabalin. My question is where did you find out about the link between these meds and folic acid/calcium depletion as I would like to research into this and don’t know where to start.

Thanks so much

Lupin ]]> Peripheral Neuropathy Lupin http://neurotalk.psychcentral.com/showthread.php?t=108608 http://neurotalk.psychcentral.com/showthread.php?t=108585&goto=newpost Sat, 21 Nov 2009 03:24:28 GMT We had a good meeting. They showed a 90 minute movie about pain management. It was made by doctors from the State of Michigan. The whole thing was in... We had a good meeting. They showed a 90 minute movie about pain management. It was made by doctors from the State of Michigan. The whole thing was in lecture format and the doctor explained ALL about peripheral neuropathy and the various treatment methods (I'm sure we ALL know what those are). At the end of the movie, a person asked the doctor "What about Stem Cell Research". The doctor was NOT optimistic about this. She just said "there is much controversy on Stem Cell Research".

Now we all know about the various opiates, and neurontin and lyrica's and all the pain meds.

But I DID learn something new last night.

They have recently come out with lidocaine ointment. One of the guys at the meeting told us about it. Since Alan had a doctor appointment this morning, he asked his doctor, and sure enough he then got the prescription, went to the pharmacy and came home with a little tub of lidocaine ointment. 5 percent.

It looks like vaseline but smell likes spearmint. He used it this afternoon and right now it's 10:22 p.m. and I asked him "how is it working?" and he just said "so far so good".

He also has this cream called Healthifeet which he thought initially did not work, but for a few days, did work a bit.

I wonder if Alan can make his own compound, by taking a bit of the lidocaine ointment, a bit of the healthifeet cream, blending together and putting on his feet.

Might he do that? The healthifeet is supposed to encourage blood flow to the feet. Alan doesn't have a problem with blood flow, he just has zips and zaps between the toes. The healthifeet seems to make this just a wee bit better.

So why not combine the two???

Any ideas?

Melody ]]> Peripheral Neuropathy MelodyL http://neurotalk.psychcentral.com/showthread.php?t=108585 http://neurotalk.psychcentral.com/showthread.php?t=108559&goto=newpost Fri, 20 Nov 2009 23:10:11 GMT Does anyone have knowledge of Qutenza? I understand It was approved last month for the management of neuropathic pain (a capsaicin patch, applied... Does anyone have knowledge of Qutenza?
I understand It was approved last month for the management of neuropathic
pain (a capsaicin patch, applied for 60 minutes, at 3 month intervals.)

Flora ]]> Peripheral Neuropathy Flora http://neurotalk.psychcentral.com/showthread.php?t=108559 http://neurotalk.psychcentral.com/showthread.php?t=108543&goto=newpost Fri, 20 Nov 2009 18:23:22 GMT how long does the uping of my meds take to work it really really burns please help how long does the uping of my meds take to work it really really burns please help ]]> Peripheral Neuropathy sheila http://neurotalk.psychcentral.com/showthread.php?t=108543 http://neurotalk.psychcentral.com/showthread.php?t=108541&goto=newpost Fri, 20 Nov 2009 17:32:58 GMT well i went to the back to the neurologist and i could not even sit on my behind for the exam i had to lean on my side ..i told him aboat the new... well i went to the back to the neurologist and i could not even sit on my behind for the exam i had to lean on my side ..i told him aboat the new syptoms of burning well he did the pin test and exam and had a complete turn around from when he told me i had idiopathic neurapathy and they dont know why all blood work normal ... now he says i have small and large sensory neurapathy and we need to find out what is causing it .. he ordered more test to see b-6 cold ogglutines methymalic acid c- reactive proteins hiv and im having another needle test next wensday i guess to see how much more the neurapathy has damaged my feet but to tell you the truth my feet arent as much a problem as my stomach and butt and face burning now its in my scalp the neurotin preetty much takes care of the stabbing and shooting pains but does nothing for the burning the amitrptaline dont work either but he raised it up to 75 mg and the neurotin up to 600 mg 5 x a day when i told him tha diazapham my regular doctor prescribed for pain he said thats not going to touch it but he dident give me any thing else ii hope the extra meds starts working soon because its still the same ..i try to read the stickys but its really hard to keep still with the burning im constantly moving so i dont think aboat the pain but sometimes its overwelming and i break down and cry then i get myself together and think aboat the little boy that told his mom he felt like a volcanoe was in his feet ..that gives me strenth.. ]]> Peripheral Neuropathy sheila http://neurotalk.psychcentral.com/showthread.php?t=108541 http://neurotalk.psychcentral.com/showthread.php?t=108534&goto=newpost Fri, 20 Nov 2009 15:59:00 GMT I went to see a podriatirst last summer for foot pain. I was told I had plantar fasciitis and told to do foot stretches, ice my feet and take pain... I went to see a podriatirst last summer for foot pain. I was told I had plantar fasciitis and told to do foot stretches, ice my feet and take pain meds. Oh and I purchased orthodics too. I did everything he said but instead of getting better my feet got worse, and I started getting numbness and burning in my feet and legs. I finally was given a nerve test in my legs and feet but it showed that everything was normal. Well everything isn't normal because my feet hurt and they burn and they get numb! My doctor's answer to all of this was to put me on neurontin which i have been taking for 2 weeks now. I am wondering if anyone else in this group has had a similiar experience? ]]> Peripheral Neuropathy Quilterpup http://neurotalk.psychcentral.com/showthread.php?t=108534 http://neurotalk.psychcentral.com/showthread.php?t=108372&goto=newpost Thu, 19 Nov 2009 01:57:22 GMT Hello, I developed a SFN after a course of Levaquin, Has anyone heard of this connection? and Hello Everyone..:) Hello,

I developed a SFN after a course of Levaquin, Has anyone heard of this connection? and Hello Everyone..:) ]]> Peripheral Neuropathy homer80 http://neurotalk.psychcentral.com/showthread.php?t=108372 http://neurotalk.psychcentral.com/showthread.php?t=108369&goto=newpost Thu, 19 Nov 2009 01:43:46 GMT I have been pain free for three days now. I've had relief in the past. Always seems to happen with no logic to it. I continue to take my Lyrica, tramadol and oxycodone.
I am exercising at a normal rate. Back still sucks. :) But, I have stopped all desserts for the past week. Now, my doc insists through all my tests, that I'm not diabetic, and I still question if it could still be an issue. For example:

GLUCOSE,FASTING 108 70 - 100 mg/dl
HOURS FASTING 12 hours

And:

CHOLESTEROL 213 0 - 199 mg/dl
TRIGLYCERIDE 174 0 - 149 mg/dl
HDL 40 >40 - mg/dl
LDL, CALC. 138 0 - 129 mg/dl
HOURS FASTING 12 hours

I just wonder if it could be this simple. Probably not. I'm not sure if I should dump the Lyrica...tramadol and or the heavy duty stuff....oxycodone 10mg 3 times a day.

Any ideas? ]]> Peripheral Neuropathy jakatak http://neurotalk.psychcentral.com/showthread.php?t=108369 http://neurotalk.psychcentral.com/showthread.php?t=108260&goto=newpost Tue, 17 Nov 2009 17:56:57 GMT i started having burning with everything else but it has gone from my back to my face even my behind in my arms and hands my feet dont get it that... i started having burning with everything else but it has gone from my back to my face even my behind in my arms and hands my feet dont get it that bad all this has happened in a period of aboat a week i take gabapenton 2400 mg a day amitriptaline 2x25 mg at night and diazapham 5mg 3x aday i have an appt with a proffeser of neuralogy on the tenth of december but i cant wait the worst part is my stomach and chest area it just burns i feel like a dragon when i breathe in or out its hot air i have an appt with my very very bad neuro tommorow but when i ask him quastians he just says he doesent know .. my reguler doctor is the one that is prescribing my meds but he says i need to make him talk to me ..and give me ansers does anyone have any advice i cant go another day like this and theres no way i can make it untill the tenth thank you very much ]]> Peripheral Neuropathy sheila http://neurotalk.psychcentral.com/showthread.php?t=108260 http://neurotalk.psychcentral.com/showthread.php?t=108258&goto=newpost Tue, 17 Nov 2009 17:36:28 GMT Hi; Does anyone own a TENS unit? I understand that it feels like electricity and can be helpful for pain. But is it good for people with... Hi;

Does anyone own a TENS unit? I understand that it feels like electricity and can be helpful for pain. But is it good for people with neuropathy? Could someone please give me a review of TENS , positive or not.

Thanks; ]]> Peripheral Neuropathy rosepetals http://neurotalk.psychcentral.com/showthread.php?t=108258