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Zoey123 06-16-2008 07:23 AM

Need support
This is the first time I have posted to this board. I was diagnosed with PN about a year and a half ago, have had many tests and the doctors can find no reason why I have it. It started out when I was going to PT for plantar faciaitis in my left heel. After to bouts of PT my arches started burning and throughout the next year and a half the burning and pain have progressed through out my feet calves, elbows, wrist and even my face at times. My feet hurt so bad there are days I can barely walk. The neurologist says by my test I shouldn't be in so much pain. I have tried many of the meds out there for neuropathy and only felt worse taking them. My eyes started burning 4 months ago when I tried the Lyrica and haven't stopped burning even though I stopped taking the Lyrica 2 months ago. My mouth burns also. I have been going to a pain clinic now and am on Vicodin 3 times a day and also take Alprazolam twice a day as needed. I am going to Mayo Clinic next month for more test since I am not impressed with the doctor I am seeing now even though I went to Mayo a year ago. I am at a lost as to what to do. I can't sleep well without a sleeping pill. I guess I just needed to vent and get some support because I am so tired of the pain. I just don't know where to turn or what to do.

cream9518 06-16-2008 03:17 PM

Re: Need support
Hi zoey123, welcome to this support group! There are twenty million sufferers like us in the USA. I was diagnosed with PN going on two years and have been on all medications that did not help. I am taking 200mgs of Lyrica a day and it is not helping with the burning feet, and numbness in my legs and the electric shocks going through my back between shoulder blades. Also have sciatica in lower right backside but have no pain going down my leg which usually comes with this disorder. I am not diabetic and have all tests done and the only test that finally came up for PN was a skin biopsy which showed a damaged nerve ending. I have Idiopathic PN which sounds like you have the same problem. Taking 5mgs of Endocet (generic for Percocet) when cannot tolerate the pain. Am on sleeping pills too. Did not want to make this so long, try to stay in contact, wishing you for more better days, God speed.:angel:

Aussie100 06-16-2008 05:01 PM

Re: Need support
Hi zoey, i am sorry to read you are going through all this and it certainly doesn't help when neuro's doubt your complaints either, i had the same attitude off the first neuro i seen too, turned out he didn't even know the correct test to do to measure those particular nerves i was complaining about, a real ripe goose.
I hope they can find the cause at the Mayo clinic, i believe they do have some very good neuro's there, best of luck anyway.
Aussie :)

Zoey123 06-17-2008 12:43 PM

Re: Need support
Thank you all for your support. I have days where I just don't know what to do with myself. After I lost my job because of this it seems everyone I knew just kind of stopped keeping in contact. I guess they just couldn't understand how I could look well and have so much pain. My husband is very supportive and tries to keep my spirits up, I just feel like my whole life is gone and don't know what to do. I always loved working and going for long walks and can't do either one of those now. I didn't mention that I had total left foot reconstruction 10 months ago after all of this started and still have alot of pain from that. Does anyone else get these vibration sensations under their skin when sitting still or as you are waking up? It is like my flesh is quivering under my skin. Thanks for any information you can pass on.

snowmelts 06-17-2008 07:10 PM

Re: Need support
[QUOTE]Does anyone else get these vibration sensations under their skin when sitting still or as you are waking up? It is like my flesh is quivering under my skin. [/QUOTE]
The descriptions of the sensations are so hard for all of us to put words too!
Perhaps you are talking about the sensations of Paresthesia.
Here's a link for the National Library of Medicine about that.

I tend to call mine the "creepy crawlies" of "Bugs crawling all over my skin":)

I do not have the extreme problems you have with your PN.
I have to say my PN is VERY mild compared to most of the what others on these boards expience. Mine is idiopathic but "mostly" under control simply by a very very small dose generic Neurontin. So many people have such bad problems with PN, that I feel very lucky.

I do hope you find an answer.

anwis67 06-18-2008 08:40 AM

Re: Need support
Hi Zoey,
My neurologists explained the muscles twitches or sensations that you are talking about an overexcitement of the nerves. From what I have read about small fiber neuropathy it can involve the mouth. Like many here I had lots of normal test. Like you I feel like my "friends" just distanced themselves from me b/c I could no longer do what I used to. I question whether they were really friends. I am taking 400mg of lyrica(started at 75mg). Sometimes doctors start patients off at two high of a dose and then there are problems. I have been on this medicine since feb. of 2007. I also take nortriptilyne (100mg), and trileptal for muscle spasms. I think controlling this disease is trial and error. Right now for the most part my symptoms are bearable. I hope you find the right combo soon.

beachlovr 08-18-2008 02:30 PM

Re: Need support
Did you ever go to Mayo Clinic? What were they able to do for you?

Zoey123 08-19-2008 07:25 AM

Re: Need support
They were really no help at all. I had to ask for a heavy metal test because no one offered it and the still did not do a fasting glucose test. These doctors are in the peripheral neuropathy dept. too. The general neurologist I saw feels I may have Sjogrens Syndrome. I am going to a cornea specialist this afternoon for an exam. My eyes burn and are dry all day even though I use Restasis and Theratears. I use the Theratears almost every ten minutes they are so bad. As for the neuropathy they did a sweat test, and a few others and said yes I have small fiber neuropathy but they don't know why, since I have tried so many of the drugs they prescribe for it and get really bad side effects they have me trying a cream they make up of 1% amitriptilene and .05%of ketmine. It doesn't do anything for me and I think they prescribe it quite often. Basically they told me to learn to live with it. Just the general neurologist seemed concerned enough about what is causing it because it came on so fast. It has been over a year since I had an MRI and was thinking about asking my doctor to do another one. She just think it is all anxiety and keeps precribing me Xanax, and now this last time Clonazapam. My feet hurt so bad most of the time that I have to plan just what one thing I am going to do per day. I have tried swimming at the pool and it does feel better but then the clorine in the pool, even with goggles makes my eyes worse. I am at my wit ends as to what to do. I just want some of the pain to go away and be able to live my life somewhat like I use to. Thanks for caring enough to ask about me.
Zoey 123

beachlovr 08-19-2008 11:39 PM

Re: Need support
My grandparents used to live in Barron. They have since passed away. Anyway, I really wanted to tell you about what has helped my neuropathy symptoms some and you may have the ability to seek out some similar help right there in your part of WI. I have had some help with my PN by seeing a specialized chiropractor. Unfortunately this wonderful chiro lives out West (about 22 hours from me) so I have been looking for other awesome chiros (there are all types of chiros and most are no good) in the midwest without much luck. During my search I just happened to find some chiros in your area that I wish lived closer to me but it would be about an 8-9 hour drive for me (still too far). If you are interested in these chiros names let me know. I am so sorry that Mayo Clinic did not help you more. I hate to hear when anybody has to be on so many meds at once. I pray that you feel some relief soon. Let me know if you would like that info.

Zoey123 08-20-2008 07:21 AM

Re: Need support
I would like to have that info about the chiro's. Let me know how you can send them to me.
Thank you

beachlovr 08-20-2008 08:06 AM

Re: Need support
I know that a lot of people with neuropathy seem to only want to go the medicine route but a good chiropractor can help you get well without all the meds. The only way we can communicate it right here so I will have to retrace my chiro research that I was doing early last week and see if I can find all the chiros that I discovered. (I didn't write it down because I knew they were too far from home for me.) I know that the one chiro is easy for me to find, it is just trying to find the other ones that may take me a bit. I have young children that keep me busy most of the day so I will only be able to research at night when they are in bed. Also, I will only be able to give you the names of the chiros and not any other info so you will have to do some of the research once you have the names.

From seeing that awesome chiro out West, the tingling in my right foot is almost gone. The left foot is getting better too but not as fast for some reason. My neuropathy came on real fast too.
Your friend,

beachlovr 08-20-2008 11:34 PM

Re: Need support
Try looking for chiropractors with the last name Toftness in your area. There are some that live within a half hour of you. I obviously have never seen them myself but I do know that they use some chiro techniques that the wonderful chiro I saw out west uses. I feel like it is worth a try for you. It will definitely not make your symptoms any worse. Please keep me informed.

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