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Old 05-19-2011, 06:07 PM   #1
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Finally a diagnosis, but what now?

I finally received a diagnosis of small fiber neuropathy due to an unidentifiable antibody. Anyone heard that one before??
My neuro told me that he expected the antibody to lessen, but that the damage that is done is permanent. I keep wondering how I am going to live the rest of my life with this pain and other symptoms. Does anyone have sleep issues, confusion (sort of, like I just get side tracked easily) or hot all the time. I sweat like I don't know what and feel like I am burning up from the inside out. That is miserable in itself. I also work in a very hot factory, touching very hot items and keep getting blisters and cuts on myself. Never happened before and I've been there 22 years. The dr. told me "keep expecting that to happen" Advice I received..."accept it, modify, do what you can tolerate" How do I do this when I am a single mom of an 11 year old??????? Disability? That doesn't pay the bills. Miss work when I can't "tolerate" any more...that gets me fired! I am crying all the time, so depressed. If you don't have any advice, please just talk to me. I feel desperate and so alone. Thank you.

 
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Old 05-19-2011, 08:53 PM   #2
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Re: Finally a diagnosis, but what now?

Quote:
Originally Posted by leighallen View Post
I finally received a diagnosis of small fiber neuropathy due to an unidentifiable antibody. Anyone heard that one before??
My neuro told me that he expected the antibody to lessen, but that the damage that is done is permanent. I keep wondering how I am going to live the rest of my life with this pain and other symptoms. Does anyone have sleep issues, confusion (sort of, like I just get side tracked easily) or hot all the time. I sweat like I don't know what and feel like I am burning up from the inside out. That is miserable in itself. I also work in a very hot factory, touching very hot items and keep getting blisters and cuts on myself. Never happened before and I've been there 22 years. The dr. told me "keep expecting that to happen" Advice I received..."accept it, modify, do what you can tolerate" How do I do this when I am a single mom of an 11 year old??????? Disability? That doesn't pay the bills. Miss work when I can't "tolerate" any more...that gets me fired! I am crying all the time, so depressed. If you don't have any advice, please just talk to me. I feel desperate and so alone. Thank you.

I'm not a medical practioner of any sort, but I have lived with these symptoms you stated for over 9 years now, since I was 17.

The beginning stages of this "disease" were quite complex and in terms of pain, quite severe. But slowly some of these symptoms disappeared, some stayed for good, and some come and go.

Anyhow, its interesting you mention you have worked in a hot factory for a very long time which you touch hot items on a daily basis.

This worries me, because now that I think about it, I've been a nail bighter and skin picker for a while, and I have an "obsessive" and pleasurable voluntary experience with tearing up my skin and the pain that it triggers.

In your case its not voluntary, but constant damage/irritation to the flesh and subsequent nerve linings is not a good thing.

I do not know if constant pain to tissue can cause SFN, but you should be more careful with this. I have read that constant repeatable damage can initiate various neuropathies.

Unfortunetely I cannot tell you what you should do in terms of tests and/or medications, as I myself am going to the doctor tomorrow to get a referral to a neurologist to do more in-depth studies, something I should have done long ago.

Anyways, what I find is that a change in diet helped alot with my symptoms. Avoiding too much sugar intake was first and foremost, especially with my concentration. Vitamins have helped me as well, but not until recently I learned that B12 is very effective in many circumstances, even if blood tests show normal for B12. I can say that the B12 intake I have been on for the past several weeks has shown some improvement with my symptoms, so I will continue with this.

Wish you well and I hope that helps you in some way!

 
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Old 05-19-2011, 11:50 PM   #3
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Re: Finally a diagnosis, but what now?

Hi, that neuro doesn't make any sense in saying the damage is permanent whilst your still suffering considerable nerve pain, the nerves are not dead just injured and are sending confused signals to the central nervous system.
All peripheral nerves do have the ability to regenerate once whatever has been assaulting them ceases [ as long as the nerve cells aren't dead], they also can re sprout, nerve regeneration is a very slow process but is certainly possible.

If the medication your using now isn't doing the job or at least helping you cope better then I would suggest seeing a pain specialist, they are experts in this field and know a lot more than a GP or a neuro about treating the pain.
Any wonder your depressed trying to work when in constant unbearable pain.

I do hope your situation improves, most of the forum members will know what your going through and I am pretty sure some will chime in and talk to you, your certainly not on your own.

best wishes
Aussie

 
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leighallen (05-20-2011)
Old 05-20-2011, 10:32 AM   #4
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Re: Finally a diagnosis, but what now?

Leigh,

You for sure are NOT alone....be VERY careful w/you and touching hot things....I have PN and that is a MAJOR issue w/me since I have PN in my hands(and seems to be getting worse) so I can't tell if something is hot until a few moments of touching it.

PLEASE if you haven't get a second opinion? I've been to 4 different Neurologists just to be sure I'm not missing any treatment or advice to help my condition.

Try and stay positive and make tomorrow a better day.
J

 
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leighallen (05-20-2011)
Old 05-20-2011, 09:18 PM   #5
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Re: Finally a diagnosis, but what now?

Hi Leigh - Life has certainly dealt you a bad hand with SFN, but this is the worst period--learning you have such a disease and dealing with the depression and overwhelming problem of figuring out how to cope. Someone told me when I was first being diagnosed that the first year is the worst, and that once I figured out the right meds for pain relief and adjusted to the idea of change in my life, it wouldn't be so bad. Those words were very true.

You didn't mention what meds you were taking, but I might guess if you've started some meds, the confusion you're experiencing is a result of getting used to the meds--also the depression will really mess up your mind, and lack of sleep, well that makes everything 10 times worse. In the beginning I took Tramadol for sleep. It was a great med for me because it didn't leave me feeling groggy the next day. I don't need that anymore.

Many people with neuropathy use both an anticonvulsant drug (Gabapentin/Neurontin or Lyrica usually) and a antidepressant like Cymbalta or one of the tricylic antidepressants, e.g., Amitriptyline, to help with the pain. The antidepressants really do help with the pain, completely unrelated to depression. In your case, seeing as you are depressed, they could help both the pain and the depression. As was already suggested, if your neurologist isn't helping with the pain, a pain specialist can probably do a better job of making you feel better. Once you get the pain under control, making accommodations for the other symptoms doesn't seem like such a monumental task. Because I have lost so much feeling in my hands, I just naturally now compensate by watching what my hands are doing.

Also as already mentioned, be very careful of hot things if your hands have lost some ability to feel temperature changes.

Too bad you don't have a neuropathy support group in your area. Getting together with others who share your circumstance is oh so helpful. I belong to the Desert Neuropathy Support Group that meets in Palm Springs, CA. While that is not in your area, if you google them, you'll be able to make contact with someone who you can talk to about your neuropathy.

Many hugs to you - Ruby

 
Old 05-21-2011, 07:37 AM   #6
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Re: Finally a diagnosis, but what now?

I am on 3600 mg/day gabapentin and 50 mg every 4hrs of tramadol. Seemed to help a bit at first, but not as much any more.

 
Old 06-05-2011, 12:52 AM   #7
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Re: Finally a diagnosis, but what now?

my heart goes out to you I also was finally diagnosed this yr and have all the same things as you, there are days I cant walk or use my hands I get pains everywhere even in spots on my head,I feel like im on fire, and my feet get so ice cold even when its warm out, and I cant remember what a good nites sleep is as you can see im still awake. none of the meds they prescribed worked and i was allergic to 2 of them, I also have 3 kids my husband trys to help and feels bad for me cause he always ask if he can do any thing to help and unfortunatly there is nothing. I also get a sever pain in my back that seems like it makes it hard to breath it last anywhere from 1-3 min and it happens @ random. I just wanted to let you know your not alone im right here with you! hope to talk to you soon!

 
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