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    Old 05-03-2009, 09:19 AM   #1
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    Questions on SFN

    Hi all, I am so glad to have found you. I have read through all the messages. I know I was tired at the time but I don't recall anyone talking about the pain that comes with the coldness. Last August I started with a painfully cold left hand. Within weeks both hands and forearms were cold. My feet and calves are also cold. Does anyone else experience this? I hate being cold, but the fire makes me feel ill - lightheaded and nauseaus. Thank goodness I get the cold more than the heat.

    I don't have diabetes. I do have celiac disease and Hashimoto's thyroiditis. I recently had skin biopsies - one at the ankle and one at the thigh. The results confirmed small fiber neuropathy. It also confirms autonomic neuropathy. My body temperature swings some days. I usually run around 97.3 degrees. One day it was 95.1 and there was nothing I could do to get warm. The last spell the temp was 96.3 and then dropped to 95.9. Anyone else so afflicted?

    I have a problem with drugs. I was seen every three months, fed lortabs, lyrica, topamax, and told I was an enigma in a conundrum. All that did was get me hooked on lortabs, allergic reaction - laryngeal edema - to lyrica, and topamax literally sent me out of my mind. The times of withdrawal were horrible. I can't take NSAIDS. Cymbalta - my brain must have thought I was a teenager as I had suicidal thoughts and had to get off of that. Ultram does a number on my stomach which already has a problem.

    I am able to use lidoderm patches for pain and that's about it. I take baclofen for spasticity and klonopin for myclonic jerks and lunesta to sleep. I have heart problems - SVT, PAT, PAC for arrhythmias as well as coronary artery disease, carotid artery disease, and PAD.

    I have been on crutches for four years - bad feet, bad balance, and lots of falls got me there and keeps me there. My right foot has had three surgeries for the same thing and is most unhappy 4 months after the last surgery.

    I was interested in reading about fatigue. I do have a definite energy problem. Exhaustion can come on quickly and far too easily for my liking. Is this part of SFN? I was dx with fibromyalgia in 1985 and at this point I don't know if I have it or not due to all the problems I have. I will be seeing a movement disorder specialist in NYC in a few weeks probably for some form of dystonia.

    Thanks for all the information I have learned from you and I look forward to learning more. My apologies for the length.
    It is the sick person who really knows what health is.

    In a response to the above Bobby wrote - Feather me, pretty much every one has had the pain with cold or sometimes even hot weather.

    I guess I wasn't clear in what I wrote. I was not referring to weather temperature. I was referring to my skin temperature. I thought I read responses that were just dealing with heat in the body in various places, burning heat, but not burning cold which is what I have more than the heat. The weather's temperature, at least cold, doesn't affect my hands, arms, legs, or feet - they are either normal, painfully cold, or burning hot. We had one hot day recently and my endocrinologist looked at my burning cold foot and said I needed to keep it warm. I asked what more could I do than I was doing - wearing socks and closed shoes on a ninty degree day. He didn't have an answer.

    We all have choices to make drug wise. I'm at the point where I prefer the pain and rest as opposed to harsher pain and activity with a clouded mind or meds with no activity and no mind.

    Does anyone else experience the burning cold in hands, forearms, calves, and feet?

    I'm sorry to hear about the fatigue. I was hoping some new supplements the doctor gave me that my blood tests showed were low, would do the trick and spark some energy. Perhaps with a bit more time that may still prove to be so.
    It is the sick person who really knows what health is.

    Last edited by FeatherMe; 05-03-2009 at 09:51 AM. Reason: wrong name of drug

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    Old 05-08-2009, 10:25 AM   #2
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    Re: Questions on SFN

    Dear featherme, I have idiopathic (not diabetic) neuropathy. After a skin biopsy the neurologist diagnosed me with polyneuropathy which is a diffuse neuropathy that affects all the nerves. There are times that I have tinglings in my body that turn into cold shivers and cold hands, feet and hands. Also have burning and numbness from calves up my legs. When sleeping and also sitting I have paresthesia of my derrier.

    Taking all kinds of NSAIDS (that did not work) I am now on Lyrica. Tried using the rebuilder since January but it has not worked out for me and am now sending it back. I know you are a very sick soul and I will be praying for you. I do not have a tiny bit of your ailments and it is hard to explain to someone who thinks you look so great but does not know what you are going through. Also take 10mgs of percocet but does not stop the pain but makes me sort of forget what I have. Sounds like Rush Limbaugh!

    Hope you are on your way to days of better health, God love you. Amen

    Old 05-08-2009, 12:29 PM   #3
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    Re: Questions on SFN

    Dear featherme, sorry to read about all of your illnesses. I have only idiopathic neuropathy. I am not diabetic. Had all tests and last one a skin biopsy showed a deteriation of small fibres. Have tried mostly all NSAIDS with no luck, but am on 400mgs of Lyrica daily. The burning and numbness of calves and legs keep coming more frequently and have the feeling of coldness in feet and hands also. H

    ave burning derrier when sitting and upon going to bed at night which has caused me to take a sleeping pill or else would not sleep at all. It is hard to cope with PN especially when someone tells you that you look great but does not know what you are suffering with. I am also taking 10mgs of percocet when needed, but does not really stop the pain.

    Hoping you will have better days.

    Old 05-10-2009, 11:21 PM   #4
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    Re: Questions on SFN

    Hi Featherme, I am wondering if you are on a gluten free diet seeing you have celiac disease and also with the Hashimoto's thyroiditis are they doing hormone replacement [T3 &T4] for it ?


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