I've read on here about Navydad and others' problems with burning in arms, legs etc, but never really stopped to think what that must feel like. Last night I could not get to sleep. My legs were burning, like the muscles had an electric current in them that I had to keep moving. My feet were so cold it hurt, so much I nearly cried. I could never imagine what cold and burning at the same time was like, but I certainly can now!
Navydad and others with this problem - I can really understand your frustration and despair at times at having something truly impossible to ignore. It was awful, kept me awake for several hours on top of my usual back-to-school sleepless nights. I ended up hunting out my woollen hiking socks and wearing them under a thick pair of bedsocks. I'm going to find the hot water bottles tonight. Last week I was half chuckling with Kathy about wearing the whole winter armour on my feet in August; this week it is not at all funny. Can't understand why it has suddenly gone from cold feet to this, but if anyone had advice, I'd love to hear it XX Ailsa
No fun is it,,, I go from wollen socks in the mornings to ankle socks by evening and back to wool socks by bed time,, they never stop hurting,, NEVER,,, my shoes feel like there 5 sizes to small, but i;m supposed to go to the pain clinic tomorrow, I can imagine what there going to do,,, I am not holding my breath though,,, I;m pretty fed up with meds,, and I dont think I want any implants,, or tens units, I have heard they buzz as bad as the neuropathy,, basically in my opinion,, i;m screwed,,, its just a matter of time before it takes over,,, i;m not complaining,, just stating facts,,
But to answer your question,, I dont have a good answer,, or even a decent suggestion,,, I can only tell you that you do what you have to do to get some kind of relief,, you try anything,, if that doesnt work you try soemthing else,,, and as a last resort,, you start pulling out your hair by the roots and scream bloody murder,, I have come close to that stage a few times,, but found that just getting away by myself and having a good cry soemtimes works,, but then that flares it up,, so I cant win
Navydad
I have been getting that in my feet for about a yar now. Now I have been getting the burning and skin hurting in the thighs and upper buttocks, and the skin is so sensitive anything on it hurts. My hands feel like a vibration going on like when you use the lawnmower and afterwards your hands feel funny. yes, this is truly the disease that keeps on giving!!
It is raining or trying to here and it is damp, not good for the arthitis and rest of problems, had a migraine this morning, took my med. (Maxalt) and it worked good got rid of it in 15 min. and I was able to sleep for awhile.
Hope you have a good day
Cricket
Neuropathy, in general starts in the feet as odd sensations, numbness, pain and moves upwards to the knees, then goes to the hands, and then moves in more proximally. At the same time, it can be attacking the autonomic nervous system.
The ONLY way you can really know if you have it, it the skin biopsy for nerve fiber density, and possibly and autonomic battery of tests.
Any one who is seronegative would be advised to consider this testing. One can get PN if one is seropositive as well, but, if negative, it could be PN from other reasons. Sicca is a symptom of PN.
Inga,
Can you have severe sicca with autonomic neuropathy? Very dry eyes, very dry mouth with parotid gland swelling and a nose that feels like the desert blows through. This is all helped with Evoxac and Restasis ect. But, for those of you with neuropathy, do you have this much dryness. The reason I ask is because I have symptoms of autonomic neuropathy that come and go. Blood pressure drops though I've never fainted, tingling, burning feet that comes and goes and sometimes goes away for months. Gastroparesis that is very constant. Also, brain fog.
My symptoms are no where near as severe as yours, Navydads, Anita or Sheltiemom but still I wonder.
Thanks,
Anna
It's horrible huh!! People look at me wierd when I describe my pain in my legs,like a sunburn in my muscles. I know have the cold problem,my legs and feet are very hot to the touch so I used ice bottles, Heat makes the pain worse. I take nuerotin that has helped the numbness, and I don't get the pins and needles feeling as much anymore. It doesn't seem to help the pain though. I have had this constant burning pain in my legs and feet straight,not even a minutes of pain relief. It is worse on hot summer days,the pain level goes up to a ten like I was in labor. No fun:(
Does anybody have a tight feeling in thier feet? The bones(i gues they are bones)maybe tendons on the top of my feet get a really tight feeling. It feel like if I move my feet the bones will shatter. Is this a sign on nueropathy? Also one of my feet seems to drag,the front part of my foot and it causes me to trip. Is this another symptom?
I get all kinds of pain, some of it is burning... stabbing, shooting pains in my hands, feet, legs and arms. Sometimes I get them in my breasts or upper abdomen. It wakes me up at night, which I used to think was near impossible. I even slept through some labor, with ease....
It seems as though my temperature regulator is broken too and I am either too hot or too cold. If I am hot, I am just pouring sweat. If I am cold, it feels like I will never warm up. Ugh... This is such a tiring thing...
-Ynevar
Some of you get this feeling in your feet----I get it in my face, neck, upper chest. In the middle of the winter, I looked like I had a ad sunburn!! And it felt just as bad! GP looked at my and called me his mystery woman! He had no idea what was going on, even after a skin biopsy from my neck that came back as "sun damaged skin from spending too many years in the sun". I am very fair skinned and burn easily, so I've never spent a lot of time in the sun. I do not work outside and do not spend my summers sunbathing! I also get shooting pains in right side of my face and chest and breasts--hard to explain. The swelling is driving me crazy- i hate to look at pictures of myself! I can't stand fabric with texture and necklaces are out.(one of my favorite pieces of jewelry). My skin is sooo sensitive.
I can only imagine what this must be like to have this in your legs and feet! My heart goes out to you!
Quote from: SLEEPY101 on September 06, 2010, 06:02:43 PM
Does anybody have a tight feeling in thier feet? The bones(i gues they are bones)maybe tendons on the top of my feet get a really tight feeling. It feel like if I move my feet the bones will shatter. Is this a sign on nueropathy? Also one of my feet seems to drag,the front part of my foot and it causes me to trip. Is this another symptom?
I cant say for sure,, but yes,, it feels like the bones are about to shatter if you move your feet one inch,, like I said yesterday,, my shoes feel like there 5 sizes to small,, when your foot seems to drag,, it could be the start of neuropathy in the large nerve fibers,,, did you ever have a EMG,,,
The problem with Small fiber neuropathy is that the punch biopsy needs to be sent out to a lab like therapath,, there are very few labs in the cuontry that do this kind of lab work,, AND i just went through almost a year and a half fighting with insurance,,, they didnt want to pay for the lab that read my biopsy since it was out of network,, I told them I had no control over where it went after it was taken,, eventually they paid,, I even called therapath to see if my insurnce had paid for biopsys sent to them before,,, they told me yes they did,,,, (UPMC)
Ailsa
I'm sorry your going through this. Sounds like it could be Raynauds. If it doesn't improve, I would speak to the GP. I take Nifedepine for mine, along with amitrtiptyline for the peripheral neuropathy in my ffet. These drugs help me.
After asking about socks last week, I went to the local Damart shop and bought some Thermawear socks. They are brilliant. I eveb managed to get them at ?2 a pair in the rummage bin - bargain.
Hope the feet feel better today - oh, and BTW, I need my socks all day, but often have bare feet sticking out of the duvet when I'm in bed, as they burn like billy-o then.
Kathyx
is it typically on both sides or just one...or does it vary.
for years, i've had it on my right side...and since i've been sicker than usual lately, it has been constant. i hate the way it feels.
@NavyDad
Is an EMG the same as a nerve conduction test? I had one a few years ago and it was negative. Other Drs mentioned those are not always accurate and talked about more extensive tests but never ordered any. I haven't spoke to the Drs about my dragging foot problem or drooping eyelid. They won't let me talk long enough to explain.
I am the odd man out when it comes to being cold. I used to hate the cold but now I actually enjoy it,it helps the pain. The heat kills me even hot showers,spas are a no no . I learned my leason.
I feel for all of you. I can't hardly stand watching my mom with her legs hurting her so bad and they have for upteen years. she always says it feels like they are in a tub of scalding water. She has also talked about the feeling of a glove tight feeling on her bare feet .
susanep :(
We're a bizarre bunch, aren't we? So glad we can all come on here and feel normal!! ;)
Kathy, I will look out for the damart socks - only seen Damart on mail order though. XX Ailsa
Thanks for this posting. I have had coldness that hurts in my feet for some time. Just put it all together. It continues to amaze me what I have been putting up with.
My popsicle feet were so bad this weekend that for the entire day my one leg hurt up to the hip the entire day. Horrible pain everytime I walked. I had some pain again yesterday.
Feet feel like ice blocks walking around and hurt to move. I am sorry for those of you who experience this 24/7.