mumzy
01-14-2006, 09:13 AM
Hi there can anyone offer any hope of this disease stopping. I have had small fibre neuropathy for four years and for about two it was mainly in my feet and a horrible burning type feeling with complete inability to get hot in any way (sun, exercise, baths etc.) made it much worse. I was managing to an extent but now it has spread to my thighs and is a completely different pain - deep deep cramping and contracting (like giving birth) in the thigh area. I can't sleep or sit for long and have to keep moving and stretching but to no avail. I have tried all the usual suspects - neurontin and lyrica but seem to have really bad side effects from meds. Taking ultram with some relief and have now been given Cymbalta to try. Does anyone out there have the same as me and if so how are you coping? I would really appreciate hearing from anyone in the same or similar situation - especially if you have been given any hope of recovery! Thanks Pauline
Sponsor
6foot3
01-14-2006, 11:38 AM
What type of Neuropathy....Diabetic, CIDP, etc...??
mumzy
01-14-2006, 01:56 PM
They can't find a cause say it's idiopathic and affecting the small sensory fibres. Any ideas?
6foot3
01-14-2006, 03:13 PM
They can't find a cause say it's idiopathic and affecting the small sensory fibres. Any ideas?
I would research CIDP and MMN as these are Demyelinating Auto Immune Neuropathy's. Usually a Lumbar Puncture can tell by high Protein count in fluid .You may want to discuss having one performed with your Neurologist....
I would research CIDP and MMN as these are Demyelinating Auto Immune Neuropathy's. Usually a Lumbar Puncture can tell by high Protein count in fluid .You may want to discuss having one performed with your Neurologist....
ColtShorty
01-16-2006, 03:09 AM
Hi there can anyone offer any hope of this disease stopping. I have had small fibre neuropathy for four years and for about two it was mainly in my feet and a horrible burning type feeling with complete inability to get hot in any way (sun, exercise, baths etc.) made it much worse. I was managing to an extent but now it has spread to my thighs and is a completely different pain - deep deep cramping and contracting (like giving birth) in the thigh area. I can't sleep or sit for long and have to keep moving and stretching but to no avail. I have tried all the usual suspects - neurontin and lyrica but seem to have really bad side effects from meds. Taking ultram with some relief and have now been given Cymbalta to try. Does anyone out there have the same as me and if so how are you coping? I would really appreciate hearing from anyone in the same or similar situation - especially if you have been given any hope of recovery! Thanks Pauline
Oh how I wish I could offer you some help in curing your horrid disease!! I have been suffering with small fibre neuropathy for 10 years & have yet to find anything that will even touch the pain including morphine, which I found out the hard way that I am apparently allergic to. :mad:
My pain started in the bottom of my feet & has progressed up to my knees where it has stopped for know. I started taking Methyl B-12 4-5000mcg pills a day about 9 months ago & the pain has not gone any farther than my knees. The pain has not decreased one bit but at least the progression has stopped.
I just found this website today & you are the first person I have found on any site that has posted that they have small fibre neuropathy. I hope that we can talk more as the one thing that I have learned from this disease is that no-one can understand/comprehend what you are going through until they have walked in your feet!!
Oh how I wish I could offer you some help in curing your horrid disease!! I have been suffering with small fibre neuropathy for 10 years & have yet to find anything that will even touch the pain including morphine, which I found out the hard way that I am apparently allergic to. :mad:
My pain started in the bottom of my feet & has progressed up to my knees where it has stopped for know. I started taking Methyl B-12 4-5000mcg pills a day about 9 months ago & the pain has not gone any farther than my knees. The pain has not decreased one bit but at least the progression has stopped.
I just found this website today & you are the first person I have found on any site that has posted that they have small fibre neuropathy. I hope that we can talk more as the one thing that I have learned from this disease is that no-one can understand/comprehend what you are going through until they have walked in your feet!!
mumzy
01-16-2006, 07:45 AM
Hi, thanks for replying. You're so right it's a terrible disease because you look 'normal' but are in such pain. Can you tell me how old you are and how long you have had it? I am 46 and had it for 4 years. At first it was like you just feet and then up to knees but in the last year it has spread like wild fire and the thighs are a different sort of pain. Kind of cramping. I also feel ill just really 'off'. I'm shakey and weak in other parts of my body but as you say, with all the drugs I've tried it could be a side effect from them. It's hard to think that this is how we'll have to live from here on as I had many plans for the rest of my life! Do keep in contact - Love Pauline
ColtShorty
01-17-2006, 01:10 AM
I'm 45 & have had it for 10+ years. I too am getting weak, too exhausted & in too much pain to do any exercise. I have tried more drugs than I can remember, some have caused some serious side effects & lots of memory loss both long & short term.
I've tried several different alternative meds over the years, colloidal silver & copper, MSM, food grade peroxide & more that I can't remember. Nothing has helped with the pain but I think some has helped keep me somewhat healthy in other ways.
So how are you mentally, do you have to fight with depression all the time?? I have a 13 year old daughter to raise that keeps me going mentally, actually she is what keeps me going period.
Is your cramping in your muscles, like they need to be stretched??
Steve
I've tried several different alternative meds over the years, colloidal silver & copper, MSM, food grade peroxide & more that I can't remember. Nothing has helped with the pain but I think some has helped keep me somewhat healthy in other ways.
So how are you mentally, do you have to fight with depression all the time?? I have a 13 year old daughter to raise that keeps me going mentally, actually she is what keeps me going period.
Is your cramping in your muscles, like they need to be stretched??
Steve
mumzy
01-17-2006, 07:40 AM
Hi Steve, God you were even younger than me when you first got PN. Funny because most people seem to be much older. Did you ever get an underlying cause for it? I too have had multiple tests and stays in hospital and seen so many therapists. I thought initially I would be able to deal with it but that was when it was just in the feet but this cramping is unreal. Yes, it does feel like it needs stretching all the time and to some extent exercise helps it but I am so tired that I can't do much and anyhow exercise starts the burning so go figure!!!!!! Do you work. Unfortunately I had just finished one job when I was diagnosed and now doubt anyone would take me even if I could do the job. It's so frustrating. Sometimes I think my partner doesn't believe the amount of things that affect me. Not being able to go in the sun is really unfair as holidays are out. I am due to see a psychologist soon as I am getting severely depressed now but unless he has a magic wand and can take this disease away, I really don't know what he can do.
Keep in touch. Pauline
Keep in touch. Pauline
curiousforever
01-18-2006, 07:01 PM
I'm 35 and have it now. They are testing me for sjogrens and other stuff. I just started lyrica and am taking cymbalta and percocet.
My nerves are demyelinating and it's not fun...along with other neuro symptoms...
My nerves are demyelinating and it's not fun...along with other neuro symptoms...
ColtShorty
01-18-2006, 11:14 PM
Hi Pauline,
Yes I was pretty young then, just when you think that life's plans are starting to come together...................
The first neurologist I saw thought my problems stemmed from chemicals that I worked around, of course he also said that the pain would never travel any farther than my feet. :rolleyes:
I understand what you mean about feeling like your partner doesn't believe how much pain you are in. Until I started going through this I doubt I could have comprehended the intensity & the long lasting effects of the pain either. I look pretty normal except for the way I walk, I limp pretty bad during the times that I have to walk & I am constantly changing the leg I favor. I'm sure it looks quite strange. And no I haven't been able to work for some time now unfortunately, I really really hate being poor!!
The sun doesn't bother me but in these last few winters the cold has been bothering my feet alot. I don't feel the coldness in my legs that much & I wear shorts all year round no matter how cold it gets. I can't stand to have things touching my legs like pants or even sheets, haven't slept in a real bed for several years, I just toss & turn on a chair at night hoping to get some kind of sleep.
Sorry to hear your depression is getting so bad, I hope you can find something to make things a little easier. I really don't know how I am able to deal with mine, some days are so very hard to do so. I've tried several meds for it but eventually it either stops working or the dosage gets so high that it screws with my mind way too much & I don't know what the hell is going on around me.
I try to keep a positive attitude but some days, well....................
Steve
Yes I was pretty young then, just when you think that life's plans are starting to come together...................
The first neurologist I saw thought my problems stemmed from chemicals that I worked around, of course he also said that the pain would never travel any farther than my feet. :rolleyes:
I understand what you mean about feeling like your partner doesn't believe how much pain you are in. Until I started going through this I doubt I could have comprehended the intensity & the long lasting effects of the pain either. I look pretty normal except for the way I walk, I limp pretty bad during the times that I have to walk & I am constantly changing the leg I favor. I'm sure it looks quite strange. And no I haven't been able to work for some time now unfortunately, I really really hate being poor!!
The sun doesn't bother me but in these last few winters the cold has been bothering my feet alot. I don't feel the coldness in my legs that much & I wear shorts all year round no matter how cold it gets. I can't stand to have things touching my legs like pants or even sheets, haven't slept in a real bed for several years, I just toss & turn on a chair at night hoping to get some kind of sleep.
Sorry to hear your depression is getting so bad, I hope you can find something to make things a little easier. I really don't know how I am able to deal with mine, some days are so very hard to do so. I've tried several meds for it but eventually it either stops working or the dosage gets so high that it screws with my mind way too much & I don't know what the hell is going on around me.
I try to keep a positive attitude but some days, well....................
Steve
bm2sis25
01-18-2006, 11:41 PM
hi,i have it too the only thing that helped my burning was a pain relieving liquid called absorbine jr it's over the counter it's good for a lot of things.
bm2sis25
01-18-2006, 11:44 PM
try absorbine jr pain relieving liquid for hot feet and other things. :bouncing:
mumzy
01-19-2006, 08:15 AM
Hi this is for Curiousforever: Can you tell me how you're getting on with Cymbalta. I have a prescription for it but am on so many other things that I'm scared by all the side effects. Thanks a bunch. Pauline
curiousforever
01-19-2006, 11:32 AM
I am fine on it.
I just switched from topomax to lyrica the new "miracle drug" and that is the one I'm really curious about...it says it helps nerve pain....sometimes within a week...felt off balance last night and kinda drunk though.
Has anyone tried the lidoderm patches? I love those things...and for me they work pretty well if the pain is close to the surface...I've even used them on my elbows...If you have good insurance they aren't too expensive...but otherwise they are pretty expensive.
I just switched from topomax to lyrica the new "miracle drug" and that is the one I'm really curious about...it says it helps nerve pain....sometimes within a week...felt off balance last night and kinda drunk though.
Has anyone tried the lidoderm patches? I love those things...and for me they work pretty well if the pain is close to the surface...I've even used them on my elbows...If you have good insurance they aren't too expensive...but otherwise they are pretty expensive.
Clag
02-09-2006, 11:21 AM
I have type II diabetes and have developed neuropathy from my feet to my knees. I have had to have cubit and carpel tunnel operations to correct a knarling left hand (sucessful) but have now 10 years later lost the feeling in my finger tips. My hands are always tingling. Hard as it is to describe the type of deep pain in my feet and legs, along with my hands, you all know what I am talking about. For about 8 years I have been on around 2400mg of gappenten a physcosematic drug given for siezures. The drug didn't work too well for the siezures, but had some great pain relief for diabetics. Without this drug I become so incapacitated that no amount of meditation helps. Pain management works only on so much. This has helped me with this debilitating diease. So far there is no cure, but to keep your sugars counts down and this only slows the process down. It also helps the deep pain some. I am truly sorry that all us individuals have some type of this diease and talk hard to your doctors or attend a pain management session. It helps.
6foot3
02-10-2006, 08:16 PM
I have type II diabetes and have developed neuropathy from my feet to my knees. I have had to have cubit and carpel tunnel operations to correct a knarling left hand (sucessful) but have now 10 years later lost the feeling in my finger tips. My hands are always tingling. Hard as it is to describe the type of deep pain in my feet and legs, along with my hands, you all know what I am talking about. For about 8 years I have been on around 2400mg of gappenten a physcosematic drug given for siezures. The drug didn't work too well for the siezures, but had some great pain relief for diabetics. Without this drug I become so incapacitated that no amount of meditation helps. Pain management works only on so much. This has helped me with this debilitating diease. So far there is no cure, but to keep your sugars counts down and this only slows the process down. It also helps the deep pain some. I am truly sorry that all us individuals have some type of this diease and talk hard to your doctors or attend a pain management session. It helps.
Hey Clag, i know exactly how you feel..Any time i act stupid and eat high carbs :nono: my feet to my knees burn like crazy. However strict carb control and within a couple of days it reverses.So i dont take any drugs as i have seen that diet causes and diet heals this .Later !!
Hey Clag, i know exactly how you feel..Any time i act stupid and eat high carbs :nono: my feet to my knees burn like crazy. However strict carb control and within a couple of days it reverses.So i dont take any drugs as i have seen that diet causes and diet heals this .Later !!
Pika
02-11-2006, 10:12 PM
I'm quite new to these feeling. I have the vibration and tingling on chest, hands and legs. It is not painful, it was light vibration but feel very hot. After the electrical conduction test, it's getting stronger and quite a lot of pins and needles sensation. Are yours one starting like that then get painful later?
I was diagnosed Atrial Fibrillation (heart muscle getting old) in Feb 2005. I'm not very old, I'm only 47 yrs old. The med is not working so I stopped it. After 2 months, this chest vibration spreads to both my hands and legs. I wonder my hands and legs muscle are starting "getting old" as well? I'm really wish someone could help me and share some experience.
Pika.
I was diagnosed Atrial Fibrillation (heart muscle getting old) in Feb 2005. I'm not very old, I'm only 47 yrs old. The med is not working so I stopped it. After 2 months, this chest vibration spreads to both my hands and legs. I wonder my hands and legs muscle are starting "getting old" as well? I'm really wish someone could help me and share some experience.
Pika.
vipergg22
02-12-2006, 10:40 PM
I'm starting to see real improvement after starting a vitamin supplement called benfotiamine , basically a much more absorbed form of thiamin . The difference really has been quite amazing in the just 3 weeks I have been taking it . I feel better , muscles feel a lot better , burning and tingling in feet is much improved , pain walking is much better . A good supply is at benfotiamine-dot-net . There have numerous studies saying this does work . I sure it won't help some people but i had tried everything vitiamins and herbs and wonderful stuff like nuerontin (theres a wonderful drug,was a walking zombie on that) and nothing helped then I found this stuff and it has helped a lot in a short period of time .