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Symptoms of Peripheral Neuropathy
Hi hope you can help. I have been diagnosed with Peripheral Neuropathy and have had symptoms of burning in my feet for 3 years and my lower legs for 2 years. I also have severe joint pain and would like to know if neuropathy can cause joint pain too. Also I am experiencing what feels like bad muscle aches in the thighs - could this be the neuropathy spreading and how do I know if this is the case? One other question can neuropathy come in conjuction with other things such as fibromyalgia. Also am constantly nauseous and think this surely cannot be the neuropathy!? I have gone from exercising on a daily basis to virtually house bound in just a couple of years. Many thanks for your help.
Re: the latest Neurontin type drug someone was asking about:
It is Lyrica (pregabalin) I started on it the day it came out here in the U.S.
maybe about 2 weeks or so ago. I had tried Neurontin, but only for two weeks. I had the side effect of being "drunk" and stopped because I had something important to do and could not afford to be "drunk". I had read that titrating up slowly and continuing past two weeks could help with the side effects. Since the Lyrica was coming out soon and I had heard so many good things about it, I decided to wait and try that.
I started with only 50mg 2x day, and was intending to titrate up slowly to 100 3X day. (you need less mg. than Neurontin) however I started having muscle spasms with sharp pains and sort of cramping in mostly my legs, but other places as well. I stopped the meds. but still had the problem only to a lesser degree. I happened to have a Dr. Appt. so asked him about it.....he said go ahead and keep taking it, it's probably nothing to worry about. I started again that day, and back came the painful muscle spasms which kept waking me up in the night. I stopped again. A different doc (pain doc) said go back to the Neurontin, that it probably was a reaction to the Lyrica and that it is still causing the problem even though I stopped it because it is longer lastin than Neurontin and may still be working.
I am anxious to go back to the neurontin ASAP because I have such horrible burning pain over my whole body that I can not wear clothes but a few hrs. a day or sit etc. However, I'd like to wait until the spasms stop, so as to avoid confusion of side effects. I have not felt well since I started the Lyrica, and don't know if that is related also. Things are further compicated by the fact that I also have Fibromyalgia and spinal stenosis. It is hard to sort out the symptoms, but still it seems that Lyrica is the culprit for the muscle spasms.
Wondering if anyone else here has tried Neurontin or Lyrica, and what your experience has been. I should also say that I didn't get up to a good dose on the Lyrica, and of course did not experience any pain relief, but with the neurontin I got almost complete relief with 300mg. 3 X day. Would love to hear from anyone and I sympathize with everyone else's problems on here as these things are painful and scary and I am glad we can all support each other.
It is Lyrica (pregabalin) I started on it the day it came out here in the U.S.
maybe about 2 weeks or so ago. I had tried Neurontin, but only for two weeks. I had the side effect of being "drunk" and stopped because I had something important to do and could not afford to be "drunk". I had read that titrating up slowly and continuing past two weeks could help with the side effects. Since the Lyrica was coming out soon and I had heard so many good things about it, I decided to wait and try that.
I started with only 50mg 2x day, and was intending to titrate up slowly to 100 3X day. (you need less mg. than Neurontin) however I started having muscle spasms with sharp pains and sort of cramping in mostly my legs, but other places as well. I stopped the meds. but still had the problem only to a lesser degree. I happened to have a Dr. Appt. so asked him about it.....he said go ahead and keep taking it, it's probably nothing to worry about. I started again that day, and back came the painful muscle spasms which kept waking me up in the night. I stopped again. A different doc (pain doc) said go back to the Neurontin, that it probably was a reaction to the Lyrica and that it is still causing the problem even though I stopped it because it is longer lastin than Neurontin and may still be working.
I am anxious to go back to the neurontin ASAP because I have such horrible burning pain over my whole body that I can not wear clothes but a few hrs. a day or sit etc. However, I'd like to wait until the spasms stop, so as to avoid confusion of side effects. I have not felt well since I started the Lyrica, and don't know if that is related also. Things are further compicated by the fact that I also have Fibromyalgia and spinal stenosis. It is hard to sort out the symptoms, but still it seems that Lyrica is the culprit for the muscle spasms.
Wondering if anyone else here has tried Neurontin or Lyrica, and what your experience has been. I should also say that I didn't get up to a good dose on the Lyrica, and of course did not experience any pain relief, but with the neurontin I got almost complete relief with 300mg. 3 X day. Would love to hear from anyone and I sympathize with everyone else's problems on here as these things are painful and scary and I am glad we can all support each other.
A related discussion, hereditary was started.
A related discussion, Burning and tingling, in feet, legs and hands was started.
I do have the tingling in all the places you listed except the throat.My burning feels more like electricity going through my body. Almost like bugs crawling around inside. I am only 44 years old and sometimes my body feels like I'm 94. My diagnosis is polyneuropathy and they cannot find a reason for me having this diease. Dr. said they would just try and make me comfortable.
I grew up having pain, i htought it was normal, i would grit my teeth and get on with it, it may have something to do with the culture i grew up in, i bascially have not been well for the past five years. Terrble cramps in calves and then over the past two years i have had tingling, went on amptriptyline for chronic pain, maksed tingling, went off it becasue as they increased the dosage i had adverse reactions. high heart rate and low blood pressure which would induce syncope. finally diagnosed with vocal corddysfunction. this can come on any time and is often overlooked, so if there is anyone out there reading this forum who has been diagnoed with asthma and does not respond to inhalers, ask youe doctor about vcd, you may still have asthma, but the vcd complicates things, everyday people go to the ER with this and are told its anxiety. You can't get enough breathe in becasue you vocal cords close.
anyway it seems to me that a lot of the people writing into this forum have other isssues, diabetes, herpes, had surgery, injury etc, it was interesting to her from the person who had an epidural, it makes you wonder if some people don't receive nerve damagre during operations. check your meds for side effects, alot of the time there is your answer.
watch what you eat too, look at all the cr*P there is in them, low carb diet is fab, whilst reducing your carbs it seems these foods and the foods you eat have no or less preservatives.
for the young lady whom has numbess, go and see your doctor to have your back checked, i had an injury to my back that casued numbness in my legs for two years, i received 6 months of physcial therapy but it really didn't do anything, it was like walking on wooden legs for two years. that ws 20 years ago when i was 15, so heed my warning go and have it checked cause you could have some problems later on down the road. i didn't until i was 17 and I had a raised hip that caused curvature of the lower spine, and a slipped disc.i probably was always going to have a bad back as i have spondylitis so thats why at your age if you are having problems with your back its best to go and have it investigated and not to ignore like I did.
good luck to all of you. does anyone have tingling in their head, around the back of the nape forehead and chin, throat etc. i have it in my legs, feet and arms and down my back, and stomach. so weird. plus burning!??? and patches of cold
anyway it seems to me that a lot of the people writing into this forum have other isssues, diabetes, herpes, had surgery, injury etc, it was interesting to her from the person who had an epidural, it makes you wonder if some people don't receive nerve damagre during operations. check your meds for side effects, alot of the time there is your answer.
watch what you eat too, look at all the cr*P there is in them, low carb diet is fab, whilst reducing your carbs it seems these foods and the foods you eat have no or less preservatives.
for the young lady whom has numbess, go and see your doctor to have your back checked, i had an injury to my back that casued numbness in my legs for two years, i received 6 months of physcial therapy but it really didn't do anything, it was like walking on wooden legs for two years. that ws 20 years ago when i was 15, so heed my warning go and have it checked cause you could have some problems later on down the road. i didn't until i was 17 and I had a raised hip that caused curvature of the lower spine, and a slipped disc.i probably was always going to have a bad back as i have spondylitis so thats why at your age if you are having problems with your back its best to go and have it investigated and not to ignore like I did.
good luck to all of you. does anyone have tingling in their head, around the back of the nape forehead and chin, throat etc. i have it in my legs, feet and arms and down my back, and stomach. so weird. plus burning!??? and patches of cold
You did not mention rather you are having any pain or tingling with the numbness.Let me know.
I am 23 years old and I am having bad numbness in my hand, legs, and feet. I had a MRI done and nothing showed up. I am headed back to the doctor this week but does anyone have any idea what could be wrong?
Thanks,
BrodiesAunt
Thanks,
BrodiesAunt
Hi, I'm new to this website. I was diagnosed with polyneuropathy in june 2005. I was given a nerve conduction test by a neurologist for the second time thefirst was about three years ago when he thought it was the beginning of of neuropathy. My doctor put me on vitamin B12 injections of 1000mg every two weeks. It does help with the pain, numbness and tingling until a few days before I am due for another injection, then I go down hill. All I want to do is sleep because I am so exausted and it's painful to do anything. I feel as though I am in a slump.I've been on the injections for about 10 weeks. I went to the doctor for a recheck on Monday, I asked him to let me take the injections every week so that hopefully I won't go into that slump, but he said it would be too much. He suggested I take a B12 pill daily with my injections. I am doing so but now I can't get rid of the electric feeling that goes through most parst of my body. I am constantly moving trying to make this electricity leave my body, but I just look like I'm on drugs or something because I can't be still. Doc told me to think about taking neurontin and let him know in 5 weeks when I go back for a recheck. Anyone have an idea about how to get rid of this electric feeling in my body? And I read that pfizer co. was getting sued for neurontin being prescribed for other uses other than seizers due to the terrible side effects such as wanting to commit suicide. Can someone help me make a decision?
Thanks for the forum. My toes began to go numb approx. 5-6 years ago, and the numbness began to spread to various parts of my feet, and then up to my ankles and then the sharp burning pain began, etc. etc., and numbness going up my ankles and into lower legs. Had complete workup by neurologist: blood tests, nerve conduction, etc. No malabsorp. of B12. Conclusion was that the peripheral neuropathy was simply genetic and nothing could be done. I have been taking elavil 50 mg. and it has cut down the pain to the point that I can periodically walk barefoot again, though it's somewhat like walking on hunks of wet socks. I just looked at the info on the insert to the Aciphex (Pariet) I have been taking for approx. 5-6 years...for acid reflux.
Question: if the Aciphex is not/has not caused a malabsorb. of B12, might there be any other reason for the neuropathy that might be connected with the aciphex?
Thank you.
Manuela
Question: if the Aciphex is not/has not caused a malabsorb. of B12, might there be any other reason for the neuropathy that might be connected with the aciphex?
Thank you.
Manuela
Hi everyone, about a year ago I had gallbladder surgery and I haven't really felt good since. First I started having abdominal pain, which would sometimes even kill me in my back. Anyway, they did ultrasounds, an ercp, x-rays and it seems like every test that I can think of. All of them always came back normal. I couldn't understand this, because I was hurting so bad. My family, including my son thought that I was just depressed and having nerve problems. Mom mom said it could just be my age, since I just turned 41. Anyway, I just kept trying to ignore the pain. It would go away for awhile, but come back again sometimes even worse than before. I sometimes hurt so bad that I couldn't get off of the couch. This time, I started hurting in my legs, so bad that I could hardly stand it. It started when I was laying in bed or when I'd put my feet up. They would burn so bad that I thought that I was going to die. Then it got to where they hurt even whey I sat up. Like right now, while I'm sitting here at the computer. They are hurting so bad. They start burning, and then they feel so cold. Anyway, Now, when I walk It hurts me. It hurts clear up into my thigh of my left leg. The bottom of my foot feels like it's bruised. Can hardly walk onit. What's weird, is sometimes at night, my insides will feel like they are on fire, I will get a pain in my pelvic area, then it goes to my abdomen, and then my shoulder goes knumb, then my hand and arm. So, I went to the emergency room last night. I couldn't take the pain anymore. I finally got a doctor who told me somthing. He told me that it was a neuropathy. He mentioned that people that have Lupus and Vasculitis have this problem. I've been on Dilantin for about 20 years now, which after researching is known to cause auto-immune system diseases. Is there a certain test that I should ask for to make sure that it's just neuropathy, and not Lupus or another disease. Also, I've heard that with Lupus you get a rash across your face, is that true in all cases? I would really appreciate any help that anyone can give me. Sorry my message is so long, but I'm really desperate for help. It's bad enough hurting so much, but I hate the not knowing what it could be.
To all with nerve pain: I'm in your corner! This life-changing type of pain is undescribable. I have idiopathic peripheral neuropathy (and fibromyalgia). The EMG test did not show this (my neuro ordered it only to see if I had "large fiber" neuropathy).
These tests that showed my neuropathy: skin biopsy and Q-SART.
My troubles started after a car accident with whiplash. Got worse and had to cut back on work to 20 bours per week, then had to stop working. Cannot travel much or excercise much either.
I am interested in joining or starting a neuropathy support group in Central Ohio. Have you noticed that people who do not have this "invisible" disease have difficulty understanding it? I'd like to meet others and focus on how to best deal with our situations and concentrate on staying positive! We could meet at a restaurant for starters. If anyone is interested please post! Thanks, Jenny
P.S. I also think our postings here on this forum are a great way to share and learn.
These tests that showed my neuropathy: skin biopsy and Q-SART.
My troubles started after a car accident with whiplash. Got worse and had to cut back on work to 20 bours per week, then had to stop working. Cannot travel much or excercise much either.
I am interested in joining or starting a neuropathy support group in Central Ohio. Have you noticed that people who do not have this "invisible" disease have difficulty understanding it? I'd like to meet others and focus on how to best deal with our situations and concentrate on staying positive! We could meet at a restaurant for starters. If anyone is interested please post! Thanks, Jenny
P.S. I also think our postings here on this forum are a great way to share and learn.
neurotin is very weak and doesn't do much for me .....were you ever on amitriptyline.....it will deaden your nerve pain .................you can probably benefit from it........if your doctor won't give it to you see another one
I also have PN post-surgery. I've had it for 4 years and have been through everything from implanted SCS's to pain pumps. I'm about to try Lyrica. Anyone having any luck with it?
r e e c e @ m a n l e y . n e t
r e e c e @ m a n l e y . n e t
Hey everyone, I'm new here. I've had severe poly neuropathy for 5 years now. I've had every procedure done by a pain Dr. One thing to tell you, STAY AWAY FROM OXYCONTIN!!!!! It helped for awhile, but my body became addicted to it and I didn't know until I decided to come off of it. I ended up going to rehab to get off it, but the depression that followed almost killed me! It took me 5 weeks before the anti-depressents kicked in. Now I am not on the anti-depressents and I'm feeling better. That stuff is terrible. I found out what depression REALLY was, and I'll never forget it!! As far as the neurontin, it helped my neuropathy a little, but I was on a 3200mg a day dose and it made me very tired. I just finished my first week on Lyrica, and so far I don't have any big changes. I am experiencing leg cramps also, but not real bad. I don't have diabetes, but I think my neuropathy was caused from a compression injury to my spine. All I know is that neuropathy sucks! My feet ache 24/7, especially while on my feet. Good luck everyone!
Just caught up with all your notices. God bless us all. I have been taking neurotin for about 3 weeks and have notice some improvement in my hands but feel really frustrated as the pain and numbness in my feet get worse. I have PN (lupus and diabetes) so very difficult to separate symptoms. Since 6 days on neurotin, I have not had any falls. Basically I rely on a walker. Tough since I am only 54 and usually quite active. For anyone with diabetes I recommend researching glucommanin. Does anyone know if there is a national support group for neuropathy?
Thanks to all of you for sharing your symptoms/expereiences with me. I don't feel all alone anymore.
Thanks to all of you for sharing your symptoms/expereiences with me. I don't feel all alone anymore.
Just a quick Hello for now. Had an EMG last Monday and the diagonosis is PN both sensory and motor. My feets is on FIRE!!!!!!
Back to my PCP on Tuesday next for some more tests and advice. I've had Lymes, Shingles, an epidural for DDD two months ago. Guess we'll never find the real cause, I just hope we can find a way to control it.
Back to my PCP on Tuesday next for some more tests and advice. I've had Lymes, Shingles, an epidural for DDD two months ago. Guess we'll never find the real cause, I just hope we can find a way to control it.
ALL THE BOLOGNA FROM THE DOCTORS .............READ UP ON WHAT msg AND aspartame DO TO PEOPLE WHO ARE SO SENSATIVE TO IT AND SEE HOW YOUR MANY OF YOUR SYMPTOMS ARE THE SAME
I am sorry that you cannot even wear the shoes you want. Beleive me, a couple of weeks ago when the burning in the feet and hands started, I could not even wear my flatter sandals that only had a small heal. I tried to take a 5 minute walk and my feet burned on the bottom for 2 days afterwards. The burning sensations have been subsiding so I am back to being able to wear them. They still don't know what any of this is. I have alot of bloodwork coming back in the next few days. Hopefully this is just something that hit my nervous system and will work itself out. I hope things look up for you to.
ALL THE BOLOGNA FROM THE DOCTORS .............READ UP ON WHAT msg AND aspartame DO TO PEOPLE WHO ARE SO SENSATIVE TO IT AND SEE HOW YOUR MANY OF YOUR SYMPTOMS ARE THE SAME
Read your post and I literally let out a sigh of jealousy and "uh" when you said "when I wear high heels". I WISH I could still wear heels! :)
How are you doing? I am now being tested for Lyme's Desease and my doctor is testing me for all kinds of other stuff. My ANA anti-nuclear antibody test) came out slightly positive and my iron and iron saturation are pretty low. I guess the bloodwork that they are doing now is testing for any auto-immune deseases like arthritis and others. I am having an emg on 9/27 to look for any kind of neuropathies. I mostly have the burning prickling pains in my thighs but it is vertually everywhere. I hate this as I never know where they will be worse, when I wake up in the morning. My feel mostly burn and feel numb when I wear high heals. Hopefully they will get to the bottom of this soon but that scares me to. Hope things are better with you.
I also have to agree that the more I read on perphial neuropathy the more discouraged I am getting. I too, have not read about anyone getting "cured" from it. This 24/7 pain is really fricking driving me crazy. Does anyone know how long Neurontin takes before it starts kicking in? I take a total of 1200mgs a day (300mg in the AM and 900mgs) before bed and it is day 6 for me and zero sign of it working. Some sort of relief would be nice about now.
My oncologist is trying to find a good Neurologist and he will refer me to him on Monday. I guess I have another cycle of test to take. ALready did MRI and CT scan. What else can I expect? Is there anything helpful I should know in advance or that I should ask the Dr's?
It is a little disheartening to know I will be on "pills" for the rest of my life with no guarantee of success. When I started on chemo or when I had both my surgeries, I had prepared myself for just about everything but this, I swear, not being able to walk and being "handicap" never even crossed my mind. It totally came out of left field and hit me in the head hard. But what can you do? Stay positive, have faith, continue fighting and never give up.
Good luck to everyone who has any form of Neuropathy. I wouldn't wish this on my worst enemy.
My oncologist is trying to find a good Neurologist and he will refer me to him on Monday. I guess I have another cycle of test to take. ALready did MRI and CT scan. What else can I expect? Is there anything helpful I should know in advance or that I should ask the Dr's?
It is a little disheartening to know I will be on "pills" for the rest of my life with no guarantee of success. When I started on chemo or when I had both my surgeries, I had prepared myself for just about everything but this, I swear, not being able to walk and being "handicap" never even crossed my mind. It totally came out of left field and hit me in the head hard. But what can you do? Stay positive, have faith, continue fighting and never give up.
Good luck to everyone who has any form of Neuropathy. I wouldn't wish this on my worst enemy.
I'm getting really freaked out the more I browse on this Peripheral Neuropathy. It says over and over again of diabetes and alcoholism. I do not have either. I had symptoms immediately after surgery. Everything I'm reading... nothing seems to have a "cure" or even someone stating how they are better, etc. I kept thinking in my head... the Dr's have all said 6-12 months. Though reading on the internet makes it seem as if this is never going away. Very discouraged.
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