Symptoms of Peripheral Neuropathy

[honky]

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.

[CCF-Neuro-M.D.-PW]

It depends on the cause of the peripheral neuropathy

Peripheral neuropathy can cause denervation of joints, which over a long period of time can lead to joint destruction from repeated trauma (charcot joint), this process is usually painless though

The same disease process could also cause muscle pain, or painful involvement of nerves higher up in the leg  or arm, for example in the setting of diabetes or alcohol excess. Neuropathy can occur in other conditions, but it depends on the cause whether they are connected or incidental.

[honky]

Sorry forgot to mention another question: I contracted herpes some years ago and have many outbreaks.  I have heard that this is a virus that can attack the nervous system.  Do you think this could be a cause of the PN? Thanks

[Beebarbiedoll]

Dear Honky,

You do not say what the doctors have told you as to the cause of your Peripheral Neuropathy.  This is something that is normally found in Diabetics or people with MS.  I have similiar symptoms that started 6 weeks ago, in the legs.  It then moved up the spine, to my head.  I to had a history of Herpes on the lips, since my childhood and have heard that some nerve problems are caused by a virus.  Strange that a lot of people with these nerve symptoms have the Herpes virus in common.  I have recently been tested for MS and various other deseases. All this came on 5 months after a bi-level cervical fuson.  I was doing fine until 5 months post surgery. I am a 48 year old, otherwise healthy female. Will be having an EMG done tomorrow.  Will pass on my results when I have them.  Hang in there.

[mollymaguire]

I am a 55 yr old female and was also recently diagnosed with polyneuropathy.  My symptons (2 months) are numbness in all extemeties, shooting pain in the legs, feeling hot and cold in the extremeties and according to fam and friends memory loss.
I fall frequently and am quite clumbsy.  I also am diabetic (type 2), and systemic lupus.  My nuerologist blames mostly diabetes (although I am fairly o.k. at 6.1)  I have many other health problems due to lupus. He started me on neurontin (300 mg. 3x daily).  I also will be seeing a dieticionist and will be taking classes (How to deal with chronic illness- through Kaiser Permanente.  Anyone have any suggestions?

[honky]

Thanks for your post.  I don't yet know why I have the PN.  The drs. say that sometimes it can be idiopathic.  I have had CNS test and loads of blood tests and EMGs which just reveal small fibre neuropathy.  Lately its so hard to stand the pain seems to change on a daily basis and now as well as the burning in feet and strange feeling in calves I have deep aching pains in my thights.  I'd really like to know if this is the PN progressing.  I am on neurontin but have real problems with drug side effects (something I didnt have before this).  Even the odd glass of wine makes me ill now!  Pauline

[Beebarbiedoll]

You are welcome. My symptoms of burning/aching, started in the thighs and intermittent in the calves. Per my note yesterday, it has gone up the spine, to the neck.  I never know from one day to the next, what or where the symptoms will be when I wake up in the morning. One good thing, I was told last week that a new drug, better than Neurontin, will be coming out tomorrow, 9/1/05.  My Neurologist is going to let me be the first to try it.  I will post what it is when I know.  He said it is supposed to be alot better with less side effects.  I am nervous about the EMG test, even though all the others have come out okay. Don't know where all this falls in with the cervical fusion, if it even does at all.  He mentioned this could be idiopathic also but we won't know until the test. I will write back later.  Nice to know there are many others out there with the same problems.

[Beebarbiedoll]

Well, just got back from having my EMG. Doesn't seem to be a problem with any of the nerves.  My legs were tested. I am at a loss as to what is causing all these horrible burning sensations. Today it is more prominent in my feet and hands. Most of the time it is in my front thighs. I am going to try that new medication after tomorrow.  I will post the name of it and let you know how it is working. Maybe there is hope for all of us out there!

[honky]

Hi there - great news about the EMG.  Don't want to put a dampner on it but did you also have a sensory test where they test you for hot and cold sensations.  My EMG was also normal but the sensory test abnormal which is how they diagnosed small fibre neuropathy.  The small fibres seem to be the ones that cause the burning and tingling sensations whereas the large fibres cause motor problems.  Still waiting for my other tests to find out what is causing all this.  What a game!!!! Pauline

[Beebarbiedoll]

Hi Pauline. Well, today brings another lovely set of symptoms. My left foot is very numb and the right one doesn't feel normal. They did not test me for temperatures.  I had the evoked potential last week, which tests for visual, audio and responses from the spinal cord and brain. Came out fine. Yesterday I had the EMG, where they stick a needle in the thigh and send electrical current through and then look at the response on a screen.  He said a neuropathy would have shown up on this. I am at the loss and the nerve pain seems to mostly been in the legs today, with the numbness in the feet. Still have it in the arms and neck but not as bad. Things are different everyday! I called my neurosurgeon's office and told them I think I need to be seen soon and mentioned the foot going numb today. I do not go back to the Neurologist until 9/27 and I told the surgeons office that I could not wait until then, as the symptoms have been changing and getting worse, quickly. They are going to see me in the morning.  Don't know if that neck fusion has anything to do with all this but I don' t know where else to turn....

[mollymaguire]

Hi! It sounds like you are going through the same problems as I am.  Still have numbness in feet and hands.  Also as of this a.m. I have total numbness inright pelvic and back areas with severe pain.  Don't want to get you down. but have you been tested for lupus?  Pretty simple blood test.  Hang in there.  Together we will figure this out. Lupus symptoms are kown to change hourly. daily, weekly,etc.  Good luck.

[Beebarbiedoll]

I have not been tested for the abnormal sensations or for small fiber neuropathy yet.  I now have the prickling sensations throughout my abdomen.  They started on the left side a day or 2 ago and now are all the way across.  This is very bizzare. They say that things like this can come on after surgery or certain viral infections but I had none recently and my neck surgery was 5 months before any of this started.  I am very sick of this as it started back 6 weeks ago.

[Beebarbiedoll]

I forgot to mention that I have been tested for Lupus and various other Autoimmune deseases and the results have not come back yet.  The ANA blood test which tests for all of these things, takes longer.

[nobodysp]

I am going through the same things. I am 33 yrs old, was until 8 months ago in absolute perfect health, even running, doing pilates, and dancing daily. Now I dread walking my children into school because I may walk out looking like Igor in Frankenstein. any incline or decline kills me. What is worse is my limp keeps changing due to the many different causes. sometimes my back hurts, sometimes my leg is just weak, sometimes my whole side is cramped and i am unable to move my leg. sometimes i am stomping and i can't walk any other way. i cannot walk with my eyes closed. i get car sick quite often just sitting at my computer. I do not know how to explain this to people when they ask and they DO ask. I have no diagnosis. or rather, i have several, but they are all wrong. sprained hip, osteoarthris, bulging disks, strained back, anxiety and hip joint effusions, hyperventilation syndrome? oh and best of all hysteria! That was fortunately proved otherwise, as were many of the other things. joint swelling from a sprain does not generally last 8 months. but I have already ruled out rheum, lymes, lupis, and MS. it seems that is about as creative as my doctors get. after that, they just kind of shrug their shoulders and go, like well, umm, i guess we could try neurontin. it helps, i am on 1200mg. but it does not touch the horrible muscle pains that continuously migrate around my body. thank you for letting me vent.

[steeple]

I have been having some back pain and also have Leukemia (take chemo)  my medical PA ordered a back x-ray and said I had degenerative changes of L2 and L3 of my spine--He now wants to do an MRI.  I am concerned that this is very expensive--We have Medicare and my husbands retirement insurance.(does not pay very much)  I know I would not have surgery for this-I was wandering what others thought about having this MRI.  It takes most of our money for my medicines.  And if I am not going to let them do any surgery--can this not be treated without doing an MRI--and What would the treament be?  I have not talked with my Doctor as his nurse just called today and said I was scheduled for an MRI-I do have some neuropathy (numbness and tingling of toes and below knees.  I don't take anything for this-  but 3 sisters do take medication Neuroton??spelling--for the numbness and tingling, but they don't have the back pain.

[Empreinte]

Read your posts - how are things going for you now?  Any answers yet?  Your tests sounded just awful - how did you manage to get thru them?

You mentioned a newer drug to replace Neurontin but you never posted the name of it, or I just couldn't find your post if you did.  Will you please E mail me with the name of this drug?

E mail me at A G D L 20 @ AOL.COM

I would sure appreciate it if you would and if you are now taking this newer one - how is it working for you?  Is it better than taking Neurontin - in other words - do you notice more
improvement with this newer one?

Hope to hear back ~

Empreinte and thanks again~

[Beebarbiedoll]

It sounds like you are having a rough go of it.  I know the MRI's can be expensive.  I have had 6 in the last year, between my lumbar and cervical and thoracic area. Do yourself this favor; get the MRI. It will ease your mind and hopefully be the last one.  Hang in there.  Alot of us are going through some really strange and painful things and don't have answers yet.  I will pray for you!

[meshell987]

I'll call myself dumb.  I'm on the computer literally 2-5 hours daily and for the past 6 months not once did I remotely think of looking up a forum.  Wow.

My symptoms were not out of the blue like some I've read on here.  Mine came right after having surgery March 3rd (tummy tuck).  During the surgery I apparently had complications and lost 4pints of blood. I am 37 years of age. Since then, I've had the constant numbness and tingling sensations in my feet. Some days are worse than others. My first thoughts were to have a MRI for any possible, large, visible damage. MRI showed fine. Then, my thoughts were on the blood received and the epidural received. I've had two children and two epidurals, but I realize each case is different. Now, I LOVE high heels and my closet is just calling my name, but... it's just not happening. It was my entire foot, but now I can feel my toes better (they are still tingly, but not as numb), but it's still the heel and ankle area that are numb daily. The numbness is intermittent in the calves- I can feel this mostly when I run my finger nails up my legs or when I'm shaving. I was originally taking Neurontin (sp) and then was moved to Lyrica. Though my thinking was... I don't want to mask the problem, but figure out what it is and solve it. My husband and I are both self employed, so for the most part we self pay for anything other than major medical. I'm thankful that we live just 10 minutes from Mexico and I can purchase the Lyrica there. Though, it's still $30 for 14 tablets. A box a week. NOW... here's the funny part. I ran out of Lyrica and took one lower dose Neurontin left over and two (800mg) ibuprofin and... it almost feels as if I have more feeling NOW. Again, I don't want to "mask" the problem.  Yes, they (my feet) did hurt for about 4 hours while I sat down and let the tablets take affect. But I used to wake up and have to adjust my weight on my feet before fully getting out of bed. I had also heard that taking Vitamins B1 and B12 might make a difference and that working out would help. Well, I have to try the B Vitamins, but I can tell you that I've been working out 4-5 times a week for 1 1/2 hours a day... and nothing.

I REALLY am glad to have found everyone here. It was very frustrating to explain to Dr.s that I was feeling numb, but that at the same time I stil felt pain. Oh, and btw, I've seen 4 different Dr.s and all of them have told me that from the surgery date it could take 6-12 months before I the normal feeling back. Well, it's been 6mos and I don't feel it's been remotely quick in progressing. If anything, it's been the PHARMACISTS who seem to be familiar with these symptoms. All saying that it was probably the epidural and not blood and that it's not uncommon for them to hear this right after some type of surgery.

Thanks so much for any feedback.

[werty]

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.

[onyx15]

I just read your comment Meshell and I knew I wasnt crazy.  I'll start by explaining what happen to me.  I am 33yrs young and have been diagnosed with Colon Cancer a year ago. The cancer had spread to my liver.  I had a successful surgery on removing the tumor.  I have been on chemo since then.  I had stopped chemo in May 2005 pending another surgery for the removal of my right ovary because of growing cysts. About 3 weeks after I stopped chemo, I started feeling numbness in my hands and feet (no pain )and just assumed it was the after affects from chemo.  My oncologist had me do an MRI and CT Scan and they all came out negative for whatever he thought it could be.  I had my second surgery on August 17, 2005 and I too had complications.  I had an epideral before surgery and during surgery I lost a lot of blood and I too had to have a blood transfusion.  I noticed that I started having pains in my toes the day after surgery.  I was finally released from the hospital 7 days later and when I got home, I awoke the next day not being able to walk at all due to the severe pain in my toes.
I now believe it was the epideral that escalated my symtoms and pain.  I have pain 24/7 and I can barely walk to the bathroom.  My oncologist prescribed Neurontin. I am on day 5 (900mg at night and 300 mg when I wake up ) and I have had no relief whatsoever.  

But now thanks to you, my "unknown periphial neuropathy" might be at least a known one once I tell my oncologist (on monday) that I had an epideral during surgery so he might be able to better diagnose and get to the root of the problem.  I need some sort of relief.  24/7 of pain and about to start chemo again does not make me a happy camper but at least I have a direction to investigate.  Thanks

[meshell987]

Amazing isn't it?  At least I don't feel nuts anymore.  As for my last post when I'd taken the last lower dose of Neurontin (sp) left over and the two (800mg) ibuprofen.  That didn't last long.  I had a terrible night last night.  Tossed and turned and woke up pretty much every hour on the hour. Which is weird because since I've been taking the Lyrica and working out... when I go to bed - I'M OUT.  But not last night with no meds.

I've been taking 300mg Lyrica 2x a day and if I overdue it by walking alot or WHATEVER... I'll add Stadium to that 300mg Lyrica.  I've been taking Lyrica for about 4months now. Today though, since I was cringing from not having anything last night... my SWEET husband crossed the border for me this morning and picked up more meds.  I took 600mg Lyrica and 1 Stadium right away.  

OK.  So there is no "pain" now, but it's still really numb.  I just don't get it.  Am I going to have to live off of 600mg Lyrica daily for the rest of my life and never wear anything but tennis shoes again????

Yes, I believe it is a reaction from the loss/transfusion of blood or the epidural.  I think maybe this blood needs more Vitamin B?  I don't f*ing know.  Deep down... I think it was the epidural.  So yeah, I look good in a bikini now, but just don't put me in heels.

Onyx, you sound like you have much more pain than I do and you are so very brave.  I hope for everyone that some good comes out of symptoms, various Dr.'s visits, progress, etc.

M

[meshell987]

P.S.  I read somewhere on here that soaking in COLD water helps.  Though I've found the opposite.  When I take a warm bath OR cover my feet in a heating pad.  The last neurologist I saw even said as I was leaving to "keep them warm".  Not sure if that helps anyone.

[meshell987]

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.

[onyx15]

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.

[Beebarbiedoll]

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.