peripheral neuropathy pain getting worse

[keido]

I am in my late 30's and the cause had never been determained. My peripheral neuropathy seems to be getting worse as time goes on, i am taking gabapentin for the pain, numbness, and tingling. I am starting to gain weight and the medication is not helping as it was at the begining. Is there something specific that need to ask my doctor, maybe a new medication? I have also started to fell the pain and tingling in my legs. Also, I would like to know how far this is going to progress.

[weakkneeswilly]

My neuropathy is getting worse! I take 3600 mg daily of Gabapentin and it doesn't seem to help! I use CVS therapeutic menthol gel that seems to help more than the medication! Sometimes when i wake up in the morning I just know its going to be a LONG day! Please HELP!!!

[taliaspop]

It's weird in that my foot neuropathy only rears its had at night, maybe 4.00 am when my left foot and toes scream with agony. I do not have any symptoms during the day, and indeedwalking for half an hour in the night, relieves the pain. I do take at least 600mg of lyrica which at times, makes me wobbly on the feet. Ay 72, I walk very hard trails three times a week and that helps. My feet never give me trouble during the walks, so what gives at night time?

[tscare]

Hey Supastah,

I know this post is a bit old but was wondering how things turned out for you.  I have had neuropathy in my legs (upper) all the way down to my feet for 2.5 years.  I have also been told post viral.  What has worked for you?  Any relief yet?

Thanks in advance. I am getting pretty desperate as things seem to be getting worse not better.

[Supastah]

I dont know where you live, but if it near a top hospital they usually can refer you
to their Pain Mgmt Division..Your own Dr should know one too, but if not,
I would start at best hospital nearest you...Find a caring one and you will feel
so much better...Also, at least try to get Tramadol from your Dr.
Its worth a shot that it might give you relief!   You have to kep in your
system to work..Mine works right away..Let us know!

[keido]

I would like to thank all for responding to my question.  I am sorry that I left so much out of my question, I was not sure what to add.  Okay, the test I have had has been more than I can remember, but 3 yrs it took them to determaine I have Idiopathic Small Fiber Sensory Neuropathy.  I have had EMG's, EKG's, MRI's, CAT's, and many more test from std's to full blood panels, more than once.  I have never been told about a "pain Dr", I will find out about one. I have been on gabapentin 300 mg 3x per day for more than a year, and the only thng that I take for pain is advil when needed, okay every day, but I try not to take more than 3 caplets a day so I live with the pain and I know that I shoud not have too.
  

[Supastah]

Personally, I have had every possible test, some of them more than once..
The only thing that ever showed up was slightly elevated protein in spinal tap, but
several DR's did not think it was enough to be concerned about..I was even
seeing the top neurologist here, Dr Alan Pestronk..It's really bad when they cantfind anything so all they can do is try treat symptoms, Since I am very med sensitive
I can only take tramadol...I am really left with just my Pain Dr, and he's been more
help then any of these other "top" Dr's, thats why I think it is so important to find a good one....I know when they cant find anything , they just say "Fibro"..I cant believe
we all have that..I go for my 3rd Steroid injection today...Relief is on the way!

[AireScottie]

What all were you tested for to determine the cause?  Did you get tested for every autoimmune disease there's a test for?  Did you get a lip biopsy to rule out Sjogren's?  Lyme disease?  Heavy metal poisoning?  If you didn't have a really extensive workup for the cause, then that would be a good idea.  If you've already been through that, then sorry I can't be more help!

[estryker]

I have just submitted a question to the neurology forum, and now see that this post is very similar.  I wonder if any of you guys out there who are experiencing peripheral neuropathy have gone through the similar cycle of possible diagnoses as I have:

cubital tunnel syndrome
thoracic outlet syndrome - neurogenic
thoracic outlet syndrome - arterial, venous and neurogenic
bone spurs in cervical spine, causing nerve compression
slipped disc in cervical spine, causing nerve compression

every treatment I have tried has been unsuccessful: physical therapy, steroid injections in spine, etc

I also find gabapentin and tramadol to be somewhat helpful with the pain, but not the numbness.

The question I have is, what else can I do to get a clearer diagnosis?  What have you all tried?

[opus88]

Supatash has given you good info there!
I too have the neuropathic pain and have relied on gabapentin for last 4-5 yrs, I too find I now need to up the rx frm 1800-2100mg daily...WHAT DOSE ARE YOU ON?
I have been to a pain specialist..so far all I have had is an MRI and BONE SCAN..that shows herniated disks (DDD) and osteoperosis of hips and spine.
I have gotten 2 cortisone injections to my hips that really helped with the hip pain but no real relief for the pain in my legs....I go back for more injections in sept. so I'm going to ask more questions abt further treatment for leg pain at that time, but the impression I got is cortisone and facet injections to the spine for relief of UP TO 1yr possiblity, so far I have refuse the spinal injection after further reading. I get by on the gaba and oxycontin.
for alot of info on these injections look at the website:
www.spine-health.com
good luck

[Supastah]

I am not a Dr, but have gone through this for over a year and cause has yet
to be determined...They think maybe Post Viral caused the neuropathy..
Almost worse than the pain is find a DR that hangs in with you even when almost
every test is negative..They need to find a reason..And, if it is idiopathic, then
you will need to find med and treatments on your own that help..Dont just hang
in there with one med..I could not have survived without Tramadol..Also, I found
a great Pain Mgmt Dr who worked miracles with epidural steroid injections..
They dont last forever, but help you while your nerves are healing..If you have not
had a nerve biopsy you should probably have one, but please note there are side
efects from that, that no one told me about...I am still dealing with those effect ..
The most important thing I have learned while going through this is dont just
count on a Dr , or just one Dr...You read everything you can about this and
keep fighting until you find the right pill, treament and team of Dr's that believe in you
and want to see you well...Keep fighting!