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Anyone else have Neuropathy/Pain in BOTH LEGS/KNEES ??

RRraeRRRrae Posts: 85
Hello There!
I am having a heck of a time finding anyone else who shares the same type of issue I battle... My heart goes out to EVERYONE here - pain SUCKS ! :''(
I've been told I have everything from Fibromyalgia/RSD/CRPS/Small Fiber Peripheral Neuropathy/Radiculopathy/HyPOthyroid.....take your pick
5 Years ago it started out as knee pain (burning) from over-use and walking on treadmill 100 miles/month...since then the pain in knees has become worse and it radiates outward to involve the WHOLE legs (BOTH!). It's getting harder to walk, I can't hardly go UP stairs and each leg feels as tho it weighs 200 pounds in full flare mode. I have been thru the gammet of docs/meds/procedures/tests etc. And my legs LOOK NORMAL. So then the focus turned to the spine and the peripheral nerves.'

In 2 wks I will be getting a trial Spinal Cord Stimulator Implant as a 'last resort' option of pain control.
It will target the dorsal column for Radiculopathy. But in all the research I've done, I don't seem to 'fit' the symptoms ??!! Can ANYONE relate?
The only thing I have tested positive for is HyPOthyroidism and am taking Sinthroid to keep it under control. Does this tie into my Neuropathy somehow?

I will be happy to give whatever details I may be leaving out to help me figure out what to do! Actually, to be quite honest at this point I don't care WHAT the diagnosis is...I just need the pain GONE! I can't continue living the way I've been for the past 5 yrs!
I AM DESPERATE ~X(

Rae
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Comments

  • Hi, Been there and have it still. I've had the injections and 2 lumbar surgeries and still have it but I was told I have nerve damage in my right leg but it hurts in the left one more then the right, make any since, NO. I don't understand it either.
    What kind of Med's are you on? I'm on the pain patch and Oxy. and I change the patch every other day it's a 100mg. but after that morning I can change it rolls around I've hurt all night the night before.
    The injections never helped me in the least I've had 7 and nothing.
    My Friend had the stimulator put in and his results were very strange in the groin region if you know what I mean. His wife didn't mind it though but he finally had it taken out because of the painful result,[ All The Time] anyway they tried the pain pump on him and it worked but the dumb A-- doctor that put it in was less then professional and laid it down on an unsterlized surface and he got staff infection out of it and still has it but had to have the pump taken out. Donna
  • Thank you for sharing. It seems as though you've seen a bit of 'medical mismanagement' going on! I'm SO sorry for your friend that had BOTH implants fail!

    I too am using the Duragesic pain patch. I was on the 100's but am trying to do the 50mcg/48 hrs because i had too many pain 'spikes' (breakthru) with the higher dose. I use Lortab for breakthru. My pain doc has been very patient as we have tried so many different 'cocktails'. I really like the patches, as it eliminates from having to take PILLS all the time!
    I've had 2 Sympathetic Nerve Block Injections with very short-lived relief.

    Do you have any idea how your leg pain/nerves were damaged?
    Most of the real excruciating pain is at the knees and i can't seem to find people with similar complaints. Most cases involve Sciatica or spinal issues. I hardly ever hear of people specifically talking about the KNEES.

    How long have you had your pain? And have you considered the SCS? (probably not from what you've been witness to!) :(
    Please stay in touch....I'm new here and need all the buddies i can get! It gets to be a pretty lonely situation when most people around me simply can't 'comprehend' how horrible this really is..
    Keep the Faith
    Rae
  • Have you tried epidural injections or tried Cymbalta yet? These have helped my numbness and sciatica. Good luck with your SCS trial. I hope that will help your pain. Best wishes and keep us posted how you fare. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I did take Cymbalta 60mg for over a year. I guess it helped a bit....but it caused me to sweat ALOT and to overheat very easily... So i quit taking it. I've also tried Neurontin, Lyrica (bloated up like a huge GAS balloon!) and Amitriptyline... all to no availe.

    I've had 2 sympathetic nerve block injections and had very shortlived relief.
    I'm glad the Cymbalta is helping you - it is a good med.

    I'm amazed that there is so much info on this forum Re: SCS!
    I will gladly read everything i can find! Very helpful and the people here are very open and friendly!
    Rae

    PS I noticed you have tried Acupuncture. Did it help?
  • Acupuncture did help my leg a little but mainly made me feel very rested like I wanted to sleep. My Physiotherapist did it so it was included and covered by my insurance last year. I'm thinking of going back this year coming up again to try it. My PT went on vacation and had a different PT do 2 treatments and it was painful but the first PT i felt nothing except a bit of pain in my foot but didn't last. Thanks for the reminder I have to book my appointment! Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Hi Rae, I just found this site from a google search of "neuropathy knee pain". I am in the same exact boat as you. My pain started many years ago (I work in the film production business and spent many hours on my feet for years and years). I spent almost 15 years going to podiatrists, orthopedists, rheumatologists, neurologists, etc. trying to find the cause of the pain. With no visible symptoms like swelling or redness, doctors were hard-pressed to come up with a diagnosis. Finally I received a diagnosis this past year that it's small fiber peripheral neuropathy. My pain started equally in both legs and over the years travelled up to include both knees. now I also feel occasional pain in my arms as well, but the knees are the worst of it. It feels like a burning sensation in both kneecaps, making it difficult to walk or be on my feet for any length of time. I've tried meds like Cymbalta and Elavil in the past, to no effect. Currently I'm on 1800mg/day of Gabapentin (Neurontin) and it hasn't done a thing. I have not tried injections or surgery and haven't met with any spine doctors. I'm wondering if you've had any relief at all or are you still suffering from your knee pain? thanks,

    glenn
  • Welcome to Spine Health.......just so you know, when it comes to medications to treat nerve related pain, there is a lot of wiggle room in dosage- the dosage range for gabapentin is 100-3600 mg per day......so it can take a while to see the benefits of the medications.
    Also if those don't work , you can discuss trying Lyrica, or topamax or cymbalta and there are several others that may help if the gabapentin doesn't.

    http://www.spine-health.com/forum/announcements/spine-health-announcements/welcome-spine-health-how-get-started
  • thanks Sandi, Have you found relief from neuropathy pain with any of those medications?
  • Have you ever been tested for multiple sclerosis? I had neuropathic pain in my lower body that started very light and started to spread and get worse. Ask your dr about it. Do you get headaches behind your eyes (not migrains)? Balance off? When you run do you feel like your gonna fall from balance issues? When it happened to me it took forever for doctors to figure out what was going on they all think I was drug-seeking because it was after a surgery that it started. Till I see one neurologist who asked me if I ever got tested for Ms and I said no and he got me an MRI and lo and behold that's what it was. Get tested make sure it's not MS there's not a whole lot that can be done about it if there is but if they catch it early enough there are medications that can slow it down I hope this helps. Good luck.
  • I have a SCS was implanted in Feb 2014. It was for tailbone and hip pain. I had leg pain with it. My leg and foot pain is now so intence after only walking for a very short period of time. My life is nothing but pain. I can't even grocery shop anymore or Evan stand to cook dinner. My feet will burn I start almost dragging them, and finally having to sit down. It has cured my tailbone pain, but now I'm left like this!
  • SavageSavage United StatesPosts: 5,940
    Hello denschwindt !

    Welcome to Spine-Health
    Please click on link for helpful information!
    Sue
    Spine-Health Moderator
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    Please read my medical history at: Medical History

  • chrisduffycchrisduffy NOTTINGHAMPosts: 1
    Hi Rea 
    I have very bad Knee pain I have spent thousands on physio, doctors etc.
    My pain started 3 years ago,it is like a stabbing pain in the knee cap, then i got pain in my ankles, shoulders, neck, back
    wrists, fingers, I have taken all sorts of pain killer non worked, then I was prescribed anotriptolene, this helped me sleep, but not the pain, then i had gabbapanthin did nothing at all, ( I cant spell the names ) now I have Duloxetine 60mg  one at night, it does not help me sleep but its the best tablet I have had the pain in my wrists shoulder, ankles,,neck,back fingers have subsided, as have the pain in my knees I have pain in my knees but no where near as bad also I forgot to pick up my tablets one time for 4 days the pain that came back was intolerable I cant live without them now
    i have had accupunture,  electro shock, physio, nuematic shock wave therapy, injections, 20 of them !
    you name it I have had it I  used to go to the gym 3 times a week, I loved the rowing machine i could burn calories in minutes but this was the machine where i first got the pain, I have not been to the gym in 3 years the tablets I have taken have helped put on a lot of weight it has done my head in
    i am now about to try swimming to see if this will help me loose weight and not hurt my knees to much, if i try to run the pain get worse, I am from the uk so you tablets may have a different name  but I have spelt the name right for them 
    also remember these tabs are anti depressants, so taking to higher of a dose does not work on this type of pain,
    Like you I never stop researching  for a cure but at the minute I can't find one 
    if you come across any more info please let me know and I will let you know how the swimming goes next week 
    Regards 

    Chris 
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