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Idiopathic Neuropathy

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Woozydoll
Woozydoll

Hi everyone new to this forum. I am a 62 yr old male who is not diabetic. I have been battling neuropath

y for the past 10 years in both feet but more intense in my left. I have been to 3 neurologist the Vanderbilt Neuropathy Clinic with no relief. Was told by all that there was nothing they could short of gabapentin and Lyrica. Tried Lyrica and with in two day wanted to kill everyone that I was upset with. Note I am the calms guys you have ever meet. Quit taking the Lyrica and started on gabapentin 1800mg per day no results after a week. 2400mg no relief. 3600 and could tell the difference. Problem was everyone could tell the difference in me, I was a zombie. Went to three talks from Chiropractors and final was convinced by one he could heal my feet. $6300 and 30 treatments later nothing. A friend told me that he had poor circulation in his feet and had starting using a vibration massager and was seeing a difference. I bought a MED massager on line and have been using it for the past four weeks. The results have been amazing. I have the gabapentin down to 1200 and plan on cutting down more this week. Folks try this, there are several types of massager on line get one. I use mine every morning for 30 mins. For 30 mins when I get home in the afternoon and at least an hour at night. This has changed my life. I hope it works for you, give it a try and stick with it for a few weeks. I went from wanting to amputate my feet to stop the pain to now actually being able to feel sensatios again.

2 likes, 29 replies

29 Replies

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  • Peonygirl1
    Peonygirl1 Woozydoll

    Posted

    Wow, this is an important post hope it helps many people. So very happy for you. Best of luck sure hope you continue to get relief. 🍀🤞🏻

  • maryann35553
    maryann35553 Woozydoll

    Posted

    Glad you are getting relief. I have been getting physical therapy for neuropathy in both feet. It is helping. I plan on purchasing a foot massager for further help. Thanks for your post.
  • rubeena76414
    rubeena76414 Woozydoll

    Posted

    Amazing ...that you have found relief with the massager.i am also a patient of polyneurropathy.....can understand what you have gone through. ...lmy feet gets so heavy that I feel i have cement foot.iwill surely try the massager. ....thanx for sharing
  • rubeena76414
    rubeena76414 Woozydoll

    Posted

    Amazing ...that you have found relief with the massager.i am also a patient of polyneurropathy.....can understand what you have gone through. ...lmy feet gets so heavy that I feel i have cement foot.iwill surely try the massager. ....thanx for sharing
  • belinda62595
    belinda62595 Woozydoll

    Posted

    Hello, I have terrible foot pain in both feet, like walking on hot coals and like you didn't know what else to do. I also have 3lumber degenerated discs and sciatica so when the foot pain came on as well I could have given up altogether. I have been to doctors and podiatrist and my next port of call was neurologist. As with anything with NHS you have to go through a routine and I was in tears last week when my dr said I had to through all the procedure again of physio, podiatry etc. I wanted to scream at him FOR GODS SAKE Iv'e already done all that. Like you I am not diabetic, so if the neurologist is another can't do anything, I may as well invest in one of the machines that you have tried. I really hope yours keeps giving you the results it's doing .

     Belinda

     

  • william_29578
    william_29578 Woozydoll

    Posted

    Thanks for this invaluable information. I,  like you have been to several neurologists, had back MRIs done and nothing they can do for me! They say its idiopathic neuropathy. Not one of these doctors ever recommended a MED massager. I am going to buy one online tonight. Its worth a shot if it can relieve the numbness. Your post has given me some hope that I can get some relief!  Thanks.
  • Lodge
    Lodge Woozydoll

    Posted

    I was thinking about getting one of these  a while ago, but didn't think it would make any difference and of course they are quite expensive.  However, on reading your post if there is any chance that it could help my feet, then I think I must bite the bullet and get one.  

    All the neurologist told me was idiopathic neuropathy, which is so frustrating because you just don't know what has caused it and what to do to try and help the condition.

    Do you also get the extreme icy cold feeling in your feet, yet they feel warm when you touch them?

    Is there any particular make of massager that you would recommend?

    Many thanks.

    • Woozydoll
      Woozydoll Lodge

      Posted

      I bought a MED massager but there are several out there. Don't know if this will help you but I'm sold on it. Are

      all the symptoms gone, no, but what was an almost unbearable 10 is now a tolerable 5 pain level. Hope it helps you.

  • bearcatjer
    bearcatjer Woozydoll

    Posted

    Congratulations on finally finding a way to get relief. I have severe neuropathy in both of my hands, but generally only when i am lying down is it severe. I have never tried any medication or special drugs to control it...the ones like Gabapentin and Lyrica sound scary in terms of side effects. I wear compresion gloves to sleep in which helps somewhat but not nearly enough.Does the massager you use work with hands? I am contemplating finally going to a doctor but i have severe degenerative arthritis in my neck, CTS in both hands and moderate Type 2 diabetes. I dont really know the cause of my neuropathy but tend to think it is from Diabetes because my condition has deteriorated somewhat since i started having the "firehands" in the past 2 years so i tend to think Diabetes is the culprit. My family doc just ordered an EMG as a place to start but im not optimistic that will help. Do you know anyhting abouty the over the counter market drugs for Neuropathy....Neuronzin is one i think? I dont generally believe much in those kinds of things but i need to do something ...tired of sleeping sitting up right! Good luck and thanks for any advice. .  

     

  • kenbkb
    kenbkb Woozydoll

    Posted

    I see that many of these MASSAGERS are hundreds of dollars. Which one did you buy and why? Thanks for your input. 
  • Billijohn
    Billijohn Woozydoll

    Posted

    Hi Woozy!

    After reading your post I thought I’d give this a try.

    1. Is this still working for you now?

    2. Can you please tell me your routine as far as settings and if you started slow and ramped up?

    Thanks so much!

    Bill

    • Woozydoll
      Woozydoll Billijohn

      Posted

      Sorry I haven't been on this site for awhile. The Med massager is still working but not as well as it did when I started. In the beginning the nerves were so dead that the vibrations made my feet feel much better every time I used it. It is very evident that the nerves were starting to get better and become more sensitive. Problem as they became more sensitive I had to keep turning the level down on the massager. Started out at 9 of 11 now down to 2. I can only use it for a few minutes at a time now. It actually makes them worse if I go much longer. The massager has definitely improved the feeling in my feet but the pain is still there, it's just different now. For all you who are dealing with this you can understand that the pain can change from minute to minute. Don't regret buying the massager. I am still taking 1200 mg of gabapentin daily and still looking for that miracle cure.

  • kenbkb
    kenbkb Woozydoll

    Posted

    I had been a sufferer of non diabetic neuropathy in both feet for many years. I found a podiatric surgeon who suggested the source of the pain was nerve entrapment. Both feet have been operated on and the nerves in each were decompressed. I have complete pain relief in both feet. 
    • Billijohn
      Billijohn kenbkb

      Posted

      Ken, howdidrhe surgeon determine that the nerves were entrant? Is there a test for this? What does the operation do? How is recovery?

      Thanks so much!

      Bill

    • kenbkb
      kenbkb Billijohn

      Posted

      Hi Bill, the Podiatrist did not know for sure, but through his extensive experience, he PRESUME this is what he would find since I am a non-diabetic. And sure enough, this is exactly what he found. The nerves were compressed, sort of pinched by all the fascia in the area. On the one foot it was kind of cinched up like a garden hose. 

      He says it is an 80% cure rate. The recovery depends on how long the nerve has been compressed, ie., even though he may decompress it, the nerve has been damaged and needs time to recover. So it took me a good year for it to get better. It slowly and slowly improved. Had to stay on the neurontin. Now on the second foot, which was done a few weeks ago, he expects this turnaround in healing to be much quicker, since the original foot had the nerve problem resolved. For whatever reasons, the way the nervous system works, if there is health in one of the feet, the recovery time is faster. 

      Changed my life, no more feet outside the covers at night, no more loads of neurontin, now more pain pills, no more socks with the toes cut out. Am more than willing to offer you any insights I can. All I can see is for myself, the pain has been resolved. I wish you the best....ken

    • Billijohn
      Billijohn kenbkb

      Posted

      Ken,

      Thanks so much.. I am very happy for you.

      Did your podiatrist say what could have caused this?

      So, do I look for a podiatric surgeon or are all podiatrists also surgeons?

      How invasive is the surgery? Is it out patient?

      Thanks again!~

      Bill

      Bill

    • kenbkb
      kenbkb Billijohn

      Posted

      Bill, no, he did not say what caused it. 

      I do not think many do this surgery, overall, I am not sure how many "regular podiatrists" are also surgeons. My podiatrist actually trained under the physician that "invented" the surgery out at Johns Hopkins in Baltimore. He did a fellowship with him. 

      I am in Chicago and the Podiatrist I see also treated one of the sheiks of Saudi Arabia while under armed guard so I believe my guy is one of thee most outstanding podiatrists in the country if not the world. I know he has taught in over 40 countries. And is a nicer person that even as good as he is as a Podiatrist. 

      The surgery lasts less than an hour, you are put under general but generally are home by noon if not sooner. I would strongly encourage your seeking out more information, and I am more than willing to help you with that. 

      Are you diabetic?

    • kenbkb
      kenbkb

      Posted

      Over the past few years my pain was so bad I was as high as 2000 mg+ Gabepentin with the occasional Tramadol. I am expecting to be off the drug totally over a period of time. 

      As I said, once one foot is taken care of according to my pod the second foot once operated on will heal much more quickly. 

    • marie33
      marie33 kenbkb

      Posted

      Hi Ken, You say your Podiatrists assumed it was entrapment. But what test did he do to confirm his "theory"?  Did he operate to see if this was the cause and correct it while he was there? OR did you have a test to confirm this was the problem? What kind of tests did you have before the surgeries, if any?

      Did you only have pain and burning in your feet, or did it progress to your legs or hands...

      Are you not a diabetic? I have Idiopathic small fiber neuropathy.I suffer horribly from neuropathic pain and burning in my feet, legs, all over..I take 250mgs Lyrica which does not help. I  was wondering if you could offer any suggestions..Ty

      Marie in NY

       

    • kenbkb
      kenbkb marie33

      Posted

      Marie, there is really no test for it. In his wealth of experience in dealing with PN in NON-diabetics, this has proven to be the case though most frequently. I can ask him as he also happens to be one of my best friends from college. 

      The burning was primarily in my toes, more towards the bigger toes. I have not worn sox for years...and I live in Chicago! I eventually just cut off the front of the toes of the socks, and wore them with my toes sticking out. Did not sleep with my feet under covers for years either. Pain was horrific. 

      With my surgery on my left foot, I did not have pain radiating up my leg. But my right foot did, and this was the second one I had surgery on. Actually it was not pain, but a numbness around the side of the calf. He felt there was entrapment up there also, and did free up the nerve opening up on the calf. 

      My right foot and calf were just done three weeks ago. 

      My left foot was done in 9/16.

      Marie, I am not a diabetic. So you have it WHERE in the legs? How far up? I never used Lyrica, heard it was very expensive and with major side effects. I took Neurontin for years without any side effects. Took tramadol as needed. 

      My doctor is world renowned. He is chairman of the midwestern assc of podiatrists, and has taught liberally everywhere around the world. Whether he would think this is  your issue, you would probably have to call him. He is a true humanitarian and lives to help people. Even though he has 50 people working for him he always finds time for people. I am not sure he sleeps much. ha

      You let me know how far you want to take this, or perhaps he can recommend someone with his skills wherever it is you live. I don't want to make him out to be a god but for me he rid my life of this horrific pain. 

    • Woozydoll
      Woozydoll kenbkb

      Posted

      What is the Dr name and where is he located?
    • kenbkb
      kenbkb Woozydoll

      Posted

      I sent a reply but it IS WAITING TO BE MODERATED. I provided a link to his office and a link to a PN foundation which is an advocacy organization for PN sufferers. 

      If that comment is blocked his name is Dr John Grady of Foot and Ankle Associates. Just g o o g l e him up. 

    • Billijohn
      Billijohn kenbkb

      Posted

      Hi Ken,

      No I am not diabetic. I am diagnosed with idiopathic neuropathy. No known cause but I believe it could have been caused by the large amounts of the antibiotic CIPRO I took for many years.

      Thanks for posting the docs name. I'll look into this.

      Bill

    • kenbkb
      kenbkb Billijohn

      Posted

      Oddly, I took CIPRO and many other antibiotics to excess for years to treat various ailments. Nonetheless, there apparently was a direct causal effect with my problem with the entrapment of the peroneal nerve on top of the foot leading into the toes. 
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