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Coping With The Pain of Neuropathy

Peter_S's picture
Peter_S
Posts: 97
Joined: Oct 2018

 


When I first was diagnosed with type 2 diabetes I pretty much shrugged it off and figured I would just east more salads, that was over a decade ago and I was an idiot. As time marched on and diabetic neropathy started in both my feet I became less of an idiot and began to take my situation more seriously.
 
My heart goes out to anyone suffering from Neuropathy for me it became completely debilitating - the pain had gone from bearable to excruciating I was spending day after day laying in bed with a bag of frozen peas on each foot - even though I was taking the highest dose of Lyrica allowed under the FDA guidelines which is 300 mgs a day.
 
I don't know if the following will help anyone but here are a few things that have worked for me in the past and maybe they can ease your suffering - I hope so.
 
T.E.N.S - ( Transcutaneous electrical nerve stimulation )  If by chance you're not familiar with tens it basically uses a very low and safe electrical current to block pain signals to the brain.
 
It's been around for centuries the ancient Romans used to run around the beaches stepping on electric eels that washed up on shore in an attempt to cure what was ailing them. Because some electric eels can put out as much as 70,000 volts my guess is that was the only and very last treatment they ever had.
 
Edison built a famous Tens machine which was touted as a cure-all but it too had an unfortunately high death toll.
 
Tens became popular and a whole lot safer in the 1970's and today many people suffering from neuropathy swear by them. Many of the TENS units today look like cell phones, work by batteries and are easy to use. However, one of the problems in using TENS is the frustration of trying to find the right placement for the electrodes.
 
A better way is to use what are call "Conductive garments" these are gloves or socks that are weaved with a high amount of silver for great conductivity and they treat the entire area making placement a non issue.
 
I used the socks and found so much relief I was able to stop taking the Lyrica but for me the benefits didn't last and I gave it up. If you're in pain I think TENS is worth a try, of course check with your Dr first and if you get the OK buy from a place like Amazon with a good return policy.
 
There's also a new TENS based system that might be worth looking into called Quell it wraps around your calf and I've read some reviews about it but it's expensive.
 
Omron makes a good unit too and it's only about $50 but doesn't work with the socks or gloves, however it does have excellent and large self sticking electrodes.
 
Neurontin - Is a prescription medication that has been proven to help nerve pain, the generic isn't expensive and it may be worth talking to your Dr about it.
 
Lyrica - Another prescription med it's works well for many, I had great luck with it but stopped taking it a few months back. There isn't a generic and it's quite expensive. We have pretty decent insurance and the co-pay for a single month was over $500. You're mileage may vary so it's worth looking into and talking to your Dr about.
 
Magnilife Foot Pain Relief - plenty of people swear by it back in 2014 I felt it took the  edge off but as my nerve damage increased the benefit decreased.
 
There are tons of creams and topical treatments I think Zero Freeze is better than Bio Freeze so you might want to look into those too. Lot's of anti depressants like Cymbalta have been found to help ease the pain of neuropathy and it's my hope that if you're suffering you can find some relief. 
 

Trubrit's picture
Trubrit
Posts: 4759
Joined: Jan 2013

One thing I have noticed. If I eat too much sugar, my neuropathy is allot worse. 

I am lucky that my neuropathy is not painful right now. It is more numb, tingly, or when it gets bad (suagar overload), it feels like someone has a band around it and is pulling very tightly. 

I am five years out from treatment, so I believe this is now a permanent side effect.  I can live with it, because it is not painful. 

The TENS machine sounds interesting. 

I personally refuse to take any medications unless I am in dire need. But that is just my personal choice, and like I said, no pain, just weird.

Your post is going to be very helpful to allot of people. Thank you!

Tru

Peter_S's picture
Peter_S
Posts: 97
Joined: Oct 2018

You're exactly right, I too find that when my sugar is high the pain is worse there has to be a link between the two. Like you I don't like taking medication if I don't have too and I'm so glad your pain is managable my own however is not and I now take an opiate based pain killer and I don't have to tell you the problems that can come from that but it gives me the ability to walk and get myself back into life - which I had been doing until colon cancer reared it's scary head...I digress as usual.

As for the T.E.N.S Therapy it's safe, non invasive and it actually feels kind of nice, like a tingle so if you do give it a try I hope it works for you and that you'll share the results. My Father is 90 and he fought and beat Non Hodgkins Lymphoma 20 years ago and began to suffer terribly from neuropathy in his feet about the same time I discovered TENS  so I introduced him to it and it's been working for him all this time - thanks for taking the time to read my post and I appreciate the kind feedback.

Peter  

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

 I went to a neurologist. I told him I had moderate to severe peripheral neuropathy in both feet , legs and left had. I wanted t know what caused it and can I do anything about it. He did nerve conductivity tests. He then told me I had moderate to severe motor sensory peripheral neuropathy. He said he didnt know what caused it so he could not help me . He then charged me $500.00.

    Over the years I have tried lyrica ,neurontin ,fentanyl and norspan patches. I also spent a couple of years on Targin (oxycodone and naloxone.) None of them helped. I suffer worst at change of seasons. At times my legs feel like they are catching fire and I cant cover my legs with sheets or blankets. It has been my constant companion for twenty yers now and I have learned to pretty well ignore it. I know it will never go away. I have asked my nephrologist about my diabetes and he said my neuropathy did not conform to the patter of diabetic neuropathy. I have been on metformin for type two for over ten years. Most of my specialists have just said that most of my problems appear to be of an auto immune nature of unknown origin. My nephrotic syndrome is well controlled with cyclosporine. My protein loss is reasonably low but at times I suffer severe peripheral and pulmonary oedeema. I take diuretics every day and at times go on fluid restrictions. Again the cause is suggested to be auto immune. I just have to get by as well as i can. I find the worst part of neuropathy is the painful falls I suffer from time to time. I suspect that my vertigo attacks are somehowconnected to the neuropathy. hope you find some relief with the T.E.N.S. Ron.

Peter_S's picture
Peter_S
Posts: 97
Joined: Oct 2018

Reading your post is like I had written it myself, that's how much I can emphasize with what you've been going through - and I'm sorry you've had to suffer so much but I want you to know that I get it, I really do. I know that feeling that your feet and legs are on fire - I describe it as having a live power line wrapped around your feet and legs, same thing.

 
It's unbearable and very difficult to explain . Doctors seem to care less about it because it's not life threatening and treatments are limited, in short it totally sucks.
 
I would see another Neurologist because I can't believe he didn't put you on a Tricyclic antidepressant like Amitriptyline plenty of people swear by it  I couldn't handle the side effects but that's just me and you may have a better experience.
 
Ron, when you can't even handle the weight of a bed sheet that's a sure fire sign of Gout. Gout always sounded to me like something a farm animal would get but it's serious and incredibly painful, add that on top of the already existing pain of Neuorpathy  and you're talking mind blowing, searing pain -  have you had your blood tested for Uric acid? I sure hope so.
 
They'll give you a med called Colchicine you take one and then another an hour later, in less than 24 hours the pain will be under control or gone completely. It's the only drug of it's kind.
 
Ron , again I do know what you've been going through or at the very least I can emphasize with you. I've been living with MS, uncontrolled diabetes and MDD  (major depressive disorder) for decades. I'm a big guy with a big pain tolerance but neuropathy has ruined the quality of my life and the one thing that can bring me to knees and weep. I hope you get a second opinion and are eventually able to get yourself some long over due relief.    
ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

    The endep (amytriptyline) I had a short course of that but it had quite severe side effects for me , for one I was not safe driving a car . I only just avoided a head on crash. That was enough for me. I have had high uric acid levels for nearly forty years. My father and brother were both chronic gout sufferers. I have been taking allopurinol (zyloprim) since the first noted my high uric acid. I can vividly remember the agony that my Dad used to endure in his big toe. I don't think I have ever had a gout attack. I do however suffer from seronegative polyarthritis which they believe to be psoriatic arthritis. I have been treted with sulfasalazine. methotrexate (tablets and self injections) and arava.  my rheumatolagist did not bother with any more lets trys after my nephrologist put me on cyclosporine. It is a transplant grade immunosuppressant and should be helping to control my arthritis.  I have a 4 meter kayak and I get out fishing as much as i can. I find it takes the edge off a lot of my physical and mental issues and helps keep me sane ,if not happy. All te best Ron.

Peter_S's picture
Peter_S
Posts: 97
Joined: Oct 2018

Like your Dad it my big toe too, the one on my right foot. Flare ups are insane because it's hard to believe that such skull crushing agony can come from a toe..ugh I hate even thinking about it. I've seen videos where they remove the crystals from the joint, it looks like cotton or white cotten candy. I'm glad the med your taking offers you some relife and you have fishing to take your mind off all the things we stress over, thanks again, Peter  

Annabelle41415's picture
Annabelle41415
Posts: 6121
Joined: Feb 2009

My neuropathy bothers me terribly if I've missed any of my medication.  I'm not a high sugar eater so can't contribute it to that.  Mine is from not pulling or reducing the oxi when it was bothering me, now it's permanent.  Hoping that yours is at least bearable now.  Wishing you well.  It's terrible that treatment can help you but hurt you in the end, just like what happened to Ron.  He has suffered so through these years and still is working.  We all are troopers in this terrible situation we were thrown into.

Kim

Kim

Peter_S's picture
Peter_S
Posts: 97
Joined: Oct 2018

I feel for you more than I can express, diagnosed with MS thirty years ago, Diabetes ten years ago, MDD all my adult life but I was able build a life for myself despite these setbacks however it was the neuropathy that, and not to sound dramatic - but it's ruined my life, ruined it. Ron is spot on when he says it feels exactly like your feet and legs are on fire, it's horrifying and there's very little that can be done - nerve damage can never be reversed some people are lucky in the sense that their neuropathy is managable and they can do thing to slow down the progression...so please Kim always take your meds, keep away from refined sugar and carbs as best you can.

Peter   

Annabelle41415's picture
Annabelle41415
Posts: 6121
Joined: Feb 2009

You have been through HE** even before this diagnosis started and I'm sorry for that.  It seems that cancer and it's treatment is a gift that never ends.  I'm so sorry that you have gone through all you have and then a diagnosis as well.  You seem to be very well rounded and a great outlook on life.  You are to be commended for as much as you have gone through.  I'm wishing the future holds more promising outlook and you find much help on these boards.  We are glad to have you already trying to support others at your early journey. 

Kim

Peter_S's picture
Peter_S
Posts: 97
Joined: Oct 2018

Aw Kim thank you for all the kind words but I really do feel I've never had to deal with anything that makes me worse off than others. This isn't to say I haven't had my fair share of pity parties but I know I'm blessed in so many ways and for that I am eternally grateful.

 
You're right about this board too, I love it here, it's helping me and I'm always learning something new. When I first signed up I was pretty terrified and thinking that there's just no way I can handle colon cancer, now I know differently.
 
Thanks again for all the well wishes, I see the surgeon at Yale this Tuesday and the one closer to home on Thursday but as I've said in previous posts unless there's some remarkable change I'm sold on the guy at Yale even though it's not as close to home.
 
One last note, not everyone can wear my favorite color well (yellow) but you knock it out of the park and I love when I see your picture because that color yellow is so well, perfectly yellow. It's sunny and bright!
 
Peter :-)
Annabelle41415's picture
Annabelle41415
Posts: 6121
Joined: Feb 2009

Thanks for a very nice comments.  It's good to pick a surgeon you trust and after you see the two this week you can decide on who you think is the right fit and termperment for you.  Remember this is your life and you have to trust in the one that is going to make some major decisions in your future, but you are ultimately in charge.  Make sure they know that fact.  Also, yellow is one of my favorite colors to wear, it's just hard finding clothes in yellow.  Good luck this week and let us know how it goes.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

MS, too?! Good lord Peter! I wish I could offer suggestions for neuropathy but I still have it in my feet. Mine isn't bad, though, and most of the time I don't notice it. It feels like I have dried mud stuck to the bottoms of my feet and when I walk around it feels like walking on bubble wrap. But never pain.

Jan

Peter_S's picture
Peter_S
Posts: 97
Joined: Oct 2018

Yes mam, back in 88/ 89 but I've been very lucky and with the exception of a numb right leg and some urinary tract issues I've been in remission for 30 years - this isn't unusual for MS it's a crap shoot and it can go into remission for 25 days or 25 years. Back when I was diagnosed a friend for mine was as well. Within a year she was in a wheel chair but my progression came to a screeching halt for which I am eternally grateful.

 And again, the symptoms I do have are a piece of cake, especially considering the suffering of so many others.
 
(knocks on wood) 
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