Saturday, September 20, 2014

Monday, July 06, 2009 CoCowboy692000, Community Member, asks

Q: I am a diabetic with severe neuropathy.

It is extremely painful most of each day, feet and shins. Most of the time I cannot feel my feet. Unfortunately when I can feel them, it is excruciating and I cannot walk. 

 

I have been in care for this for a year and have done many neuropathy associated meds and physical therapy to combat it. I have had no positive results. I have tried Anadyne Therapy, Neurontin (Gab) and several other meds. It continues to get worse and the condition now affects my ability to drive. Severe fatigue is an issue due to the meds as well.

 

Finally, EMG/NCS studies were done. My doctor told me the reason for my severe pain levels is that the small and large fiber sensory are involved. I don't understand: what, why, and to what degree this has affected me or how much it will in the future.

 

Does anyone understand this small/large fibor sensory thing?

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Answers (6)
Cort, Health Guide
7/ 6/09 8:14pm

A tough situation! I'm afraid I don't know the ins and outs of the small/large fiber nerve situation.  Have you tried the Diabetes community on Health Central? They might have more information and better tips.There is alot of Diabetes research going on. If you can't find anything helpful right now keep your ears open - something be just around the corner. Good luck! 

 

http://www.healthcentral.com/diabetes/c/question/all

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CoCowboy692000, Community Member
7/ 7/09 6:55am

Yes, I have been looking up the terminology in the report trying to get a feel (no pun intended) for what is stated. Unfortunately, I haven't found anything that can put it into laymans terms.

 

I am also a 2 surgery back patient and I understand that one well. However, I am still trying to wrap my head around this. I don't understand it.

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rawn takacs, Community Member
8/14/09 6:03pm

I am 52M with cronic diabetic neuropathy of both feet, have had spinal chord stimulater (Failed) the Dellon procedure Nerve decompression surgery (Failed) Spinal injections (Lasted for 7 hours) and have taken every anti-depressant, Lyrica, Gaprepentin and much, much more. I was taing about 700 pain meds a month, not kidding and still did not sleep or get much relief. Over 40 er visits in a year and they would inject Dilaudid and I would be OK for about 5-8 hours and then it would creep back in, got to the point that I barley walked for the last year, Pain doctors just gave me more pills, 2 months ago I found a GP and she started me on Home Dilaudid injections (muscular not vein) I have had the best 2 months of the last 3 years, I inject 8-10 times a day 2mg 1cc, seems drastic but I am walking, the stigma of being a junkie worried me but like I said, I Am Walking, the shots seem to be working shorter and shorter and I am very worried about it because I am not going back to the 24 hour pain, I have a great family and do love life but refuse to go back to the constant pain, I hope this helps you in any way. Neuropathy Sucks myfriend.

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CoCowboy692000, Community Member
8/15/09 12:05pm

I can certainly appreciate your decision to take the Dilaudid, which I had occasion to take a year ago. Didn't like that one as well as Demoral personally. I can appreciate your concerns regarding the junkie remark. I personally don't worry about that stigma simply because nobody else lives my life. Others have no idea what I endure with this affliction (or what you/others have endured sir) and I don't need their approval frankly.

 

I have a handicap placard which is limited help. Walking is hard and getting harder, no matter how much or little and no matter how far or near and always triggers severe pain. I take Vicodin and neurontin (Gab) among other things. Gained some limited benefit when I started the Vicodin - finally. The drugs I do take cause me to be very drowsy at the wrong times and very awake at the wrong times (as I'm sure you're aware). I do get about 6 - 8 hours of relief on average from the meds. I refused to take the anti-depressant (Cimbala I think), despite paying for the prescription, after reading the warnings when I had issues with it. I figured I would be better off with nothing or something else. I won't take the anti-depressants. 3 months ago I tried the epidurals. Big mistake (for me personally). I am maxed on the neurontin but the doc had no problem with giving me the vicidin which has offered some limited relief. The Neuropathy just gets worse for me though. I went to physical therapy for 3 months. 3 times a week, 2-3 hours daily. No marked improvement.

 

In the end I agree with you and take the same position as your remark when you said, "I do love life but refuse to go back to the constant pain".

 

Right now I get some minor/moderate relief and on my worst days... no relief at all even from all of these pills. I also have severe numbness - no sensory in my feet - except the pain. I also have marked weakness in one foot which they think is a different problem.

 

I can never tell how bad my neuropathy will get during any given day or how dramatically or how frequently it will affect me on that day or group of days. I used to keep records of the pain issues because at the time, I had no idea what was happening to me. It was severely disabling and was so bad it brought me to tears. I'm a 49 yo man.

 

Both feet and shins are affected regularly. It is extremely severe when it does hit me. I get several distinct individual pain types of sensations and pain severity degrees. Unfortunately, it's indiscriminate and affects me when I drive just as easily as when I walk. I used to have to pull over to the side to deal with it because it was so severe I instinctively grabbed it in an effort to alleviate whatever the problem was. I have since quit driving because I also cannot feel my feet against the pedals anymore either. This makes city driving a fairly dangerous proposition for me.

 

I call them 'pain events' for the purposes of communicating with doctors, etc. It's not like this affects me every moment, minute by minute, of every day, thank God!!! I don't think anyone could live through that. However, the number of events I have on a day has a dramatic effect on my ability to do things and that's the thing... That's what the meds have helped with mostly - the number of controlled events and numbing the more moderate level 5 events. Severity for me is still horrible - often a 10.

 

I do not go anywhere without at least carrying my folding cane - when/if I go anywhere. I just don't know when I will need it. Truth is, I don't go anywhere anymore and haven't for quite a while. I worry - worry about driving alone, afraid of falling, afraid of having an "unmanageable" pain event in a public place and/or being forced into an ambulance (which can happen) because someone who cared sees me go down and cared to call 911. I usually only go out now when my wife accompanies me right now, just to be sure.

 

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rawn takacs, Community Member
8/15/09 12:55pm

I am feeling your pain and have extensively for the last 2 years, I went through gabrapenton 3600 mg a day reliosly for 6 months, NOTHING, went trough all the anti depressants, NIGHTMARES and NOTHING, went throught all the other helping drugs and I ride a motorcycle and until I started injecting dilaudid I had not rode a bike in 2 years, I am right now in the Smokey Mountains from my home in Florida because I have found that the heat and humidity hurts much more! I have road my bike about 2000 miles since I have been up here for over a month and I still have some extreme days but if 1 shot doesn't work I do another, as far as the stigma( mainly because I am completely sleeved with tatoos) I am getting over it , its funny I have never cared my whole life really what people thought and now that I get the worst desease I start...funny??? I have had suiside thought for quite a while and every day is a new day, my thoughts that maybe one day there may be a cure for neuropathy and my family are what keep me going, I also hated the dilaudid pills but the shots are completely different, I know when I wake up within an hour the pain will back off, at first I got a little fuzzy once in a while but I get no high at all from the shots now, all my pain managment doctors have all told me there is no way they would take a chance with this script so I only see my GP and have thanked her from the bottom of my heart for the days of relief, \\ I wish you the best and I know from my side I hate to hear hang in there, but hang in there and hope you have some good days ahead.

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rawn takacs, Community Member
8/15/09 12:57pm

I also wanted to let you know the 2 things that did seem to help were Benfidomine and Alpha lopaic Acid, make vommit so I stopped but really did seem to help.

Rawn

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CoCowboy692000, Community Member
8/17/09 2:08am

Right now the Vicodin's have been a helpful suppliment to my pill regiment. I say that because so far, I don't believe that anything will eliminate the really severe pains I get.

 

The vic's and the rest of the meds take care of my moderate pains up to about a 5. Pain greater than say... a pain level of 5 or 6 I simply haven't perceived as being manageable (with the meds I have anyway). I simply can't walk or stand and especially drive with a severe event like that actively going on.

 

I'm curious: Over what period of time did this hit the rest of you? Was it gradual? Instant? Severe right from the start or did it build up over time?

 

I got hit with this instantly and severely, and ignorantly I might add. I had no clue what hit me...

 

Does anyone else get these same pains in their shins as well as their feet?

 

 

 

 

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rawn takacs, Community Member
8/17/09 2:28pm

With me my feet started about 5 years ago and were just sore so I didn't put on regular shoes , always wore uplifted sandels, then about 3 years ago I started getting horrible pain on and off and had emg's done found out I had neuropathy, the last 2 years have been a nightmare, many er visits, like I said went through the gammit of pills and still didn't sleep, actually sat around and cried out loud, not like me at all, weight gain didn't help from all the pills and no activity, feeling hopeless, sad all the time,I am sure you know what I mean. The shots have givin me a new start but even the dilaudid has its draw backs, it does not work as well as it did , the tolerance is building and trying to find a doc that will put a pump in with te amount of medicine I require, even my pain managment told me that in no way would they give me these self injections so I no longer see any pain managment docs. I was a very wild and full of life person, now I am a get by kind of guy with pain. Don't think the dilaudid is a bad drug but when I was on orals it was terrible, I never get "high" bit do get to walk, Good luck!!

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CoCowboy692000, Community Member
9/28/09 3:05pm

Just came from my doctor appointment this morning. I am now trying to find a pain management doctor now who supports the MI Medical Marihuana (their spelling, not mine) laws that took effect in April. I have been doing a lot of reading on neuropathy associated pills (including reading in forums such as this) and I don't want to try any new pills. I am also apprehensive about adding [quantity] to the one's I am taking. This may provide a practical alternative for me, given the chronic severe pain I endure. I am getting less time from my pain meds now which I discussed with my doctor and I continue to have the sleep issues. I figure I could do a lot worse.

 

Anyone know of participating doctors in the MMMA in SE MI? I have been looking, but I haven't found a formal 'list'.

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rawn takacs, Community Member
9/28/09 3:44pm

FOR ME I TRIED IT AND DID NOTHING FOR THE PAIN, HAVE HAD THE WORST WEEK OF MY LIFE, I WENT A DRY CLIMATE FOR 10 DAYS TO SEE IF THERE WOULD BE ANY CHANGE....NONE AND NOW THAT I AM BACK IT SEEMS TO HAVE GOT WORSE, I AM STAYING AT 7-9 AND HAS BEEN THERE FOR THE LAST 5 DAYS.....JUST GOING CRAZY!!

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Animal_928, Community Member
12/14/09 6:02am

My dad has the same pain, he used to take 600 methadone a month they seemed to work but then they cut him off cold turkey almost killing him, and then he had the oxy 30's those only worked for a few months. The last time he went to the doctor she gave him morphine 60's and now he cant go back there. Why are their doctors if they dont want to help!!!!!!

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CoCowboy692000, Community Member
12/14/09 12:21pm

Your dad got the shin pains? I had to do a lot of research. I did finally find references to the shin pains in my research. It is part of the neuropathy issues I face. There are 4 kinds of neuropathy by definition and I have 3 of them.

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Animal_928, Community Member
12/15/09 2:45am

it used to oly be his feet. He said its starting to go up his legs, and the doctors out here have misdiagnosed him. Every doctor he has been too act like they dont care. He cant even go too the er out here everyone that does gets to have a chat with cops afterwards!

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CoCowboy692000, Community Member
12/15/09 5:46am

Where is this and why would they have to talk to the cops?

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carysofi, Community Member
9/23/10 2:20pm

I HAD THE SAME PAIN IN MY FEET AND FELT COLD AND NUMB, AND HAD A LOT OF PAIN WHEN I SPOKE TO MY DOCTOR HE PRESCRIBED SOMETHING TO HELP IMPROVE MY CIRCULATION AND IT ACTUALLY WORKED...

SINCE WE TEND TO TRY AND FIND RELEIF EXPERIMENTING I DID SO BY RUBBING VICS ON MY FEET AND FOUND IT HELPED.

ALSO ARE YOU CONTROLLING YOUR DIABETES????

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CoCowboy692000, Community Member
9/24/10 7:13am

I've tried everything including drugs of every kind, vasaline, ice, and something else - I think capsasin (or something named simililar to that) which sent me to a fire hydrant for relief because it made the burning so much worse... That one I NEVER forgot (just forgot the name).

 

I have hand, foot and sexual neuropathy. All are painful although in varying degrees. My feet are the worst by a long shot. I also have progressed to a stage of loss of motor control in my feet. Therefore, I do not drive most of the time anymore. Actually my doctor restricted my driving because of it.

 

My diabetes is controlled as much as it ever is but I still get extremely wild swings. Fortunately at my last blood draw, my pancreas is still productive. My symptoms are ever present though regardless of my sugar levels.

 

But hey, I'm one of America's unemployed statistics now too and I have had to choose the most affordable meds from a list of 12 I was on for refills. So, obviously I don't take all of my meds anymore. I even tried calling one of those hotlines they have for prescriptions assistance. I hung up on them when the speech dialect was so heavy that it was not discernable to me. I'm doing without rather than dealing with that. My patience isn't up to that when I'm at a pain level 8-10 and I've gotten pretty mean. I certainly have far less relief than when I was on a full regiment... so, most days are pretty hard for me.

 

Very little sleep, pain levels which are next to intolerable... I cannot even tell you how many blue Ice Paks I've gone through because of the burning. I keep breaking the seals on them trying to get relief.

 

It is what it is... I was reading through the posts and realizing just how many years I've put up with this now... especially since I hadn't been online much. Thinking back on when this started for me, I'm guessing about 2004'ish when it started... But 07 is when it really elevated. Some days are better than others. I'm glad for those days... I actually get close to 8 hours of sleep during those days, which are far and few between. I got 2 hours sleep tonight but thankfully, it's nearly dosing time... sigh...

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CARIMONI, Community Member
7/14/10 1:58pm

I do not understand this, however I am suffering from severe pain from neuropathy and the only treatment that has helped me is EFT, I suggest you look into this.

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michelle, Community Member
1/ 1/11 9:37pm

what is Eft

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carysofi, Community Member
7/14/10 2:07pm

I HAVE BEEN SUFFERING FROM CHRONIC PAIN FROM DIABETES NEUROPATHY AND THE ONLY RELEIF I FOUND IS DOING EFT.

PLEASE LOOK INTO IT ITS GREAT.......

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CoCowboy692000, Community Member
9/23/10 12:39pm

I appreciate the replies from you all. I've been off of the board for a bit. I have found no relief. I continue to have severe pain levels greater than 6-7 most of each day. The terrible thing is that when I'm not in pain, I can't feel my feet at all.

 

Anyway, I am maxed on all of my meds. I do get some relief, but not enough to have a normal life at all. Meds make me tired, pain incapacitates me. I guess that's it - it doesn't get better. I did try the anadyne treatments for a while but had no lasting result. I've tried the medical pot, which helps a bit for severe attacks, but is limited in it's duration. All of the treatments seem to be pretty temporal.

 

I cannot sleep most of the time for more than a about 2-5 hours at a time without waking in extreme pain. So, this is kinda just how it is.

 

I wouldn't wish severe neuropathy on anyone... I hope others have better luck than I have... I feel like I've tried all of the remedies and given up pretty much. I'm on a cane all of the time now, and a walker or completely incapacitated on the really bad days. Some days are so bad I'm nearly in tears all day.

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carysofi, Community Member
9/28/10 9:38am

Hi CoCoboy, have sent you some of my findings on chronic pain and I came across this information on WebMed, they talk about chronic pain relief that sometimes it could be caused by lack of vitamin D and it seems to be very effective, also please go to www.tapintoeft.com, or free-eft-phone consultation.

I have found it has really helped me manage the pain.......

Keep in touch.

Cary

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CoCowboy692000, Community Member
9/29/10 3:43am

I've been on pharm and counter D. No dice... My case is not emotional baggage nor imagined for me. It is fully documented in EMG and NCS. EFT has no baring in my case.

 

Thanks for the thoughts on that just the same.

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carysofi, Community Member
9/28/10 9:42am

Hi CoCowboy.

I have been in contact with you in reference to finding relief for chronic pain.

I found a very good article on WebMed and they talked about Vitamin D being very effective for those who suffer from chronic pain.

Also please go to www.tapintoeft.com  and free-eft-phone consultation.

Keep in touch.

Regards

Cary

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carysofi, Community Member
9/29/10 12:21pm

Hi CoCowboy.

Iam really sorry that the vitamin D did not work for you either.

Beleive me you will be surprised that sometimes we have hidden core issues and emotional baggage that can cause all this physical pain, I am a witness to that.

My pain was real beleive me, it was not imagined.

Modern medicine is now starting to acknowledge that there is emotional component to physical pain, that up to now has not been addressed.

Once this emotional component is cleared the physical pain is often relieved or completely gone.

Physical treatments, if still required are then either permanent or longer lasting.

I really hope that you find the cause and very prompt relief soon.

 

I myself think that we should try what ever possible to resolve  the events that   disturber are quality of life. Good luck.  Regards Cary

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Debbie D, Community Member
11/25/11 3:34pm

This may not be possible for you, but I think you have to move and have to lose weight.

First thing I would do is get an anti-depressant to see if that will help with the chronic pain.  If first one doesn't work, try another.

 

Whether the antidepressant works or not, at the same time start moving.  I know you have chronic pain and say you can't walk.  But, even those with chronic pain, have to move (walk--or start with moving legs and arms while sitting).  I truly believe that if you don't get back to walking, you will lose your legs.

 

If you are over-weight, lose weight.  Just 10% of your weight gone and you will feel better.  I look at getting healthy as a life journey where I get a little healthier every day to feel better and have MORE ENERGY. 

 

I am so sorry you are suffering, but please move and eat breakfast.  I can change a little bit at a time, but that's it.  Try little changes.  3 per day for a week and then make them a habit or ritual and do 3 more...  If I can be of more help to you--email me at dcdeland@att.net

 

Debbie D

Orlando, FL

 

 

 

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By CoCowboy692000, Community Member— Last Modified: 11/25/11, First Published: 07/06/09