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Old 08-18-2010, 07:00 PM   #1
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Unhappy neuropathy - trouble walking and standing - please help

I can't seem to walk anymore and can't stand for any length of time - in ADDITION to burning, painful feet and legs. I'm getting really scared - I can't even shop for groceries anymore.

Does anyone else have the same problem?

Any advice or info VERY APPRECIATED!!!!

Thanks

 
Old 08-19-2010, 05:19 AM   #2
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Pebble Beach HB User
Re: neuropathy - trouble walking and standing - please help

What type of neuropathy do you have? Is it spinal or diabetic? What tests have you had done? EMG?
What type of doctor are you seeing? Can you give us more information. What do the doctors tell you on the cause? What about treatment prescribed by the doctors?
I have spinal neuropathy and have numbness in my left leg, pin and needle feelings in my foot, difficulty walking any great distances.

 
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Old 08-19-2010, 01:03 PM   #3
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Re: neuropathy - trouble walking and standing - please help

Hi Pebble Beach,

Thank you for the reply. I have diabetic neuropathy for roughly seven years, but it's been getting progressively worse. Right now I see a rheumatologist, an endocrinologist (diabetes), and had a regular family dr who I stopped seeing a few months ago.

I recently started taking gabapentin 100mg 3x a day, and it seems to be doing something - sort of dulls the pain. I also take pain medication, oxcodone 10mg, plus my insulin, BP med & Plavix & Vitorin.

I have been on EVERYTHING over the years. Every combination pain/anti-depressant, zanaflex, muscle relaxers, duragesic patches, Lyrica, nortriptyline - really just too much too list. Most do absolutely NOTHING except to worsen the situation with side effects.

I have never gotten any actual treatment for the CAUSE, and I have never seen a doctor, ever, who has told me that there was anything that could be done other than pain management.

I don't know what to do. I've missed birthdays, graduations, virtually all family functions. I feel like I've been in a jail cell that is getting smaller. I am in pain every day, and the doctors just don't seem to grasp the extent of it, or they just don't care.

I am very afraid about losing my ability to walk/stand for any length of time. When I've told my doctors about this, I never get a concrete answer beyond try this or that medication, or to use a walker.

Thanks for ANY INSIGHT.

Also - to anyone who might be in the same boat who views this to see the replies, please feel free to just tell me what's going on with you. It's helpful just to know that I am not the only one, because family and friends just dont seem to understand.

Pebble Beach, THANK YOU for taking the time to respond

 
Old 08-19-2010, 01:07 PM   #4
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Re: neuropathy - trouble walking and standing - please help

Sorry - as far as tests - I've had a doppler, numerous MRI's, an electrical(?) test, tons of blood work - I don't know what an EMG is. I've also had standard heart tests (I need a bypass).

Thank you

 
Old 08-19-2010, 01:21 PM   #5
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Re: neuropathy - trouble walking and standing - please help

snickers:

I am diabetic too. When I was diagnosed with diabetes in 2003 my blood sugar was over 1500. Yes 1500 thats not a typo.
After that I had problems with my leg. Numbness, pins and needles in the foot type of feeling. Trouble walking any distances. I used to walk a lot.
But I also had spine problems --- 6 surgeries. so the question was to determiine of the leg problems were due to the spine or the diabetes. An EMG was done. It is a test that checks the nerves in the spine/legs to deterine the cause. In my case the problem was due to the spine not the diabetes. I have tried physical therapy to relieve the problem.
I quickly googles a diabetic neuropathy. If I read the article correctly one thing was to keep your blood sugars unter control. How is your blood sugar? Is it well maintained. What is your A1C readsing - your 3 month blood sugar averages.
If the problem is progressing please speak to your endocrinologist and voice your concern. Are you sure the problem you are having is due to the diabetes? See what your doctor says as to what if anything can be done to alleviate the symptoms or trying to keep it under better control.
Keep us posted on how you are doing.

 
Old 08-19-2010, 01:47 PM   #6
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Re: neuropathy - trouble walking and standing - please help

Thats funny - well, funny is the wrong word - but my sugar was super high too when I was diagnosed. I thought I was the highest at 1000, and it was roughly the same year as your diagnoses.

My sugars are pretty much under control, my last AIC was slightly high but the rest have been on target (I think the last was 6.3?). Oddly, I feel slightly better when my sugar is a little bit high - daily test, not over all. I take 9units of fast acting insulin and 17units slow acting.

The strange thing is, after seeing the same rheumatologist for 15 yrs (initially for fibromyalgia), he told me on my last visit that part of my issue might be sciatica, or coming from my back, because the pain in my left leg goes higher, I can't sleep on that side either.

My son-in-law has been trying to get me to see his chiropractor. He was supposed to have back surgery, has seen dozens of neurologists and orthopedists, and this chiropractor is the first person who's given him any relief.

I'm afraid to see one though in case he makes something worse. Fibromyalgia peaks and falls; I really feel rotten when both are acting up (fibro & neuropathy)

I've had physical therapy, but for fibromyalgia, not neuropathy. Is/did the physical therapy help you? Physical therapy didn't seem to help me, but to be honest I didn't continue it long term.

Thanks again for your reply & info on your situation. I hope things improve for you -

Bonnie

 
Old 08-19-2010, 02:09 PM   #7
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Re: neuropathy - trouble walking and standing - please help

Snicker,
You are not the only one. I have neuropathy in my feet. I am not diabetic and it is not because of my back.

I started seeing a neurologist about a year ago to determine the cause of my neuropathy and I think I threw the poor doctor for a loop, but he stuck by me. He saw how red and purple my feet got. He saw the pain on my face when he touched my feet.
He saw how difficult it could be for me to walk. He listened to my other symptoms without treating me like I was crazy. He ordered Mris, cat scans, and even a pet scan which scared me. When those came back normal. He ordered lots and lots of blood test and a twenty four hour urine test. I would go back to him for a follow up and he would order more and more blood tests. I got to know the folks at the lab on a first name basis. They all knew me there. There was a method to his ordering all the blood work, he was looking at my vitamin and mineral levels. What he saw was that with each test I was consistently on the very low end of the acceptable rates for Vitamin b1 (thiamine) and vitamin d. These were the only two vitamins my body seemed to be low on.

He suggested that I try taking these two vitamins sublingualy. The military facility I go to does not carry them in the pharmacy but he told me I could probably find them at a health food store. He said it was a stab in the dark for him to suggest it but it couldn't hurt. Well, it didn't hurt within a very short time of me disolving the sublingual thiamine my feet eased up a little. I was dancing on clouds and my husband had to tell me to slow down. My feet weren't 100 percent, I would say about 30 percent better than they have felt in a long time. I have kept up with the vitamin regimen and I can say I have many more good days than bad now. But now it is more managable for me. On bad days I soak my feet in ice water and then soak them in warm water. I do add some mint, lavendar or other herbs from my garden to make it a more pleasant experience.

My husbands gives me a nightly foot massage (something He couldn't do before, because it either hurt too bad or was an unpleasant experience) This seems to help get the circulation going.

I am in the process of weaning of the gabapentin my neurologist first prescribed. I am down to 500 mg 3 times a day. I was up to 800 mg three times a day. Tomorrow I am dropping it down to 400 mg three times a day. I am weaning myself slowly from this drug because I have heard too many stories of folks who have had bad experiences when just stopping the drug or weaning off of it too fast.

I also go to an acupuncturist. I know it sounds weird but on the first visit I actually felt nerve activity in my feet. I cannot afford to go there a lot but it does help. After my second visit to him I was driving home and kicked off my sandals. I didn't have to put on the socks and slippers I kept in the car I was able to drive barefoot something else I haven't been able to do in a while.

Do not give up, do not say that the doctors tell me that the only way of dealing with it is pain management. Research, find what works for you. It took a lot of time and an understanding doctor but I found what works for the time being and if it get worse I will find what works for that moment in time.

Best of everything to you Snickers, you deserve it I know the pain and suffering you are going through. You are not the only one.

 
Old 08-19-2010, 03:13 PM   #8
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Re: neuropathy - trouble walking and standing - please help

Hi, watch out for the low sugars as they can damage the nerves as much as the high sugars can.

All peripheral nerves have the ability to regenerate when in the right enviroment, meaning whatever was causing the damage has stopped asaulting them, providing the cells are not dead, but even so they have been known to re sprout again but grow slightly differant than the originol, nerves are terribly slow growing can take months to years depending on how much damage there is.

Many diabetics with neuropathy have found some relief taking these supplements, alpha lipoic acid 600 mg daily or L- lipoic acid 100 mg, GLA - Gamma Linolenic Acid at 480 mg daily, gla is found in evening primrose oil.
It can take some time before benefits are shown, varies in differant cases, some find ease in a matter of weeks and others longer.

Vitamin B is essential for nerves, I would take a multi B every day plus 1-5 mg of b12 in the form of methylcobalamin [ the active form ]
Also B1 [thiamine] 100 mg x 3 times daily.

I am a former neuropathy sufferer, caused by blood sugars and low in B12, the above really helped mine.

good luck
Aussie

 
Old 08-20-2010, 02:06 AM   #9
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Unhappy Re: neuropathy - trouble walking and standing - please help

Hi snickers,
My father also tells the same ...."you don't understand the pain"..really..i feel terrible when i see my father suffering from this pianful misery. He too complains the same and nothing seems to be helping him. He underwent all sorts of tests...at first doctors were speechless and later told its neuropathy. He also tried traditional/ herbal medication apart from what doctors prescribed which helped only short time. Its kind of reversal complication. In my knowledge, Vit B12, Vit B6 and Vit B1 lessen the outcome to an extent. So, i am giving him in diet and tablet form. Its helping him a bit. I was thinking its a rare case which is happening to my father but after i joined here...i came to know that there are many others who is experiencing the same!

Last edited by rimaboruah; 08-20-2010 at 02:17 AM.

 
Old 08-20-2010, 04:09 PM   #10
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Re: neuropathy - trouble walking and standing - please help

I have the same problem with my legs and feet with weakness and chronic pain. The Dr. tells me they think its c.i.d.p. but are not sure. I got this when I was 46 and now I'm 53 with my legs and feet getting worse every year. I hardly ever leave the house.

 
Old 08-22-2010, 08:50 PM   #11
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Re: neuropathy - trouble walking and standing - please help

I had cervical surgery in Jan 07. I developed neuropathy later that summer, as diagnosed by a neurologist at Mayo Clinic. She said that while my body was acting like peripheral neuropathy, it should not have been due to my nerve damage was part of the central nervous system. We went ahead and started treating for neuropathy anyway.

At this point, I take 2400 mg of Neurontin. Can't take it during the day, as it makes me way too dizzy, so I take it all in the evening.

I'm finding that my symptoms are progressing. My feet burn 24/7. My right leg (which an EMG showed there was an interruption in signal there) is going numb virtually all the time. It pulsates and vibrates, and it hurts so much. I went ahead and purchased a cane, as I am becoming more and more insecure about walking on it. I don't do much walking anymore period. I have a handicap parking placard, thank goodness.

I'm headed to a back and neck rehab center. I had an x-ray of my neck in May, but now I'm wondering about my lower back too, as it has been pretty painful as of late. I had MRIs of my whole back a number of years ago, and I think it's time to take another look.

I have been diagnosed with fibromyalgia (a year after my neck surgery), DDD, neuropathy, atypical migraines, and a host of other "gifts" that seem to have popped up since my neck surgery and/or fibromyalgia came to visit.

I don't really have anything else to offer...just sharing my own experience.

Take care.

 
Old 08-25-2010, 04:38 PM   #12
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Re: neuropathy - trouble walking and standing - please help

Agree with Aussie and many people in here.

I didn't catch what your main issue is for walking and standing, if it's pain, or weakness in your legs, because one is caused by small fibers(sensorial) and the other by long ones(motor).

First of all you have take control of your sugar levels, which seem to be the main cause of your problems. Once you get on top of this, then you can begin to recover, otherwise nerves could be still having damage, and if it's the case, there's not much that any medication can do about it.

In my own experience, both with this and with vestibular(inner ear) issues, nerve recovery takes some time, even in the range of months or years. And sometimes this recovery is incomplete.

On top of this, nerve recovery is often non linear, meaning that it's a one step forward two steps back process, where it's hard to know if your'e really having a relapse or a new episode, or it's just part of the original "attack". For example , my last NCV test showed better response from my nerves, which on my doctor's words are a sign of nerve regeneration, but somedays I feel worse than before.

Finally, if you consider that many of the medication used to treat neuropathic issues, like Gabapentin(as an example), can give you any sorts of weird side effects, it's really an epic quest to find out what is really happening, even for the doctors.

On the bright side, there are many studies that proof that Alpha Lipoic Acid and other supplements that Aussie mentioned, can really help people with diabetic neuropathy. These are now under test for CDIP(another kind of neuropathy), so you could try them.

I bet that the "electrical tests" that you mentioned are an EMG/NCV tests, they measure nerve function, specifically in large fibers(motor).

Try to stay as active as you can, even as I know that we all want to stay in bed and sleep this thing over, because prolonged inactivity often leads to weaker and atrophied muscles.

I'm forcing myself to start a daily workout that right now leaves me exhausted, so I'm trying to balance this in order to keep on going without feeling like I ran a marathon every day.

With all your studies it's hard to think of something else causing your problems so, I hope you can keep your sugar issues under control as the first big step to get better.

Best-

 
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