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Old 01-14-2013, 11:42 AM   #1
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Unhappy Sick of Suffering- peripheral neuropathy pain

For the last year and a half or so i have been experiencing worsening pain in my feet and legs. It started with numbness and tingling in my toes and feet combined with hyper sensitivity on the tops and bottoms of my feet. Putting socks on was enough to put me through the roof. Sheets rubbing against them is terribly painful. It gradually worsened to the point that i was unable to sleep at night. Nothing seemed to help. I dont have insurance so i wasnt able to treat or find the cause of the pain. I attributed the pain to my ankles being sprained continually in my younger days. In my teens thru my latter twenties i played alot of sports. Being young and bullet proof i didnt think i needed to wait the 6-8 weeks the Dr gave me to heal and would be back on the court 2-3 weeks after spraining an ankle. I did this probably 8-10 times per ankle(maybe more).
Presently i am experiencing the aforementioned along with horrible aching in my knees calves and thighs. At the same time im experiencing a terrible burning pain from my thighs into my feet. The worst being in my feet and knees. The best way i can describe the current foot pain is imagine your feet being shocked continually with low voltage. Burned from the inside out with a hot iron and so sensitive a feather touching them makes me want to scream.
On top of all this i have been having severe nausea/weight loss for about a year(lost 40lbs).
So i finally went to my mothers Dr and he diagnosed me with irritable bowel syndrome and peripheral neuropathy in my feet and legs. He prescribed two medications. One of which i assumed would be for the pain(the only real reason i went to see him after all). Sadly they were both for the ibs. I was in so much pain during the appt it completely slipped my mind that i should have to ASK for pain medication. Common sense and all that jazz...
I had an emg done the friday before xmas. Again assumed i would hear from my new Dr and prescribed something for the pain, silly me. Two weeks after the emg and many nights of suffering later i call my Dr. After five calls and the office closing, nothing. The next day after calling twice im finally prescribed neurontin for the nerve damage in my feet/legs. The neurontin helps the shocking pain but doesnt touch the burning aching pain. So relief continues to elude me.
At this point im done with this Dr. I now have an appointment on Feb.8th to see a new Dr. Ive also got an appt on march 14th to see a neurologist.
If youve stuck with me through all of that i applaud your patience. So to wrap up the novel. I need advice. What can i do to cope with this god awful pain? Im using compression socks and elevating my feet as often as possible which helps. When the pain is unbearable my cousin is kind enough to give me a few percocet. Which i despise but they at least take the pain away. Nothing like feeling like your on a emotional roller coaster in order to be pain free.
Any and all advise is greatly appreciated.

 
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Old 01-15-2013, 01:36 PM   #2
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Re: Sick of Suffering- peripheral neuropathy pain

Sorry to hear your story but I know it well as do most on this site. As for advice, the neurologists is the right next move from you and depending on what they say you may want to consider finding a good pain mgt. specialist who understands your type of pain. All other doctors are usually reluctant to prescribe any pain meds, for a variety of reasons. That would be my best advice for you, I hope you're able to get some relief very soon, best of luck going forward and please feel free to ask anything on here, 99% of the folks on here are very helpful and knowledgeable.

 
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toledomax (01-16-2013)
Old 01-15-2013, 09:41 PM   #3
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Re: Sick of Suffering- peripheral neuropathy pain

Quote:
Originally Posted by toledomax View Post
For the last year and a half or so i have been experiencing worsening pain in my feet and legs. It started with numbness and tingling in my toes and feet combined with hyper sensitivity on the tops and bottoms of my feet. Putting socks on was enough to put me through the roof. Sheets rubbing against them is terribly painful. It gradually worsened to the point that i was unable to sleep at night. Nothing seemed to help. I dont have insurance so i wasnt able to treat or find the cause of the pain. I attributed the pain to my ankles being sprained continually in my younger days. In my teens thru my latter twenties i played alot of sports. Being young and bullet proof i didnt think i needed to wait the 6-8 weeks the Dr gave me to heal and would be back on the court 2-3 weeks after spraining an ankle. I did this probably 8-10 times per ankle(maybe more).
Presently i am experiencing the aforementioned along with horrible aching in my knees calves and thighs. At the same time im experiencing a terrible burning pain from my thighs into my feet. The worst being in my feet and knees. The best way i can describe the current foot pain is imagine your feet being shocked continually with low voltage. Burned from the inside out with a hot iron and so sensitive a feather touching them makes me want to scream.
On top of all this i have been having severe nausea/weight loss for about a year(lost 40lbs).
So i finally went to my mothers Dr and he diagnosed me with irritable bowel syndrome and peripheral neuropathy in my feet and legs. He prescribed two medications. One of which i assumed would be for the pain(the only real reason i went to see him after all). Sadly they were both for the ibs. I was in so much pain during the appt it completely slipped my mind that i should have to ASK for pain medication. Common sense and all that jazz...
I had an emg done the friday before xmas. Again assumed i would hear from my new Dr and prescribed something for the pain, silly me. Two weeks after the emg and many nights of suffering later i call my Dr. After five calls and the office closing, nothing. The next day after calling twice im finally prescribed neurontin for the nerve damage in my feet/legs. The neurontin helps the shocking pain but doesnt touch the burning aching pain. So relief continues to elude me.
At this point im done with this Dr. I now have an appointment on Feb.8th to see a new Dr. Ive also got an appt on march 14th to see a neurologist.
If youve stuck with me through all of that i applaud your patience. So to wrap up the novel. I need advice. What can i do to cope with this god awful pain? Im using compression socks and elevating my feet as often as possible which helps. When the pain is unbearable my cousin is kind enough to give me a few percocet. Which i despise but they at least take the pain away. Nothing like feeling like your on a emotional roller coaster in order to be pain free.
Any and all advise is greatly appreciated.
I agree, you are finally on the right track on seeing a neurologist. For your burning pain, as I learned here, go out and purchase R-alpha Lipoic Acid and take 100 mg a day. It takes three weeks to get into your system but it will help the burning pain you describe. It won't take it away completely but it does help it immensely.

Also, be your best advocate and get online and read all the information on PN and nerve damage. At least you can learn what causes it and learn what other tests that may need to be performed to get a definite answer.

I am a little confused on not getting your EMG test immediately. What type of doctor ran the test? My neurologist ran this test along with a nerve conductor test and gave me the results as I was sitting there.

You can also go through the posts here and see how many people here experience similiar pain that you describe and their dx what caused it.

 
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toledomax (01-16-2013)
Old 01-15-2013, 11:14 PM   #4
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Re: Sick of Suffering- peripheral neuropathy pain

Wish I could give you some good news, but, I am in the same boat as you. I can only encourage you to be thankful for each day, and learn to live above the pain as best you can. Some days it is unbearable and hard to rise above the pain and suffering, but for the most part, I do get my head above water, and that is a positive thing.

I know that I tell myself that I am not going to let this thing beat me. If I am going to die, it will be in my time and in my way, not due to the pain and this disease.

Hang in their Vegas. And remember you have friends here on the link!

 
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Old 01-16-2013, 03:43 AM   #5
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Re: Sick of Suffering- peripheral neuropathy pain

Thank you for the words of encouragement everyone i think i was venting more than anything after re-reading my post.
I will give the R-alpha Lipoic Acid a try and keep my fingers crossed ty for that. Im not sure what type of Dr ran the emg tbh LasVegasgirl. Again i was in so much pain during the test i just wanted to get out of there and try to find some relief. I was given the impression that it was more to exclude a slipped disc or nerve damage in my lower back than anything? I have tried to do as much reading as possible in regards to PN and understanding it. I have read that vitamin deficiencies can also be a common cause along with diabetes.
airskypony i appreciate your advice and i do try to make the best of everyday but it sure can be difficult. Im learning to cope with it a little better as time goes on. Im finding that pain has a sneaky way of changing your personality without your knowing it.
captinsane1 im new to having to take medications of any kind so this is a pretty big learning curve for me in regards to the way Drs view patients and prescribe pain medication. I just assumed there would be a medication they would prescribe like they would for a headache or nausea and all would be right in the world again. Apparently i couldnt have been more wrong. After much reading i understand how drug abuse has turned most Drs into extreme pessimists with virtually anyone in pain. Particularly with people that dont have obvious injuries. Being that i havent seen a Dr in 7 or 8 years makes it even worse.
Since my first post i was able to contact a friend of the family that is in medical school. He said that the first thing the Dr should have done was have blood tests run to eliminate the most common causes of PN. But because im uninsured he likely didnt order them for fear of my not paying. So he simply prescribed meds for the IBS and ignored the PN pain until the EMG was done.
Well i guess volume 2 is completed. Again i appreciate your advice and encouragement. I hope you all find some relief.

 
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Old 01-17-2013, 10:30 AM   #6
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Re: Sick of Suffering- peripheral neuropathy pain

My neuropathy is from diabetes. I was diagnosed with diabetes about 6 months after the pain started in both my feet. I have been on gabapentin (neurontin) for over a year now. It does help you just have to get up to a dose that works for you. Currently I am on 900mg 3 times a day and could probably use it 4 times a day. You push thru the pain during the day but it is at night when it really gets to you. That is when I sometimes take an extra dose. I am told they must gradually increase the dosage and if you ever come off it - you come off the same way.
I was told that a deficiency in B12 can cause this too. I had mine checked and it was low. I have been on B-12 injections, which I give myself, and my B-12 is back in the normal range but it did noting for the pain in my feet. I take injections because I was told at my age it will not be absorbed thru the digestive system. Read up on that and low B12 can cause all kinds of problems so I continue on the injections.
Dr. tried a nerve block to my left foot only. He explained it this way - for some patients he could do this a couple of times a year and they would be fine. He said think of it like rebooting a computer. Again for my after block wore off back came the pain.
I have tried the ALA and the ALC it seems to do nothing. I have tried the tens machine - have one now and it works while you are using it but does not fix the problem (nerve damage). I tried light therapy again works while you use it but pain comes back after it stops. Did that 3 times a week for 7 weeks. There is so much stuff out there that I believe is a rip off. Want a $40 pair of socks that is suppose to stop the pain. The write up said 'thank god I found this' and I as able to stop the 100mg of gabapentin I was taking a day. Have seen this quote many places and I just do not buy it any more.
My next thing I will try is acupuncture. Will keep you posted if that works.
Gabapentin calms the nerves and can be taken over long periods of time. Pain medicine you cannot take for long or you become addicted. I had some minor surgery a few months ago and was given a few vicodin. Don't know about the pain at the surgey site but it sure did help my feet. Wish you well.

Last edited by nicelady; 01-17-2013 at 10:46 AM. Reason: added and corrected spelling

 
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Old 01-17-2013, 02:49 PM   #7
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Re: Sick of Suffering- peripheral neuropathy pain

Much appreciated Luckylady. Very useful information. I also heard that a b12 deficiency can be a cause as well. I will have to see if my pharmacist can suggest a proper dosage for me to start out on. At this point im ready to try just about anything.

 
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Old 01-19-2013, 02:47 AM   #8
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Lightbulb Re: Sick of Suffering- peripheral neuropathy pain

I hope you have been able to see the neurologist by now, that your new PCP or specialist has ordered labs. If you are still waiting to see your docs, may i suggest looking around your town for a health fair. There you can have a basic lab done to r/o diabetes and it's free. Starting sublingual B12 is also a safe thing to do and your pharmacist can help guide you re: the daily dosage. Once you see the docs, consider asking for lab to evaluate B12 level. I also take neurontin and the dosage can be increased a lot to achieve pain relief. I don't recall if you mentioned that you smoked or if your alcohol consumption was excessive. These two habits can really aggravate the pain.
I know from my own experience with PHN (PN from years of herpes outbreaks) that it can be a long, frustrating battle. The good news? You are on the best path by seeing a specialist and educating yourself.

 
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Old 01-23-2013, 09:33 PM   #9
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Re: Sick of Suffering- peripheral neuropathy pain

Quote:
Originally Posted by toledomax View Post
For the last year and a half or so i have been experiencing worsening pain in my feet and legs. It started with numbness and tingling in my toes and feet combined with hyper sensitivity on the tops and bottoms of my feet. Putting socks on was enough to put me through the roof. Sheets rubbing against them is terribly painful. It gradually worsened to the point that i was unable to sleep at night. Nothing seemed to help. I dont have insurance so i wasnt able to treat or find the cause of the pain. I attributed the pain to my ankles being sprained continually in my younger days. In my teens thru my latter twenties i played alot of sports. Being young and bullet proof i didnt think i needed to wait the 6-8 weeks the Dr gave me to heal and would be back on the court 2-3 weeks after spraining an ankle. I did this probably 8-10 times per ankle(maybe more).
Presently i am experiencing the aforementioned along with horrible aching in my knees calves and thighs. At the same time im experiencing a terrible burning pain from my thighs into my feet. The worst being in my feet and knees. The best way i can describe the current foot pain is imagine your feet being shocked continually with low voltage. Burned from the inside out with a hot iron and so sensitive a feather touching them makes me want to scream.
On top of all this i have been having severe nausea/weight loss for about a year(lost 40lbs).
So i finally went to my mothers Dr and he diagnosed me with irritable bowel syndrome and peripheral neuropathy in my feet and legs. He prescribed two medications. One of which i assumed would be for the pain(the only real reason i went to see him after all). Sadly they were both for the ibs. I was in so much pain during the appt it completely slipped my mind that i should have to ASK for pain medication. Common sense and all that jazz...
I had an emg done the friday before xmas. Again assumed i would hear from my new Dr and prescribed something for the pain, silly me. Two weeks after the emg and many nights of suffering later i call my Dr. After five calls and the office closing, nothing. The next day after calling twice im finally prescribed neurontin for the nerve damage in my feet/legs. The neurontin helps the shocking pain but doesnt touch the burning aching pain. So relief continues to elude me.
At this point im done with this Dr. I now have an appointment on Feb.8th to see a new Dr. Ive also got an appt on march 14th to see a neurologist.
If youve stuck with me through all of that i applaud your patience. So to wrap up the novel. I need advice. What can i do to cope with this god awful pain? Im using compression socks and elevating my feet as often as possible which helps. When the pain is unbearable my cousin is kind enough to give me a few percocet. Which i despise but they at least take the pain away. Nothing like feeling like your on a emotional roller coaster in order to be pain free.
Any and all advise is greatly appreciated.
I have read on a few other forums that people who have the burning type pain take Alka Seltzer. It has something to do with blood becoming more alkaline rather than acidic and the buffer coats the nerve endings. Also it has aspirin and if your neuropathy has an inflammatory component to it , it would help.

Last edited by Teacupforme; 01-23-2013 at 09:37 PM.

 
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