PERIFERAL NEUROPATHY

hi, my name is Eddie and I suffer from peripheral neuropathy for nearly 3 years. It is slowly ruining my life from the disability of the pain. I can't find a cure or real relief.

Does anyone have any advice for me ? I do take gabapentin 2 each 600mg 4x daily and oxycodone 30mg 8x daily. It helps. The pain started in my feet then my legs. No it is in my arms and my hands. I now have carpool tunnel syndrome in both hands(very painful)

and having surgery in December. Life has not been easy these last 3 years. Please help.

EDDIE G.

31 Replies

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  • Hi Eddie.

    Do u know the CAUSE of the neuropathy ??

    Some get it from diabetes.

    Diabetes causes damage to your kidneys. Which can cause secondary illness/ injury to your extremities.

    I also have PN ( peripheral neuropathy. )

    There is so much more I can tell you, but it would be helpful to know if you have any other conditions , like auto immune issues. PN IS very common then.

    Or liver issues. GABAPENTIN

    Didn't work for me either. Or cymbalta or lyica.

    Some people say their extremities burn ( arm legs hands feet) or they feel like ice cold.

    Mine also started in my feet.

    For me I felt as though I was stand in a snow fed lake or river.

    The cold was thru to the bone.

    I used to Tell my dr. that it felt as thought my bone marrow was being sucked out and replaced with ice water. So painful.

    Plus I worked. Was funny , before I knew I had PN, when I would leave wirk and it was nice outside the pain in my hands and feet would subside a bit. Such relief. Even that little bit helped my mood. Then I go back into work and the pain and anxiety and stress would start up all over again.

    Now I know, that weather below 70 deg. Can make the PN get worse. Has to do with proteins in your blood.

    The women I worked with WOUKD CRANK up the air conditioner. The colder air made me HURT even WORSE.

    A secondary disease to PN IS called..... Get ready....

    CRYOGLOBULINEMIA LOL.

    CRO-GLOB-ULI -NEMIA.

    actually means

    COLD BLOOD.

    crying means cold globulin mean blood. Interesting huh?

    Anyway tell more about your health issues what else you've got and I'll tell what else to look up.

    I'm not selling anything. Not trying to be evasive.

    There's just several things that can cause PN or CRYO.

    Oh another thing , exposure to toxic chemicals can cause it too.

    Certain chemicals spilled or working with chemicals unsafely.

    Or pesticides herbicides.

    Hope this info help or gives you starting place.

    I've had it for years. It can be miserable.

    The winter months especially.

    In live in Seattle area. Winter her are long cold and can be painful.

    Take care

    Sharon.

  • shar57 you know the first real cold here where I live in Sonoma Ca. and I noticed my PN got worse. Also at nite it seems to be worse. It's never good, it's either bad or worse. Red hot feet with a thousand burning pins, and gets worse.It also effects me behind by knees somehow. Making my muscles tight

    and hard to walk or even bend um. Huh. Take my gab 2 ea. 600mg 3x & my oxycodone 30mg when I need um and life marches on. I don't know how you can take the Seattle weather, the cold wet weather is the worst.

  • Hi Eddie

    Sharon again

    Who told you that you have carpel tunnel syndrome.

    I've met and talked to MANY people with PN or CRYO, that were misdiagnosed with carpel tunnel.

    If you havnt get a 2 Nd opinion on that. It won't help the PN.

    We can talk more on that also

    I've never found any vitamins or herbs or anyone over the counter drug that makes the PN go away or the pain. So don't get caught up in those foolish treatments.

    Looks like your doing the best that you can euth the medication your taking.

    PN IS THE WORST.

    IT HAS CHANGED MY LIFE DRASTICALLY.

    I used to be super active. Go anyway do anything athlete.

    Nope. Not anymore.

    take care.

  • shar57 Just getting back to you about my carpool tunnel operation. Dec. 10th was my surgery and today the 30th it still feels weak. The numbness and the pain in my shoulder so far is gone. I've tried to do some work but it is very difficult being left handed & the operation in the same hand. I guess I got to give it more time to heal, but there is so much work around the house to be done and not having money to hire someone to do it for me. My PN is getting worse. Not knowing if it is the winter or it's just the way the illiness works. The pain in back of both my knees is unbearable and add that to my arthritus in both, I can sometimes not be able to walk. I have other problems

    throughout by poor old body (67 in next Apr.) after 40yrs + of work, but life marches on and there is work to be done. Hoping life is better for you and may 2016 be better for you and to all that suffers from pain, physical or mental. LOVE AND PEACE Eddie G.

  • Dear Eddie, I hear you. I too have this terrible syndrome or disease. It is very very painful and I'm going to follow your post and as soon as I get the name of this newest medication that is targeted to the nerve not only at the top but also the lower branch of nerves. They were suppose to give it to me at the clinic but she forgot. But I need to go back again this week so I'll see if I can get it. Night time is the worst or rather early hours like 4-6 AM. Is it for you also? I just have to get up which takes awhile then just slowly try to walk it out otherwise I can't take the pain. I was writing in another place but hit the wrong key and boom I was in Never land haha but found my way back. My Peripheral neuropathy is secondary to Systemic Lupus, , PAD and Liver and Kidney problems My last (actually the one before the last one) Ana had a positive result with a titer of over 1200. Now a year later a doctor orders all the test and they come back neg. (first Neg since 1987) and this Dr. says I don't have Lupus, it was my Liver that is making me sick. So I go through 12 weeks of intense therapy With weekly blood draws to check my kidneys and anemia. I was glad to be done with that, but not actually feeling better like I was promised. I still think there was some kind of mix up at the lab.. who knows and I've heard that the test can come back neg after being positive. I just don't know what he is going to do. I also have fibromyalgia since 1993. I will try to follow these posts and give updates. Oh and to Eddie, I don't understand why your Dr. doesn't have you on a long acting pain medication that keeps the medicine in you for either 12 hours and three days. Then the oxycodone 30 mg could be dropped down some as it's just used for break through pain. A good long acting would be oxymorphone 15mg or 20mg twice a day or either a Fentanyl Patch would help a lot more.

    Take care, Vivian

  • hi Aviva

    I'm sorry hear of your situation. I know that fibromyalgia is a problem that like mine just ruins your life, especially if your outgoing. Pain has a way of just of interfearing with everything you do. Pain is the first though that enters the mind. It's so debilitating. I'll ask my about the

    oxymorphone / fentanyl patch, she good about pain meds. Did you get the name of the other medication for

    the feet instead of gabapentin ? I'd love to find a different drug cas gabapentin does real work that well.

    Please let me know. IOf there is anything I can help you with let me know. Eddie

    .

  • Well I thought I was going to be going back to the clinic before now, because the Dr. actually got my scripts wrong. My actual appointment is the 11th of December unless they can get the message through to the Dr. about the mix up on the scripts. They called me today and said that my two messages had not reached the nurses desk. I hope them get me in before the 11th but I'll be sure to get the information about this new medication. It seems like the narcotics would help it, but it just seems like the pain is too intense. I told my husband when it really hits hard it the closest pain to childbirth there is..but even that comes and goes. thanks for your reply. Avivia

  • I had some numbness in left leg and was prescribed gabapentin

    THIS MADE THINGS MUCH WORSE

    Anticonvulsants can cause PN and I am now getting it as a side effect of PHENYTOIN

    Just to say do not persevere with a drug unless it helps and not just because

    DR says so

  • Royc,

    I left you a reply, don't know where it went. Like to know where you got the info about gababentin causing PN ? I've developing weakness in both legs and I'm using 2 each 600mg x 3 daily. As of Nov. 23rd I've switched to Cymbalta 30mg once a day. I will let everyone know if there is a change.

    Eddie

  • I do not say that gabapentin can cause PN but be careful!!

    My history is that I went to Dr with very mild PN about 8 yrs ago and he immediately stopped me from driving and put me on Gabapentin because of a very ancient epileptic seizure. The PN worsened and specialist at John Radcliffe Hosp increased dose. Things still got worse and only after 18 months did a bright new registrar at JR notice that Gabapentin was exacerbating the problem. I stopped the drug and PN subsided.

    At the moment I am taking phenytoin and exactly the same thing is happening.

  • royc.

    I'm very interested where you found out about gabapentin causing PN ? I've had a reply saying that gabapentin caused that a person to have a crippling effect on their legs. I'm experiencing extreme weakness in both legs. As of yesterday 11/23/2015 I started using Cymbalta 30 mg once a day. I'll let you know if the weakness goes away.

    Eddie

  • hi, I have just had the tests for peripheral neuropathy.

    I am not diabetic but suffered a very traumatic and life changing road traffic accident in 2001. I am not sure what the likely causes are apart from these two.

    But I don't know if there is any treatment for this. I have lived with constant chronic pain since the accident but recently noticed the locations of the PN pain are combining together in one day whereas I used to get them in just one location for a few days.

    The main locations are my left and right toes, the outside half of my left and right hands, my big toes, my forearms, my thumbs or the middle of my left hand atm.

    But they are very debilitating and sufficiently powerful pulses of pain to take my breath away.

  • haybusa

    PN is a bitch. It can be caused by many different things.

    As far as I know PN is not curable unless they can find the nerves that are causing the pain and even then it's not for sure. There are many different treatments.Maybe someone else has more information than me (B12) cause

    I would be very very interested to know. I too am not a diabetic . Eddie

  • Hi eddymo, yeah the PN is no fun.

    Getting a bit bad nowadays in several parts of my body not just one place during a 24 hour period.

    Can this get worse? Because mine certainly is.

    The pulsing pains in my left or right toes takes my breath away !!! Has me climbing the curtains !!! lol

    I would say the intensity of the pain is equivalent to breaking a leg but in a short rapid pulse.

  • Hi ,hayabusa

    Sorry to here that. Me too. Not only PN but my arthritis is killing,

    I don't know what is worse. My PN they say Is alcohol related and I don't think mine is as bad as yours. I hurt from my feet up the back of my knees, then my arthritis is in by knees in front. Real can't walk. Then my car pool tunnel in my wrist. I'll stop there, this is enough. Maybe the cold weather is bothering our PN. What do you that for your pain ? Does it work ? Hang in there

    Is your pain go in cycles ? let me know Eddymo

  • Hi eddymo I think alcohol may be part of my NP too. I was alcohol dependent for a few years before the accident. I gave up alcohol for life 3 months prior to being smacked off my bike by a hit and run car driver.

    I've got classic injuries from a severe bike smash: spine, pelvis and head injury. So I live with a lot of pain. But I still get on with things to keep as active as I can. Yes I share the osteo arthritis with you. It's bags of fun at this time of year with the onset of winter. I'm still waiting for the NP tests but the guy doing it was a muppet and was rushing it. He didn't ask me hardly any relevant questions or about alcohol. He didn't even have my medical notes from the neurology dept. He was so rude and ignorant towards me. I came pretty close to biting him and I have pretty bad ptsd too. I sometimes wonder wtf are NHS staff on? Quality of service here is very bad now.

    I'll wait till he sends the results which might be weeks yet.

  • haybusa tonite my feet are burning pins. It started yesterday. Scares the hell out of me. Also they are extremely painful. Can't walk very well. I go for my carpool tunnel surgery the 10th. I'm trying to cut back on my oxycodone but we'll see. Life gets tough as we get older. Six lines of a letter and nothing really good to say. I know things aren't going that well either.

  • I find it healthy to adopt the warrior stance towards my life generally. It helps in dealing with the ignorance and lack of consideration from the government and the authorities.

    I don't know if you've tried reasoning with yourself and saying there is nothing wrong with where you feel the pain from. It's like reprogramming your head to deal with it.

    I get sensations on my left foot usually at night just after going to bed. I have a feeling like wire or glass is cutting into my toes. The sensation is so real that I used to look at and feel my foot every time until I trained my brain to accept it just isn't real. But it took a while. We've got to laugh at these things if we can, otherwise we would go stir crazy.

    The other odd feeling I have is that there's something stuck to the bottom of my left foot !!! Now that's a weird one !! Lol I am 100% certain there is something there, but there never is. Crazy isn't it? :) :)

  • Carpal Tunnel Syndrome is one of around 300 symptoms linked to an Under Active Thyroid. Have you been tested ? They usually only test the TSH - which is NOT sufficient. You need the full profile doing - the TSH - FT4 - FT3 and the Anti-bodies - Anti-TPO and Anti-Tg.

    TSH - is Thyroid Stimulating Hormone and is from the Pituitary Gland and tells the Thyroid to produce T4. T4 is a storage hormone and converts into T3 which is the ACTIVE thyroid hormone needed in every cell of your body.....trillions and trillions of cells. So when the T3 is low there is not enough to go around all the cells and things begin to go wrong.

    When your Thyroid Hormones are low then you will also be low in B12 - LOW B12 is a neurological condition and your result needs to be around 1000 to prevent cognitive decline. Your symptoms could be linked. Also what are your VitD levels ?

    GP's are not up to speed with many things and receive little training on the seriousness of deficiencies - especially when they can prescribe a drug that earns them dosh.

    If you click onto my name you can read my Profile and see my edited journey to wellness :-)

    Never accept Normal from your Doc - that is an opinion and NOT a result. Always obtain copies of all blood test results so you can monitor your own progress and enables you to post here with more information. It is amazing how good things happen once we take control of our health. I find that reading and learning enables me to ask the right questions ! Also what we eat is important - and going gluten free can reduce so much inflammation in the body which can be the cause of so much.

    Hope you soon feel stronger....

    healthunlocked.com/search/c...

  • b12deficiency.info/signs-an...

    Sorry - Edit button wouldn't work !!

  • Wow, Was just reading those symptoms and I have probably about 75% of those things or close to it. When I was in the hospital last Jan. I thought I saw somewhere where it had been written for me to have b 12 injections like 3 or 4 times a week but when I went back to my PCP he said no way, only once a month is what would be recommended. I presented in the ER with Respiratory failure, pneumonia in the right lung and Sepsis. Before that I had been tested and was found to have critically low Vit. D (D3 I think) levels and was prescribed high doses for 2 weeks I think. The Dr. that tested me for that wrote hypo thyroid on my DX and Chronic Hep C, but it looked like on my test results that I was within the normal ranges but closer to the low side. I have Chronic Kidney Disease, PAD, was told in 1987 I had SLE with Raynaud's phenomenon secondary but after years of positive ANA and high titers this last rhuemy said I didn't have SLE so now who knows what I have, I just know the PN is really bad and muscle weakness and shortness of breath is all getting worse with blurred vision and double vision (about 40% of the time) . and also suffer from anemia and balance problems and just seem clumsy. My blood pressure is very hard to regulate as it will be 110.60 and two hours later I'll be having symptoms of feeling like someone's choking me and it will be 210/100 then it can drop seriously low to the point that I just black out. Last week I was sitting in the kitchen chair and the next thing I know I raised up not knowing where I was then realized I was in the kitchen floor laying in a pool of blood that had coagulated. I had fell and cut my head in two places and never felt anything. It was about 2 AM and the entire next day my blood pressure was between 79/50 - 90/60 Which is very unusual.

    But back to the B-12, My insurance did not want to cover it and the cost was going to be something like 11.00 per shot. But one a month? One ml per month is what he wrote the rx for. Just wondering if it would be enough to even have an affect on me. I've done it before and never really noticed anything. /It would be so awesome if the answer to even 1/2 of these problems could be prevented or even more awesome reversed. Chronic pain is something that robs the life right out of you. Sorry this was so long. Vivian

  • Low D3 and Low B12 and many of your other symptoms SCREAMS Low Thyroid to me. Are you being treated ? The kidney and the thyroid are on the same meridian in Eastern medicine. I only know this as I have nodes on my kidneys that match the nodes on the thyroid ! Check out the main website for Thyroid UK to see all the signs and symptoms also Hypothyroid Mom - an American site.

    When there is neurological involvement - you should have B12 injections until the symptoms disappear or are relieved. I have them weekly and can buy them over the counter here in Greece. You could also buy B12 on-line ay Amazon and self treat - JARROW METHYLCOBALAMIN 5000mcg. Keep under the tongue until dissolved. Do NOT chew. Needs to be taken up by the micro-circulation. You can also buy B12 sprays to go under the tongue. Also take a GOOD B Complex to keep all the B's in balance.

    D3 capsules are not expensive - 5000 IU's dialy could improve your levels.

    The Thyroid is involved in heart issues including blood pressure. You can look at the contents of a book on Amazon called - Thyroid and Heart Failure :-) I have bought it and it is a great source of good information.

    The thyroid is the conductor of many things in the body - so read and read. If you are not on treatment your TSH should be around 2 - the FT4 towards the top of the range and the FT3. Have you been tested for thyroid anti-bodies ????

    Fibromyalgia = Low T3. Have you read my profile ? Am afraid we have to sort out most of our own health issues.

  • The last TSH test I had on 10/26/14 was 0.71, Free T3 2.97 , B12 294 , VD 25 Hydroxy total 19.0 , Free T4 1.24 , Folate 16.7 , Ferritin 62 These results looked to be in the normal range except for the VD which he did treat for either 2 weeks or a month. It's been awhile. But he did write down Low Thyroid on my DX list. But my Hep. C came back positive so I was referred to another Dr. which I go back this month and hopefully he will release me. I have not been back yet to the Dr. that put the low Thyroid down. When I mentioned to my Primary Care Physician that Dr. Kouser said I had hypothyroid he just shook his head and said he had not received any lab results pointing to that and it would be best not to mess with fooling around with the thyroid unless it was necessary. But I do have a lot of the symptoms with dry skin, brittle nails, I get fluid retention around my eyes I'm tired but nervous at the same time. My blood pressure is all over the place from 220/102 down to 78/40 back and forth. Then I could go a full day and it run 120/70 all day or within a few numbers but perfect.

    But the injectable B12 on Amazon would not be recommended? Didn't know if the veterinary and human would be the same. I just can't get my Dr. to write more than 1000 mg once per month. But there is a weight lost place that will give them for 7.00 each probably once a week if I wanted to do that. But to buy it from a pharmacy with RX it's over 12.00 each one.

    I haven't had time to check out reading anymore than the symptoms page because I've had 3 appts. a week (once a week medical, but other things that a friend has that has no license to drive so can't seem to find time to even get my work done) But I really appreciate the time you took to write to me. Thank you so much.

  • Sorry but your Thyroid results need to be posted with ranges. Where the results are in range is important. Your B12 should be around 1000 to prevent cognitive decline - so your result is low. Also the Ferritin. I am guessing as there are no ranges.

    Your Doc saying it's best not to be fooling around with the thyroid sounds unprofessional. Treating the thyroid with a hormone is supporting a failing gland. Am afraid if the TSH is low they think everything is OK. I would definitely have the thyroid anti-bodies tested - Anti-TPO and Anti-Tg.

    If you read my earlier post I suggested B12 lozenges with the injections ! They are well reported on the PAS forum here on HU.

  • I'm going to be making an appointment with the Rheumatologist that said the thyroid was low soon and will ask him about the antibodies. To me it looked like everything was 'in range'.

    TSH 0.71 ref. range 0.30 - 3.04

    T3 free 2.97 ref range 2.30 - 4.20,

    T4 free 1.24 Ref range 0.56 - 1.64

    Ferritin 62 ref range 10 - 291

    Sorry I did not put in the ranges, I should have known better because most labs have slightly different ranges.

    But I'm going to do the vitamins V 12, B complex, and Vit D D and calcium and magnesium probably wouldn't hurt either.

    My mother suffers from Dementia and I find myself not being able to complete tasks. I'm all over the place starting on something else and forgetting about what I've already started. So I need to do something now.

  • thyroiduk.org.uk/tuk/testin...

    The above website is FULL of useful information. Yes your results are in range - but where in range is very important. With your symptoms your Doc should be looking at both. Your Ferritin could do with being higher. If you come over to the Thyroid Forum here on HU and post all your results for comment there are so many helpful people there. For instance you could have central Hypothyroidism rather than Primary - something not easily recognised in the medical profession.

    VitD improves the uptake of calcium so ensure you take K2 too - that ensures the calcium goes to the bones and teeth and does not float around in the bloodstream !

    Look at David Perlmutter - a Neurologist with a website - Newsletters - books - if you want to learn about preventing Dementia. The gut is very involved. So diet is VERY important. Also Datis Kharrazian has a website/Newsletters/books which are excellent. Am afraid we can no longer rely on Docs to make us well - we have to read and read and work it out somehow !

    Take a look at my edited profile - by clicking onto my name and you will see what I mean !!

  • Oh, I haven't seen a test ordered for thyroid antibodies.

  • Hi Eddie!!! I did not forget you, it was just the last time I went to my Dr.'s visit I forgot to ask her about that new medication that she had mentioned to me, so today I wote down notes to ask her about and she gave me that information to check with my pharmacy to see if they carry it and if not could they get it for me. Okay the name of the medication is called NUCYNTA ER.

  • Darn it...it posted when I didn't mean for it to. I must have hit the 'enter' to form a new paragraph and it just posted and sent me to another page. "The back buttons don't work properly and I thought the little pencil was and 'edit' thing but it's not, don't click on it unless you want to go to another page and post something new. LOL Maybe one day I'll have it figured out. Anyway, Eddie, This medicine that I was telling you about is an extended release or 'long acting' I guess it's a pain medication that works like Opana but will also target nerve pain. The Dr. told me that the Opana was not really kidney friendly and asked if my kidney Dr. knew that I was on it and yea he does, but sometimes I think he's just waiting for my kidneys to get bad enough to start dialysis. I just don't know about some Dr.s, it seems like they would want to tell you how and what to do to get better, not just watch lab results waiting for you to get bad enough for them to do something. I even asked last time about seeing a nutritionist to maybe learn how to eat to actually help my kidneys to maybe heal by resting. I found out anything with red dye in it is bad...limited my soda pop to clear ones and not so often but NOOO coke which was my favorite. I found a site saying that blue berries were very good for them but I'm not that fond of them but will do what I have to do. But anyway you do need to be on a long acting pain medicine and then drop back on the break through if at all possible. I have a who lot of pain from my neck down to my toes including bulging discs in lover back, a side curve about where my kidneys lie and then up in the shoulder area I have an arachnoid cyst with curvature over it. I have torn the meniscus in my left knee for three years now or maybe four and it's getting harder and harder to get up and down out of a chair. I have bad planter's faciitis in both feet, Morton's neuroma in left and PN in both. Just got treated for chronic Hep C, have anemia and very high blood pressure, so I live with pain 24/7 but I'm able to make it on two long acting pain pills a day and three to 4 10 mg Percocet's a day which they took me off the ones with Tylenol but sometime I add just a little bit to it because it actually makes the Percocet work a bit better but I'm doing okay with it. I also had neck surgery I think a disc replacement and the surgeon went through the mid front of my neck and damaged the nerve going to my voice box which as time went on I was not able to talk past a whisper. Went to ENT and he knew what had happened right away and took me to surgery and injected medication into the side that was atrophied it's not holding that well and I'm starting to sound raspy again besides he found out my profuse nosebleeds are coming from something called HHT and it's hereditary. So He's going to take me back to the OR and used a lazar to seal these bleeders off and also inject more of that stuff into my vocal cord. Oh and not to forget the PAD which is probably what has caused the neuropathy in the first place. My pain Dr. said she would just like to lock herself up in a room when everyone has gone home and just read my chart, she said it's the kind of chart that she would like to just 'chew on it' which I don't think she meant literally LOL.

  • Aviva, Thanks for remembering me. I'll definitely ask me doc about it. I too suffer 24/7 and it's no quality of life I live anymore. My wife had that planter's faciitis. She got a big old shot for it and she says it don't hurt anymore. Very painful that Planters especially with PN. I feel for you. I got, among other problems arthritis in my right knee and something in back of both knees that is swollen or like a ball (softish )

    that is very painfull mainly at nite. Can't walk. Then with my aching back which hurts either sitting or standing, I'm going to try maybe that Percoet you take. The oxycodone I take is fast release, maybe I need long acting ?I let you know after my doc appointment. Stay strong, winter is always the worse Eddie G.

  • Dear Eddie, I'm afraid I cannot help, but I can sympathise! After being diagnosed with CTS five years ago and wearing wrist braces when I could (feeling like a total fraud), I found out yesterday that I don't have CTS at all, but peripheral neuropathy! I am wondering if the diagnosis of tardive diskenesia was wrong too, maybe it's all oneand the same. I also have pain in my feet, though an x-ray and a scan showed nothing amiss. Several friends of mine have had the simple surgery available for CTS, but on none of them has it made an appreciable difference, so I've held off on that particular idea. I take pregabalin now, used to take gabapentin, plus morphine and a cocktail of other meds so that I ought to rattle if shaken! Keep smiling Jamie

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