Peripheral neuropathy

Hi. I've joined this site to learn and share.

I've just been diagnosed with peripheral neuropathy. It only started in October, and I've no idea why. It started with a burning foot then moved on to both feet within 3 weeks. The gabapentin works but I couldn't cope on 900mg a day. It was like being in 2nd gear all of the day. I'm currently on 300mgs a day and coping. But the pain in my finger joints is not pleasant. I'm wondering if this is from gabapentin or something else? I'm 40 and normally healthy. My biggest worry is how quickly the PN will progress. ... any have similar?

Any help gratefully received :0)

19 Replies

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  • I have had PN for about 10 years and have tried all of the medications that are available to treat PN. None of them gave much relief. I have recently started a treatment with a doctor in Columbia, SC that has eliminated the pain but I still have numbness. It involves injections in both legs and TENS treatments. I am hopeful that the numbness will start to subside. I've only been on the TENS unit for 7 days.

  • Hi John,

    I hope that its successful for you. Tens machines are pretty good. I'm waiting to find out why i have suddenly got PN... and I'm waiting for an appointment for nerve conduction tests. Luckily for me the gabapentin works mostly. However I've developed pain and stiffness in my hands which isn't fun.

    Let me know how you get on..

    Kind regards,

  • Oops sorry wrong person.

  • Hi there ive had pn for 2yrs ive had the injections in my feet didnt work  no one seems to know what to do the pain and numbness dont go away its spread past my toes in both feet ,im on 300mg of lyrica,hard capsules (pregabalin)They make you feel high for a while it does take away some of the pain away ,and helps me sleep ,but as soon as i wake up its back like with avengance,walking is hard now i feel every step i take,ive got like hundred pair of socks,so if anyone out there knows what or if theres any other treatment  out there please let me know as im at my wits end.

  • I too have p.n. I had a lung transplant two years ago so I think the p.n Is caused by 'the drugs. I have tried gabapentin with no success and have since tried Pregabalin but could not cope with the side effects the only alternative I have been offered is amitryptilin but I have not tried it due to the side effects shown. I have been given a new life so I am prepared to put up with the discomfort but am annoyed they have now taken away my blue badge, seems the only way now to get one is to be in a wheelchair!! Any suggestions to make things easier would be welcome. I do try to keep walking and put up with the pain to keep my legs strong.

  • Being in a wheelchair is no guarantee of a blue badge...my DLA>PIP went down as me not needing higher rate care or mobility. I am fighting it now

  • I appealed for my blue badge and fortunately they accepted. Good luck.

  • Hi Seyre,

    So far the gabapentin is working for me. I'm now on 200mg's three times a day, the 300's left me too tired and I couldn't remember words etc. I was told that I could possibly have Duloxetine(?) but it's new and probably expensive... I can't take amitriptine either. I try to walk and do some leg stretches so that I don't loose muscle or strength, I don't want to just not bother then in 12 months time struggle to walk!

    Other than that I wish I could help you further.... I'm happy for you on your new lease of life :0)

    I don't complain because this site shows you how many others are coping with a lot worse, I respect and admire each of them for the strength they show. However I do believe we're all allowed to have a good moan now and again.

    Take care x

  • Hi

    I am 34 yr female, suffering with fatigue and so many conditions since 3 yrs. First it started with Dizziness and weakness and body pains all blood test were negative, after some days my heart palpitations started along with racing heart, All ECG and Echo were normal. After 1 yr or so my left side started hurting. Pinning and tingling on left palm and soles and stabbing sensation and now feeling breathlessness.

    I was on Pregalin 75mg twice daily since 2 yrs. and Neurokind

    What could be the reason

    life seems sucking for me

  • Check out my post below :-)

  • Hi Foggy,

    Have you been evaluated for other disorders by a rheumatologist? I'm thinking particularly fibromyalgia, rheumatoid arthritis, etc. These two diseases can cause joint pain. I'm not a doctor. I have Raynaud's and Erythromelalgia, so I know all too well about PN.

    Stephanie

  • You may find my post below helpful.... :-)

  • Your symptoms are also similar to B12 Deficiency. When your levels are below 500 you can suffer neurological issues. Sadly GP's have little knowledge of the condition and are quick to say you are normal when they mean in range. WHERE you are in the range is important. To prevent cognitive decline you need your levels around 1000.

    Go to the PAS forum here on Health Unlocked and read some of the posts.

    b12d.org

    Gut issues can prevent good absorption levels too. I have weekly injections as I do not have the part of the gut where B12 is absorbed. I would also have your VitD tested - and if your B12 is low in range then have Ferritin - Folate - Iron tested too.

  • Have your doctor do a blood test for it? That's how I found out I was anemic, even though I had no idea. The only symptoms were feeling run down (which I attributed to my migraine meds), so I ignored it, and mouth sores, which I thought were from my asthma inhalers, so I ignored that too. I have enough going on already! But as it turns out, iron supplements made the sores go away, mostly.

  • I have PN in both outer aspects of both feet. It started about 5 years ago in one foot then went to both, now I've noticed it in the insides of my knees when I'm sleeping on my side and my knees are together. But I would say everyone is different. I just went to a Dr. today (this was the first time I was to see him and he asked a lot of questions and said he thought it might be Collagen 4 disease. So I guess depending on what is the root cause of the PN could have an affect on how fast it would progress. Guess I'm not that much help.

  • Hi snowbunny,I'm a 53 male and would like to offer some insight to my own personal story and hopefully you can try and gain some knowledge on the way,I have had a similar situation to yourself,I have tried your meds and failed,I have also tried a tens machine which made matters worse as it caused more muscle spasms in my calf's, I'm currently on 2×300mg pregabqlin, and a 30mg mirtazapine at night time,I also have lidocaine patches which I stick to my calfs,and recently changed from tramadol to dihydrcodeine pain killers, the pains have been with me for over 3 year's and it's intense,so I know what your going through, unfortunately it seems that  it could be trial and error to get some relief, I'm still suffering and because of this condition it's invisible you don't get much sympathy, the mirtazapine do help me get some sleep,but keep trying different meds until you feel you get some relief,I think it's a long road to be pain free and from a personal point it's not a terminal illness,so good luck and try not to get to fed up,cause it can make you feel miserable,and try swimming it keeps you mind of it and at the same time you won't lose to much muscle waste,cheers 

  • I'm now 73, diabetic T2 since 1999, the last 2 years enduring DPN,  the psychoactive drugs given to try to reduce the pain, these are as you know antidepressants, anti epilectic drugs and are used purely as pain reducers and all in high doses, see you have experienced the mind numbing effects and squeezing the life out you, all set against constant background depression, I was also in a wheelchair for eighteen months until recently. Now the good news, for me. I was always scanning the seats of learning and research for any new developments, one that caught my eye, that I had been following was the use of vitamin D3, remarkably they had been getting a significant reduction in pain levels in DPN, in fact better than any of the psychcoactive drugs and possible improvement in glycemic control. Lots of small trials had been carried out with several hundred people taking part in the trials and it seemed those taking the D3 showed a marked improvement to those taking the dummy pills, meaning D3 was better than placebo every time, since the earlier trials much bigger trials have and are still taking place to establish this not a fluke of some sort. There is now a considerable amount of excitement at this finding, and I for one started taking 5000iu of vit' D3 about 6 weeks ago, just prior to that I weened myself off all the psychoactive drugs, slowly for around 2-3 weeks its important to do it this way or all sorts psychological unpleasant problems will start. All I can say in just over a week of being on the D3 my pain levels started to drop and mentally like stepping out of fog and back into the sunshine and feeling ALIVE, so much so there were a few fools though I was becoming hypomanic, bugger them what do they know about excruiating pain ............nothing. What I will suggest to you is to find all the articles and papers on the net, and there is now plenty, check it all out  and make up your own mind, remember it is your life nobody elses, you must do what is best for you and your life............this could be right approach to get some of it back. Go to your google search, and type in Vitamin D3 reducing pain in diabetes. There you will lots of success stories  :-)  Let me know how you got on and I love winners, good luck.

    Try the following start with 5000iu of D3. What needs to be in your blood readily is between 80 and 100ng/ml.  You can request a blood test via GP and in the UK they must do it for you, later (days) get the results written down to show the D3 levels if you are achieving, the recommended levels you should start to be getting results if not achieving the levels increase the D3 by up to 10000 iu the toxity levels for D3 is way above 20000 iu, I checked with a pharmasist so no problems there, but again you must also check this out yourself as well. Go for it.

     

  • Hi am new on here too and its s good to not feel alone fighting PN. I have been suffering for about 6 years now, am currently on 2100mg Gabapentin a day but the pains are beginning to get worse so am on Tramadol as well. I push myself every single day, to be as independent as I can, but cant be trusted to cook or even use a kettle now as have limited feeling in my left hand but am losing the use or my right hand as the days go by. Iam 49 now with two grown daughters, my youngest lives with me and is my unpaid carer. x

  • I was wondering if most of you started at a level where the PN just got worse?

    I was ok for a few months on 400mg a day and now the burning is coming back and I know it won't be long before I have to up my dose to 500mg's and see how that goes....

    I've been for a blood test today to see if I've got arthritis, which I'm pretty sure I have....

    Hope you're all doing ok

    :0)

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