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Neuropathy Pain

Discussion in 'Peripheral Neuropathy' started by soxfan, Mar 26, 2012.

  1. soxfan

    soxfan Senior Member

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    I have bad neuropathy pain in my feet and calves. It has continued to become worse over the years so that now I have to consider taking something for the pain. It is a burning...electrical current...stabbing..vice like continously running up from my feet to my calf. I also have continous muscle twitching in the calf as well. I was wondering if anyone has any experience with either neurontin or lyrica. I was given neurontin a while ago but didn't feel the pain was enough so that I had to take something.
    Just recently it has started in my hands so that when I touch anything it feels as though there are needles pricking my fingers.
    I am seeing the doctor next week but was curious if anyone has had any success with either of these medications.

    I am also wondering if anyone knows the cause of this...I was first told it was CFS and then told it was a major Bartonella/Lyme symptom. I am very worried that after 8 years it is now progressing to my hands as it is very hard to do things with especially my left hand.

    Is there any type of creams etc. that I might be able to rub on my hands so they are not so sensative? Thanks......

    In fact this pain was my first symptom back in 2004.
  2. nanonug

    nanonug Senior Member

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    Two things for you two consider:

    • Vitamin B12 deficiency (do you take methylcobalamin as part of the methylation protocol for example?)
    • Magnesium deficiency (an RBC magnesium blood test would tell you - you may also try foot baths with Epsom salts and see what happens)
  3. lansbergen

    lansbergen Senior Member

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    You might try Benzydamine cream ( brandnames Tantum/Difflam )
  4. Timaca

    Timaca Senior Member

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  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Taking the supplements needed to heal the nerves is important. Carniclear, Vit D, Benfotiamine, Alpha Lipoic Acid, lots of good antioxidents in food and supplements, LOW sugar and white carbs. Also, good fish oil, b vits,

    I have autonomic neuropathy (POTS) and I have no diabetes or any blood sugar problems, but I watch my blood sugar right after meals. Spikes are not good. Keeping the glucose level is good for the nerves and healing.
  6. soxfan

    soxfan Senior Member

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    Thanks for all who replied. I was interested in finding out who here with CFS is also dealing with this symptom...so that is why I asked the question. I am going to look into these suggestions in the hopes of getting some relief... I don't have diabetes or blood sugar problems. In fact it is usually on the low side when tested. I just assume it is from either Lyme or EBV infection since that is what I have read. You have all been really helpful..

    Thanks Timaca for the link..
  7. alex3619

    alex3619 Senior Member

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    ahimsa likes this.
  8. Boule de feu

    Boule de feu Senior Member

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    Soxfan,

    I have been taking Neurontin for many years now. Before that, I was taking Lyrica for the pain but when my GP found out I had a very severe type of neuropathy - a small-fiber peripheral neuropathy called Erythromelalgia - Neurontin seemed a better choice.

    It helped the burning a lot, but did not do much for the pain in my legs and back.

    I hope this helps.
  9. ukxmrv

    ukxmrv Senior Member

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    I've found the drug Lyrica better than supplements / herbs except for a few exceptions for the pain, stabbing burning electric currents and prickling etc that you mentioned. It's been there since ME first struck me with an acute viral onset over 25 years ago.

    Blood tests showed that I was low in folate and supplementing with this really helped. B1 (thiamine) and magnesium plus potassium helped too. For when it is really bad I take Lyrcia and then Baclofen at night then these symptoms stop me from sleeping. I can only tolerate a small dose of Lyrica and then only for 5 or less days before the side effects set in for me. That's enough though to deal with the bulk of the symptoms. Even taking the edge off them is a relief.

    Valtrex helped a great deal with a specific burning, deep ache in my lower legs at night but this sounds different to what you are experiencing.

    Hope some of this is of help to you.
  10. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
  11. SaraM

    SaraM Senior Member

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    methyl b12, benfotimaine and maybe mag for burning and stabbing pain. I now only have aching pain and stiffness which stop me from sleeping. I wish I could find something to take care of it.
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I take a lot of what is mentioned there. The Benfotiamine, Carnitine, Alpha Lipoice acid and others. Very good article explaining WHY the supplements work, I have read explanations before, but this is really good. Thank you.
  13. Googsta

    Googsta Doing Well

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    Diabetic Nerve Pain has been touched on, if you haven't had your blood sugars tested recently check it off your list.

    I get burning down the right side of my torso, I am going to double check that with my Neurologist next week.

    From what i understand Lyrica should work very well for you.
    It has been prescribed for my husband, he has burning, crawling etc due to spina bifida/spinal cord damage. His pain is in similar areas to yourself & he has had improvement with a magnesium supplement & fish oils.
    All the best.
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I wish blood glucose testing was enough. You need to watch the sugar spike right after eating, not just the two hour testing and fasting etc. Nerves are sensitive to glucose spikes. I have no problem with glucose levels but I am eating like a diabetic (paleo, healthful foods) so the nerves will have a steady glucose level. Good for the brain also.

    The supplements are key. You have to clear toxins from the nerves, feed them what they need, also give them oxygen with exer. and breathing and be careful with sugar and carbs.
  15. Athene

    Athene Never give up

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    My doctor prescribed Lyrica for me but I only took it briefly because of the side effects - it makes you tired and feel heavy so every movement takes more effort. Sound familiar? I hardly need more of that!
    As far as dealing with the pain goes, it did help but not miraculously.

    If you have explored the nutrients mentioned by others, it might be worth looking into infections. Lyme disease and bartonella can both cause these neurological symptoms. Hypothyroid can also cause them.
    I've been talking antibiotics for ages for the infections I mentioned, and made gradual progress. I've just been tested and found low in thyroid. These symptoms have been getting worse for me lately so I guess it's the thyroid problem now.
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Athene, look into the antibiotics. Many meds cause neuropathy.
  17. Athene

    Athene Never give up

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    Thanks for the warning. I've got an appointment with the specialist pending and he is going to review all my antibiotics, so I'll ask him about that.
    Though I would guess they are probably not the probem, as I have been taking them for over a year - I would have thought a problem would have surfaced sooner if they were not OK???
  18. soxfan

    soxfan Senior Member

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    Athene- funny you should mention Lyme and Bartonella as I have been treated for both. I am currently being treated again for Bartonella. I also have hypothyroid but have been on medication for that for about 6 years. My doctor thinks it is Bart causing the pain. I did have a elevated titer a few years back and haven't been on any abx for 3 years.
    I have started taking the neurontin but it will take me a while to get up to 300mg. I am also going to look into the supplements that all these wonderful responses mentioned.

    I was previously on abx for 30 months but had the neuropathy pain 2 years prior to taking them.
  19. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Just something to ask about. Also, research on your own. Doctors rarely know about it. Called Pharmacists and read about drugs causing neurpathies. SO many meds. can cause it. Even too much vit B6. Nerves are sensitive to toxins.
  20. rlc

    rlc Senior Member

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    Hi kim, peripheral neuropathy is unfortunately caused by over 200 different conditions so it isnt a very helpful symptom for tracking down the right diagnosis. See http://en.diagnosispro.com/differen...ripheral-neuropathy-causes/11982-154-260.html These includes Hypothyroidism, prescription drugs, poisons, genetic conditions, vitamin deficiencies, and infections including Lyme etc.

    Ive had a lot of time on my hands this morning due to waiting round to go to a specialist appointment, so Ive been reading back over your previous posts, Im not a doctor but this is what I get the impression is happening, and something you might be able to do that may help.

    All Lyme tests are unreliable, so any results you have had from them are questionable because they give a lot of false positives, you did initially respond well to treatment, but treatment went on longer than is usual which might have made you worse, so maybe you had Lyme and the treatment worked, but it continued to long and made you sicker, you then have had 30 months of Lyme treatment and dont feel better, which I think would show that it is not Lyme causing your problems, if you did have Lyme and it was treated by the initial antibiotic any further tests often show the antibodies to the old infection even though it is cured which can result in false positives.

    EBV and HHV6 tests are also unreliable and a lot of totally healthy people get high results on these tests and there is nothing wrong with them, you had some inconclusive tests for these and have had treatment that hasnt helped, because these tests are very unreliable and you have not responded to treatment it is very possible that they are not the cause of your problems, although EBV and HHV6 have been linked to CFS for a long time this theory has never been proven and concern has been expressed from some quarters about the conflict of interest by some groups pushing these views, EBV has an incubation period of 40 days and HHV6 has an incubation period of 10-12 days, ME epidemics showed that whatever was the cause had an incubation period of 4-6 days, it is scientifically impossible for EBV or HHV6 to be the cause of the ME epidemics.

    You do however have some tests results which dont seem to have ever been investigated and resolved properly,

    You had very low cortisol results, when treated with cortef you experienced some improvements, but it is quite possible that you were be given to much or too little of it, then after tapering of cortef, your cortisol results are back to being very low, I dont feel that you have ever had this properly investigated and your endo from your description of events seemed to be doing a very bad job of things, although subtle dis-regulation in cortisol production has been reported in some CFS studies, there is nothing subtle about your results, Im concerned that something treatable has been missed here and feel that it needs to be investigated properly.

    Your Thyroid blood tests have been very wacky, and you have multiple nodules, some quite large, and your left side of your thyroid gland is significantly smaller then the right, again your doctors appear to have been making a mess of properly diagnosing and treating this, and appear to have been giving you the wrong amounts of medication that made things worse. Subtle thyroid problems have been reported in CFS, but again your results are not subtle.

    As I see it your cortisol and thyroid results would explain the majority if not all of your symptoms, and you appear to never have had a satisfactory diagnoses and or treatment for these, instead you seem to have had a very poor and disjointed investigation and medication thrown at these issues by doctors who dont give the impression of known exactly what they are doing, and you have had different doctors giving you completely contradictory advice, and their treatment has often made you worse, which strongly indicates that either their diagnosis or treatment protocols have been wrong, I am not convinced that CFS is the cause of your Thyroid and Cortisol issues.

    Because the Lyme, EBV and HHV6 tests are so unreliable there is a good chance that they are just red herrings and are not the cause of your symptoms, the problem with specialists is that they tend to only see what they specialise in, so Lyme doctors tend to only see Lyme and CFS doctors tend to only see CFS, and they are often very bad at diagnosing conditions that are outside their area of expertise.

    The thing about CFS that the majority of people seem to have forgotten is that the people who invented the condition never said it was a disease! They said it was a syndrome, basically just a group of people with similar symptoms, who didnt fail any of the standard tests and nobody could work out what is wrong with them. In recent years a lot of studies have come out that show that a horrendous percentage of people diagnosed with CFS are actually misdiagnosed and have a missed known condition.

    My feeling is that your test results for thyroid and cortisol indicate a strong possibility that something has been missed and you dont have CFS, and from reading about the actions of your various doctors Im not too surprised that this could be a possibility.

    It looks to me that you have an untreated or badly treated endocrine problem/ problems, and from what you have said your endos havent been very good and havent worked it out properly.

    I dont know if it possible for you travel wise, but there is a doctor in New York who could possibly sort out what is going on for you. He is an endocrinologist and assistant professor of internal medicine, who is very up to date on modern research related to a lot of different conditions. He rightly believes that CFS is a syndrome not a disease and intensively investigates his patients because of this, and claims to be able to find the correct diagnosis around 90% of the time.

    His name is Dr Shirwan A Mirza, he has written several articles that explain how to find the correct diagnoses and why the CDC and NICE guidelines are full of serious errors. They are The Myth of Chronic Fatigue Syndrome which can be found at the bottom of this page http://www.bmj.com/content/334/7605/1221?tab=responses and Chronic fatigue syndrome NICE and CDC miss the boat on this page http://www.bmj.com/content/335/7617/446?page=2&tab=responses

    He also frequently right replies to other articles in the British Medical Journal pointing out that the so called experts are out of date and have got their facts wrong such as Diagnosis and Prognostic Utility of Autoantibodies in Thyrotoxicosis on this page http://www.bmj.com/content/332/7554/1369?tab=responses and Unveiling the mysteries of the Thyroid on this page http://www.bmj.com/content/337/bmj.a801?tab=responses

    He is very up to date on modern research and if I lived in the States he would be the one doctor I would want to go and see to make sure that all other conditions had been ruled out properly and that I actually had the right diagnosis. Because he strongly believes that the majority of people with a CFS diagnosis are misdiagnosed he is going to try very hard to find the cause of your suffering.

    His contact details are

    Private practice
    399 Grant Avenue Rd Ste 1
    Auburn, NY 13021
    (315) 253-2669

    And he also works at Auburn Memorial Hospital

    If youre not able to see him, my view would be to try and find an Endo that knows what theyre doing and get them to try and find out why you have all those thyroid and cortisol problems and treat them properly, because your test results are bad enough to explain your symptoms and there is a good chance they have nothing to do with CFS and might be treatable. If I were you I would want to get a proper explanation and treatment for your endocrine results before worrying to much about the likes of CFS and EBV etc

    Hope this helps

    All the best Kim
    ahimsa likes this.

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