Will My Neuropathy Get Worse?

Will My Neuropathy Get Worse? | Neuropathy Symptoms

The number one question most neuropathy patients ask is Will My Neuropathy Get Worse?  The fear that their neuropathy symptoms will grow progressively worse. Neurologists call this a progressive polyneuropathy. The truth: no one really knows if your neuropathy will worsen, stay the same or disappear. A neurologist shared that this may have more to do with the underlying cause of the neuropathy, genetics, and heaven only knows, issues.

I speak of this very fear in chapter twelve, Focus, in the DVD “Coping with Chronic Neuropathy”, and if you have not viewed this chapter, I suggest that you do so. The viewing will provide a better perspective.

Neuropathy patient fears are often increased by the coming and going (remitting and relapsing) of neuropathy symptoms. These patterns are a medically confirmed fact and also occur in many other chronic illnesses. Better recognized are the same patterns for some forms of MS (Multiple Sclerosis)!

Neurologists confirm that there are acute neuropathies that come on suddenly and then the symptoms disappear. In other neuropathies symptoms occur, disappear and then return at the same level. Other neuropathies occur, disappear and then return at increased levels and in more places of the body. Others come, go and then go away for years only to return with a vengeance!

The chronic neuropathies (affect one set of nerves) and polyneuropathies (affect many nerves), which increase for years are often referred to as progressive polyneuropathies. The mystery is increased as there seems to be no rhyme or reason for these patterns. The only thing I noticed is that when I increased activity, I have increased burning, pain or other symptoms and I neurologist tell me that this is due to making damaged nerves work.

For years between the emotional highs when my symptoms remitted (“Hurrah, they’re gone!”) and the emotional lows when they relapsed (“Oh no, they’re back!”), I was tempted to worry that my symptoms were going to worsen and guess what, they did! But one has to ask the question, did the energy spent on worry change anything? No! What I re-discovered was what I learned in Sunday school. It was better to spend my time and energy finding a doctor who was trained (neuromuscular neurologist) in the clinical approaches to neuropathy then to waste energy on worry. I needed a doctor, not worry, to focus on my symptoms.   I needed a doctor working with me as a partner, while treating the symptoms and looking for the TYPE and/or CA– USE.  Why finding the type of neuropathy important?  Because as Dr. Latov in his book tells us, this can often point in the direction of a cause! I needed a medical Sherlock Holmes, not time worrying about what might happen.

This approach maintained a focus on self empowerment by learning all I could, while prodding the doctors with questions that helped them think and act. The most important question for you is not, will my neuropathy get worse, but what is the type of neuropathy and/or the underlying cause? Spend your energy looking for the type and/or cause, as no one knows if your neuropathy will worsen or not.

I know that for so many of you neuropathy has been a progressive illness which worsened over the years. Conversely, my progressive polyneuropathy has not killed me, for my neuropathy symptoms began at age 31 and I am now 76. Thirty-five years into the symptoms with a million denials with a diagnosis from mentally ill to idiopathic neuropathy.  I was given one drug which drove me to talk backwards and then another that reduced pain by 80%. Five years later with the miracle of IVIg I am able to keep breathing and the chest muscle spasms stopped while reducing other mind numbing symptoms. This took many doctors, lots of research and knowledge, while asking good questions and giving doctors documents from experts. It may have been fear and anger which drove me forward, but it was these focused actions that brought help, not dwelling on my fears!

It is important to know which issue is important as you set goals for getting help. It is important to focus your energy on learning, getting help with symptoms and finding the cause and solutions for the diagnosed illness. I do not mean idiopathic neuropathy (of unknown cause). It is very difficult to find a solution, other than for symptoms, when the neuropathy is of unknown cause.  Help the doctor think and pushing the system to do the testing that is now available. Click here to read about my opinion on Idiopathic Neuropathy.

Tests that are available will allow the doctor to know if the neuropathy is large or small fiber, motor, sensory or autonomic, axonal, immune-mediated, demyelinating or inflammatory and these clues can lead to a possible identification of the type and/or cause that is more helpful than idiopathic.

RESOURCE: Read Dr. Scott Berman’s book, as this book may provide insight on these issues. Click here to view the recommended Books On Neuropathy.  Dr. Berman has untreatable CIDP (chronic inflammatory demyelinating polyneuropathy) and his book speaks to all neuropathy patients as one who has been in our shoes with many neuropathies. Dr. Berman empowers us to face creatively the emotional issues we ALL face in chronic illness.

About the Author

LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.

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38 Comments

  1. Just wanted to thank you for this informative writing. I am preparing for my first neuro appt. for pn and am scared to death of what is happening so quickly in my body. Your message contains a wealth of information and I appreciate your sharing it.

    1. Linda: The fact that the information was helpful makes it all worthwhile.

  2. Thank you for this information. I suffer from chemo induced neuropathy for ovarian cancer. The surgeon hem and haws about it but has not helped me understand or deal with it. The only thing he has encouraged is exercise. It is nice to know there are other options out there.

    1. RUTH. Glad it helped. Please order your free copy of the DVD if you have not done so and look at the FAQ tab as it has other information in it. By the way, the cover of the DVD and this website was designed by David Morroll a cancer patient who also had neuropathy and we became great friends in the infusion room! He is a great guy and lives now in NH. Oh, Dr. Latov’s book (see RESOURCE tab) has information on chemo induced neurpathy.

  3. Thank you so very much for the information and assistance with leads to resources. I have quite a lot of research to do, it appears. Looking forward to DVD, though admit there is still this ‘fear’ angle as I have to continue work for several years and the unknown sits in my mind. Was told to stretch feet, walk on toes & heels to work nerves, etc. Oh my, so much to investigate! And will order books you referred to. You are like a ‘life line’ to me and I agree – spend time searching, not worrying. I will try. Thank you again.

    1. Julie My thoughts are with your as you seek the help you need and deserve. The advice to MAKE or FORCE damaged nerves to work will INCREASE the neuropathic pain. Proper exercise is important and you can find some guidance in the article on exercise in the NSN TODAY tab. If you have more quesitons, lset me know.

    2. I have been recently diagnosed with idiopathic neuropathy, I’m having symptoms all over my body tickling sensation’s numbness prickly pins and needles, even in my ears have a constant tickling sensation. I find it hard to sleep at night I’m having trouble dealing with it. I have discussed this with my primary doctor and he is seeking a referral to either Shands hospital, or mayo clinic in Florida. I currently live in the Orlando area of Florida. Is there anyway you can recommend the best neurologist to help me with this? In Orlando Florida or maybe in the mail clinic or Shands hospital in Florida?
      I stumbled upon your website is been extremely helpful and a blessing I’m thankful for all your efforts! I’m sure you have been a tremendous help for so many who have been suffering from this. Thank you again and I’ll wait on your response. May God bless you richly!

  4. i have peripheral neuropathy in both legs and feet from Agent Orange direct exposure on Guam where I handled, mixed and sprayed it for ten years during the Vietnam war. I also have anklylosing spondiolysis, sciatica, spinal stenosis and osteoarthritis with degenerative joint and disc disease. The pain has gotten worse especially the right foot and big toe. I have talked with other vets exposed with me and they have same symptoms. wearing socks is feels like the socks have rolled up under the feet and the big toes have excruciating shooting pain and buring pain. any ideas to help this condition ? many of us suffer these same diseases from AO direct exposure which mine was severe and prolonged.

    1. MSGT FOSTER: I understand completely. If you have not ordered the free DVD at the ORDER DVD TAB please do so by sending your mailing address to gene@neuropathysupportnetwork.org. Would suggest that you look at the q/a at the FAQ tab to further understand your condition. Consider the topical creams listed for the burning pain in the feet and other suggestions. For the shooting pains both the anti-seizure and anti-depressant drugs are often used in combination to treat neuropathic pain which is pain caused by the damaged nerves. The one drug that helped give me 80% relief from these pains was called nortriptyline an older anti-depressant that is used for this type of pain. We are just now beginning to understand neuropathic pain for damaged nerves. The feeling of socks rolled up on the feet is very common with peripheral neuropathy. To further understand this disease caused by Agent Orange and hundreds of other causes, suggest you go to the RESOURCE tab and order two books (under $15 each) the one by Dr. Latov and the one by Mims Cushing which has ideas from patients as to things to try. Too few doctors have the clinical training for the diagnosis and treatment of peripheral neuropathy but we are working on it. Back 10 years ago these books and ideas were not even available and while denial of the relationship between ao and neuropathy continues within the VA and government we are making inroads into the denials. I only wish it could happen sooner, but it is an up hill fight. God bless.

    2. I just read ur comments and noticed u saying that when wearing socks it feels like they r being rolled up under ur toes? Like u have a knot behind ur second toe? I get that with having my peripheral neuropathy. Its an odd feeling.

  5. Interesting read. I’ve suffered from neuropathy pain since I was 17, and I’m now 38. I was diagnosed with small fiber neuropathy but also idiopathic, peripheral, and autonomic. The full gamut of doctors not knowing where of how to diagnose.
    Knowing other people are out there and have experienced this and are still experiencing this, does give some hope on days when the pain is at its worse. No one understands by looking at you at the pain your experiencing so it’s sad but good to know you’re not alone.

  6. This is the most helpful information I have ever found on neuropathy. I have something called Lumbosacral radiculoplexus neuropathy caused by diabetes. It initially caused unbearable pain and I’ve been treated with morphine and dilaudid for 3 years. I just got myself off the dilaudid (which was hellish) and was planning to get off the morphine. My problem is I started to exercise–strength training and walking–again on Monday, and the next day the pain was horrible again. It helped me to see that you noted the same thing about exercise. Now I have to figure out if it’s better to keep taking the meds (and be dependent on them) so I can move my body and stay in shape or if I should stop taking them and just sit around all the time. Have you ever been able to exercise without the symptoms returning? Thank you

    1. Sue: I sent you a response via e mail. But for anyothers, for questions regarding physical therapy and exercise, go to the article on the website in the NSN TODAY tab and read. See this article: https://www.neuropathyjournal.org/physical-therapy-exercise-and-neuropathy/ The right kind of exercise or physical therapy can help neuropathy, BUT the wrong kind will increase the pain due to the damaged nerves. You are forcing damaged nerves to work…thus more pain. Write me directy via e mail at gene@neuropathysupportnetwork.org and tell me the type and location of the pain as there maybe something else that will help besides the opiates that often become a problem worse than the disease.

  7. I’ve had idiopathic neuropathy for over a year, hopefully I find out the cause. Living with chronic pain can test your sanity, and its hard for the medical community to treat. I wouldn’t wish this never ending discomfort and variable pain on anyone. Good luck to my fellow sufferers, try to distract yourselves.

    1. Hi. You will find lots of information basic to understanding PN on the FAQ tab on this website. There may be some information there reqarding treatment for pain and symptoms. I know that the burning and tingling sensations are often successfully treated with topical creams. The one that many patients say works for them is called NeuragenPN available in many CVS and Walgreen stores over the counter. Also there is lots of information in the book by Dr. Norman Latov regard causes and some treatments…and the book by Mims Cushing has lots of information from patients…both available on http://www.amazon.com for under $15 each. Also if you will send me an e mail at gene@neuropathysupportnetwork.org we can send you the latest on diagnosis of PN that you could give to your Neuromuscular Neurologist in helping to find the cause of your neuropathy. Best to you…. Col Gene

  8. was recently diagnosed with periphreal neoprathy, after 3 years of going to the va, telling me it was all in my head, went to private neurologist. after diagnosed,i asked how it came on so fast(overnight), lost balance,equilibrium,eye problems,etc., no real answers, am 76 yr old veteran not exposed to ao. I went from very active to almost inactive, still a mystery to me. thanx

    1. Kenny: Neuropathy is very unpredictable. The most important issues remain, do they know any cause and second what was diagnosed? Do not allow them to diagnose just an idiopathic neuropathy. I am not sure when the symptoms began as you mention 3 years going to the VA then I think you are saying the same PN symptoms then grew really worse almost over night. You may have a form of CIDP or Small Fiber Neuropathy if you are not diabetic, and there are some treatments to stop the damage. But you need to be seeing a board certified neuromuscular neurologist to have a shot at getting help. Please send an e mail to gene@neuropathysupportnetwork.org and perhaps I can offer some more insight that you can share with your doctor. The more information you provide on symptoms (please go to the NSN TODAY tab on the website and read the article on SYMPTOMS under PERIPHERAL NEUROPATHY), the more information and insight we can provide. Also send your mailing address and we will send the DVD “Coping with Chronic Neuropathy”. Read everything in the FAQ tab as it is basic to understanding neuropathy. But send me an e mail so I can give you more guidance from Doctors who know
      .

  9. E-MAILED YOU ON THE 8TH, HAD MRI, EMG, EEG, SAID I HAD NERVE DAMAGE. WANTS SLEEP TEST, PUT ME ON PROZAC, DIDNT DO MUCH GOOD, CHANGED TO GABAPENTIN 100MG 3 NIGHTLY. MY MAIN PROBLEM IS MY BALANCE, DIZZINESS, GROGGY, FEEL LIKE I WANT TO SLEEP ALL THE TIME. VERY FRUSTRATING. THANX

    1. Kenny: I do not have your e mail…. make sure you send it to …. gene@neuropathysupportnetwork.org … so try again…. sorry about this… I am about one week behind in getting folks answers… but since you sent it on the 8th you would have received an answer by now. According to Dr. Latov you need the gabapentin and if this does not work then they need to add another type of drug such as nortriptyline..so make sure you speak to them until you find what works for you…. so if it stops working talk to the doctor… for burning pain they use a topical cream… see FAQ tab…. For balance, dizziness (common well documented symptom of PN) make sure you have a cane, walker etc… to keep from falling… when you feel tired (a common well document symptoms of PN) do not fight it… rest for about 1 hour or so even if you do not sleep… it will help a bit… groggy comes from lack of sleep and chronic neuropathic pain… read everything in the FAQ tab as it helps understand the basics of PN…. YES HAVE THE SLEEP STUDY…. a special machine at night will keep you breathing and help in getting more deep sleep… if I were to guess… talk to the doctor about CHRONIC INFLAMMATORY DEMEYLINATION POLYNEUROPATHY or a variant thereof…. as this must be treated and treatment with IVIg (immune globulin) is very effective…. see the website TAB NSN TODAY on the left column go to the subject Why IVIG as there are ten articles on the subject… If you send an e mail I can send you a document to justify a trial of IVIg in your case that you can give to the doctor… this document saved my life when I gave it to the doctor and they did it…. been getting IVIg since 2004…. If you have not ordered the DVD “Coping with Chronic Neuropathy” please send by e mail your mailing address… God bless

  10. Hello,
    About 3 years ago I woke up with neuropathy. The neruroligist just did some painful nerve tests and said I was idopathic. He has retired and I never went back to see anyone else as I figured they did all they could. I am on 2400 mg of Gabapentin but I still have so much pain. Walking is something I have always done for excersise, however it is so painful when I get done it feels like my nerves are trying to jump out of my skin. Also I always have a feeling that my nerves are squeezing my muscles. I have constant burning in my shins and can no longer mover any toes. The nerve pain is now in my sides, face , arms, hands, and abdoman.
    Is this pretty much all I should expect from a neruologist? Just give me different meds to try? I come home from work and I am so exhausted I am asleep by 7pm. Then I spend the weekends in bed. I really have no life and see no reason to continue as my quality of life is rather poor. I hate to take the time off work and the money out of my pocket, to see a Dr who is gonna spend an hour shocking me with electricity then say well, nothing we can do.
    I am sure you would advise I seek another Dr but is there really going to be any benefit?
    Thx

    1. Rebecca: I do not know what tests were conducted by the neurologist who should have retired long time ago. I never suggest any patient accept a diagnosis of idiopathic. By doing a EMG and a Nerve Conduct study the condition of the large fibers of nerves can be determined and this can lead to a diagnosis of at least the type of PN and it may point to possible treatments. If these tests are not conclusive then you need to have a simple skin biopsy test that will determine if there is damage to the small fibers as SFN is treatable in most people. A spinal tap is also diagnostic for immune mediated neuropathies. As for medications, a doctor needs to work with you to find out what works for you as this is different for everyone..and sometimes one type of medication is better if combined with a second type of medication. Burning pain is treated with topical creams, but it is important that more work be done to determine what may be going on. Read everything in the FAQ tab as this is basic to understanding neuropathy. Please send an e mail to gene@neuropathysupportnetwork.org and order a copy of the DVD “Coping with Chronic Neuropathy” by giving us your mailing address. There are a number of books that would also provide lots of information, the one by Dr Latov AND Mims Cushing listed in the RESOURCE tab…under $15 each on amazon.com… But send an e mail as I then can give you more information. God bless.

  11. I have been having signs of neuropathy for a few years now, but ignored them as signs of getting old: charlie horses in my feet, muscle spasm, etc. Mine, however, is more self-induced – years of the gym and lifting heavy weights have taken its toll. (Smoking proabbly didn’t help either.) I recently injured my rotator cuff (three months ago) and noticed I woke up with the burning in my legs. I told my doctor (after reading on line) that I think I have neuropathy. He said mine, if that is the case. is a little different because it wasn’t brought on by an underlying disease. I haen’t been to a neurologist yet, as my PC is more concerned about the rotator cuff injury. I’m still concerned that the damage is permanent or could get worse as I age. (I’m 50 now.) Do you know if neuropathy can be kept in check if we change the conditions that cause it? I can live with the pain I have now, but I afraid of what can happen in 10 years.

    1. Marc: Neuropathy is not caused by old age as ALL ages including children are affected by the disease of neuropathy! There are over 150 causes of neuropathy and many different types depending on whether the large or small fibers are damaged or both; whether the axon (nerve) or myelin (covering over nerve) or both are damaged; whether it is affecting the sensory (feeling) or motor (movement) nerves and whether it is a polyneuropathy (affecting many nerves) or only one nerve. Exercise as in Gym and weight lifting do not cause neuropathy unless you have an injury, but many neuropathies are NOT brought on my an underlying disease. Genetic, nerve entrapment (rotator cuff injury may be an example) for nerves get entrapped by muscle, bones, veins and so forth, would be two good examples. Carpel Tunnel syndrome is an entrapment neuropathy. Get a copy of Dr. Norman Latov’s book for patients for under $15 as it is our bible on PN. Listed in RESOURCE tab of the website and get from amazon.com. All diseases for example cancer is caused by something but it is still cancer and many times we do not know what is causing the cancer. MS is another good example…. we know that it often shows up in the brain as liaisons, but still are not sure what causes it. To answer your question, yes neuropathies remit and nerves can heal (at early age it is faster) if the underlying cause of a neuropathy can be fixed or cured, but many times we do not know the cause as in the IMMUNE MEDIATED neuropathies when the immune system attacks the nerves or myelin covering. Finally chronic pain is not something to dismiss as the more it is ignored the worse it can get while patients for many reasons experience the levels of pain differently…. See the articles on neuropathic pain (pain from damaged nerves/not an external cause) and how it is treated. Pain untreated tends to get worse. Send an email to gene@neuropathysupportnetwork.org if you have other questions, as from there I can send you lots of information on diagnosis. Have you asked for a copy of the DVD “Coping with Chronic Neuropathy”? If not order from the website or send us your mailing address. Best with caring regards: Gene

  12. I’ve had pn for at least 10 years and it’s getting worse. About 15 years ago I had back surgery for a lumbar disk that was protruding. After that I had no reflexes in my legs. Could that be the cause of my pn? Now my balance is really bad and I have another slipped disk. Can a chiropractor help pn?
    I have very little pain but I have stiffness and numbness. Age 78.
    Vicki

    1. Vicki: Yes, entrapped or pinched nerves in the spine can cause neuropathy. Thank heavens you have very little pain, but then I do not know what ‘a very little means’ as chronic pain at any level tends to get worse if ignored. A chiropractor may help, depending but for me I would go to a Physical Therapist who works in an office of a doctor who is a neurologist or the surgeon who did you back surgery. At least get a recommendation from them. Please send me an e mail to gene@neuropathysupportnetwork.org so that I can provide more information and it gives me time to think about your issue. God bless. Gene

  13. Hi, I’m in really bad shape. Last June, a skin biopsy revealed severe SFN . In late Oct my Neuro started me on Lyrica and by Xmas I was prescribed the max dose for Lyrica. Occ I feel a little better for 1-1/12 hours then the nerves in my feet go crazy. It they were sounds they would rumble like a train going by a 1550 MPH. Very sleep deprived too since last Oct. Taking Elavil before bed, very restless, exhausted in am then spaced out until 4pm. Weird, complex dreams that seem to go on a long time. Last the Neuro left msg saying ⬆️Lyrica wouldn’t help the pain, said he was going on vac next week & otherwise hoped everything else was ok. I’ve been through so many other types of pain – really bad foot cramps, feeling both feet swell so very badly but they still look normal, crunching bone pain like steamroller running over my forefoot & the usual PN sym. Since I’ve had the skin biopsy & know I have SFN is their any treatments for me that I might still receive? The PN keeps spreading. My lower legs are involved now. Plus, I’m constantly on the edge of insanity. I’m 64 years old. Is this all I have to look forward to for the rest of my life? Just getting worse & worse. Forget gaining quality of life. Just give me a small piece of it! I’ll follow the research, books & exercise dvd options you suggested in this article. But I still appreciate hearing back from you. By the way, my PN is from having T2 diabetes for just 12 years. Runs in my family, 2 sisters, mother grandparents and my brother’s death at 43 years. Head had T1 diabetes. Plus over 5 years of severe complications.

    1. Mary: We understand!!! Yes, everything you describe is associated with neuropathic pain from diabetes. Since your neuropathy appears to be progressive, it is more likely than not that a trial of IVIg may be helpful to you. To understand IVIg see these articles: https://www.neuropathyjournal.org/category/why-ivig/ I will send you an article on SFN as immune mediated and treatable with IVIG along with one on the fact that for many diabetics a trial of IVIg may be very helpful to stop the damage. For the neuropathic pain please read these two articles in our Neuropathy Journal: https://www.neuropathyjournal.org/how-is-neuropathic-pain-treated/ Especially note the drugs used for cramps and the topical cream used for burning sensations as Lyrica will not in many cases help in this regard. Also note that more research is supporting the use of Alpha Lipoic Acid at dosages of 600 to 800 a day to reduce the pain (See Dr. Norman Latov’s book for patients). There is some promising research for diabetic pain on the horizon and we have our fingers crossed. Here is the article in that regard: https://www.neuropathyjournal.org/neuropathy-pain-relief-for-diabetics/ Finally the wrong type of exercise can make neuropathic pan worse and here is the like on that information and the DVD by Dr. Hansen: https://www.neuropathyjournal.org/exercise-for-neuropathy-dvd/ and https://www.neuropathyjournal.org/exercise-and-neuropathy/ You will probably have to copy and past the links here in your browser. At any rate I am going to send this same information by E mail and there all you need to do is click on the links to get to the information. God bless.

      1. Mary: Once I posted our reply, the links worked!!! I am still learning the technology! Gene

  14. I am extremely frustrated I have a 2 torn rotator cuff’s. I also have a few other muscles around my shoulder blades that have tears but I don’t need surgery according to my shoulder surgeon. I was doing a hobby that uses extreme upper body strength well For me because I didn’t have a lot of muscle tone in my upper body. I developed adhesive capsulitis. My first symptoms were that my achedand my neck. I kept complaining to the shoulder doctor that my hands really hurt and my lower forearm Especially the left felt like the bone ached. He kept telling me it wasn’t consistent with adhesive capsulitis. That I should have pain down to my bicep area but not all the way down to my hands. I had an EMG which came out normal. they did a MRI of my neck which showed 4 bulging discs., but no nerve compression the neck itself was straight and he said the question is because the muscles were so tight.but it kept getting worse my hand started to burn so bad especially my left hand sometimes it was cold and it would ache it would even look discolored from the other arm and sometimes it was really hot in Would Burn. He sent me for another MRI of my neck and at the Doral of my neck but that didn’t help. But at night sometimes I’d walk around and just cry because my hand would burn and you could almost see the red part of the hand where the pain that was different .it seem like when I woke up in the morning it would always be colder and you could tell the color between one after the other and then often on it will get colder hot usually heart right before I went to bed though. Hot always seems the worst.I had told my doctor also in the very beginning that I had tingling and mild aching in my left thigh that had started just a very short time after I was hurt. He said well that wouldn’t have anything to do with your shoulders it would have to do with your back so I put that on the back burner. The pain phone the and adhesive capsulitis was bad .The doctor told me it would be he gave me Vicodin but that didn’t give me any relief it just made me feel like I couldn’t stand being in my own skin all this energy I took it for one day and I stopped immediately. I called but they told me they couldn’t give me anything else they had given me a 60 day supply. I had some codeine with Tylenol from an ear infection and I use that but I started getting all these weird symptoms my left foot felt tingly and my lower calf on my left leg felt weird. It also made me very tired and I never take naps during the day but one I would laydown I would be jerked awake so I couldn’t sleep. I called the doctor my primary and he put me on tramado and the tramadol and some sort of muscle relaxer or made me have these twitches all over my body these tiny little twitches that one visible I could just feel them everywhere. In the jerking of my head in muscles is not getting any better. Then I went back and they put me to the shoulder doctor and they put me on oxycodone which was another terrible drug for me used it one day again felt like I want to jump out of my skin all this energy that I couldn’t stand to get rid of. Sorry for such a long story I had an EEG I’ve had a brain MRI with contrast I’ve had a brain CAT scan. It’s I can never take a nap no matter how tired I am because my head and my body jerk and wake me up. I went to a motor disorder neurologist who did all these tests and she said I had sleep myoclonus she explained it was from my brain being in constant pain that I needed to control my pain that the pain was the problem and that the pain was spreading. I keep my house at 73° the cold makes me feel like the pain is just horrific. My motor just order neurologist told me she thinks I have chronic regional pain syndrome but my hands don’t have that shiny huge swollen appearance so a pain doctor that I went to said because of that I didn’t.my motor disorder neurologist i’ve been to another neurologist at mass General he was a real jerk. He didn’t listen to a word I said he was too busy just looking at papers in front of him he said you don’t have any nerve disease be happy cause it be terrible if you did. He sent me to rheumatology for my upper shoulders which is not even the reason why I was seeing him I went there for my hand pain because my hands hurt so bad. He said I didn’t have chronic regional pain syndrome him again because I don’t have those red shiny hands I guess he said I had no edema but when I put on my rings they don’t fit any more .I only weigh 112 pounds so it’s hard to tell if my hands are swollen. My shoulder doctor thinks I have a chronic regional pain syndrome him. I don’t sweat anymore on my arms are used to sweat anytime I would take medications under my arms really bad but that doesn’t even happen anymore that stopped . I have been to numerous doctors but not gotten a definite diagnosis .The rheumatoid doctor I seen thinks I might have a small fiber polyneuropathy. I’m afraid to get a skin punch because I know if to puncture the skin and you have chronic regional pain syndrome and you could cause yourself a lot more nerve pain. I’m on gabapentin right now I take 1200 mg a dayit’s not really helping just a tad possibly. And I take anti-seizure medication three times a day but I still have jerking and twitching if I try to fall asleep for a short while and then I fall off. I feel like last year I had a life and now my life is over. I can’t drive because of my autobody injuries caused pain which seems to cause a cascade of pain. I feel so alone. I know you mentioned the IV for people with small fiber neuropathy he is very helpful. And I did call the small fiber neuropathy the organization and they said that that want to be for people with small fiber neuropathy that there’s no help except pain management which made me feel helpless in case it is that. My symptoms are very similar to what I read on chronic regional pain syndrome as well. Trying to figure out whether I should have a skin punch done but I know that makes chronic regional pain syndrome worse if that is what I really have. I wish I could see somebody who specializes in both. I have a doctors appointment with somebody who supposed to be a specialist in chronic regional pain syndrome him in a pain specialist but I heard he over diagnosis CRPS don’t even know what to do anymore. i’m alone in the house every day and I have to be careful with how much or what I do because I pay for it I do physical therapy every day though for my shoulder and then try not to push it too hard because I know that that will make everything worse. I keep my house it’s 73° the cold makes me feel like I can’t even cope with the pain.Thank you for any help you can give me

    1. Tina

      Wow, you have really been around several circles in trying to get help.

      First let me assure you that the skin biopsy for small fiber neuropathy is a very SIMPLE quick in office procedure so speak to the doctor and consider giving the information on ordering the kit from our website at : Skin Biopsy for diagnosis of small fiber neuropathy https://neuropathyjournal.org/skin-biopsy/

      Couple of thoughts, if the neck muscles are TIGHT from whatever reason, a good physical or occupational therapist who would focus on the tight neck muscles could possibly help, so speak to your doctor about this option at least until you find out what is going on.

      The fact that untreated pain only makes pain worse and increase is well known. If the Gabapentin is helping then somewhere you have damaged nerves and neuropathic pain and that should be a clue. None of the medicines for neuropathic pain work 100%, but if they reduce the pain someone this is good as less is always better. Not sure if you said you are taking another antiseizure medication, but you might want to speak to the doctor about adding Nortriptyline as this also is used for neuropathic pain and will help you sleep if taken at night. There is also a good medicine for muscle spasms and you may want to speak to the doctor about Cyclobenzaprine as it relaxes muscles and stops spasms and the twitching you are experiencing.

      Do not dismiss getting help from a psychologist who perhaps specializes in BIOFEEDBACK and they help you release the natural pain killing chemicals in the body to help reduce your pain!!! In addition they can help you sort it out and help reduce your anxiety and fears. You have a real physical problem but the body is a WHOLE and the physical problem especially the pain is causing many problems including to the emotions. So do not dismiss this kind of help as you are being overwhelmed by all the issues that are not being addressed.

      Finally, if you will send us your mailing address, we will send you a copy of our DVD “Coping with Chronic Neuropathy” as this Neurologist endorsed DVD has many ideas that you may be able to try which will help you release your coping skills.

  15. I was diagnosed with neuropathy in Feb after I woke up and couldn’t walk. At first they said Gilliam barre syndrome but eventually said neuropathy. I had a bad fall down the steps and developed a hematoma on my head or brain that had to be removed. My feet feel like they are asleep and tingling feeling. They have recently started shaking and jumping by themselves. My hands feel like they are asleep and tingling. I am in a rehabilitation center right now but suppose to be short term. I had a emg and it confirmed neuropathy. They said from 1-10 10 the worse mine is a 8. I am on a lot of medicine. Will it get better? I haven’t walked since Feb. I lost my home because everything was upstairs bathroom bedrooms etc. So I am trying to find housing before I leave here so me and my children can be back together. This condition has made me depressed which I take medication for now. I also had the gastric bypass surgery about 4-5 years ago and I heard maybe that has something to do with it. Is that possible or could it have been from the fall and the hematoma? I am still in the rehabilitation center as I write you. I have been here almost 30 days. Trying to figure out where my children and I are going to live when I leave here. Thank you for any help you can give me. Sincerely, Dena from Norfolk, Va

    1. Dena
      For the record Guillian Barré Syndrome (GBS) is a form of acute neuropathy that comes on suddenly and sometimes the symptoms go away unless you become seriously ill and require hospitalization but that usually occurs within 60 days or less. So in your case, the form of neuropathy you have would now be termed chronic. While only a doctor can determine if the hematoma on the brain can cause your symptoms, injuries do cause the symptoms of neuropathy according to Dr Norman Latov MD PhD. For the record surgery such as gastric bypass can also cause neuropathy but since this was a long time ago, it is more likely due to the fall. If the hematoma did not require surgery then there is a good chance that the body will absorb the blood within the hematoma and the chances for recovery are very high. It may take six months or so for your body to recover and I am assuming that you have had a concussion. The first few months after the concussion are the worst and you may want to speak to a Psychologist about any symptoms from the concussion that you do not understand and they can really help you feel better about any symptoms from a concussion that you are worried about. Symptoms from a concussion resolve but do so slowly.

  16. This is the first I could find about the neuropathy symptoms coming & going. My husband’s seem to worsen spring & fall, sometimes accompanied by an illness, sometimes not. His current bout has been going on for 2 1/2 weeks and is severe. He has upped his does of pain meds by his doctor’s suggestion, neurologist put him on cymbalta which seemed to immediately cause MORE weakness and new weakness in his hands. He stopped after 5 days. He had an IVIG yesterday, and we are hoping for some improvement maybe in movement as he can barely get from chair to bathroom now just in the past 2 1/2 weeks. What a horrible disease. With no cure nor real relief.

    1. Janis: Will send an E mail with information but be patient I am behind two weeks worth of work in helping patients.

  17. Dennis
    November 14, 2016 at 1:14 pm
    I have been recently diagnosed with idiopathic neuropathy, I’m having symptoms all over my body tickling sensation’s numbness prickly pins and needles, even in my ears have a constant tickling sensation. I find it hard to sleep at night I’m having trouble dealing with it. I have discussed this with my primary doctor and he is seeking a referral to either Shands hospital, or mayo clinic in Florida. I currently live in the Orlando area of Florida. Is there anyway you can recommend the best neurologist to help me with this? In Orlando Florida or maybe in the mail clinic or Shands hospital in Florida?
    I stumbled upon your website is been extremely helpful and a blessing I’m thankful for all your efforts! I’m sure you have been a tremendous help for so many who have been suffering from this. Thank you again and I’ll wait on your response. May God bless you richly!

  18. Hi my name is merri im 28 i started having pain 2 years ago. I kept getting tested and tested all negative from ms on. They just fpund out a month ago I have small fiber neropathy by taking skin out of my legs they were at 2.2 in my lower leg and 3.2 in uper thigh in past two years it has grown to my face actully it is only my right side if you were to cut me in half my left completly fine I hurt so bad what helps your pain I get massages lay on heating pads cause my body almost looses blood flow on top of really bad pain.. On pain medication witch helps kinda. What help you??

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