** Peripheral NEUROPATHY ** == Anyone Know It??

Discussion in 'Chit Chat' started by S-Elaine, Jul 19, 2011.

  1. S-Elaine

    S-Elaine Member

    Hi all,

    I have been severely struggling with my health again since the beginning of June.

    This past Friday, I had an appointment with my FMS Doctor & due to the “burning / like on FIRE” pain started up in my legs again.

    Made it to the Doctor’s office & my legs collapsed as I was hanging on the front Reception Desk. From there, I went to the Hospital for testing.

    ~~~~~ Peripheral NEUROPATHY ======== is what they found.

    They don’t know the cause, so they are treating the symptoms for now. I have improved a little bit, but my world has been turned upside down & I can barely take care of myself.

    I ONLY leave the house if I have a doctor’s appointment. Can’t for anything else because I never know when the intense “Burning / Shoot FIRE Pain” is going to come and run through my legs. My legs can collapse too,

    I originally thought it was a “Flare Up”. I never had anything like this before so I don’t think so.

    Additional details, I will just list:

    == I had a Retention of WATER of 20 pounds in 2 days.
    == I am still on the “Water Pill” because the swelling in my feet & legs started to occur again.
    == I am off Lyrica. It wasn’t working for me anymore and the side effects weren’t worth it.

    == Pain Medication, they haven’t found anything that really works.

    == An Anti-Inflammatory medication was tried. Not successful.
    == A Corticosteroid medication was tried. Not successful.


    == Blood Work checking my Potassium Levels & looking for anything else.

    == MRI of my Lumbar Spine. They found 2 discs “slightly fractured”, but the ER Doctor said ------ it should not be causing the horrific pain I am in. ---- “Uh, well something is!!”

    My Pharmacist told me Peripheral NEUROPATHY affects the Nerve Endings and usually a single body part instead of Fibromyalgia, which affects the whole entire body.

    Bad Circulation in my feet & hands has been a problem for me for YEARS & doctors always dismissed it.

    I am being referred to a ------- NEUROLOGIST now for Treatment and addition Testing I would imagine.

    ******* FIRST AVAILABLE Appointment is the beginning of August ~~~~~ Almost 2 full weeks away.

    My current FMS Doctor will have to monitor and continue to treat me until this is sorted out.

    8 Weeks is how long this has been going on for. So many medication changes were made in the meantime & there has been no improvement.

    My world has become a very small one now. I am not able to take care of myself anymore or function in the capacity anything like I use to before.

    Severe confusion, difficulty even trying to follow a ------- “To Do” list is what I am left with for now.

    I am struggling so hard and trying to work through this because I miss having the ability to do things, tasks, or life in general.

    My brain is CLEAR this morning, so I decided to type a message and ask …….

    ……… Anyone know anything about this? Thoughts, ideas, guidance, direction, similar experience is what I desperately need.

    Thank you so much, if you can help.

    Best wishes to all,
    == Elaine[This Message was Edited on 07/19/2011]
  2. stick2013

    stick2013 Member

    Have you looked up the side effects of Lyrica lately????? It causes tingling and burning in hands feet. If it can cause it in those I bet it can cause it in legs too..... Good thing you are off of it.

    Many of the medications today cause MANY of the *new* issues we get after starting a med. Side effects are nasty.....

    [This Message was Edited on 07/19/2011]
  3. Mikie

    Mikie Moderator

    My Mom had non-diabetic peripheral neuropathy and the burning and numbness drove her crazy. One thing which helped was to sit on the side of her bed when she woke up and kick her legs up and down. She and her best friend both had it and said if they walked in the morning that it helped. It was worse at night. Their docs gave them no medications.

    I hope and pray they can find something to help you.

    Love, Mikie
  4. lgp

    lgp Well-Known Member

    Do a little research on biotin. I started taking it not too long ago because my hair was thinning, and I noticed that the burning in my hands and feet stopped. It is known to help those that suffer from neuropathy.

    Sorry this is happening to you...keep us posted on your progress.

  5. Granniluvsu

    Granniluvsu Well-Known Member

    Oh dear sweetie, you are certainly having a time of it. Hope some of these things can help you. Hopefully, the Biotin, GSE might be able to help.

    That's interesting to about the Lyrica. I have been wondering about going on it but haven't due to already being on 2 b/p meds., thyroid meds, generic klonopin and Flexeril to help sleep and bunch of supps. I figure less is better if I can keep it that way. I have cut my generic klonopin to 1/2 at night with the Flexeril. I'm already taking to much stuff so guess I will do without it especially the more I hear about all these other meds.

    So glad you came back on to tell us how you are doing and to ask for help. There are so many people here that have so much knowledge. I hope you will start to feel better soon. I wish I had some words of wisdom for you but I can't think of anything. Hopefully some of these hints will help you. That is very interesting about the Lyrica. Wonder how long these symptoms of burning, etc. keep on after stopping the drug. That would be very interesting to find out if you can !!!

    Get well soon my dear young friend. Lots of hugs coming your way.

  6. Mikie

    Mikie Moderator

    I recently started taking a supp with a lot of biotin in it and I couldn't get to sleep. I was taking it first thing in the morning at half the suggested dose. I had to quit as I was a zombie. I think I'll try again and hope that this side effect will go away with some time. Strangely, even though I wasn't sleeping, now that I've stopped it, I have much more energy. Was it the supp? The body can't store biotin so it could be one of the other ingredients. Strangely, people take biotin for sleep. Could be it's having a paradoxical effect.

    If I can tolerate it, my skin, nails and hair should improve although, I'm not having problems with them. Ever since I started using the Adrienne Arpel Signature A skin care products from HSN, my skin has really improved. After my topical chemo for skin cancer all over my face, I've been using these products as they contain what the dermatologist told me to use. Actually, my hair is dry because of the Sjogren's as is my skin. I've used topical products to help but perhaps the biotin will work from the inside out. That is, if I can tolerate it.

    Love, Mikie
  7. ksp56

    ksp56 Member

    Hi Elaine...so sorry you are having to deal with this also.

    My MIL has the non-diabetic PN also. It started over 8 years ago with swelling in her feet. Saw every doctor there was. Her heart was fine, so they put her on an anti-diuretic. She then started with some pain and burning from lower calves (sp) to feet. It does affect more of her legs now.

    She was finally diagnosed with PN two years ago. Unfortunately, her's has been progressive. If she had followed her PT in the beginning, it may have been a little better. But who really knows? I hate being such a 'downer'..just sharing what I know of it and how I've seen it affect my MIL.

    Seeing a neurologist is the right doctor to hook up with. After tests, for many other things, they concluded my MIL had PN. In her case it is something that can happen as we age. She is 81. She's been on Lyrica, I think, and some other things. After many years she stopped her diuretic and it helped a little. Go figure. Also, I don't know how old you are so please don't take offense!

    She is now using a walker. Her brain sometimes forgets to remind her legs to move. For her age, she is still very 'with it'. I would be happy to find out what meds, etc., she has been on in the past, if you would like. I know what helps someone else, may not help another. Many meds she has tried are the same you've been on before and haven't worked either. It will be good to see the neuro doctor and see what he has to say.

    I am so sorry this has confined your life even more. The fibro is horrid all on it's own. And now to possibly have to deal with something else must be frightening and so frustrating.

    Please keep us updated. If there is anything I can do, or if you just need to vent; please know I'm here. I have been on the boards since 2003, and check in from time to time. I check more frequently to see how you are doing.

    Many gentle hugs,

  8. lgp

    lgp Well-Known Member

    The biotin product that I take is a supplement I purchased from HSN...Andrew Lessman's Healthy Hair Skin & Nails plus Pomegranate. It has a multitude of other vitamins in it. Check out the label on their website.

    I have to say, since I've been taking this supplement, it has signifigantly improved my hair, skin, and nails. My feet and hands dont' burn at night anymore, and my digestive system has hugely improved!! And I sleep great for the most part. I believe I may have been lacking in various B vitamins, and this has remedied that. Take a look at the label if you have a moment, let me know what you think!!

    [This Message was Edited on 07/29/2011]
  9. spacee

    spacee Member

    Benfotiamine original or with added B vitamins.

    This was in the newspaper in the Herbal Pharmacy column. My huz wants to try it
    for the pain in the sole of his foot.

    There is one study done of it for the diabetic neuropathy which isn't the kind you have
    but it is still nerve endings. Found a significant benefit for pain.

    If you just google Benfotiamine, you will find a non-profit site about it. But it does sell
    the compound too.

    Hope you find something that helps you!
  10. momsherry

    momsherry New Member

    I have had neuropathy in my feet and hands for yrs. Now it is also in my legs and arms. ONe time I got the wrong med and the top of my head was burning really bad. The pain makes my feet and hands go numb, and toes get stinging pain and pins and needle pain. But the burning pain is really bad. My dr said it would start going up my legs and arms and it did. He gave me neurontin for the nerve pain. For yrs I was taking Andrew Lessman*s vitamins and supplements. I took the Circilation & Vein Support for healthy Legs, it helped the circulation and the restless leg syndrum. I took 4 a day. But it doesn*t work like it use to. My primary dr. gave me Ropinirole HCL for the horrible restless leg syndrum. It works pretty good. Glad to have it . RS can drive you crazy. Lessman has all good stuff. Wish I had the money to keep up with his different vitamins. Well my night meds are setting in. Hope this can help someone. I really feel sorry for people with the neuropathy pain. It kills my feet, for many yrs now. Elaine, I really hope you get some relief. Take care
  11. Mikie

    Mikie Moderator

    It is the Lessman vitamin which you described that I bought. I stopped taking a vitamin B supp and am sleeping OK now. I think I just had too much of the B's. I'm glad the Lessman product is helping you. I had to stop taking everything for about a month while my docs tried to figure out what is causing me such discomfort in the pelvic area. Still no answers but am off their meds. I have to see my urologist and I'm starting to wonder whether it's intersticial cystitis. Both my daughters have FMS and one has IC.

    My face was covered with skin cancer and I had topical chemo which burned it all off. I figured that the vitamin would be helpful for my skin, which now looks great. I'm supposed to use Retinol and vitamin C skin care products. The ones from the dermatologist's office and spa cost an arm and a leg. I got mine from Adrienne Arpel on HSN for a fraction of what they cost from docs and spas. My skin now is amazing. I could use an neck lift but can't afford it. I had one about 8 or 9 years ago but they don't last. I was planning on returning to sales and my illnesses had left me looking old and haggard. Well, the best laid plans...

    In any case, thanks for the feedback on the vitamins. I'm back on them and hoping for great things.

    Love, Mikie
  12. Jonsparky

    Jonsparky New Member

    I have had PN for around 25 years, my dad also had it. The neurologist called it hereditary, he wanted to do a $3k DNA mapping, but said that even if it is diagnosed there is no cure, so I graciously declined the test, as I knew already I had PN! Accupuncture and moxibustion helps some, especially to get the circulation up. Lucky for me it has not caused weakening of the muscles, just pain... It is worse in the summer, in the winter they are just cold and numb.
    Good luck!