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

Discussion in 'General Health & Wellness' 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. TwoCatDoctors

    TwoCatDoctors New Member

    I would like you to read the safe site below that is all about pheripheral neuropathy. About 10 years ago, I had very bad pain and was having trouble walking and I saw a special orthopedic surgeon. It got so bad it impacted my bladder and I had to be placed in the hospital on emergency. The nerves in my spine were leaning somehow and creating all the havoc.

    I had a laminectomy and that helped tremendously and gave me back the ability to walk and stopped the bladder problem. But it was through the help of a very experienced back surgeon that we discovered (through MRI) what was happening, and then when it suddenly impacted the bladder, he put me in on emergency right away to have surgery done.

  3. Radioactive1

    Radioactive1 New Member


    First just let me say how sorry I am that you are going through such a terrible ordeal in getting some relief. I know how frustrating that can be.

    I'm wondering if you might have been in a car accident or other type of accident at some point that may have triggered this reponse from your body. My Neurologist told me that in 60% of cases like this, the problem can be traced back some an earlier tramatuci event as the root cause for the condition. In my case, was re-endedd 2 years ago.

    I suffer from MS, Fibromyalgia and a condition called Occipital Neuropathy, which is somewhat similar to your peripheral Neuroapathy. Where your condition affects your peripheral limbs, mine is specific to the Occipital nerve - the nerve that runs from the base of the neck, and up over the head to the eyes. My condition causes almost unrelenting pain in my neck, which radiates up over my head to my eyes. I have very painful migraine-like headaches that are very debilitating.

    There are several things that I can recommend that have been helpful. First, two medications that you may want to look into - Cymbalta, and Lyrica. Cymbalta is an antidepressant that is commonly used for people with MS and Fibro because it also seems to have qualities that assist with the pain related to these diseases. Lyrica was developed specifically as a disease modifying drug to treat Fibro.

    Beyond that, I wear a TENS unit. This is an electronic device that delivers low-level shocks to the body (you control the level, settings, and location). I've found that the TENS is very effective at disrupting the pain signals to the brain. The body is so buy dealing with teh shock sensations that the pain becomes secondary.

    The last thing I'll say is that it is critically important to stretch and move the area where you are experiencing pain. Doing something like Yoga or PIlates can be of tremendous help.

    I hope that these ideas help you and I wish you luck at getting your condition under control.

    Believe me, I know that it's no fun to have to suffer with pain all the time.
  4. kimid

    kimid New Member

    I have the periphal neuropathy since Jan. 2011 non-stop. I have had two nerve tests and I too had the MRI and have back issues but this PN is related to the Fibromyalgia and CFS/ME the Dr. thinks. They don't know, I have found no medication to take this kind of pain away......just awful because you never get relief. Mine has gotten to the point that my hands and feet are numb alot and I drop things, my hands can't grip or hold anything heavy. I have cut my fingers and didn't feel it. The neurologist sent me on my way saying there was nothing he could do about it. If you find something that work Elaine, I sure want to know! No one knows how we feel until you feel this kind of pain understands what it is like. I am afraid in some cases like myself it can get worse. I wish I could have told you something better in response all I can say is your not alone, I know how you feel.
  5. keke466

    keke466 New Member

    I have FM,degenerative disk disease and more and I suspect CFS and I think I have peri neuropathy. My feel hurt so bad I could just scream. I have all the tingling,burning,etc thats been mentioned. In the last couple of weeks my legs and feet have started swelling while sitting. My legs have been swelling while standing and walking for awhile. I work PT at a small hospital and man it nearly kills me to walk and stand.

    I'm waiting for my insurance to start again,it's stupid state ins,so I can go back to the dr and tell her all this.
  6. songbirdpoet

    songbirdpoet New Member

    Hi Elaine,

    I have had Fibromyalgia for 15 or so years. Years ago, I, too, suffered with extreme
    burning. It was my feet at that time. I was trying all sorted of gizmos/treatments
    for a substantial heel spur. Nothing worked. The burning was so intense that I went
    for the heel release surgery. Within a year, I knew it was the right decision.

    My legs and hands always feel heavy with some pain. I also have periodic 'shocks'
    in my hands and feet sometimes radiating to the legs (from feet). Currently, I am
    under the care of a podiatrist as my right foot is troubling me. I cannot walk for
    exercise (in shoes) without experiencing bad pain. I have reverted to socks/flipflops
    most of the time. Ironically, playing tennis recreationally and using the glider with
    socks does not set off anything.

    I have used the TENS UNIT which does bring relief & Biofreeze which does help. But
    the issue of pain when walking in shoes still exists. Some shoes are a little better
    then others. Interesting situation.

    Right now, I had my first cortisone shot. Hopefully, this will reverse the pain. Go
    back in a month. My podiatrist has not mentioned Peripheral Neuropathy but
    says that if it is just inflamation (could not tolerate oral medication) the cortisone
    will help. If not, I need further testing and possibly surgery.

    My heart goes out to you, Elaine. Mine has never gotten that bad with the legs.
    But it is most uncomfortable feelings with the legs especially as the day wears
    on. My sleep is compromised but do not have restless leg syndrome.

    I do think that mild to moderate exercise, relaxation (whatever that means to the
    individual), and proper nutrition are valuable. Have you ever had Acupunture? I
    did for awhile (pd. out-of-pocket $40 each time) for as long as I could afford. It
    did help me somewhat.

    I am trying a product called "Nerve Support Formula" that has a very different
    formulation for the B vitamins--they stay in your system giving you better
    focus, energy, and Lord willing, will help with the neuropathy. I am giving it a good

    Hope you are doing much better these days.