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

Discussion in 'Fibromyalgia Main Forum' 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. 3gs

    3gs New Member

    Iam so sorry for what you are going thru. Sorry I dont have any ideas as ironically Iam going thru the same thing,only my arms and spine are also involveld.

    It is nerve pain. My pain meds arent touching it. Has your doc suggested any of the drugs they use for diabetes? Neronton(sp).

    I too am trying to get into a neuro. When they saw the dicscs did they say anything about the nerves being pinched or invovled?

    Treatment I have tried-burning the nerve endings-didnt work
    injections didnt work.
    rub on pain meds(icy hot kind) gives temp. relief.

    hope more people answer-
  3. mbofov

    mbofov Active Member

    I'm with Caledonia. B12 deficiency can cause nerve pain and all sorts of other symptoms. My sister who is a vegetarian told me she'd been having weird pain and numbness on different parts of her body. Well, B12 deficiency is very common among vegetarians. She has crap insurance, would cost tons to go to the doctor, so I suggested she try taking B12 and her symptoms cleared up wthin a week.

    Check your latest CBC blood work - that's the comprehensive blood work usually done once a year where they check red blood cells, white cells, etc. Look at the item labled "MCV" - it stands for mean corpuscular volume, referring to the size of red blood cells. If this number is high (even if in the "normal" range) it can indicate a B12 and/or folate deficiency. It is very important to take adequate B12 with folate, as taking folate alone can mask a B12 deficiency.

    But even if the number isn't high, you still can have a B12 or folate deficiency. I agree with Caledonia that it would be good to look into both Richvank's and Freddd's methylation protocols. I did better on Freddd's protocol without any of the detox-type symptoms I had on Rich's protocol. It hasn't cured my CFS but has improved my energy somewhat, although I still crash. I found I don't do well with folic acid, which is synthetic. My energy started going up when I started taking Metafolin by Solar (on Freddd's protocol) which is a bio-available form of folate. And of course lots of B12.

    Low B12 can cause difficulty concentrating. It might even account for your feeling of poor circulation in hands and toes, which might be nerve pain instead.

  4. Mikie

    Mikie Moderator

    See my response on the CC Board.

    Love, Mikie