ANYONE AND EVERYONE, HELP

Discussion in 'Fibromyalgia Main Forum' started by Fibrotears, Apr 9, 2007.

  1. Fibrotears

    Fibrotears New Member

    Hi, you guys!

    I've been so busy with my studies and my ILLNESS that I don't write so often anymore.

    Well, I'm in need and you guys are always here for me!!

    I'm in sooooo much pain I can't stand it anymore. The newest thing: I CAN'T SIT, AT ALL. Not even on my ring cushion!!!

    So, I couldn't attend my classes this quater, but I tried to keep up, thanx to my friends, even though I weren't in class. Oh, and my GP got this idea in his head that the painkillers are making my pain worse!! So he withdrawed it! I went trough hell because of the withdrawel symptoms!!! So for TWO whole weeks I couldn't keep up with my studies. This means that while all my friends and other student are resting right now this holiday, I have to work to keep up!!

    Oh, and he's theory didn't work, I was in more pain!!!!

    I have a BIG decision to make and it just feels like I'm in a corner and the walls is closing in on me and I don't know what to do!!!

    I have I few options:
    1)Presacral neurectomy: Meaning they cut off the nerve supplying the uterus, vagina etc.

    I'm to scared to do this because the doctor can't even quarantee that it will take my pain away. So, why cut off a nerve, with important functions, if you don't know the outcome!!!

    2) Hyperbaric oxygen treatment: But the doctor never ever in his life heard of levator ani syndrome and my guess FM as well. So he was very sceptical but said that he will search for articles about it. Because everything in medicine is about EVIDENCE-BASED-MEDICINE. No evidence, no treatment!!
    He will contact me after Wednesday. I hope with good news.
    Because if you think about this: the rugby players injures there muscles, the are put in the hyperbaric chamber and they are fit to play the next game .... duh!!!

    3) The other options I got from an Japanese, I think, doctor.He suggested that I go to a cancer specialist and that he / she prescribe the RIGHT painkillers, which is a good options except for the fact that I don't want to use painkillers for the rest of my life!! I'm 22 now, 10 years down the road or even sooner my liver and kidneys will fail! And then! So this is not a permanent solution...

    Please comment on which of the 3 options I should try.

    I'm in sooooooooooo much pain and can stand it!!

    Oh, and if you are not in to much pain, can you please search the following on the net:
    levator ani syndrome+hyperbaric treatment

    I could only find one article and do not have the strenght to search for more and you guys uses other search engines.

    With love

    Anja
  2. Engel

    Engel New Member

    I would go with #2 or #3 ... forget that #1
  3. shanos

    shanos New Member

    hey Anja,
    iv done a few searched for you on this subject, and found (what i think may be) a fourth option; high voltage electrogalvanic stimulation of the levator ani by means of an intra-anal probe.
    now i know this may sound a tad crazy (and scary?), but iv found a few research reports where electro stimulation of the levator ani muscles has had amazing affects at relieving pain; One study in Singapore found that within 5 sessions of the treatment, 90% of patients claimed to have good results; with 36 out of the 45 claiming to have total pain relief at the end!
    Furthermore this treatment process claims to have no side effects.

    Singapore study
    http://www.prostatitis.org/las.html

    South Korean study
    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15526112&dopt=Abstract

  4. Didoe

    Didoe New Member

    Anja
    You're 22, I hear your pain
    Please...with your life in front of you, think so very carefully before letting doctors do something as drastic as this unless they can give you complete list of future effects in having physical relations, bearing children and any other issues of importance to women.
    Even if you're thinking now, that'll never be an issue, its the PAIN, please try to find other options and leave your future open...a prince may be waiting.
    good luck to you
  5. mujuer

    mujuer New Member

    Are you still working for the fibro dr.? If so, how come he is not treating you? I saw this in your profile. I think you need to see a pain specialist to get you some pain meds. That was cruel of your primary to take away your pain meds. I have more luck with a muscle relaxer myself for the pain.

    It breaks my heart that you have this illness. You are the age of my youngest child and I can't imagine as he is in college also. That is awesome though that you are trying. It may take you longer then others but you will get there.

    My husband wants to make me a hyperbaric air chamber as well. You are right, there are not many articles out there but fibro pain is like having the bends so it makes sense to us.

    Until you get some relief from med's try sitting in a hot bath for as long as you can. This will make the muscle spasms stop immediately. They will come back and it's a temporary fix but it will at least give you a break from the pain I hope. Keep us updated hon and you hang in there. P
  6. Fibrotears

    Fibrotears New Member

    No he's history!

    He dangled money in front of me and prestige but nothing ever came of it.

    He was supposed to pay me R5000 per month but he never did.
    He's last instructions was to wait for instructions!!!So I did but nothing happened. I wasted a whole year waiting for his 'instructions'! He just used me.

    I went to the department of labour because I can't afford a laywer but they couldn't do anything. So the bastard got away with it!!

    I never ever want to see or hear of him!
  7. luvinbo

    luvinbo Guest

    HI ANJA,SO SORRY TO HEAR YOU ARE STRUGGLING SO MUCH.I THOUGHT I WOULD WRITE YOU,ASI ALSO HAVE RICKETTSIA-CONORII+++.I GREW UP IN SOUTH AFRICA,BUT HAVE LIVED IN NEW ZEALAND FOR THE LAST 10 YEARS.I GOT GLANDULAR FEVER 5 YEARS AGO,AND NEVER RECOVERED,AND EVENTUALLY TOLD I HAD M.E. WITH FIBROMYALGIA.LAST YEAR I WENT TO SEE A NATUROPATH
    SHE PUT ME ON A MACHINE CALLED QXI(QUANTAM XEROID INTERFACE)SOUNDS A BIT WEIRD,BUT NOT.THE MACHINE SCANS YOUR WHOLE BODY FOR 3 MINS,AND THEN BRINGS UP EVERYTHING GOING ON ,BACTERIA,VIRUS,PARASITES,IT EVEN SHOWS WHATS IN YOUR BLOOD,AND % TOO.WELL,EVERY DIFFERENT TYPE OF RICKETTSIA, AND LYME DISEASE SHOWED UP.IT SEEMS ITS ALL TO DO WITH QUANTUM PHYSICS,WHICH I DO NOT UNDERSTAND.IT SHOWED RICKETTSIA AND MYCOPLASMA IN MY BLOOD.FINALLY AFTER ALL THESE YEARS,THERE WERE SOME ANSWERS.I STARTED RESEARCHING ON THE NET,AND FOUND DR JADIN,WHO I SENT MY SERUM TO FOR TESTING.MY RESULT WAS RICKETTSIA CONORII +++
    MY GP TESTED ME FOR MYCOPLASMA,AND THAT CAME BACK REACTIVE,MEANING IVE HAD IT,BUT SUPPOSEDLY NOT ACTIVE.I AM NOW BEING TESTED FOR LYME DISEASE,AND WAITING FOR THE RESULT.I STARTED MY ANTIBIOTICS BOXING DAY,SO I AM COMING UP TO MY 5TH TREATMENT.ARE YOU STILL ON YOUR ANTIBIOTICS?
    I HAVE BEEN PRETTY ILL AFTER MY LAST 2 TREATMENTS,REALLY SORE JOINTS,TERRIBLE BURNING IN MY LEGS AND ARMS,TINGLING IN MY HANDS AND TOES,ONLY THING THAT HELPS IS HOT SHOWERS OR BATHS,OR WHEATIES IN BED.DO YOU GET BURNING TOO?
    ARE YOU IN CONTACT WITH DR JADIN,JUS INTERESTED IN WHAT SHE HAD TO SAY ON THAT PROGRAMME YOU WATCHED.I HOPE YOU ARE FEELING A BIT BETTER,I WILL PRAY FOR YOU.MEL