Results 1 to 9 of 9

Thread: ALMOST had myself convinced "It was all in my head" then... worst flare yet!

Threaded View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Aug 2011
    pasco county florida
    Thanked 0 Times in 0 Posts

    Default ALMOST had myself convinced "It was all in my head" then... worst flare yet!

    I truly have felt wonderful for the last few months. I had a narcotic drug problem from which I have been sober for 8 months through methadone treatment. I take a low stable dose everyday for pain, and drug abuse treatment. I was diagnosed about 6 months ago but had been having symptoms mildly starting about 6 years ago(the birth of my 1st son)They included sever fatigue, numbness in limbs, muscle pain & weakness, headaches, joint pain, stayoong sick , cuts not healing well, bleeding for hours even w/ pressure applied, URI, UTI, dizzy spells, balance issues. All of which I attributed to my growing party girl persona and the drugs I was on and off of. I did not see a doctor until I had gotten my life together at the age of 25 (about year ago) They then progressed to moderate & severe about 2 years ago all the previous symptoms plus hair loss, redness on nose/cheeks/chest, skin discoloration, loud constant poping of bones, strange skin sensations /burning/pain/tingling, eyesight and eye trouble floaters/sparks/double vision, chest pain, out of breathe, severe candy cravings, instant sudden severe swelling of the ankles feet, and calves ect ect.... Doc says he thinks its lupus because of my abundant cocktail of symptoms and my odd out of the blue massive pulmonary embolism (which almost killed me) when i was 22. I was devastated to hear the news, my Rheumy said he would continue to look for other answers and continue to rule out other mimic disease diagnoses, but that he was almost positive. Yet , no meds i hear everyone else is on... I'm only on ibprofen, neurontin (which i beilieve has also improved my moods as well as numbness and some pain) and the 70 mg of methadone. Anyways, DID NOT WANT TO ACCEPT THIS DIAGNOSIS BECAUSE MY COUSIN DIED AT AGE 42 OF MASSIVE KIDNEY FAILURE FROM LUPUS AND IT SCARED THE SHIT OUTTA ME. For the past few months I have felt ALMOST pain free, mentally balanced, focused and goal driven, dare i even say... HAPPY!?! So in my denial of lupus I had almost convinced myself that for the lat 6 years I had made it all up in my head, been faking it, maybe even be cured. Maybe it was just a vitamin deficeincy and the vitamins I've been taking lately cured me!?! Ha! If I only new what was to come.
    About 3 days ago I said out of nowhere, "oh no, its coming.. and its gonna be bad!" Don't ask me how I knew or where that came from I just did. Also things had been happening to me for a week that I have never experienced before. Well I have but not in this way , not this severe. I was dizzy but on top of that, I was constantly bumping into doorways, falling, tripping, dropping things, my perception was WAY off and my balance? FORGET ABOUT IT! i DID THE TEST THE DOC GAVE ME A FEW MONTHS BACK, PUT MY HEAD BACK , CLOSED MY EYES AND TRIED TO LIFT ONE FOOT IN THE AIR ABOUT KNEE HIEGHT. i IMMEDIATLY STARTED VIBRATING side to side and fell over (on the bed) It was so strange. I couldn't concentrate or remember the script for the new telemarketing job I just got 2 weeks ago. I new something was off, something was coming, and that something was gonna be bad! Low and behold 3 days later I almost couldn't get out of bed. I was forced to quit my brand new job(first job in 2 years, family of 5 to support) My pain is excruciating and it feels different like I have a huge rubber band on the upper part of all my limbs cutting off the circulation. The kind of pain u feel when you leave a hair tie on your wrist too long and it starts throbbing and sending lil shocks of pain down your fingers, except all over my arms and legs. I have little bursts of blood vessels all over my ankles and feet. My hips and buttocks are worse than ever and I'm falling asleep mid sentence right now and having to refocus on what im writing and thinking about. I took 1 flexaril (muscle relaxer which i stopped taking because they made me feel more tired) its helping but i really dont want to have to continue taking them but what am i supposed to do? The methadone isn't touching the pain and I just came to the realization that if i cant remember a simple tole marketing script how am I going to start going to college next year for a BS in psychology? I have gotten my life together and made such an effort and triumphed over so many demonds and now something that is completley out of my control, out of my hands is going to take me under gain.... I dont know what to do.... anyone with advice, similar stories, or comfort would help. Thanks so much for reading my long ass post! Im trying to keep my head up...
    Attached Images Attached Images

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts