Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Fibro? MS? Or Something Else?

I made a list of the symptoms that I have been having over the last 6 months to reference, at my doctor visits. Some of these are symptoms I’ve had forever (which I have always attributed to my previously diagnosed Fibromyalgia); some I have had several times before but I didn’t realize there was a connection; and some are entirely new to me.

Basically I just want to find out what the Hell is wrong with me? Is it still Fibro? Could it be MS? Or Something Else?

Something is definitely very very wrong. A whole new wrong. A different wrong

The fact is I’ve been experiencing pain since before Christmas 2010 from what I assume stems from a winter triggered flare. This is what my year has been like

  • Have had major bouts of fatigue, tiredness, and energy loss since winter began
  • Feel poorly 80-90% of the time with very little relief in between
  • Been bed ridden – spent all of Jan and Feb either in bed or on the couch – not a day goes by since that I don’t need to rest between activities
  • Can’t do my normal every day activities – include watching my niece –interfering with my ability to earn a little money and help my sister out
  • Had sinus infection turn bronchial in Feb.-mar –it lasted 7 to 8 week duration
  • Am non functional for better part of day due fatigue, pain, and weakness
  • Weakness to the point of can’t lift simple things like a drink, or stand for even short period of time
  • Difficulties standing up straight in the mornings or after sitting for too long
  • Constantly feeling stiff
  • difficulty  walking- feel all crumpled up, stiff, crunchy
  • popping bones all over
  • difficulty lifting- too much pain in wrists, hands, fingers, and arms
  • same when required to use legs to lift
  • TOO weak, everything feels heavier
  • Difficulty focusing/ staying focused – lose train of thought,  can’t finish sentences, forget why in the room or what was just said
  • Can’t get organized, everything suffers, home family friends, life
  • Very Depressed, hopelessness, misunderstood, frequent and long crying jags
  •  Nausea, dizzy and sickly feeling
  • Headaches
  • Patches of prickles , like needles poking from inside out, on arms, neck, face

EXPERIANCING PAIN IN:

  • Hands & Fingers – feel swollen, can’t bend, or grasp. Skin gets too tight. COLD, blue finger tips (both but more intense in right), shake/unsteady, prickly, tingly
  • Wrists – no strength, feel like it’s going to crack right off, prickly , tingly, hot
  • Arms – aches, muscle burn, dead, feel heavy, prickly , tingly
  • Upper arm / shoulder – achy, heavy, prickly  , tingly
  • Neck – stiff, reduced movement, stabs of pain
  • Back of neck/head – stabbing pain out of nowhere sometimes brief sometimes not
  • Face – tingles/ prickles, pins & needles, numbness
  • Lower back- weak cant straighten up, can’t sit long, can’t stand long
  • Legs /thighs – ache, feel dead inside, feel heavy, muscle burn, soreness, stiff, numbness
  • Knees – stiff, feels sand or gravel packed
  • Calves – cramping, sore, tight
  • Ankles – stiff , especially in the morning
  • Skin – prickly, tingly, painful

FATIGUE, FATIGUE, FATIGUE!!!!

  • Have NO energy
  • Fine one moment and not the next
  • Meer walk from couch to bathroom wipes me out
  • Feels like gravity is pulling me down
  • Sudden urgent needs to sit/rest
  • Simple tasks feel like full on workouts – i.e. Walk to kitchen feels like full on hike; doing dishes feels like weight lifting; writing/drawing feels like just did pull-ups
  • Break a sweat just going from one room to next
  • My brain wants to get things done but body wont/cant co-operate
  • Once rested I feel okay and able until I try to do something
  • Even typing wears me out

OTHER PROBS:

  • Forever forgetful – can’t retain or remember info
  • Incontinence – pee when laugh, cough, sneeze, lift, get up too fast, sound of water, see running water, get close to bathroom
  • TMJ – tightness in jaw, wake up clenched, pain
  • INSOMNIA/SLEEP DISRUPTION – cannot get to sleep, pain wakes me up/ keeps me awake, sudden jerking motion, can’t stop moving, can’t turn off body or brain
  • Depression – thoughts of worthlessness, death, long can’t stop crying jags
  • Temperature control – too too cold! Freezing! causes pain OR too too hot, can’t function, need to sit, rest, sleep; difficult finding happy medium
  •  Headaches – migraines, tension, stress, allergy
  • Get dizzy, feelings of vertigo, nausea. Worry I might faint if I don’t sit
  • Eyes get fuzzy, darkness over one eye (left) like it’s shaded or looking through a screen
  • Spend more time feeling bad in a day than I do feeling good.
  • Feel like I am getting no reprieve.
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6 thoughts on “Fibro? MS? Or Something Else?

  1. valeri on said:

    i wanted to know if you have gotten any answers. I am pretty much in the same boat. ive also had “ms hug” like symptoms and have 3 lesions in my brain but they say because it haven’t gone blind in one eye its not ms. I have been diagnose with fibro. I know I do have fibro but I still believe I have ms too. I havent gone blind but I have severly lost my hearing. I have the hearing of a 90 year old. hearing loss is a symptom of ms , a rare one but still a symptom. not everyone loses their sight only about 50% do. I have however had a split second of blackness in I think it was my left eye??? it was a few years ago so I cant really remember which eye. I also get the feeling of blood rushing out of my head as if someone is bushing their hand down thru my body. a couple years before most of my symptoms started I had what I call fainting spells with out ever falling. everything went black id stop in place and hold onto what ever was near me so I didn’t fall. it would have when standing, sitting, and laying down. it happened when I was doing stuff and when I was doing nothing. these “ms hug” sensations have gotten a lot worse and more frequent. I’m not able to work anymore because the severe fatique and pain that I have. I cant sit or stand for long periods of time. just like you a trip to the bathroom or kitchen is a 5 mile hike to me. just vacuuming kills me. there are times when I have almost bought a wheel chair or walker because it has gotten so bad. my eye lids and lip twitch all the time. I have crawling feelings mostly on my face but also on my whole body. add pretty much everything that you listed and more that is how I am. I’m hoping to find some answers as me and my family are suffering too much. so please if anyone has an answer please let us know.

  2. Pingback: Peek Into A Fibro Flare-Up « Ever So Gently

  3. Jill,

    Your list looks like the list I am beginning to accumulate myself. I have been having many of these symptoms on a less severe scale for almost a year now. It got really bad last August and I sought medical treatment for what I thought was swollen ankles and calves. I was also having an irregular heartbeat sometimes and trouble breathing. I had a ton of tests done that cost me $2,000 and the only thing they found was that I was having an “asthma-like” inflammation in my lungs and put me on a daily steroid inhaler.

    Interestingly, opposite of you, my symptoms improved greatly during the winter months and then ramped up again once we had a day over 80 degrees back in March. And they have been gaining severity since. My calf muscles get so tight I sometimes feel like they’re going to explode. There have been days when I couldn’t walk up the stairs and nearly every day by 5 pm (if not much sooner), I have to sit with my legs up.

    Now, I loose feeling in some of my fingers almost every night when I’m sleeping. I’ve had tingling in my hands off and on for several years. I’ve also had wicked headaches for several years.

    I’ve hit the Internet looking for answers and I am often steered toward MS, a very frightening possibility.

    I quit going to the doc for the time being on this — my GP (the third I went to looking for answers) took me seriously enough to send me to specialists and order very expensive tests but she always acted like I was blowing things out of proportion or that she was stumped so her “i don’t know” was supposed to be enough.

    The exhaustion of trying to get answers just adds to the exhaustion of whatever is going on physically.

    So, while I don’t know exactly how you feel and you are experiencing symptoms at a much greater severity than I, I can certainly empathize. I hope you get a diagnosis and appropriate treatment very, very soon!

  4. Praying for you and your family. I have enjoyed reading your blog tonight my son is six and was just diagnoised with ADHD. He has tried three medications in the last month, so far none of them have helped. I also saw where you are sick, my husband is sick, he has CIDP, alot of your symptons remind me of his symptons. Hope things get better for you and your family.

  5. You sound like you’ve got a great list here. I’m sorry it’s so long and there’s not more I can do for you. I hope you get some answers when you get to the doctor. Please keep us posted.

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