tell me what you think about my list

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Dec 29, 2005.

  1. lenasvn

    lenasvn New Member

    I wrote a list for the new physician that I'm going to since my current one dismisses me. Tell me whatr you guys think. Also, tell me what it sounds like to you. I am awfully curious!

    here it comes;

    Fatigue.
    I recently worked some for a friend where I scraped paint off of windows. I did this for3- 4 hours total that day. After that I experienced a fatigue that was like I was going to go into a coma, I spent the next 4 days on the floor caring for my kids. I could barely stand up, I had to focus on breathing like if my body ‘forgot to” Sounds weird, yes! It was horrible and scary. I often became that way after having my daughter, severe extreme fatigue where I couldn’t function physically. I first thought I was depressed and ran for anti depressants. It didn’t work; I had them for a year. My sleep improved slightly, I started dreaming again after 15 dreamless years. Fatigue upon waking like I didn’t really sleep more than an hour.

    Tachycardia, faintness, numbness in head, dizziness. Weakness to the point that I need to sit. It feels like there’s not enough blood in my system, or the blood is not going to my head. Symptoms worsen with heat. Hard to lift arms over head, arm weakness.

    Bladder. Out of nowhere can start leaking. Tried to control it, but it was useless. Have to go at night, usually once, sometimes twice.

    IBS? Polyps since age 19 or earlier. Lifelong probl. W. Bloating, pain (severe), diarrhea. Had IBS since a toddler. Spent first 3 years in hospital with unexplained bloody diarrhea. I usually go 3-6 times within the first 2 hours after waking (sorry guys! I'm blushing!!!)

    Cognitive
    Information processing, executive functions

    Attention and concentration somewhat poor, worsen as time passes (like a long lecture. I end up with a migraine trying to focus).

    Word finding difficulty, or words won’t come out right even when repeating.

    Driving and forget where I am, and where I’m going, seem to increase w/ stress/fatigue.

    Brain overload? Find myself staring out in the nowhere, like if my brain is taking a break. I have to force myself back.

    Processing VERY slow, if there is a discussion, it can take a day or two before I realize what was said/going on, I then have a delayed answer/response-

    Dizziness/ vertigo, also scrolling down at the computer causes dizziness, I have to close my eyes, very uncomfortable. Sometimes woken up w dizziness that causes vomiting.

    Cold feet, cause numb, painful toes that turn white- no blood flow.
    Occasional swelling of left long toe, turn red and hot, painful.

    Neck pain, severe for many years. Limited mobility, cause of dizziness? Thickening of cervical spine? Triggered many migraines.

    Migraines since age 3.

    Sensory overload: sounds, sights etc. causes actual physical pain, like the sounds hit my nerves in the head. I have to turn off sound or lights to calm down the reaction.

    Eye pain. A deep behind/ inside the eyes eye pain. SEVERE! When I look in the mirror at this time the eyelids are drooping. No pain medication works for this, except Imitrex. Often in both eyes, but can be in only one (usually left). Gritty feeling, like when you have been awake for very long, or like hair shampoo in the eyes, almost daily.

    Numbness in right arm when positioned above head. Severe pain in right elbow.

    Diagnosed with RA in late August 2005. X ray showed fluid and nodules on lungs. No physical have been done. No evaluation of my joints, hands, feet.

    Feet constantly stiff thru the day, doesn’t ease up. Cervical neck pain severe, lower back, hips. Bending over for a few minutes will cause sciatic pain for days. Hands go numb, I was holding a Popsicle stick one day, and my hand went tingly numb and it fell out of my hand.

    That's it so far. I might be finished. My fog is bad today!
  2. sues1

    sues1 New Member

    Although the itmes mentioned are not great to have, you did a great job in explaining. Please do go over this with your doctor(s). Keep your list or make a copy for yourself.

    I've had lots of the same things. No bloody stools though.
    Your reactions to things remind me of the first few months of CFIDS, when all was more extreme and it was like looking at the world through red glasses and things did not want to focus. Lights hurt, sounds magnified, etc. If awoken too abruptly.....I would find myself sitting on the bathroom floor hanging over the commode, I was so sick at my stomach.

    Part of what you say sounds like you might have a very slight case of epilespsy (spelling?). But also could be sleep apenea. My husband has that, the sleep apenea. You need a good MRI and also a sleep study. ETC.

    My DH used to tell me that he never had dreams. I would laugh and tell him that everyone does, he just did not remember them. Well, I was wrong. After he was treated and sleeps with a CPap machine, he began to dream! I would get excited as he would describe this new experience to me.

    You have many areas that needs checked out. Others here on this board will have even better responses than I just gave,

    GOOD LUCK...I know you can feel better, not cured, but better, with getting the proper tests and treatments.
    Blessings and gentle hugs.......Susan

  3. Cromwell

    Cromwell New Member



    You sound a lot like I did a few months ago-had terrible vertigo and occular migraines without headache though. Turned out I had trapped nerve in or around C7 disc, plus a viral infection of the same branch of that nerve that runs through the ear and eye. Also had numb face sometimes.

    The DAY the vertigo stopped, the pain etc shot down to my legs. Of course neuro thought I was insane, but a distant relative, who is a well known medical researcher has just got new research out about nerve problems that actually DO spread to other sites around the body and she has proof re this so Med community is taking some interest. She refers to it as Chronic Pain Syndrome which includes Fm/CF etc.

    Your list sounds really good to me, but knowing doctors, I just hope you get one who is going to actually read it. Last time I went to the docs, instead of being stoic, I actually allowed myself to look as awful as I felt, and cried etc. and got immediate treatment and response. I think we are just too brave for our own good sometimes
    As soon as I get a copy of this relatives research I will post it so we can all take it to our docs and wave it under their noses.

    Good luck and let us know how you go on with the new doc.
    Cromwell
  4. sydneysider

    sydneysider Member

    Sounds to me like some of your problems are coming from the neck(headaches, dizziness, arm numbness and weakness). Have you had a cervical MRI?. There is also a test for arteries in the neck. I think it is ultrasound. I suggest you find a good neurologist to get to the bottom of these issues.

    Have you checked out whether you have some type of gastric intolerance such as celiac disease, or lactic intolerance?

    I doubt that you will find any doctor who will be able to tell you what is causing the thinking and disorientation symptoms. We all seem to have them. Your best advice on dealing with these is probably the people on this message board.

    I suggest that you find specialists to get to the bottom of your symptoms. I find that many problems are out of the capabilities of a regular doctor.

    I wish you all the best. There's a lot of knowledge and experience on this message board, so hopefully you'll get some helpful replies.
  5. lenasvn

    lenasvn New Member

    bumping,,,:)
  6. suzetal

    suzetal New Member

    Don't forget to list all the meds and supplements you have taken over the yrs.And if they helped or did not help.

    Sue