Discussion in 'Fibromyalgia Main Forum' started by chanson56, Oct 6, 2006.

  1. chanson56

    chanson56 New Member

    Hi, as you can guess I am new here and in desperate need of help and information. I was diagnosed with CFS,Fibro quite a few years ago. Now I also have COPD and emphysema. I also have TMJ that usually is only real bothersome when I have migraines. The problem: About two months ago my CFS symptoms became extreme. I am going to try to explain this to you the best way I can and hope that someone understands what I am talking about. Every day it hurts physically to get out of bed, particularly my back, shoulders and legs. I am up and down all night long. I sleep for approximately 1-2 hours and wake up for a few hours. More and more doing simple things like walking to another part of the room is just so tiring I REALLY want to cry, it feels physically painful and emotionally exhausting before I even get up to do anything. The last three weeks have been the most troublesome. I fall asleep--I don't feel anymore tired than usual, but I fall asleep. It does not matter where I am or what I am doing, without warning I fall asleep. Without warning I fell asleep at a red light two days ago. This happens more and more frequently. We just moved to TN and I need to find a doctor that specializes in CFS. I would also like to know if anyone else with this disease has had this happen to them and what they have done about it. I am willing to listen to ANY options, advice, etc. Thank you.
  2. Amslave

    Amslave New Member

    I'm 36 years old. I have been formally dia. for one year ( when things got so bad I was curled up sobbing). I don;t sleep...I am up and down all night...with my Ambien and Cybalta in me. There are days I would rather be dead than live like this for the next 50 years, days I miss who I was. I have left my van door open with my 3 year old buckled in and driven down the street, Set ceral boxes on fire on the back of the stove, and burnt boiled eggs( forgot what I was doing) The best bet is on bad days is just say I can't do it. I know that is easier said than done and I am still going thru an angry phase, but if you feel you should not be on the road that day because you haven't slept just tell your self your safer at home.
  3. shar6710

    shar6710 New Member

    If this falling asleep thing is new then I would suggest a sleep study. Many PWCs also have sleep apnea. I used to have to get frequently during the night to urinate but since I've been using a CPAP I rarely get up anymore.

    Or you might have another sleep disorder. You might still be tired from your CFS but there is nothing as miserable as not being able to sleep at night. It's very stressful.

    Welcome to the board and you might want to fill out your profile so we can get to know you better. I used to live in Memphis, hope you're in the good part of TN.

  4. Goldyfm

    Goldyfm New Member

    Unfortunately I started just falling asleep at inopportune times. I also had some disorientation upon awakening. My unscheduled naps lasted hours not minutes. I reported this to my rheumatologist and he is sending me to a neurologist. I was instructed not to drive till we get some answers.

    I know it is bothersome and inconvenient not to be able to drive for a while. I wonder what else I am going to have to give up, but I know it is for my safety and the safety of others, so I can deal with it.

    I will say this is completely opposite of my normal sleep habits, having been an insomniac for many years. I find it happens whether I have slept the night before or not.

    I hope you can find a physician who specializes that will work with you to get over this hurdle.
  5. chanson56

    chanson56 New Member

    I have read each of your posts and I feel like such a wimp. You have been suffering from these dibilatating diseases for so long and these disease have horrendous physical limitations.

    It is 5:13 am and I have been up since 4:30. I have fallen asleep at the keyboard three times while writing this short note. I will lay back down in a few minutes and sleep for about 20-30 minutes and be back up again. This has been the cycle for the last 3 weeks. I have suffered from insomnia before in which I will stay awake for 2-3 days. But, this feels worse. I have been getting these strange headaches, my jaw feels like someone punched me, it hurts to chew.

    No I have not heard of narcolepsy before. How do you tell if it is narcolepsy or part of the symptoms of CFS? Shar, what is the 'good' part of TN? We are currently staying in Johnson City until our house in Paris is ready for us to move in. I do NOT like the hosp., dr.s here in Johnson City that I have met so far. (They quite literally made us feel it was a CRIME to move to TN.) Will Nashville be any better? We are ready to put the house we just bought on the market again and moving OUT of TN.

    My fiancee will not allow me to drive--though he has nothing to worry about because I don't want to drive anymore.

    Thank you for the information and the warm welcome. I will continue my search for a dr. that specializes in these fields. I feel so badly for all of us. Why can't these doctors find a cure?
  6. IntuneJune

    IntuneJune New Member

    Welcome to the board:

    I had done that a few times, once on the highway with my three kids in the car with me.

    My story is long and will save you from the details, but will say, I felt so weak, it was too much of an effort to walk across a short field to watch my kids play soccer (which I really loved to do!) We are going back almost 30 years now.

    My PCP kept telling me my muscle weakness and feeling feverish was the flu. And I kept getting the "flu." But my kids never got the flu from me and neither did my husband.

    So one soccer afternoon, I could not rise up to the occasion of going to the field, everyone left for the games with me in bed. And at this point, I was sobbing, this had gone on for three years, I was missing out on the things I loved.

    I called the Treatment Center down the street which was opened on Sundays and asked who was on. (Heaven forbid, I did not want to run into my PCP.) Fortunately for me it was my kids pediatrician.

    Pulling myself together, I went to the treatment center, told him my story, -- how lucky was I, this guy knew me for years, and knew this was not the mother he usually dealt with. Anybody can appear tired and weak.... For the sake of my pride, I did hold the emotions together.

    Anyway, geeezzzz, my story did get long..... He sent me to an allergist, the allergist ran tests but on that first visit asked a lot of silly questions... and told me there on the spot I had an allergy to yeast and mold.

    When the tests came back, they were positive for wheat, yeast, soy, corn (now also citrus), fall and spring, dust, dust mites, cat, dog, mold,

    After I got control of the allergens, I stopped falling asleep all around town. What I had not put two and two togeter was, if I ate a sandwich (yeast and wheat) I had no control over what happened next, usally falling asleep.

    So this may not be your story, but it was mine. CSFers and FMSers do tend to have allergies also.

    They are tricky though, allergies, it is not just the food but how the food is processed.

    Good luck,
    Fondly, June

  7. swiss

    swiss New Member

    magnesium and malic acid has helped the pain in my back and neck tremendously. I had migraines and pain for so long. It certainly will not solve your problems but it may help. You would be wise to see a sleep doctor and investigate narcolepy. It sounds like you have more to investigate that may help you. Good luck and use this board as a resource and support.

    All the best our friend,

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