New to this and bedridden - please help me

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by needtobreakfree, Jan 12, 2014.

  1. Hello, I'm 35 years old and female. I got a cold about six weeks ago and generally declined from there with fatigue and weakness. I thought I had just a regular cold so I took a couple of days off work, then went back to work and tried to work through it. I was getting more and more fatigued but kept trying to do basic things like going to the store. Eventually I couldn't do it anymore and I ended up in bed and haven't gotten back up in about four weeks except to go to appointments in a wheelchair.

    Just a few weeks ago I was working full-time and liked to go hiking and go to the gym. I also am generally healthy and like to eat whole foods and keep a healthy lifestyle.

    I've been doing my best to take it as easy as possible. Considering I can't walk, there isn't much I can do. Even sitting up for too long exhausts me and puts me back at square one. So I just lay here day after day. When I do that I slowly make progress, but each time then I try to do something, like have a conversation with a friend for too long and I get wiped out and then I'm exhausted again. I've been so weak there were a few times I thought I might lose consciousness but the doctors won't admit me to the hospital because I was in the ER once and my vitals were alright.

    Oh, and my CBC was normal and MRI of head and neck were normal. I do not have HIV nor an active case of EBV, I was tested for both. I have been tested for Gullain-Barre as well, and the test results showed that I do not have that, either. Thyroid and liver are normal. Nerve conduction studies were normal.

    I want to start on one of the protocols immediately, as soon as possible, but there is more than one protocol and I have no idea which one to start with. Can anybody make any recommendations? I know there is the Pall Protocol and the Titelbaum protocol. My main problem is weakness and I get muscle fatigue really badly when I try to walk which ends up in pain in my thighs. If I use my legs to even do leg lifts three or four times then the next day my legs feel dead and I can't move them at all.

    This is so weird. I swear I was perfectly normal a matter of a few weeks ago. Thank you for all your support and information. This has been really hard and it's not easy to keep my optimism up. Thank you.
    Last edited: Jan 12, 2014
  2. jaminhealth

    jaminhealth Well-Known Member

    This all sounds so strange, TO ME....all this from a cold. And in a wheelchair. I have NOT had a cold in many years and keep my immune system strong with grape seed extract which I've been taking for 18 yrs...and I'm old and very retired.....

    But your issues sound so strange to me anyway. Not that it makes a great difference, what part of the world do you reside? I know thyroid is VERY often misdiagnosed and mistreated but right now I can't shed much help for you. I would cut out grains in the diet for one thing.....grains are not good for us and can cause so much fatigue as they raise insulin and then a crash....stay with green veggies mostly and protein and WATER..... jam
  3. I know, it does sound strange. I live in the San Francisco Bay Area, just a couple miles outside of San Francisco. I can't understand how a little cold could turn into this. I had swollen lymph nodes for a little while and congestion, but my fever was only a low grade fever.
  4. jaminhealth

    jaminhealth Well-Known Member

    I don't know about any connection with you BUT CFS was put on the map via Incline Village outside of Lake Tahoe, this was back in the 80's.....there is a lot of info on this and whether this is part of your issues, I don't know. I recall, of the years here, enough have talked about being bedbound early on with the CFS issue.
  5. I don't know anything about CFS and Incline Village, I've only just learned of CFS. I'll look it up. Most of my cold symptoms have gone away but my weakness hasn't. I still have migraines and the blurry vision associated with it. My inner ear has been off so I get disoriented easily. My congestion has pretty much come and gone along with the sneezing. Sometimes my temperature is a little high, but only about 99.5 and my blood pressure is pretty low lately at 90/58. It used to always be around 113/70. I get a little more energy in the late afternoons and evenings, but still can't walk. But I can sit up and move around in bed more easily. Hopefully this goes away soon. I really feel like something is off, like a hormone or something like that. My endocrine system is somehow off maybe? Nothing has been found in labs, but there are some days where waking up seems impossible and my body is so fatigued I can't move my arms when I wake up. On a couple of occasions I was even too weak to speak. Although I call it a "cold" my symptoms were pretty extreme in terms of dizziness, constant migraines for days on end, really bad congestion and white marks on my tonsils.
  6. jaminhealth

    jaminhealth Well-Known Member

    Oh, since you posted in the FM/CFS section I thought maybe you suspected one or the other.....
  7. gb66

    gb66 Active Member

    I have been diagnosed with CFS and FM and my illness started out just the way you describe. I had all those symptoms plus a few more. I'm sorry you're so ill. I hope you can find a good doctor that will be able to give you a diagnosis very soon.

    I know it's frightening to feel so sick and helpless. Do you have someone to help you? I am not bedbound but I am homebound except for medical appointmnets and also use a wheelchair.

    I was 38 when I became ill. Also, you might want to be tested for Lupus and MS.
  8. TigerLilea

    TigerLilea Member

    NeedToBreakFree - Hopefully you just have a virus that is taking a while to go away. There is a bug going around here in Metro Vancouver, BC, that is being called the "100 day Cough" as it lasts for months.

    My CFS unfortunately did start with a cold that wouldn't go away. In my case I had two infected teeth that I didn't know about and they were the culprit for my immune system not being able to take care of the cold.

    Personally, I wouldn't jump to the conclusion yet that you have CFS. I know that six weeks is a long time to be sick, but, hopefully, this is just a virus that you have that is taking a little longer than normal to clear up. I'll keep my fingers crossed for you because I wouldn't wish this illness on anyone.
  9. gb66

    gb66 Active Member

    I'm sorry to hear that you are so ill. I wanted to let you know that there is a new board called Homebound/Bedbound on the forum that you might want to read or post in.