CFS or Fibro reaching a crisis point

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I've been struggling with what I believe to be CFS for many years. Prior to it getting so bad I could no longer work, I had a high pressure job (here in the US) in advertising as a graphic designer. I worked long hours, sometimes around the clock. I wore myself out.

Now, years later, my exhaustion seems to be getting even more severe. Last week my daughter and I went to do my monthly food shopping. After about an hour, I "hit the wall" so hard I almost bounced. I felt as though I was about to pass out, and at the same time had pain in my neck, shoulders and lower back that was almost unbearable. I found a place to sit down, which helped, then my daughter steered us to a healthy restaurant and we had salads (with protein).

I'm taking supplements, eating clean and organic (no grain or processed foods), avoiding caffeine, and resting constantly. Nothing helps. My doc is sympathetic but little help. Has anyone dealt with this sort of thing?

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10 Replies

  • Posted

    Hey Koresun

    Sorry to hear your difficulties, but good to see you keeping a strong outlook. You'll need to hold onto that and never let it go.

    I had CFS for 7 years before making a full recovery over 8 months. That was about 7 years ago. I've been CFS-free ever since.

    I'd be happy to share my methods for recovery with you. They may or may not be helpful to you but I've found that if you have the type of CFS that can be cured, then my method may just be the thing to help you recover. Otherwise, you'll need to go down the biological route.

    So, I'll begin by asking what's your life like with CFS? Work schedule? Home life? Weekends? What pressures do you face each day and how does CFS affect it?

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    • Posted

      How did you it? I'm guessing by your post it was lifestyle changes, but I would like to here some specifics. It's not often you find people cured for so long but still willing to help. Thanks in adcance.

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    • Posted

      Hey Joe,

      Yes it was mostly due to diligent lifestyle change (stimuli control) and reaction reprogramming. Took me about 5-8 months to get from 0% to 90% recovery, then another few years to completely forget I ever had it. It's now been over 5 years since I was back to my healthy self. Actually, due to the self-awareness CFS gives you, I'd say I'm actually healthier due to lifestyle choices. I'm 32 by the way.

      When I hear about CFS in the news every now and then I remember I used to have it and how alienating and frustrating it is. Then I get motivated to try to help people. Feel it's my duty as I'm one of the 5% that recover. So here I am for a while.

      Not saying I have the *only cure* or anything, but I can share what I did to personally conquer CFS. I'd prefer not to just write a set protocol, maybe if you ask me some questions or tell me some background to your individual circumstances I can give you some tailored advice.

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    • Posted

      The challenging part is that I lead a pretty clean lifestyle. I have never had this officially diagnosed. It just seems like I meet all the criteria. It started with the flu or a flu like virus that wiped me out for a few weeks and then I never fully recovered. The main symptom was fatigue and complete lack of energy. The brain fog was mild but definitely there. The whole case seems mild compared to some others. I can function just hurt a good deal and don't want to do all I have to do. I do have joint pain, vibrations in part of my body, some twitching but overall it's a sense of not being well. What got me concerned is the lack of muscle. I feel weak, try to exercise but can't seem to build muscle. I have also had low T the last 20 years or so. I eat fairly clean, my weight is low and don't drink alcohol. The one constant factor in my life is stress. I'm a commission salesman and it's loaded with stress. The good news is I can work from home most of the time. Also have 3 kids(2 teenagers) and it is what it is. Love to hear any ideas. Thanks

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    • Posted

      Hi Andy,

      Thanks for your reply! Sorry to be slow responding, but for the last few days I've been having a major flare up; I've been so dizzy I could barely walk ten feet without feeling I might fall down.

      I had to retire, due to severe fatigue and poor balance, so my life is quiet. My major stress is caused by the woman who owns the building where I live. I legally had to give her a key to my apartment. Now on those few occasions when I am able to go out, things go missing. Small things which have a sentimental value. For instance, I had my father's insignia from WWII (he was a Merchant Marine Captain) in a box on my desk. One day they were there in the morning. I went out. When I got back they were gone. She insists she doesn't have my keys. I can't prove that she does or I'd go to the police. It's creepy.

      If you have healed yourself, I'd be very happy to hear how.

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    • Posted

      Hi Koresun,

      The living situation with the landlord sounds pretty bad. CFS can make you feel and act helpless after a while but you really need to sort your physical living situation out. Not giving advice here, but be creative and come up with a way to get some proof she's illegally entering. Security cameras are cheap and covert these days. Part of recovery is making sure your environment is stable and reliable with no stressful interuptions.

      That's your #1 priority. Once that's handled it's all about diagnosing your patterns and implementing re-wiring routines, habits and thought responses to stimuli. Alongside progressive pacing and self-monitoring through journaling and 3-6 months to fully focus on healing, that's the mix that worked for me and many others.

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    • Posted

      Hey Joe,

      Stress equals cortisol in your system, which disrupts just about every natural process in your body - including hormonal balance. It also seems to breed more stress. It's one of those bad cycles. 

      In regards to your symptoms, everyone has varying degrees of them. In my opinion I think treating symptoms can largely be smoke and mirrors as they are downstream results of upstream issues. They're indications of problems but not problems themselves. Treating them is a whack-a-mole game.

      You need to take your stress seriously. There are two scenarios -

      1) your pressures and responsibilities are too hard and you need to focus on reducing them.

      2) your coping capabilities are under-developed and you need to focus on improving them.

      What do you need to do to reduce your stress? Doing so will allow you to then improve everything else.

      How many of the following bodyweight exercises can you do (0 is fine, be honest):

      1) Full squat

      2) Chip up

      3) Push up

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    • Posted

      Squat I can still probably do 10-20(non weighted)

      Chin ups- maybe 3-5

      Push ups- maybe 10-15

      Even with low t for years I have been able to maintain body size. Would have trouble growing but easily maintained.

      Since this event I have observed a noticeable size difference. I'm shrinking. It seems working out with weights actually makes it worse. Just puzzled.

      Yes, the best scenario would be quit my job. That's not an option.

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    • Posted

      That's pretty good reps. Predictably you're shrinking because of atrophy and stress. I couldn't do any weights without getting severe muscle burn for days.

      As you need to keep your job, you'll need to go option 2 and work on your coping abilities. Think about how you can implement what I call "active relaxation", that is pre-planned, structured and routinised wind down and stress-melting practice. Something in the evening as a wind down ramp to bed. Some ideas: hot shower, conscious breathing, clench and release of every part of your body, tea, light stretching etc. Just as important as the things you do are the thing you don't do - such as watch news/check phone, snack, go to sleep when you feel like it, etc. Try to make it regular in pattern and timing.

      A few weeks of active relaxation and you may begin to feel your overall stress levels lowering, knowing you have your wind-down routine to go home to every day.

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    • Posted

      The scary part is I work from home. I have meetings and some travel but by anyone's standards the schedule is light and relaxed. I'm only about 7 months into this. I need to find a way to maintain my strength. Getting ready to do some new blood work. Test is surely low....it was before this happened and do is vitamin D.

      Thx for your advice!

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