Does this sound like CFS to anyone?

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Hi Everyone

Writing from a place of desperation and confusion, as so many are on here i imagine. Also writing on behalf of my husband who is too "exhausted" to do anything.

Wondering if any of his story sounds familiar to those of you who have CFS.

Last Feb, 6 months ago, he had his first episode. Started with a low grade fever that lasted 24 hrs. Included severe headaches, light sensitivity, fatigue, brain fog, cognitive issues, body and joint pain. We thought is was covid of course. It wasn't. Then we thought it was meningitis. It wasn't (he got a spinal tap in the ER). He had three episodes that lasted 1-2 weeks each. Each episode lasting a little longer each time with a two week period of health and feeling fine between each one. After the 3rd episode he had a period of two months of feeling mostly fine aside from three mini episodes that lasted two ish hours where he just had to lay down and not move.

Then at the end of June a 4th episode hit. He's been sick for three weeks now. The first two weeks were similar in the body pain and headaches and low grade fever off and on but this last week its just been mostly fatigue. And the fatigue he has during all of these episodes is like nothing I've ever seen before. He cant do almost anything. Sometimes he'll make it out of bed and come into the living room and lay down, or make it to the fridge but these little mini missions take it out of him completely. If I wasn't here I don't think he would pull off eating or bathing.

We've seen specialists. He's had a million tests run. Bacterial, parasitic, autoimmune panel etc The leading theory was a tick borne illness. When he's sick his CRP is way high. All tests have been negative. His over all health on paper is superb. Except for a B12 deficiency which we are treating for now.

Another piece of maybe related or not info is that about a year ago from his first episode he lost his mother (right before covid hit) and then his work (because of covid) and was struggling with deep depression and anxiety which was a new experience for him. About a year later the first episode happened.

If you made it this far thank you for listening. Does any of this resonate (or not?) for those of you who have experience with CFS? None of his doctors have even mentioned CFS to us.

Thanks!

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  • Posted

    Hi there, I'm new to the forum, just registered today.

    I have finally been diagnosed with cfs/me after years - I think 20 +! - of not knowing what was wrong with me. It came on gradually over time but with unexplained fatigue throughout. Although my symptoms have worsened and increased in number as time has gone (on over 20+ years), I managed to adapt and destress my lifestyle to keep going, with unexplainable fatigue and cognitive symptoms until about 12 years ago when I lost my Dad. The first year of almost total exhaustion I put down to grief; the second, I put down to perimenopause and started fighting for a hrt treatment I didn't react badly to .... but it wasn't diagnosed until this year, 4 months after I went to my gp armed with information and determined not to fobbed off with advice to exercise more or eat some soya (I'm intolerant). I had had a hysterectomy and simply hadn't recovered to the extent I should have in 4 months, so the gp actually took notice for once. I said I either have dementia or Cfs and I couldn't carry on any more being fobbed off. How can a person keep themself as healthy as possible when they don't know what the heck's wrong with them?!

    She ordered tests to rule out thyroid, diabetes and other overlapping conditions, then when they came back clear I went back and said I needed a diagnosis as I had returned to work for only 2 x 4 hour shifts per week, but the stress of trying to do that and dealing with my manager who kept trying to get me to work against the remit on my sick note had by the devastated me physically and mentally so I was in an even worse state. I lasted 4 weeks at work, was referred to the fatigue clinic at Bath hospital for assessment and have pretty much been housebound ever since. 3 months later I was assessed by Bath hospital fatigue clinic and given my cfs/me diagnosis.

    At least now I don't feel permanently guilty for resting or exhausted from 'pushing through'.

    So yes, Stress can certainly pre empt or precede a cfs setback or relapse and very possibly be the trigger I would say. I can relate to the being well with sudden loss of energy too. Take a look at various explanations of PEM ( post exertional malaise) and see if that rings any bells. For me it was the delay between doing something and being fit for nothing but lying on the sofa all day; the feeling fine to go for a bike ride but feeling I couldn't go one more pedal, just yards from the house on a flat road; being able to work all week but feeling like I had a dreadful virus but with no temperature all weekend, most weekends, that were just so confusing.

    I really hope your husband gets a diagnosis soon. If I'd known what I had sooner I would have taken a lot more care of myself - stuff working full time and cooking roast dinners for 12! - and very likely not be as poorly as I am now. Good luck and good health to you both. x

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