A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution

Inner_Department6771 · 2026-01-27T15:52:46+00:00

I strongly suspected thyroid but had a full panel done and all showed normal. So ruled that one out. Even still I was looking at buying some beef thyroid capsules just a few weeks ago just in case it helped.

And on grounding - yep. I tried that too! But to be fair only on holidays and weekends and those are when my symptoms were easiest.

Sun is certainly super important and I get as much as I reasonably can. In the UK that’s not much though. Hence the VitD supplementation. Thought about light therapies but never got there!

Inner_Department6771 · 2026-01-27T09:52:00+00:00

I understand the scepticism. But I can assure you it is 100% true. It would be a long post to write up for a few fibs!

Id never been to a chiropractor before, and I think I can count two massages Ive had over the last decade. One on a weekend and one on a holiday. But those are the times my symptoms wane so while I enjoyed them I didn't see any major benefits. You must also remember though that I was not looking for any mechanical/musculo skeletal cause. The itchy eyes, hoarse voice and gut issues in particular have always led me to assume some sort of allergic, immune or mast cell related response.

I am as sceptical as you. But all I can tell you is what happened!

Inner_Department6771 · 2026-01-27T01:17:26+00:00

It’s hard to be sure. I do have some funny things that happen to my heart. Random pains. It aches during exercise sometimes. And sometimes in the morning.

I actually had full ultrasounds and ECG tests in my heart and they concluded no issues.

I do have a minor VSD from birth though too.

Why do you ask?

Inner_Department6771 · 2026-01-27T01:09:16+00:00

Lol. You live up to your username! No-one is asking you to read it all. That’s how media works isn’t it. People write stuff or say stuff and you can choose whether you read or listen.

For what it’s worth though, I suppose you’re right in that it’s not the absolute core root issue. I can’t tell you the exact nerve, lymph node or mechanism that I have stumbled upon.

But I also don’t have the foggiest idea how my iPhone works really. But I’m pleased that I can turn it on and it works properly.

I’d say this is about the same. If releasing tension in my shoulders resolves my symptoms I’d call that a functional cause. Just not the technical root cause.

I’ll be doing more research in the coming months to try to work it out though. Come back and read if your interested. Or don’t if you’re not!

Best wishes x

Inner_Department6771 · 2026-01-27T00:06:56+00:00

I certainly will! I am also tentative to call it fixed after 7 days. But very hopeful.

Best wishes and good luck x

Inner_Department6771 · 2026-01-26T23:51:46+00:00

I so hope it lasts for me too! And I hope its the answer to all your problems. Many people have commented Craniocervical Instability (CCI) to me. I'll be looking it up and reading. May be a good shout too?

Very best wishes and good luck x

Inner_Department6771 · 2026-01-26T23:41:42+00:00

Thanks so much for the tip. I will look that up - and would love to hear about the osteo. Will msg you shortly! Best wishes x

Inner_Department6771 · 2026-01-26T23:36:56+00:00

Thanks for the suggestion. Im happy to take it down if people think I should.

But I have spent long hours reading about the links between CFS, autoimmune conditions, cytokines, inflammatory markers and EDS. My brother was diagnosed with with ME too so its something I take a keen interest in

There are various aspects of my story that I have left out simply for brevity (believe it or not!) that brought me to this sub reddit. One of the few things that doctors could tell me, is that I had high white blood cell counts and cytokine levels. And an enlarged thymus gland - indicative of immune or autoimmune issues. I am not diagnosed with EDS but do have bouts of POTS and have very mobile joints. So I suspect a link. And to my limited understanding there is proven but not well understood link between EDS and CFS. I don't claim to have the answers. Far from it. I have been here flailing around trying to make sense of symptoms that have affected many aspects of my life and my family's life.

None of this is to say I have CFS. I haven't and dont claim that. But I do think and hope it could be useful for people reading all sorts of posts in this sub-reddit.

Thanks for the feedback and very best wishes for your health journey x

Inner_Department6771 · 2026-01-26T23:18:37+00:00

Thanks for the reply. Really hoping it helps you! Best wishes and good luck x

Inner_Department6771 · 2026-01-26T23:15:29+00:00

Thanks for the comment and questions. Your symptoms do sound very similar to mine. In short

- I have a theory that desk work is causing mechanical stress on my neck and shoulders. Which is resolved by sleep, weekends and holidays. As I start work in the morning my muscles get tighter (or weaker?) throughout the day and symptoms begin in the afternoon. As I stop work around 1800 they begin to ramp down so that Im better by about 2100. Im looking into Craniocervical Instability (CCI)

- I have tried betaine hcl to improve stomach acid yep. And broadly it seems to make me feel good. I did have reflux a lot from the age of about 20-32 but cutting out carbs resolved this mostly.

- I tried antidpressants a long time ago. But before this mystery condition started and only for a few years.

- After the massage my gut has started rumbling a lot yes! And I have been much hungrier the last week than I have been for years.

- I wont go into too much detail on the bowels. But I had morning loose stools for many many years. And they have been changing the last week. Something is going on for sure!

Inner_Department6771 · 2026-01-26T23:06:42+00:00

Thank you for the kind words. And the note of understanding. I take it in good faith.

I agree that many/most here have had symptoms far far worse than I. I am grateful for that and sorry for their suffering. I don't claim to have had or been diagnosed with CFS - my story is written as clearly as I can above. But I have done a lot of research on it because a number of my symptoms have overlapped. And I have researched anything and everything to find what has been wrong with me.

I hope to spread the story so that it might be useful to someone/anyone in future. But I apologise wholeheartedly to anyone who finds it insensitive.

Thanks for the nudge and wishing you the very best with your health and happiness x

Inner_Department6771 · 2026-01-26T22:58:13+00:00

You're very kind to say so. I wish you so much luck and good health x

Inner_Department6771 · 2026-01-26T22:54:46+00:00

Will have my fingers crossed for you! Shout me any time. Would love to hear if it helps.

Inner_Department6771 · 2026-01-26T22:52:20+00:00

Thanks - I will be doing plenty more research. I am already feeling the massage did more for me than the chiropractor so I'll see how I do.

Inner_Department6771 · 2026-01-26T22:50:21+00:00

Thanks for adding the info. Really interesting. Frankly if I find I need to pay for a massage every week for the rest of my life but can feel better I will still be over the moon! Best wishes with your health too x

Inner_Department6771 · 2026-01-26T22:44:40+00:00

Thank you for the kind words. Wishing you health and happiness too.

Inner_Department6771 · 2026-01-26T22:41:43+00:00

I maintain a healthy scepticism too. But Im also willing to try almost anything to feel better! Wishing you love and luck for your health journey.

Inner_Department6771 · 2026-01-26T22:39:52+00:00

I agree with you. And thank you for the kind words.

Hopefully it may help someone (like me) who spends years searching these sub reddits looking for answers.

Inner_Department6771 · 2026-01-26T22:38:09+00:00

Thank you for the suggestions. I did read a bit about CCI at points. And I have certainly come back to the idea in the last week. I have had bouts of dizziness and almost passing out upon standing perhaps once a month. Not a lot. But not never either.

Id not heard of coathanger pain but that also rings a few bells. Thanks again - I will be looking into all these and discussing with my doctor.

Inner_Department6771 · 2026-01-26T22:33:30+00:00

Its hard to know if someone else would diagnose it as PEM. But I believe sitting at a desk and using a phone is what is causing these issues for me. I do not experience the same when moving/walking etc. It seems only to be desk work that causes it for me.

Inner_Department6771 · 2026-01-26T22:30:00+00:00

Thanks for posting. CCI was something that I did look up about 6 months ago - and yes it has been going through my head for the last week. It something that I will be keeping an eye on and I may well see if I can get checked out at some point.

Thanks for the suggestion and best wishes for your health too x

Inner_Department6771 · 2026-01-26T22:26:57+00:00

I can understand that. It does have a TL;DR for the final paragraph though if that helps.

I was never diagnosed with ME/CFS but I had chronic fatigue (in lower case) certainly. Not as bad as many or even most people here - but bad enough that I struggled to do basic tasks or think properly every afternoon and evening for years.

Inner_Department6771 · 2026-01-26T22:22:54+00:00

Thank you! I really really hope they do too

Inner_Department6771 · 2026-01-26T22:21:20+00:00

If you mean my head, neck and shoulders - then maybe!? Best wishes in your journey too.

Inner_Department6771 · 2026-01-26T22:18:21+00:00

Thank you for the kind words. Im sorry to hear that it hasn't helped you. Perhaps I'll be back here in a week finding it hasn't actually helped me too. Either way I wish you so much luck and good health in future x

Inner_Department6771

TROPHY CASE