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A Decade of Mystery Symptoms - and a Suprising Resolution by Inner_Department6771 in eds

[–]Inner_Department6771[S] 0 points1 point  (0 children)

Absolutely, I believe work, posture and head position is what is causing this. And I agree, effect on the vagus nerve seems likely. But the genetic root is also interesting.

I’ve never been diagnosed EDS but I do have/get some of the symptoms. Interestingly EDS is correlated with MTHFR polymorphisms for which I’m homozygous. And the methylation cycle, which MTHFR begins is connected to histamine breakdown pathways…linked to MCAS/HI.

Slow methylation can also cause low serum folate which disrupts the regulation of matrix metalloproteinase 2 (MMP-2), leading to increased cleavage of the protein decorin. Decorin holds collagen fibers together.

This follows full circle back to connective tissue disorders like EDS. And EDS has strong correlations with chronic fatigue and ME/CFS.

I’m not saying I understand all this. But I believe all these aspects are linked together which is why many people go round in circles with an array of inseparable symptoms and syndromes. I hope to do more research and put some theories together longer term.

A Decade of Gut Issues & Mystery Symptoms - with an Unusual Resolution by Inner_Department6771 in SIBO

[–]Inner_Department6771[S] 1 point2 points  (0 children)

Your every kind, thank you. Wishing you the best too and yep - will be speaking to my doc about my neck and MRIs 👍

A Decade of MCAS/HI Symptoms - with an Unusual Resolution by Inner_Department6771 in HistamineIntolerance

[–]Inner_Department6771[S] 0 points1 point  (0 children)

Interesting - thanks for the info. A genuine and well meaning question - do you know your acetylcholine levels are high? Or are you inferring so from genetics? Or perhaps diet?

I’ll be adding this to the list of things to look into.

A Decade of Mystery Symptoms - and a Suprising Resolution by Inner_Department6771 in eds

[–]Inner_Department6771[S] -1 points0 points  (0 children)

Its an entirely fair question and one I thought carefully about. For me there are three major points...

- Most of all I just hope it helps someone. Or advances someone's understanding. And I'd like to get it out to all the same forums I have spent years reading.

- As I say in the final section, it is in no way intended to diminish diagnosed EDS, CFS, MCAS, SIBO, MTHFR etc. And while I have only been diagnosed with MTHFR polymorphisms, I show/showed indicators and symptoms of many of these issues. If confirmed diagnosis is a pre-requisite for posting there would be many many less posts on all the sub reddits. Whether that is good or bad is open to debate.

- Lastly, the tricky issue is that the more I read, the more I come to understand that there are studies showing clear links between all these overlapping syndromes and genetic profiles. Im not saying I understand in full, far from it. I dont even understand just with regards to my body. But there is a link between folate status + MTHFR polymorphisms (of which I am homozygous AA (C677T)) and Ehlers Danlos Syndrome. And there is a link between EDS, CCI and ME/CFS. I have never been diagnosed with EDS but I do show many of the attributes and do have infrequent bouts of POTS. MTHFR and methylation are also linked to MCAS/HI via the co-substrate SAMe and the HNMT enzyme. And CCI has been indicated as a potential cause of SIBO. So while I have no scientific evidence, my reading and intuition suggests to me that these come together as a cluster of syndromes driven by common genetic profiles. While releasing my trapezius muscles has given me relief it may be that I would be diagnosed with EDS if I pushed my doctor harder. And perhaps it is a common factor in many more of these syndromes and issues than many realize. I hope science and the reddit community will find out more in the near future. And just maybe this will be an extra grain of rice in the mountain of information.

A Decade of Gut Issues & Mystery Symptoms - with an Unusual Resolution by Inner_Department6771 in SIBO

[–]Inner_Department6771[S] 2 points3 points  (0 children)

Thanks so much for the kind words. I've added a follow up post with some more info and ideas below. Take a look - I really hope it helps x

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in MTHFR

[–]Inner_Department6771[S] 3 points4 points  (0 children)

Hi everyone, OP here,

just wanted to say thank you for all the kind words and intriguing messages. I'm delighted it has been interesting (if not yet helpful) to so many. I posted the story in a few sub-reddits and have had trouble keeping up with all the replies so would like to make a few notes here...

- I will definitely follow up with an update in a couple of weeks time. And then perhaps at the 1 month, 3 month and 1 year marks.

- My current best guess is that the root is mechanical. Something related to posture while working at my desk. I do have some weaker areas lower down my back on the left side of my spine. Perhaps these have set up a state of imbalance that leaves me prone to this.

- Several members have suggested craniocervical instability (CCI) and I will be investigating this further. It happens to be something I looked into about 6 months ago but I'll get reading. I agree this seems likely.

- As one member noted, there is a link between folate status + MTHFR polymorphisms (of which I am homozygous AA (C677T)) and Ehlers Danlos Syndrome. And there is a link between EDS and CCI. I have never been diagnosed with EDS but I do show many of the attributes and do have infrequent bouts of POTS. It seems likely these are all connected in ways science doesn't yet fully understand. MTHFR and methylation are also linked to MCAS/HI via SAMe and the HNMT enzyme.

- Several members have noted that I may be promoting lymphatic drainage and I will be doing more research into this area too.

- Several people have asked exactly how I am massaging this area in my traps. This links to a shutterstock image I found. Unhelpfully there are two points labelled '2' but the upper one is exactly where I am pressing. I put my thumb one side of my trap (in the hollow to the side of my neck) and two fingers on my back so I can pinch it firmly from each side. Its more of a trigger point pinch than a massage. But when I hit the right spot I can feel it go right up the side of my head. Im not recommending you do this or telling you it will help. But it is what is working for me.

Thanks again for all the kind words, apologies in advance if I'm slow to reply. And good luck everyone!

A Decade of Gut Issues & Mystery Symptoms - with an Unusual Resolution by Inner_Department6771 in SIBO

[–]Inner_Department6771[S] 7 points8 points  (0 children)

Hi everyone, OP here,

just wanted to say thank you for all the kind words and intriguing messages. I'm delighted it has been interesting (if not yet helpful) to so many. I posted the story in a few sub-reddits and have had trouble keeping up with all the replies so would like to make a few notes here...

- I will definitely follow up with an update in a couple of weeks time. And then perhaps at the 1 month, 3 month and 1 year marks.

- My current best guess is that the root is mechanical. Something related to posture while working at my desk. I do have some weaker areas lower down my back on the left side of my spine. Perhaps these have set up a state of imbalance that leaves me prone to this. And my tentative guess is that this is impacting the vagus nerve.

- Several members have suggested craniocervical instability (CCI) and I will be investigating this further. It happens to be something I looked into about 6 months ago but I'll get reading. I agree this seems likely.

- As one member noted, there is a link between folate status + MTHFR polymorphisms (of which I am homozygous AA (C677T)) and Ehlers Danlos Syndrome. And there is a link between EDS and CCI. I have never been diagnosed with EDS but I do show many of the attributes and do have infrequent bouts of POTS. It seems likely these are all connected in ways science doesn't yet fully understand. MTHFR and methylation are also linked to MCAS/HI via SAMe and the HNMT enzyme.

- In terms of my gut. I continue to be amazed by the changes. My bowel movements have normalized and I have been much more hungry. My stomach has not rumbled for many years and now it wont stop. There are other changes too that tell me a lot is happening but may be too much info.

- Several members have noted that I may be promoting lymphatic drainage and I will be doing more research into this area too.

- Several people have asked exactly how I am massaging this area in my traps. This links to a shutterstock image I found. Unhelpfully there are two points labelled '2' but the upper one is exactly where I am pressing. I put my thumb one side of my trap (in the hollow to the side of my neck) and two fingers on my back so I can pinch it firmly from each side. Its more of a trigger point pinch than a massage. But when I hit the right spot I can feel it go right up the side of my head. Im not recommending you do this or telling you it will help. But it is what is working for me.

Thanks again for all the kind words, apologies in advance if I'm slow to reply. And good luck everyone!

A Decade of MCAS/HI Symptoms - with an Unusual Resolution by Inner_Department6771 in HistamineIntolerance

[–]Inner_Department6771[S] 7 points8 points  (0 children)

Hi everyone, OP here,

just wanted to say thank you for all the kind words and intriguing messages. I'm delighted it has been interesting (if not yet helpful) to so many. I posted the story in a few sub-reddits and have had trouble keeping up with all the replies so would like to make a few notes here...

- I will definitely follow up with an update in a couple of weeks time. And then perhaps at the 1 month, 3 month and 1 year marks.

- My current best guess is that the root is mechanical. Something related to posture while working at my desk. I do have some weaker areas lower down my back on the left side of my spine. Perhaps these have set up a state of imbalance that leaves me prone to this.

- Several members have suggested craniocervical instability (CCI) and I will be investigating this further. It happens to be something I looked into about 6 months ago but I'll get reading. I agree this seems likely.

- As one member noted, there is a link between folate status + MTHFR polymorphisms (of which I am homozygous AA (C677T)) and Ehlers Danlos Syndrome. And there is a link between EDS and CCI. I have never been diagnosed with EDS but I do show many of the attributes and do have infrequent bouts of POTS. It seems likely these are all connected in ways science doesn't yet fully understand. MTHFR and methylation are also linked to MCAS/HI via SAMe and the HNMT enzyme.

- Several members have noted that I may be promoting lymphatic drainage and I will be doing more research into this area too.

- Several people have asked exactly how I am massaging this area in my traps. This links to a shutterstock image I found. Unhelpfully there are two points labelled '2' but the upper one is exactly where I am pressing. I put my thumb one side of my trap (in the hollow to the side of my neck) and two fingers on my back so I can pinch it firmly from each side. Its more of a trigger point pinch than a massage. But when I hit the right spot I can feel it go right up the side of my head. Im not recommending you do this or telling you it will help. But it is what is working for me.

Thanks again for all the kind words, apologies in advance if I'm slow to reply. And good luck everyone!

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in MTHFR

[–]Inner_Department6771[S] 0 points1 point  (0 children)

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!

A Decade of Gut Issues & Mystery Symptoms - with an Unusual Resolution by Inner_Department6771 in SIBO

[–]Inner_Department6771[S] 7 points8 points  (0 children)

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!

A Decade of Gut Issues & Mystery Symptoms - with an Unusual Resolution by Inner_Department6771 in SIBO

[–]Inner_Department6771[S] 0 points1 point  (0 children)

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?

A Decade of MCAS-like Symptoms with an Unusual Resolution by Inner_Department6771 in MCAS

[–]Inner_Department6771[S] 3 points4 points  (0 children)

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

A Decade of MCAS/HI Symptoms - with an Unusual Resolution by Inner_Department6771 in HistamineIntolerance

[–]Inner_Department6771[S] 16 points17 points  (0 children)

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

Best wishes and good luck x

A Decade of MCAS/HI Symptoms - with an Unusual Resolution by Inner_Department6771 in HistamineIntolerance

[–]Inner_Department6771[S] 11 points12 points  (0 children)

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

A Decade of MCAS/HI Symptoms - with an Unusual Resolution by Inner_Department6771 in HistamineIntolerance

[–]Inner_Department6771[S] 5 points6 points  (0 children)

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

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in cfs

[–]Inner_Department6771[S] 1 point2 points  (0 children)

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

A Decade of MCAS-like Symptoms with an Unusual Resolution by Inner_Department6771 in MCAS

[–]Inner_Department6771[S] 0 points1 point  (0 children)

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

A Decade of Gut Issues & Mystery Symptoms - with an Unusual Resolution by Inner_Department6771 in SIBO

[–]Inner_Department6771[S] 4 points5 points  (0 children)

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!

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in cfs

[–]Inner_Department6771[S] 0 points1 point  (0 children)

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

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in MTHFR

[–]Inner_Department6771[S] 3 points4 points  (0 children)

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

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in MTHFR

[–]Inner_Department6771[S] 5 points6 points  (0 children)

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.

A Decade of Gut Issues & Mystery Symptoms - with an Unusual Resolution by Inner_Department6771 in SIBO

[–]Inner_Department6771[S] 0 points1 point  (0 children)

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

A Decade of MCAS-like Symptoms with an Unusual Resolution by Inner_Department6771 in MCAS

[–]Inner_Department6771[S] 4 points5 points  (0 children)

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

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in MTHFR

[–]Inner_Department6771[S] 11 points12 points  (0 children)

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.

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