I want to create a group of similar patients and share experiences / treatment options

[MartinK]

Hi guys, I would like to find out / find as many people as possible similar to me with these specific symptoms:

-severe ME/CFS with physical fatigue mainly
-extreme intolerance to heat
-easy to get PEM after muscle stimulation / massage / lying on a hard mat
-burning/inflammation feeling in muscles mainly around the spine, legs and pelvis-worsening after exertion

These are very specific symptoms for me that I believe are worth investigating. Of course I also have some more typical symptoms, mainly extreme muscle weakness and fatigue - I'm bedridden. Can anyone help me or let me know who has similar symptoms? We could try some things together in group and share experiences! 🙌🏻

I'm trying a lot of treatments and new things, I'm having some minor improvements at the moment.

Finding similar patients can help us a lot I think because it can more closely identify what helps our subgroup.

@Thebirdman333 is one of the similar ;-)

 

[wabi-sabi]

Don't all of us with dysautonomia have intolerance to heat?

 

[MartinK]

@wabi-sabi Im not sure, I think the problem is that few of us have an official diagnosis of dysautonomia, but surely some of us has it.
Do you match these symptoms?

 

[Rufous McKinney]

I have some of your symptoms.

I think us patients need to come up with some hypotheses for subgroups. Since nobody else seems to ever do it.

I can get severe cognitive fatigue.

My version is heavily lymphatic, anything that moves lymph makes me more ill for considerable amounts of time.

Of the things you list, I too have extremely intense periodic pain in the spine, and pelvic/groin/hip flexors....extreme weakness in that area, and now I have a lymphoma diagnosis with many enlarged lymph nodes in groin and pelvic area that I can now feel. (how disconcerting)

 

[wabi-sabi]

I think the problem is that few of us have an official diagnosis of dysautonomia,

Yes, the official diagnosis is the hard part. The ME/CFS diagnostic criteria call for orthostatic intolerance. This, as far as I know, is always caused by dysautonomia. So (most) all of us have it whether we have the official diagnosis or not.

Yes, I have some of these symptoms, but I think we all have most of them. I think of it like this:

-extreme intolerance to heat

This means dysautonomia, which is core criteria for ME/CFS. Therefore not unique.

-easy to get PEM after muscle stimulation / massage / lying on a hard mat

Muscle stimulation is known by researchers to cause PEM and pain. Dr. Alain Moreau uses massage type things to study PEM in patients too fragile to exercise. Therefore not unique.

-burning/inflammation feeling in muscles mainly around the spine, legs and pelvis-worsening after exertion

This is a really good description of PEM. Core criteria of ME/FS. This is the M in ME. Not unique.

-severe ME/CFS with physical fatigue mainly

Now this is unusual, since cognitive dysfunction, brain fog, whatever you want to call it is also part of ME/CFS diagnostic criteria.

I'm not trying to squish your good efforts. Your question is an example of why I get so frustrated with the language we use to describe our symptoms- maybe that's my brain problems too. Nearly everything you are describing is what I feel like I hear everyone say, and I don't really know what it means anymore. I mean, you are describing things that you think are unique to a subgroup, and I think you are talking about core ME/CFS criteria. I don't really know how to understand this.

I know we are all struggling to understand what's going on and to find a solution. I'm just getting more and more pessimistic about that possibility unless we have some more common language beyond what a symptoms feels like.

 

[Rufous McKinney]

Yes, the official diagnosis is the hard part.

I don't think it's an official term, is it? It's a general term I think.

I just went thru some more testing and hanging with a rheumatologist. She seemed only interested in rheumatic illnesses, and has fibromyalgia on her radar because so many people show up with that.

She suggested I increase my dose of LDN. That was about it. We never discussed POTS or issues with OI or any of all that. Or my fibromyalgia.

 

[wabi-sabi]

I don't think it's an official term, is it? It's a general term I think.

Dysautonomia? Yes, it's the official term for a general condition.

See Dysautonomia International http://www.dysautonomiainternational.org/

 

[Rufous McKinney]

I know we are all struggling to understand what's going on and to find a solution. I'm just getting more and more pessimistic about that possibility unless we have some more common language beyond what a symptoms feels like.

I can appreciate what you're saying....my adult daughter being here, witnessing the scene, it's been sobering for her.

To witness her mom abruptly HEAVING into the kitchen sink.

Or seeing Double all day last Friday.

Or having to somehow walk 150 feet, only to collapse like a blob of protoplasm...(more like an amoeba, than a structural being)

 

[Rufous McKinney]

Yes, it's the official term for a general condition.

I listened to a lecture by a neurologist AT the Dysautonomia convention, and he said its NOT a diagnosis.

Just a drawer, to toss numerous things into (I'm not an expert, just repeating what I heard)

 

[Rufous McKinney]

it can more closely identify what helps our subgroup.

the sore throat.....

do you get the sore throat?

Like I'm just here today, resting alot, not speaking out loud to anyone, not making any calls, day 2 of PEM ridden and I've got a strep-level sore throat coming on around 2:40 pm.

 

[wabi-sabi]

Dysautonomia convention, and he said its NOT a diagnosis.

I think what he means there is that it's a general word for a description for something we don't understand yet, not that a person can't be diagnosed with it. He's also probably implying to other doctors that you shouldn't stop with a diagnosis of dysautonomia and think you have helped your patient. As a medical person you need to figure out why a person is having dysautonomia, because otherwise it's real hard to treat.

It's like when I went to the Mayo, they gave me a diagnosis of "pain". Now, pain is a diagnosis you can give someone, but it doesn't do anyone any good, and it's not exactly a revelation to the patient. Really? That's the best you got, Mayo? Can't even say fibro or not fibro? The doc saying dysautonomia isn't a diagnosis is just telling other doctors not to be so lame.

 

[wabi-sabi]

do you get the sore throat?

But again, what do you mean by sore throat?

Sore from viral reactivation?

Sore from new infection?

Sore from allergic post-nasal drip?

Sore from yeast infection?

Sore from acid reflux?

Sore from hot coffee too fast?

Sore from asthmatic cough?

Check boxes of symptoms don't help without knowing the symptom more exactly.

 

[Rufous McKinney]

without knowing the symptom more exactly.

I agree....

I don't know why I get these sore throats. Nobody knows, because nobody looks. Nobody asks. Most of the reasons you list aren't the reasons.

that leaves something about old viruses, something about inflammation all over the body, and the perennial SOMETHING which gets used up or produced in excess...which leads us to being sick most of the time.

so I can rule out most of your list.

 

[Rufous McKinney]

hat you shouldn't stop with a diagnosis of dysautonomia

Now I have an official disease, recognized by the actual medical world, and its not doing me any good either.

I got a "no treatment for that" official diagnosis for a different problem (altho its all related, because ME messed with my lymph system.

 

[Rufous McKinney]

Thinking about subtypes: somebody here took a stab at genetic sub types: they found SEVEN
Looks like its from the British school (CFS/ME)

J Clin Pathol
2008 Jun;61(6):730-9.
doi: 10.1136/jcp.2007.053553. Epub 2007 Dec 5.

Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis: a detailed analysis of gene networks and clinical phenotypes​

J R Kerr 1, B Burke, R Petty, J Gough, D Fear, D L Mattey, J S Axford, A G Dalgleish, D J Nutt


Results: Genomic analysis revealed some common (neurological, haematological, cancer) and some distinct (metabolic, endocrine, cardiovascular, immunological, inflammatory) disease associations among the subtypes. Subtypes 1, 2 and 7 were the most severe, and subtype 3 was the mildest. Clinical features of each subtype were as follows: subtype 1 (cognitive, musculoskeletal, sleep, anxiety/depression); subtype 2 (musculoskeletal, pain, anxiety/depression); subtype 3 (mild); subtype 4 (cognitive); subtype 5 (musculoskeletal, gastrointestinal); subtype 6 (postexertional); subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression).

Conclusion: It was particularly interesting that in the seven genomically derived subtypes there were distinct clinical syndromes, and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.


________

These are very specific symptoms for me that I believe are worth investigating.

do you think you fit into one of those seven?

I'm wondering where the heck I"d land in the seven?

(I was mild for decades...sure wish the Good Old Days would return)

I think I am now SUBTYPE 7

As usual, I don't know how they are defining things like depression and anxiety when it has a biological basis. (that comment in the conclusions)

 

[Rufous McKinney]

subtype 6 (postexertional)

whats this subtype? isn't this a key defining feature?

 

[wabi-sabi]

whats this subtype? isn't this a key defining feature?

Maybe it's just an old paper. I know Dr. Moreau has done more recent work on subtypes (I think with microRNAs), but I can't find any papers right now.

 

[Rufous McKinney]

This paper was posted here in PR in 2011...I'm finding it confusing for now. Not user friendly.

2000, JCFS, 8.3, 1-21, Jason, Subtypes of CFS

View attachment 2000, JCFS, 8.3, 1-21, Jason, Subtypes of CFS.pdf

 

[Rufous McKinney]

Here: 11 circulating microRNAS help to separate ME from fibromyalgia...perhaps not subtypes per se.

https://pubmed.ncbi.nlm.nih.gov/36732593/

from the abstract:

"These 11 miRNAs are proposed as potential biomarkers for discriminating ME/CFS from FM."


so when we hurt all over, thats not FM? (lol)

 

[Rufous McKinney]

I'm trying a lot of treatments and new things

I've decided I can't try new treatments, or experiment, until I have got my personal living situation resolved.

meaning I have to move and do a sort of big thing. So n=1 experiments that make me feel worse are NOT ALLOWED currently.

So for anyone else interested enjoining your experiments, I may join you in a few weeks.