Question about EDS

[RobeAnJa]

I’m maybe up 2 hours a day. Heating food my mom makes for me (I’m 42) and go to the bathroom. Rest of the time I’m on the sofa or in bed. I can do more but I don’t feel like it. What’s the point of it? My life is over too.

 

[MikeC]

I'm sorry to hear that. It sucks that this is the new normal for us. It's looking more like EDS for me and if it is, it'll progress with time. I think my ME/CFS is being caused by EDS.

Everyday just feels like another endurance day to survive only to repeat it the next day. In the US we don't even have the option to die with dignity unless we are within 6 months of dying verified by doctors.

I wonder if a cure or even just better treatments will ever happen in our lifetime.

 

[RobeAnJa]

I’m sorry. This forum is full of people who have done this stage of the illness, but that doesn’t make it easier. It kind of confirms that it can be done, because otherwise it seems impossible right now.
It’s insane but the best to hope for right now is some kind of neck/brain/spine issue that can be corrected with surgery. And pray for improvement back to 100%. Otherwise I don’t think a cure will come. I don’t think the cure is the same for all. But what do I know,

 

[MikeC]

I'm sorry too if I was a bit too dark. At times it's so difficult to stay positive when each day is a struggle just to get by.

 

[dyllanmurphy]

I watched that Pentad video again and it’s freaking me out. That spiral is nasty. And he says stuff like ”it’s all falling apart for them”. Are you guys getting worse with time? @dyllanmurphy ? It has only been a few months but I can’t imagine feeling like this or worse for the rest of my life.

I don't have fatigue, and I've never had it for the most part. I have almost every other symptom talked about on this forum (cognitive, muscle, joint, connective tissue,heart palpitations, etc.).

My thought is that we're all in this kind of grey zone - not healthy, but not quite dying. Some process put us in the zone. For some of us, an active infection / environmental factor is keeping us here. For others, it's some cycle that was set off and can't stop on its own. It's likely related to the immune system getting set off and going haywire.

So we're all different, with slightly different manifestations of the "grey zone" symptoms.

My symptoms have been getting worse over time, yes. But it's been a slow decline, and supplements help me stay semi-functional.

If yours is just covid - caused, I would hold off on any treatments and just wait (aside from maybe taking supplements). If after a year it's still bad and getting worse, consider treatment. Sometimes the treatment ends up causing more problems than the initial disease state! Key is, don't panic, just take it day by day and remain calm. Getting panicked and going to some quack doctor is probably one of the worst things you can do.

Even going to regular doctors, I feel like there's always a risk they want to do some type of expensive procedure that has significant risks. You have to be very careful dealing with doctors and weigh the risks/benefits of any procedure / treatment yourself with your own research.

 

[RobeAnJa]

I’m not hypermobile overall and I don’t have hEDS according to the doctor and physiotherapist I saw today.

 

[bensmith]

I'm sorry to hear that. It sucks that this is the new normal for us. It's looking more like EDS for me and if it is, it'll progress with time. I think my ME/CFS is being caused by EDS.

Everyday just feels like another endurance day to survive only to repeat it the next day. In the US we don't even have the option to die with dignity unless we are within 6 months of dying verified by doctors.

I wonder if a cure or even just better treatments will ever happen in our lifetime.

Man this do much. Fell you so much @RobeAnJa

 

[MikeC]

Thank you Ben

 

[Rlman]

Did anyone tried these supplements from the presentation ?

They have a more specific video re treatment.

 

[dyllanmurphy]

I have tried glutamine + horse chestnut + fish oil + curcumin + vitamin c, and it seems to helping slightly with joint issues. Brain fog, maybe slight improvement.

One note on the supplements he's recommending. I remember reading something about sepsis (blood infection), and how to treat the catabolic state (muscle and connective tissue breakdown) it creates. The recommendations were to stem inflammation (take anti-inflammatories), provide adequate nutrients (glutamine, arginine, BCAAs), and administer growth agents (hormones I'm guessing).

Similar to the video linked, I think. I was thinking that these EDS issues are partially due to a catabolic state induced by infection, possibly, or some other bodily process.

 

[RobeAnJa]

This is an interesting theory about EDS/connective tissue and ME/CFS. I have had several of those signs all my adult life.

 

[vision blue]

@RobeAnJa

Dr Andrew J Maxwell talks about something he calls The Pentad. It’s about EDS, dysautonomia, mast cell activation, GI dysmotility and autoimmunity. It’s a theory about how these things gets triggered and then a negative spiral is started. (It’s not good news)

Do you know if theres a written transcript of the talk? I had come across this telknin another context but cant seem to find a think hes actually written on this. So id settle for talk trwnscript for now. Closesr i coukd find is a copy of his poserpoint slides

https://www.theilcfoundation.org/wp-content/uploads/2019/11/Dysautonomia-Pentad-Connections-3.pptx

Does he say anything other than elastace 2 as being the linker? That and give it q cute memorwble name (the key to being popular). I mean people have talked about the Triad for years- is he really naking a novel contribution? Is there any further discussion on tbis list- if theres snything novel
About his theories to discuss.

 

[lint7]

I have a lot of these symptoms. How is everyone doing here? Still getting progressively worse?