Watching Unrest again, I'm noticing something.

[alex3619]

my cousin was diagnosed with Ehlers-Danlos which I'm sure I also have.

I was talking to someone with EDS recently, and they said they were an encephalitis survivor. I wonder how common that is in EDS. Lipkin identified an ME subgroup, which he labelled Atypical ME, in which there is a stable cytokine profile. This group contains lots of encephalitis survivors. I wonder how common that is too. I am also an encephalitis survivor.

If EDS compromises the blood brain barrier and so pathogens can more easily cross to the brain then encephalitis should be more common. This may be a powerful ME trigger.

 

[Sushi]

So I tried an experiment, and tightened up my compression belt to the point where it was somewhat uncomfortable. I almost immediately started doing better, and was able to finish my tasks in fairly short order. And the feeling of discomfort stopped as I started moving around better and I forgot all about it.

I wear compression knee socks all the time but at times have also used an abdominal compression garment as "splanchnic pooling" was the larger pooling problem for me as shown in autonomic testing. I found it more effective to wear these two garments than full compression tights which are not that tight on the abdomen.

The pooling of the blood in legs and the abdomen occur in Dysautonomia because the autonomic nervous system can't regulate blood flow the way it's supposed to, and so it pools as it does.

As it was explained to me by my autonomic specialist, it has something to do with large and small vessels. The large vessels in the abdomen are particularly vulnerable to pooling.

 

[Dechi]

I always have my legs elevated when sitting down. I cross my legs in front of me, not under, to relieve the pressure in my lower back that’s killing me from not being up on my feet enough.

 

[Murph]

Her neck caught my eye... her thyroid appears enlarged. I've had thyroid problems for a couple of decades, so I notice people's necks. :-\ My own thyroid was very enlarged, but it all went "in" so it didn't appear very swollen from the outside. Probably less than hers.

I assume her doctor has noticed that she has developed a bit of a goiter and has already investigated.. or else, somewhere along her research she would have covered the thyroid, iodine, Hashi's, Graves', etc. Has she ever mentioned it, does anyone know?

It feels odd to mention someone else's thyroid in a post, but it's not like I can write to her and ask. This is what I mean:

you could write to her and ask. she's on facebook and twitter. She may even be on here?

 

[jesse's mom]

For my own surprise, pretty much the only one since most long term advocates are well aware of our typically dreadful circumstances, was Jen's discussion of how her hand used to form into a fist. I have very rarely heard or seen of this, if ever, aside from one case - me. In my case its more like a claw than a fist, but its the same idea. It does not happen very often, but I have to manually unlock my fingers as I have no control over them. Has anyone else seen this?

my hands began to do this recently after i was in the hospital for the flu and pneumonia. it has gotten a little better. I think the magnesium in the milk of magnesia i take for the IBS swings really helps.

 

[Hajnalka]

does anyone know

Yes, she knows and a lot of viewers "diagnosed" her after the TED Talk (but she already knew).

 

[shoponl]

Yes, she knows and a lot of viewers "diagnosed" her after the TED Talk (but she already knew).

Oh good, thanks! I'm glad to know it's not a problem for her. Thyroid is always on my radar these days.... I've noticed a surprising number of thyroid surgery scars out there, after I had mine.

I deleted my earlier comment as it only detracted from the conversation.

 

[Wayne]

Thyroid is always on my radar these days....

Daniel Amen, a doctor who specializes in brain health, says that a high percentage of people who've had any kind of concussion or head/brain injjury have hypo-thyroid problems.​

 

[Misfit Toy]

I am seeing about stockings and the abdominal belt. Does anyone know where I can get either the stockings or the belt?

 

[Hajnalka]

Oh good, thanks! I'm glad to know it's not a problem for her.

Hi, just to make sure, I don't know if it's a problem for her. I just know that the topic was raised after the TED Talk and she knew.

 

[hixxy]

I can sit for a long time at my desk, but I'm usually slumped to the side and with my legs pretzeled. I don't have POTS but do suffer with OI.

 

[Sundancer]

yep, here too.
I've always sat with my legs crossed over indian style. In high school it caused problems, teachers wanted me to conform to the norms. I do remember that I got restless sitting with my feet at the ground, and it intervened with my concentration too. So, totally subconscious, the shoes left my feet and the legs went up .

And afterwards I would leave the classroom barefoot or on socks...
I've spend half my youth searching for my shoes.

15 years ago I had severe POTS, could hardly sit straight up for more then 5 minutes, but that has left me happily.
And maybe this explains my preference for tight pants too. Because of indigestion problems I wear loose ones now, and do not like it at all.

 

[Lynn]

I always sit with my legs up and crossed at the ankle. My husband calls me the Queen of the Ottoman Empire because we have at least one in every room. Unfortunately, when I get too tired my body automatically tries to get in a horizontal position and I slump in the chair. I am really worried what that will do to my deconditioned body later.

Lynn

 

[Kenshin]

For my own surprise, pretty much the only one since most long term advocates are well aware of our typically dreadful circumstances, was Jen's discussion of how her hand used to form into a fist. I have very rarely heard or seen of this, if ever, aside from one case - me. In my case its more like a claw than a fist, but its the same idea. It does not happen very often, but I have to manually unlock my fingers as I have no control over them. Has anyone else seen this?

I've had a paralysed hand, it suddenly felt bruised and locked in place, it was painful but not extreme and left after a few minutes.

I'm starting to think I have EDS, I feel better horizontal and when standing always lean on one foot while sort of bending the other.

 

[anciendaze]

I feel sure I know exactly what the people in the film are doing.

My orthostatic intolerance has many characteristics listed on this thread, and I've reached the point, at my advanced age, where I no longer apologize for lying down and elevating my feet. It is more polite than passing out or becoming incoherent. When I stand, I tend to pace. This keeps my leg muscles pumping blood back to my heart. (Veins have check valves, but need muscle contractions to pump.)

I've had a tendency toward cold hands ever since my teens, and after years of bad advice I finally connected this with time spent upright. When my fingers turn cold and white, I know it is time to change position, though sometimes even lying flat is not enough. This year I've noticed that when I get into a hot bath with cold fingers my fingers and toes remain white while my arms and legs turn pink. After a few minutes the color returns to my fingers and toes.

This might sound like congestive heart failure except that there is no pooling of blood at my ankles. I strongly suspect the kind of low cardiac fill pressure discovered by Systrom's group in Boston, but have trouble navigating the local healthcare system, where doctors dismiss this.

Doctors waiting rooms are a serious trial for me.

 

[Navid]

" low cardiac fill pressure discovered by Systrom's group in Boston"


Any recommended treatment for this problem from Systrom's Boston Group.

I too sit and stand the same way as described throughout this thread and have for my entire life....prior to becoming ill also. Has become one of my primary debilitating symptoms in illness....can't sit or stand for more than 3-5 mins without HR increasing by 30+ points and BP dropping drastically.

Have tried abdomen binder, compression stockings....they help slightly but not enough to make being upright possible for very long at all.

Are there any kind of binders that you can just wear on calves, footless and go perhaps an inch or so above the knee.....socks and tights are too uncomfortable. In fact the socks I have right now are too tight and seem to cut off my circulation.

Saline infusions and various POTs/OI meds have not helped either.

With so many of us all experiencing the same symptoms there should be some research that could figure out what is going on with us. Wonder if Dr. Davis' group is looking at this issue.

Thanks!

@Ben H

 

[anciendaze]

My experience with compression stockings is that you should take them off when you lie down, to allow normal redistribution of blood. If your toes are turning white while standing that is a clear sign they are not getting enough peripheral blood flow. You do not want to restrict circulation if it is already impaired. If you have blood pooling around your ankles, that is a different story.

Most of us are dealing with dysautonomia, not congestive heart failure. This is a defect in adaptation to orthostatic challenges, and requires more active measures than stockings.

If you gain stamina by wearing support garments, and can deal with taking them off when you need to lie down, they are an aid to coping.

 

[Countrygirl]

For my own surprise, pretty much the only one since most long term advocates are well aware of our typically dreadful circumstances, was Jen's discussion of how her hand used to form into a fist. I have very rarely heard or seen of this, if ever, aside from one case - me. In my case its more like a claw than a fist, but its the same idea. It does not happen very often, but I have to manually unlock my fingers as I have no control over them. Has anyone else seen this?

@alex3619 Have you not watched the story of Diana Longden who had ME, and died, sadly? Her husband, Deric Longden wrote a book about her which was made into a film called Wide-eyed and Legless. It is very funny,but poignant and well-worth watching. Diana also suffered from clawing and had what she called Fred's Hands made for her to stop her hands contracting.

I recommend watching it! Here it is:

 

[justy]

Ive sat with my legs crossed under me or up on the seat next to me all my life, my mother frequently comments on it and how ive done it since she can remember.

I also cant stand completely still with two legs straight - lifelong issue - i either stand with one leg over the other as in the earlier photo, or start moving around a little - having a baby on one hip was great as i could sway and 'rock' the baby, which was more for my benefit.

I have very rarely heard or seen of this, if ever, aside from one case - me. In my case its more like a claw than a fist, but its the same idea. It does not happen very often, but I have to manually unlock my fingers as I have no control over them. Has anyone else seen this?

Yes i have had this too - not had it for a while.

 

[Skycloud]

For my own surprise, pretty much the only one since most long term advocates are well aware of our typically dreadful circumstances, was Jen's discussion of how her hand used to form into a fist. I have very rarely heard or seen of this, if ever, aside from one case - me. In my case its more like a claw than a fist, but its the same idea. It does not happen very often, but I have to manually unlock my fingers as I have no control over them. Has anyone else seen this?

Not exactly but perhaps related: During the first 6 years or so I used to get a spasm/cramp of the base of the thumb on my right hand. It would intermittently draw my thumb very tightly across my palm and would have to be pulled back to a normal position. It would immediately return across my palm as I had no normal control of it. I can't make my thumb get into that position on it's own either. It was a painful .