Watching Unrest again, I'm noticing something.

[Murph]

Want to make a few notes on flow-mediated dilation and this thread seemed as good a place as any!

1. The Youtube video where Mella talks about flow-mediated dilation is now online here. (This is the November talk where he gives the bad news on Rituximab.) It is a good talk with english subtitles. Gives a sense of the work they are still doing.

The graphics are covered up in the talk. But you can find one of them if you want to see the data.

2. I found this study gave me a good sense for what flow mediated dilation problems are.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2014404/

It suggests high doses of L-arginine and says even vitamin C has been shown to help a little.

--

3. I have grown increasingly interested in the theory me/cfs is partly endothelial and there is mounting evidence.

Here's something I wrote a couple of years ago:

My personal experience is that two seemingly distinct things trigger fatigue attacks. Alcohol and Exercise. Recently I realised that what links them is vascular dilation.


This presentation by Professor Chris Callaghan was pretty important in shaping my thinking too.


http://emerge.org.au/mr-chris-ocallaghan-disorders-blood-pressure-connective-tissue-elasticity/


I now wear compression pants all the time, eat a lot more salt, drink a lot of water and I have stopped worrying about my caffeine intake. I now suspect the reason I'm so mad for coffee is its vasoconstricting effects!


But how to integrate this with the perception that CFS is an immune disorder?


Perhaps an autoimmune response is attacking the cells responsible for vasoconstriction and dilation (the endothelium

?). If the immune system is attacking other kinds of epithelial cells too this could explain a wider set of symptoms.


Prof Callaghan believes that CFS is correlated with joint hypermobility (where connective tissue is degraded by autoimmune) and that CFS and hypermobility could be different manifestations of a broader autoimmune response.
--
4. I am probably now less obsessed with the idea the problems with the endothelium need to be about antibodies. Could be anything, but a failure to ship blood and oxygen round the body can explain almost all our symptoms from cog fog to lactic acid, as well as providing an explanation for exercise intolerance and PEM.

 

[Starsister]

This thread caught my eye as I was interested in discussion of the film Unrest, but I just wanted to chime in that I also have always, since grade school or high school, had my legs up whenever I could...my philosophy has just always been "why stand when I can sit" so I spent much of my youth sitting on the ground whether it be playground, class, political rally, store, or bus stop. For me, as early as I can remember, I've had some kind of leg pain. When a child, I would be in tears some nights from the pain, but my mom just called it "growing pains". I do have long legs so perhaps it was the real thing that teens can have when the bones are growing so fast. But the pain and discomfort never went away. I did read the childhood leg pain is not uncommon with hypermobility adults.

In the past, sitting cross legged would help the aching in my legs, and I just felt better all over. Now I also continue to do it because it distributes my weight causing less pain on my sciatic nerve and misaligned hip. I always prided myself in my being able to fold up like a pretzel. But is is a survival tool now and the only way I can take part in church, theaters, socializing, anything requiring sitting for long.
Now I'm realizing I have hypermobilty which is not a good thing because my joints have gone out constantly for over 30 years, but thank goodness at 63 I can still fold up my legs, usually, so I can work in a chair, or take over two chairs in an auditorium. I have no shame when it comes to comfort!

When I was at my worst in the early 90s, I was in so much pain all over, but at night my legs too, that the only way I could get pain relief to start to sleep was by laying backwards on my bed and resting my legs on the wall as much as a 90 degree angle as possible. If I could spend the whole day with my legs propped up on a wall, I would.

Right now as I write this I am aware of the hot aching from my waste down and am trying to prop my legs up on each other to lessen the pain, but then that hurts and decreases circulation with the pressuI can feel in them a sense of puffiness or swelling. I've not been formally diagnosed with POTS cuz my dr won't discuss such things, but I know it fits for me...something I'm pleased to have a name for finally. Perhaps I should have started a special thread for this, as I'm interested if others have the aching legs along with the desire to keep legs up.

I appreciate the discussion going this direction as it has helped me connect the dots and realize I'm not alone in this need to have legs up or crossed.
Jennifer Brea did not address it directly tag in the film, or not really explain, but she did elaborate more in one of the YouTube interviews. There were a couple of interviews where she brought things up I wish had been covered more in the film.

 

[Starsister]

"This presentation by Professor Chris Callaghan was pretty important in shaping my thinking too."
Murph, thanks so much for sharing this link. I watched his whole lecture. I can't say I understood half of it, I'm awful with accents, plus I'm not familiar with a lot if medical terms, but it really made sense and validated some of my issues, as I have almost all symptoms for OI, and with the exception of my joints going out constantly, don't have the characteristics of the test for hypermobility....although I can do that thing with my arms and turning sort if inside out. Thanks so much!

 

[ChiliPep]

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

I buy my compression stockings from CompressionSale.com. The brand I like is Jobst. It’s important to get the 20-30 mmHg. I like the open toe option. I get their “Relief” style, not as hot as others. Strangely their sheer options are very hot. It takes a lot of energy to get compression stockings on so sometimes I get them on then too exhausted to get out of bed, and they’re completely pointless unless you get out of bed. So I lay there wondering how I’m going to get the energy to get them off.

I bought my abdominal compression at Amazon as I wanted to try a cheap one first. It had good reviews though. But my foggy brain promptly misplaced it (it was Christmas crazy times) so I haven’t tried it yet. It seemed like something I could tighten with belts would be less strenuous than something I had to pull on. After reading these posts I’m going to put some effort today into finding it.

 

[Starsister]

Ittakes a lot of energy to get compression stockings on so sometimes I get them onthen too exhausted to get out of bed.

Rats, I haven't seemed to figure out how to quote something yet..but Chili, I'm glad you remarked that it takes a lot of energy to put the stocking on and it makes me think twice about ordering. I don't do well with having to pull things on, or things that are tight. Pulling on just my regular socks puts too much pressure on my lower back causing it to slip out, and anything tight rubs my skin and I already have that allodynia pain over every inch of my body that feels like millions of burning needles. I'd be happy if I could live in a warm, soft, fuzzy sack that never touches my skin.

 

[ChiliPep]

@Starsister I know how you feel, I just finally figured out today how to quote. Sounds like compression stockings would not be tolerable for you. I think they feel soothing to my skin once they’re on, but they are definitely tight and I don’t have allodynia which sounds horrible. There is some sort of contraption you can buy to help put them on. I’ll have to look into it. My cardio was adamant I get the 20-30 mmHg (amount of compression) full length (feet to waist) stockings but since I was never wearing them as it was exhausting to put on, I bought knee high compression socks and a Velcro abdominal compresssion wrap figuring it’d be better than nothing but haven’t had a chance to try my theory out yet. Some of the other posts give me hope, it might work.

 

[Starsister]

@ChiliPep ....oh cool, I just figured out how to do that thing where it highlights the persons name at least! Hadn't been using the @. I'm taking forever on this learning curve, but i can say now that PR is my absolutely favorite site for ME support...both medical knowledge, emotional support, and it offers lots of features that are helpful and make connecting with folks easier. Glad you are here!

 

[anciendaze]

@Starsister

If you have been having problems with joint dislocations and subluxations for many years, you should investigate the possibility that you have hypermobility-type Ehlers-Danlos syndrome. This is inherited, so you would likely have relatives with similar problems.

You may indeed have POTS, but that is not the only possibility. You could have orthostatic hypotension without tachycardia, if you have neurally-mediated hypotension. One problem in diagnosing this is that the vascular dilation and pressure drop may not appear for some minutes after you stand upright.

I don't know what to tell you about allodynia, except that it sounds like you need treatment by a doctor who knows a good bit about all these conditions. My unprofessional guess is that you have some degree of mast cell activation, as in MCAS. That tends to correlate with your other problems. Please note that I am not suggesting you have mastocytosis.

 

[Starsister]

@anciendaze , yes, I do know I have pots or IO and am in group for that, although the only dr who suggested it as such retired years ago and I don't have access to records and all the drs I've seen over the last 30 plus years who acknowledged what these things are with this illness are now retired or dead. But yes, I was told years ago by a body work practioner that I am hyper mobile and a new chiropractor also told me that a few months ago, although after joining online groups for both, I can see thankfully that I am very mild compared to many.

Someone on PR suggested the term allodynia last year, and I looked it up and it fit closer than anything, but I've been to several specialists since but no one will acknowledge being familiar with the term. Their progress notes show they have no comprehension of what I'm trying to explain to them. But I'm sticking to the term regardless. For some reason my metro area has mostly brain dead doctors who are owned by the mega hospitals. Thanks for comment about MCAS...I've read reference to it on here but haven't researched it...perhaps that will be my project for today.

 

[waif]

thought i'd chime in
i have hEDS and i love laying down or sitting with my feet/legs up because it gives more more strength to literally hold up my body. people with hEDS are constantly trying to hold their joints in...also sitting up my head weighs 500 lbs. gets exhausting. you're literally never at ease sitting up, you're always consciously or subconsciously "holding things in"

 

[Starsister]

thought i'd chime in
i have hEDS and i love laying down or sitting with my feet/legs up because it gives more more strength to literally hold up my body. people with hEDS are constantly trying to hold their joints in...also sitting up my head weighs 500 lbs. gets exhausting.

Love your pic btw! Yes, my head feels like 500 lbs many days also, due to cervical scoliosis and little cartilage left between vertebrae in neck. Hurts to wash hair and leave wrapped towel on head or even to push down on head to dry my hair.

 

[waif]

thanks! yeah i have a very straight neck....physical therapy helped me become mindful of my posture enough..but it's still always in pain. i have major tmj too. prob from my neck, i don't even know anymore. i had to wear a soft collar neck brace for a year because i hate sitting so much.

even now i realized i'm sitting with my legs up lmao

 

[waif]

having hEDS Is funny bc we have all these quirky habits that we don't even realize they're abnormal

 

[Starsister]

having hEDS Is funny bc we have all these quirky habits that we don't even realize they're abnormal

yup, I've found I've just avoided social situations more and more over the years because I am tired of explaining myself to others, and then when I do explain, they think it is in my head or that I just want to draw attention to myself, which is the last thing I want.

 

[waif]

Yeah I'm a total hermit. And sometimes when I'm really tired I just hand doctor a piece of paper with my history on it because it's just too exhausting to explain and I forget everything

 

[waif]

When I was younger though and I didn't know I had EDS it was bad too because I had quirky habits but I had no explanation for them. So in social situations I'm sure people just thought I was weird

 

[Starsister]

When I was younger though and I didn't know I had EDS it was bad too because I had quirky habits but I had no explanation for them. So in social situations I'm sure people just thought I was weird

Yes, I always type and print out my list of symptoms, and narratives when seein somebody new but I've never seen evidence that they read it. And with specialists, they get mad when I speak it, and say that most of it isn't in their area. A physical therapist warned me of that last year..she told me not to talk about all the different issues I'm having because it just annoys them if they do not know what to do. But I've told them I'm sorry but I don't have any way of knowing what they know about unless I run it by them...and I can tell most things are interconnected so what sense does it make to not give them the big picture. The neurologist told me any nerve pain not in my hands and feet isn't in his field. I give up.

I am conforted to know how many folks keep legs up or crossed as I've felt so bad about this most of my life. I have had increasing numbness in hands feet arms and legs since mid 1980s...no reason that they know of.

 

[waif]

Can't see the forest for the trees! That's actually a good indicator of whether or not I like dr. If I like doctor I feel comfortable explaining all of my bizarre medical history regardless of their specialty. But yes some doctors I can tell immediately they're going to be dismissive in which case I barely say anything and I just tried to manipulate them for some tests, LOL

I'm severely knock kneed partially from sitting on my legs as a kid.

The numbness in my hands is the most bizarre thing. Once or twice over a six-month period they will feel less gloved and I have no idea why and it drives me insane.

I'm so grateful for smartphones and voice recognition otherwise I'd barely type sentences to people.

Also like you a chiropractor was the first person to alert me to eds. Before then I saw a rheumatologist, literally the worst doctor I've seen in my entire life, and he told me I was double jointed. So I went home and looked it up..... Very briefly because my body was on fire and read it was fake so I thought he was a quack. If he said ehlers-danlos syndrome he could have changed my life. It's extremely frustrating

 

[waif]

I feel like I have sciatica sometimes too

My legs will get heavy...pins and needles

I don't know if it's small fiber neuropathy or something more mechanical in nature

I have a Trendelenburg gait so my hips are lopsided also which doesn't help things

 

[Faux]

to me that was just "normal" ME CFS stuff...I realized pretty early on that I had to keep as horizontal as possible.