Goschi

the moment I try to straighten my spine, it feels like my BP bottoms out. My hearing gets muffled, my lips feel cold, and I start having small waves of nausea roll through my stomach.

Wow. That is exactely what I experience, word by word I would describe it the same way...

Sitting with my legs/feet up is definitely better than having feet down on the ground, that's true. However, even in the legs-up-position I can't tolerate sitting for longer times. I will get very jittery quite soon and start to feel weak. When in a steady movement (as f.e. when walking) I don't feel so jittery!

It's really a pity, I am longing so much for sitting somewhere quietly and simply relaxing...

Hi, Foggy! Thanks for your reply! Of course I am very sorry that you also feel like that - but you may understand that it's also a kind of relief for me to see that I am not alone with this...

Did you find any explanation for this paradoxon? And even more important - could you find something that helps you feeling better when sitting?

Being Supine is of course the best position. I can also walk for some time/distance (recently extended, due to midodrine I guess), I can stand for a while, countermanouevers help (midodrine too!), but when I should be sitting for longer than 10 minutes, I feel like dying.

Especially, if I have to do some "tasks" sitting (reading, writing, eating, talking to somebody).

Anyone else experience this strange "ranking" of tolerating postures...?

Hi Robin, I just realised that also my feet get red when I sit (tough not spotty too!) but the rest of my leg's skin keeps it's normal colour.

My docs here in hospital seem to no longer search for explanations of this phenomenon and concluded to call it "autonomic dysregulation".

LOL.

I sometimes suspect to have it, as I find myself getting bruised very easily, having a rather thin and soft skin (though not too stretchy) and I had a varicocele, when I was 14 years old.

However, I am not hyperflexible at any joints, even the contrary, to be honest.

Anyway, I think about making the test for the vascular EDS.

Thanks a lot, xRobin, for the pic!

And yes, it looks very similar to mine - though not completely "identical", this is definitely the same phenomenon!

However, my docs here in the hospital say this would neither be livedo reticularis nor acrocyanosis, but "something else"...

Does yours disappear as well as soon as you start to walk or sit down? Mine becomes only visible after 2-3 minutes of standing still.

Hope you are doing fine, best wishes!!!

Sorry, very foggy today - the research findings do suggest a cause why we often feel better in cognitive way in the evening? Couldn't find an explanation for that in the article but, I am not good with reading/understanding today ...

Hi Clb75,

thanks a lot for your detailed thoughts on the mottled appearance of our legs!

I asked the docs here about acrocyanosis and the replied that the darker part of my skin is "not bluish enough" to be this. In fact, the darker areas of my skin are rather a very light red, almost going into pink sometimes.

The pics on the net also don't really look like what I have on my legs...

Unfortunately, I don't tolerate compression stockings. When I wear them, I have almost no feeling in my legs and thus walking becomes practically impossible.

I am now on 2,5mg midodrine four times a day - it still helps a little bit, there's no doubt. But I am a little disappointed though, I expected a more significant difference, to be honest...

Hi and welcome Beneficii,

as a first step (before going to a more specialised autonomic clinic/doc) you could try to find a doc who would perform a so called "Poor Man's Tilt Table Test". In fact, every GP could do it easily and it will give you a first idea whether POTS could be an issue for you.

However, a complete autonomic testing should finally be done!

Good luck and best wishes!!

Hi Rachel,

thanks for the Link to this article, I didn't know it!

However, I had the chance to talk to the author personally about 3 months ago, when I was in the hospital where he works.

He wasn't only sure that I don't have any type of vasculitis, but als denied that there could be any connection between vasculitis and pots. I was a bit "surprised", to say the least...

Thanks again very, very much for everyone's kind messages! It is so encouraging to know I have the support of dinet!!

As for the "mottled skin" on my limbs, my docs still don't know what do say about it, just that it's definitely an issue of blood circulation right under the skin.

It doesn't really look like livedo reticularis. About 30% of the skin on my limbs looks totally normally. The other 70% appear in a bright red. But this red area is interspersed with an irregular pattern of lots of very white circle round patches in the size of large coins. All that only happens, when I stand for some minutes. It won't appear when I walk, sit or when I am supine. Very strange, especially that all the docs have never seen something similar.

As for the psychology: Of course I know about the psychological impacts of this chronicle illness and its impairments. I simply didn't expect the severity of the hallmark pots symptoms to be so directly related to psychology at times...

So wonderful, congratulations!!

I send you lots of supporting thoughts to maintain these achievements and eventually getting even better and better!

Hi, Lauren!

According to recent studies, Fibromyalgia can be connected to small fiber neuropathy!

There are some studies from 2013 and early 2014, just google the terms - you'll find them easily!

Hi, Becia!

I am so sorry you still have to go thru bad times - I send you as much of power and strong nerves as you need!!

Concerning side effects: I follow a very simple rule: Everything which is an overall improvement in life quality, I will accept. If general life quality is lower than before, I won't take the med.

Of course it is based on my subjective definition of life quality, but that's the only parameter that counts for me.

Raisin, that really made me laugh, thanks!! :-))

In fact, some docs here literally exclaimed "check THIS out", when they saw my mottled skin! My "mosaic" only shows up when I am standing (only a slight idea of it when I am sitting and practically not at all, when I am walking).

So, in my case no connection to temperature. Btw, sweating: I developped almost anhidrosis over the last months, but here in hospital I started to sweat again, also on my limbs! Life with pots is just a permanent surprise... ;-))

Hi Raisin!

Thanks a lot for your detailed reply - they want to have my on 5mg midodrine 3 times a day too, or at least try to find out, how I would react. 2,5mg 3 times is already helping, no doubt.

Concerning my mottled legs, all docs here don't make a direct connection to blood pooling. And regarding the fact, that my legs look exactely the same with the midodrine (and with my increased physical abilities!) they may be right, also your symptoms don't really support a direct relation between blood pooling and mottled skin.

However, the docs here always sound and look very much concerned, when they see the full "mosaic picture" of my skin... I am curious what kind of answer they will finally have for this.

Hang in there Goschi. You will get some answers soon.

Thanks, Rachel, I am confident I will have lots of medical answers soon, hopefully combined with treatment options.

However, the first answer (concerning the small element of psychology) I already got - luckily, noone from the medical staff here realised, and I definitely won't tell anybody.

Today I realised something which I really don't like at all in the context of my dysautonomia/pots.

Since a couple of days, a physiotherapist is walking with me along the hospital corridors. She always has a wheelchair at hand, in case I need to sit down, she offers me to lean on her, whenever necessary. I never need any help, I simply walk without any problems and feel strong and safe.

But today, a new neurologists came to me and wanted to take a look at my gait. She walked along the same corridor with me - but no wheelchair, no offer to help me. And in fact, I was feeling shaky, trembly and very, very potsy...

Though I strictly dislike today's insight, I have to admit: There is definitely a psychological element within my pots. This was definitely not the case when I was already symptomatic and undiagnosed, and also not during the first time after my diagnosis (1 year ago).

But now, after a one year rollercoaster with pots, including lots of near-syncopes in public, numerous trips to the ER with hypertensive crisis, several unsatisfying hospital stays, the struggle of every day life - now, a psychological component has in fact become part of my whole condition.

I hat this finding!! But I have to accept it...

I know the feeling quite well too - breathing in seems to work normally, bute the usual effect of the air getting into my lungs simply won't kick in. Very disturbing indeed...

However, I also know a kind of opposite phenomenon: A feeling of having too much in my lungs and not being able to breath it all out, despite the fact that I can take a full expiration without problems.

Thanks very, very much for all of your kind supportive and so much encouraging messages!

Up to now, I don't have any clear results from the numerous tests; especially those for autoimmune issues seem to take a while.

I wish you all a bright and happy summer day!!

Wow, Andy, that sounds great!! Congrats!!

Just referring to your first question - what exactely do you feel improving?

Good luck for more progress!!

Hi Macca,

that sounds quite impressive, Congratulations for being so persisting!!

May I ask, how you can handle the "rest" of every day life, despite your disciplined exercise?

Best wishes for further improvements!!

Thanks again, Hearts, for the fast reply! I already let the nurses know, a doc is on her way to me. I will wait and see...

Hope you are doing fine? Have a nice sunday!!

Just one more question about Florinef - took the first one this morning and do feel strange: Jittery, slightly confused, agitated in a very unpleasant way...

Anyone else experienced this? Does it go away...?