Goschi

Hi Libby, thanks a lot for your many interesting thoughts!!

In fact, our symptoms are quite different, you are right. But what caught my attention is with which words you described the feeling in your legs: "more an itch/ache combination than a pain". That´s exactely how my legs feel! "Pain" is indeed not really the right word for it.

I have had POTS-positive 2 TTTs (Sept. 2013 and April 2014) and I really can´t remember whether I had this specific "itch/ache" in my legs then. My symptoms have changed so much during the last 2 years, and in fact I am improving so much at the moment (except the leg ache when sitting...) that I should better not complain about the remaining symptoms and be glad that I got so much of my normal life back!

I hope that you are not too bad right now - but however, stay optimistic!! Things can and WILL improve!

Best wishes, Goschi

@Stefanie again: I have already tried compression stockings when sitting - they make the pain even worse! And lifting up my legs does nothing to the pain, already tried that too...

Stefanie, that's what I first thought - it must be blood pooling! But why does it go away when I simply stand up and keep standing motionless? The blood pooling must even be worse standing than sitting?

To my surprise, I feel no pain when standing and walking, but only when sitting. In addition, my legs still get some slight patchy skin when I stand for a longer time (from blood pooling I guess!?), but this never happens when I am walking or sitting. With the latter, only the pain comes...

Anyway, thanks a lot for your suggestion!!

xRobin, I thought about something like sciatica already. But the pain is absolutely the same in both legs, but I will ask my docs again for that.

(Already had MRI and CT of lower spine, everything came back normal...)

Thanks for your idea!!

Hi Corina, thank you very much for your reply!

Despite the fact that I am actually improving at the Moment, I start to believe that this leg pain while sitting may be an important hint to the cause of my pots.

I only realised now that Pots patients seem to have this symptom very rarely - I always believed it was absolutely common and kind of "basic" for pots...

Bumping this thread once again -

Does really nobody here has the symptom of aching legs when sitting...? Is it so unusual for Pots...?

Thanks, looneymom and Katybug!

I had my minerals checked recently, everything is perfectly within the range. And my "restless feet" only happen once in week for a couple of minutes - if at all.

My actual problem is the leg pain when sitting, that increases the longer I am sitting. I guess, it must have something to do with this particular posture, as it doesn't occur at any other body position.

I take 15mg Mianserin every evening - a relict from the time when docs told me, it was all in my head...

As I am in a good recovery process atm, I think about slowly tapering off the mianserin. But of course I don't want to risk my recovery.

Has anybody taken mianserin and made (bad?) experiences with a slow and careful taper?

I rather hope it could even accelerate my recovery as I surely don't need an AD at the moment and I don't want to give my body the butden of any unnecessery med.

Hm, interesting aspect... I have a kind of very mild "restless feet (only)" symptom, but only when I am supine. I never thought about a connection to a (full) leg pain when sitting. Can there be such a connection...?

I had something similar in my worst flare - 95-100 HR when supine, 135-150 when upright/active. Even my 2 TTTs showed this pattern.

And as a consequence, I got the POTS diagnosis, as I fullfilled all criteria: HR increase of more than 30bpm and/or HR going over 120 when tilted upright.

As I see, you too fullfill all criteria - being already tachycardic when supine doesn't exclude POTS, this would be totally new Info for me...

I hope, you get another expert to look at your test results soon!

Best wishes!

I guess, I can relate to what you describe! I can't describe it more detailed either, but "chest discomfort after being out in the cold" comes very close to what I experienced since childhood!

For example after sking, I always had it.

Don't know how much it is POTS-related or kind of sign that you are predisposed or more likely to get POTS. Anyway, it worsened when I got POTS. And now it goes (slowly) back to normal since I am in a process of recovery.

After I made a surprisingly fast and thorough recovery during the last 6-8 weeks, there's just one symptome, that is left and still bothers me quite a lot, to be honest.

I am talking about leg pain, especially when I am sitting for a longer time than 1 hour. I can't describe the painful feeling properly, it's just "pain and discomfort". As soon as I stand up and walk around a few steps, it vanishes quite soon. Even when I simply stand up, it starts to improve significantly within a rather short time!

I can't remember whether this leg pain (while sitting) was as strong when I was in my full POTS flare - maybe I just didn't feel it that much due to the whole bunch of symptoms I always had.

Anyone has similar experiences? Any ideas what it actually may be...? (and of course, what might help! ;-))

Thanks and best wishes to all!!

Hi Issie,

I also could always decrease my HR when I was walking, obviously due to the stronger working muscle pump!

However, we seem to be totally different types - clonidine (vasodilator) made me as bad as I was never in my life, midodrine (vasoconstrictor) helped me a little bit...

Btw issie - did you ever try midodrine and did it help you...?

I am so glad to hear you are on the road to recovery! - I am too, but in contrast to you, I really don't have the least idea WHY I am improving (right now).

Best wishes!!

Yes. As I said earlier - I've tried it all. That was absolutely the WORST thing I EVER tried. I can not vasoconstrict my veins. That compounds all the problems. If anything I vasodilate. There are different subsets of POTS people. We can not all be treated the same way. And some things suggested by docs I question for ANY of us POTS people.

Issie

Then I guess clonidine could have helped your symptoms? It is a vasodilator.

Btw issie - did you ever try midodrine and did it help you...?

I am so glad to hear you are on the road to recovery! - I am too, but in contrast to you, I really don't have the least idea WHY I am improving (right now).

Best wishes!!

Thanks a lot for this article, Sue!!

I have had almost all of these dermatological symptoms, and - no wonder! - most of them now dramatically improve or even completely vanish parallel to my recent process of recovery!

Wishing you much success with looking at your skin signs and getting something out of it that leads to improvement for you!!

Hi, Margigold,

I am also very sorry to hear about your diagnosis. As far as I know there are some good medications for microvascular diseases (?).

May I ask which tests confirmed your diagnosis?

Wishing you all the best and a New Year with substantial improvement!!

Hi MakeMeErised,

I am really sorry to hear about your diagnosis - however, properly treated, PH can be kept under good control and patients can lead a long and mostly symptomfree life!

I do know a good friend of my grandmother, who has had PH for many decades and is now in her early eighties, doing quite well! So stay positive!! In addition there is much research going on for PH at the moment, You will definitely get lots of benefits from that in the future!

Just one question: Why did you (and your docs) originally believe you might have dysautonomia? Do you POTS? And if so, may PH be an underlying cause of POTS...? I have never heard about that (?).

Alle the best for you and don't worry!! You will be treated effectively!!

Hi Praxxtor,

a BP that is stable (and remains stable for longer periods, i.e. for example 30 minutes) is indeed rather unusual among Pots patients!

Do you take any meds? What about your heartrate, how does it usually react to changes of posture?

@blu: I am very sorry that you haven't got any improvements yet. And for 13 years, that's actually beyond my imagination, to be honest. You are incredibly brave, I can only admire how you cope with this...

But let me comment something what you told about your doc and his prognosis. When he originally told you, you will improve rather soon, he was actually wrong. Now he tells you, you may "never" get rid of this condition. And this time you can be sure that he is right?

I see this as just another confirmation for the fact that medicine still has no answers yet!!! And your chances for eventual improvement don't depend on his opinion!!

Don't give up hope!! Don't stop trying new treatments, if they seem promising to you!

And there is a chance that pots goes away even after decades!

2 months ago I met a female pots patient from another town of my country. She had pots since her mid twenties and only got diagnosed 4 years ago when she was 51. Today she is 55 and totally free of symptoms - without taking meds, without identifying any cause, why pots almost suddenly went away for her last year.

Everything is possible!!! Keep up hope, blu!!

Btw, because Paxxtor asked - I am in my mid forties. My Pots symptoms started very, very gradual about 2-3 years ago, maybe even a bit earlier.

I can't recall at all a particular date when I started to feel that something is "different" or "wrong" - only a year. It was definitely so on many single days in 2012. maybe already occasionally in 2011? Or first signs even earlier? I really don't know. It all went downhill soooo slow... :-P

Thanks a lot to all of for your thoughts!!

Every detail is very much appreciated.

Anyway... If I would be cynical (and I am tempted to be at the moment, really sorry...) I would summarize that we patients do in fact not know anything really substantial about our condition....

(Being a member and contributor of this forum for some time even confirmes this feeling for me...).

That's definitely not our fault. It's the medical community that should know more. Up to now after reading close to 250 articles and studies, I get the Impression that docs worldwide are still in the very first stage of simply describing what's going on with us - and far, far away from starting to understand, what's wrong...

It may seem to you very, very strange that I write these rather bitter words right at the time when I am improving so much.

But in fact there is a direct connection. When I was very ill, no doc could help me. Now that I am getting better, no doc has any idea why.

I really didn't expect to develop a bitter and sad mood when improving eventually. However - at least these days - it simply feels for me that I have every reason to feel that way...

I wish you and your beloved ones all the best!

Be sure that improvement will come for everybody!

More than 2 years ago, first signs of Pots came up my way (then I had no idea what was wrong, nor did any doc, except that it's all in my head).

In spring 2013 Pots literally "exploded" and brought me down to practically bedbound. Luckily, I got diagnosed in summer 2013.

Many medications and lifestyle changes later, not the least success was achieved. Docs had no idea what to try next. I still found no doc who is able to adress my small fiber neuropathy (diagnosed this year).

However, since 3-4 months I am definitely on the road to recovery. First, the improvements were just small steps. Lately, I am getting better at an almost incredible speed.

Though I am so much relieved and glad - I really would like to know WHY I got/get better eventually? Atm I don't take any Pots medications anymore (stopped 3 months ago - coincidence...?) I never really "exercised". When I was very ill, I couldn't tolerate it. Now I can do so much more, but I just carry on with every day life - I don't explicitely "exercise".

I have read so much about Pots/dysautonomia since summer 2013. And I guess I do understand much of what can be wrong in our Pots-bodies (a lot of things, indeed...).

But how can all that/these complex misfunction(s) suddenly start to improve without (!!) taking any measure for it...?

Don't really know what to think... Just wanted to write down these lines, as they come up to my mind so often these days...

@artluvr: When I wake up, my pulse is about 70, but lately it happened often that it was 90-100 right after I went to bed in the evening. Sometimes, this kept me from falling asleep for some time.

I really would like to know what the pulse in our ears means?? There must be a physiological cause.

I too hear my pulse in my (left) ear almost constantly.

Didn't know that this seems to be common with Pots - thanks, Katybug for the Info!

I was always wondering, as the so called "pulsatile tinnitus" my be an indicator for some other conditions. Did your doc mention any special Pots-cause for this...?