Blood Pooling Question

[Trev425]

Hi All,

I noticed the poll on blood pooling, and I have a related follow-up question. Does anybody else got hot flushing due to the pooling? If I walk or exercise my feet get really hot and red and it's not pleasant. It's worse in the evenings. Just wondering if everybody with pooling gets this. One Dr. said erythromelalgia, but my neuro says it's just related to a virus which caused autonomic issues.

Thanks!

-T

[Mermaid]

I get the same, also in hands, worse in evenings and can happen sitting or lying as well as standing.

My doctor has also said this 'venous pooling' is 'suggestive of erythromelalgia', and that a subset of people with POTS have it (makes me wonder though why it doesn't feature more on this forum as a diagnosis). Also, while this is definitely uncomfortable for me and means activities are limited, I don't have the intense pain that other erythromelalgia sufferers seem to have. I've been reading up on erythromelalgia and looking at a forum, definitely prefer your neuro's diagnosis - perhaps just autonomic dysfunction generally?

[Katybug]

Yes, count me in. But I have worse issues so I've never investigated this one.

[gofl1]

I have started having this recently and am frankly terrified that it is the beginning of erythromelalgia. Everything I have read makes it sound like the worst thing in the world with little to no treatment options.

[Trev425]

Thanks for the responses. I find just talking on these forums to be cathartic.

From what I have gathered, true erythromelalgia seems to have a sensory component. I am also not in the excruciating pain that folks describe. I think if I didn't have venous pooling then I wouldn't have the problem at all, so I am wondering if there's a difference between the sensory condition or just general autonomic dysfunction. The treatment really seems to be tied to the underlying cause. If it's some neuropathy then you treat the nerves (gabapentin, etc). If it's autoimmune then you address the inflammation. The neuro says he's seen post viral dysautonomia of this nature resolve over a period of months to years so I am staying optimistic. I do think I have hypermobility type issues however, so I am starting to wonder if this had made me more susceptible to all of this.

It is definitely scary. Mine seems to be systemic too (some degree head to toe). I think I would be in a better place mentally if I never had searched the internet for the condition and seen the horror stories. I had CFS type issues when this all started, but fortunately I am about 85% recovered since 9 months ago when this all started.

[sue1234]

Count me in. I've been "flushing" for a few years. It also is worse in the evening, as many of you have said. Mine starts around my upper abdomen then travels up and down my hands. My hands swell and turn red. It all lasts about 5 minutes in normal weather, or if I'm in a warm/hot environment, it won't go away until I go to a cooler environment.

I have wrinkles on my fingers because the skin has stretched and shrunken due to the swelling so often.

I also have not worried about a formal diagnosis for it, as I know it is just part and par for the POTS course.

Trev425, I'm just curious if your neuro mentions what virus specifically he thinks might be linked to POTS?

[TCP]

I get pooling in feet, hands, belly, upper arms and even my boobs! I guess the damage to the nerve fibres of the extremities causes the blood to gorge and pool there. The heat is from the inflammation and blood changes. It will get worse as the day goes by. Elevating the feet/legs onto a large beanbag helps me. I sometimes use freezing gel or neurogen to help. I am now using a neurostim and that helps with the pain and inflammation.

[Mermaid]

It was my POTs specialist who gave me the 'erythromelalgia' diagnosis. I saw him again today and he said the same thing - erythromelalgia goes with POTs in a subset of patients caused by small fibre nerve damage/dysfunction so yes part and par of POTS course. I also had a viral illness, not named as anything, in Jan 2013, which kicked off all this. I had the redness and pain in hands and feet first before POTs hit and at the beginning the pain was very intense. I also have EDS. Still hoping he's wrong.

Mine also feels sort of systemic as can affect ears too and scalp - but not so badly. This 'flushing' is my worst symptom as when it happens constantly in hands it affects my ability to type (i work freelance from home) and in warmer temperatures keeps me inside, as well as unupright, near a fan to cool it down. My veins also pop out, a lot, very itchy and with a feeling of intense pressure to add to the rest. My hands don't swell but toes do.

Also feel VERY anxious about this after reading around on the Internet. My doctor today said he hoped it could be improved by treating the POTS. Not had great success there yet, still trying different things.

[TCP]

I had some symptoms of autonomic dysfunction years ago with ME in 1984 and then in 2007 the neuropathy spread up mu body from my toes legs, hands, arms and into my torso and finally my head. The neurostim is calming the areas down as there are three dedicated settings for pain (TENS), inflammation and healing.

[Trev425]

Perhaps I should have mentioned that I don't have POTS, but the blood pooling/autonomic issues seem to overlap with the POTS folks on here. During much of my twenties I had chronic anxiety and my heart would constantly beat fast and I had a host of anxiety related issues (IBS, depression, insomnia, etc). However, as tough as it was I was highly functioning and those issues resolved over time. I could write a whole story just on this battle. I am wondering if my nervous system was just doomed to fail from the start :/

I had many blood tests, but all tested negative. All of the major viruses, bacteria infections, STDs, autoimmune issues, etc. In fact, I still have not gotten EBV and I am about to turn 31. I know for certain I caught a virus because a few people I know all had the same mono-type of illness. They recovered in a couple weeks. I nearly recovered over the same period of time but then one day I woke up feeling like I got hit by a car and that's when my issues really kicked into high gear. A couple Docs suggested CFS. The autonomic issues led me to my neurologist who said it was a "super-infection". This is when multiple strands of the same virus throw the immune system into disarray. He said 1 - 2 years for a full recovery. I never heard of such a thing, but this guy definitely knows his stuff so I just accepted it.

I also have flushing in my nose and ears, which can be embarrassing. Also my chest. No real pain there tho. My hands get very red, but do not hurt. I think the only reason the feet really hurt is because I walk on them when they are engorged in blood. Elevating helps, and I prefer to cool with a fan than with water. Overall everything is just so temperature sensitive on the hot AND cold side since this all started.

It's easy to get really scared about all of these conditions. I think it's important to listen to the doctors and to try not to get into too many hypothetical thought patterns. Everyone's case is different so speculating on prognosis can be dangerous. I admit tho that sometimes it's hard not to let your mind wander.

TCP - did your ME/CFS improve over time? Did the autonomic issues subside with this? Sounds like you are struggling with some neuropathy. I am glad you are finding some relief.

Barb - what were the symptoms of your virus? Was it particularly nasty? Some of my symptoms were really strange.

[LastUnicornLady]

I get blood pooling, too. Especially in my feet, and I suspect in my abdomen as well. However, I usually have super cold feet along with that, not hot feet. So I guess that I can't really relate in that respect.

[brethor9]

yes I get this especially the lower extremities... they get really red, itchy and my legs ache like crazy....other times they get mottled and purple....my hands and arms are starting to do the same....I have so many other co-morbid illnesses ie MCAS/POTS/EDS and now Graves I can't tell which is responsible for it

Bren

[gofl1]

I have been on a beta blocker for about 3 years now, since the autonomic issues started. My heart rate back then used to be much, much faster than it is now, I think a combination of time, exercise and just taking care of myself better have helped. For the past year I have been on bystolic, a vasodilating beta blocker. The red/hot feet only started about 2 months ago. I am wondering if the beta blocker could be causing this issue as other parts of my system improve. Any thoughts? Has anyone noticed worse pooling after starting a beta blocker?

[Trev425]

I think it's worth talking to your Dr. about. It stands to reason that a vasodilator could be causing the flushing.

[Mermaid]

I haven't noticed any worsening of this symptom since starting a beta blocker personally. I'm taking propranolol, don't know whether it's a vasodilator one or not. I also take Midodrine, a vasoconstrictor, but don't think it does anything for the pooling for me. My Doctor has suggested I up the dose and take it more regularly to see if get any benefit, so am trying.

Trev - the sudden virus I had was fever, some stinging pain in thighs, fatigue, muscle aching etc - shingles was suggested as a possibility but without the classic rash. It was a week or so after I thought it had gone that the trouble started - intense nerve pain in hands and feet, stinging all over and then weird numbness. After a few months Pots, but it could have been years before diagnosis, perhaps never, had I not found this forum.

Bren, has any doctor suggested that Graves, as an autoimmune disease, is behind the PoTs symptoms? I've seen thyroid issues listed as a cause for PoTs. The symptoms are so similar. Anyway, I hope treatment improves your overall condition. When you get hot, red and itchy extremities, do you see your veins popping out all all? I never noticed my veins at all before all of this, now I often think I can see them all and I'm not fair skinned.

[Katybug]

I'm so glad this thread was started. It was hot (75ish) and humid today in Baltimore. I walked the dog for 15 minutes. When I got backI noticed ky feet were painful in a way I hhaven't felt since last summer....hot, aching, burning. To my surprise, when I took my shoes off, my feet looked exactly like the pics I looked up of erythromelalgia. You guys have got me thinking. After I get through my neck surgery, I think this is another thing I'm going to have to track down. I took pics today to show my docs. The clear delineation of where the red swelling started on the bottom of my feet was shocking.

[gofl1]

It has only been about a week now, but since I started cutting my beta blocker in half my feet have gotten significantly better. They are less red at night when the problem was worse and the burning is going away. I don't know if only Bystolic which is a vasodilating beta blocker can have this effect or all of them, but there definitely seems to be a connection. I did read that calcium channel blockers can cause erythromelalgia type pain as a side effect. Unfortunately my heart rate which has been great for a while is starting to climb above 100 again so I am going to have figure out a solution, but the feet were quickly getting bad enough that I am just happy to be rid of the pain.

[Mermaid]

Katybug - sorry you are having similar symptoms. Did you find the pictures on website of The Erythromelalgia Association? I think that's an informative site.

Gofl1 - glad you are seeing improvement. Let me know if you figure out an alternative to the beta blockers. I have problems with heat and cold and had to stop one beta blocker as it caused chilblains. I'm using propranolol as can take according to weather as it's take every 4 hours. But without I'm going from 55 lying to 130 making a cup of tea and so need something too. Figuring this out is such an added pain!

[Mermaid]

katybug - another thing I'd like to share with you for your perspective is the connection between erythromelalgia and EDS in case you get a chance to explore with your doctor.

On erythromelalgia forums there is hardly any mention of EDS/POTs. Of course it's entirely feasible people don't know they have either conditions and there can be so many underlying causes of EM.

However typing 'erythromelalgia' into the inspire EDS forum gets pages of results, this can't be a coincidence?

[Trev425]

I haven't been diagnosed with EDS, but I did bring it up previously as I have some hypermobility symptoms. He seemed dismissive. Now that I am more educated through forums such as this one, I am going to revisit it in a couple of weeks when I see him next. He helped commission a study on the condition, so I am interested in his perspective.

gofl1 - glad you are making progress let us know how it goes for you.

[gofl1]

Katybug - sorry you are having similar symptoms. Did you find the pictures on website of The Erythromelalgia Association? I think that's an informative site.

Gofl1 - glad you are seeing improvement. Let me know if you figure out an alternative to the beta blockers. I have problems with heat and cold and had to stop one beta blocker as it caused chilblains. I'm using propranolol as can take according to weather as it's take every 4 hours. But without I'm going from 55 lying to 130 making a cup of tea and so need something too. Figuring this out is such an added pain!

Barb I am patiently waiting for Ivabradine to be available in the US. I know it has been hit or miss for the few people on here that have tried it, but it seems like a much better option for someone like me whose primary complaint is tachycardia. It slows the heart rate without all of the peripheral effects. According to this article it should be cleared by the FDA in the next year http://www.forbes.com/sites/larryhusten/2014/04/17/fda-grants-fast-track-status-to-amgen-heart-failure-drug/.

[Mermaid]

Thanks for the information. I'm in the UK and Ivabradine is licensed here,as you probably know since you mentioned it.

There is a pots.org.uk website that lists it as a potentially useful treatment. I don't have a POTS doctor under our National Health System, I've been paying privately as POTs isn't really known of in Uk but am seeing a local NHS Cardiologist next week. I don't expect him/ her to have heard of POTs but will take info re ivabradine and try to get hold of it.

Will keep you posted.

[blueskies]

As I posted to barb about on another subject, I was diagnosed with erythromelalgia at the same time as I was diagnosed with POTS. It can get very painful -- and although it happens to my feet and very occasionally my hands, I also get it on my upper chest, neck, face and upper back. Sometimes my legs. Most of the time it is bearable as long as I can stay cool. Occasionally, something will trigger a more painful experience that can last for days. My legs and feet have felt like I've held them to a fire too long. Or my neck and face is read and sore and it can feel like my hair is almost cutting my skin when it brushes against my neck. Like bad sunburn.

I did have a look at erythromelalgia sites (just recently joined a forum) but am reconsidering staying a member. I joined as my erythromelalgia is getting worse. I got friendly, kind responses from members of the forum but some of the stories I read on the forum frightened me. I'm scared of a progression to a higher level of erythro pain. I'm pretty sure I'm going to see my doc about this and talk to him before I go back to the forum. I need medical imput. I also recognise that one person's severe pain is another person's moderate pain. We all have different pain tolerances. So many docs have told me I have a high pain tolerance. As has my dentist. My dad had a high pain tolerance. But some of the stories of severe erythromelalgia sufferers have scared the heck out of me.

blue

[Katybug]

Barb - I did go to that site as well as a couple others. They all said basically the same thing. I think EDS factors into everything for hose of us that have it. I also wonder how much of it is related to MCAS as well. Its a very MCAS type reaction. It wouldn't surprise me at all to one day find out that mast cells behaving badly and releasing neurotoxins near the affected areas didn't contribute to the neuropathy. I also believe that we will find out that all of this....POTS, EDS, MCAS, etc., is really some sort of genetic autoimmune disease. I find it hard to believe that my mom and her mother went through many of the same things and that that's a coincidence. I know we know EDS is genetic but I truly believe its bigger than that.