Katybug

I do experience this. My palms look like your's but my fingers do not become that red. Mine stay about the same as the coloring of my palms. This develops daily any time I am standing up. I will also experience some numbness if I keep my arms bent tightly for too long. I have to sleep with them fairly straight or the numbness and discoloration will occur. 

I have been checked Raynaud's and do not have that but I do have mild venous insufficiency in my arms and legs. That was diagnosed through Doppler studies conducted at my cardiologist's office. It has been attributed to my vascular tissue being inappropriately flacid due to my Ehlers Danlos Syndrome  (EDS). 

Just as an aside, while I may have had very mild symptoms of POTS, EDS, and MCAS throughout my life, I was not diagnosed or disabled by any of it until I had tick borne illness back in 2007 when I was 32 years old. It was like the Lyme/Babesia allowed these other low lying issues to bloom. 

I hope you continue to make improvements and find more answers. 

I'm in Baltimore and I have been seeing Dr. Khurana since 2011. He specializes in treating dysautonomia. He has his own testing equipment for ttt, valsalva and breathing tests, and sweat testing. 

He is very knowledgeable and keeps up on the latest research. He is also a certified headache specialist which comes in handy since so many of us have migraine.  

He will seem a bit clinical at first but he is very compassionate and has a deep understanding of how debilitating this can be "even when we don't look sick". (And he also has a quite good and dry sense of humor.) 

I also have a cardiologist who is actually the doc who diagnosed my POTS here in Baltimore. She is not an "expert" but has a solid understanding of POTS and orthostatic intolerance. Dr. Khurana actually encouraged me to keep her on my team and they work to compliment each others efforts. I can PM you her information if you would like. Let me know.

I have constant joint pain in both my large and small joints but I am diagnosed with EDS and MCAS in addition to my POTS. The joint pain has been attributed primarily to the EDS by my docs with a side of inflammatory response from the MCAS.

I recently revisited with a new rheumy who is very educated in EDS. I wanted to make sure I didn't have something rheumatoid going on because my pain is at a point that I am having to live on low dose prednisone to function or my joints get to the point of disabling. He explained that they have found chronic tendonitis and bursitis in EDS patients, particularly at the tendon attachments, which are right in the joint capsule.  He said the pain levels from this can rival the pain levels of his patients with lupus and rheumatoid arthritis.

I do find that when my migraine pain is bad or I've had several days of bad POTS symptoms,  my joint pain tends to be flared up. But I don't think that's surprising since this is a weak spot for me and my body gets very run down at these times. I believe my body struggling to maintain itself contributes to additional inflammation at these times. If I eat something that causes a mast cell degranulation, I will also have a flare in my joints. 

FWIW, I think that there are so many different presentations of dysautonomia (a term that covers several different syndromes), that seeing a doctor that specializes in dysautonomia (I might look for a specialized neurologist) seems like it might help you sort out what this is.  There are people that I've seen receive a diagnosis of generalized dysautonomia because they displayed autonomic dysfunction that didn't fit neatly into one of the specific syndromes. I believe it would take a specialist to sort that out. For as many symptoms as we can relate to with each other, none of us has exactly the same presentation because the dysfunction of the autonomic system can affect most major organ systems to one degree or another.

No, you're definitely not the only one that hates the wait. Treating this illness is a serious exercise in patience and humility.

Midodrine is used specifically to raise low blood pressure. Do you have low bp?

Welcome! 

I was not able to tolerate propanolol because it made me like a zombie....the fatigue was overwhelming.  

As for your comment that you shortness of breath and muscle weakness might be worse, beta blockers are contraindicated for people with MCAS as it can cause mast cell degranulation, and, therefore, breathing problems. I don't know if you have MCAS or not, but thought I would mention this just in case. I believe there is also some concern with beta blockers and asthma but don't quote me on that.

I take florinef every other day because it makes my migraines worse if I take it daily. It works for me. It would be more effective if I could take it daily but a lower heart rate and a worse migraine cancel each other out from a functional perspective.  The only thing I would say is I notice my thirst varies with the days I take it, so I have to be careful to keep drinking even when I'm not as thirsty.

valiz- LDN is low dose naltrexone. I haven't had any poor effects on my sleep from the mestinon although I'm still on only one dose in the AM. I see the neuro at the end of the month and will likely increase the frequency after that. 

I'll update if my docs say anything useful.  I am, unfortunately,  not hopeful right now.

I am going through a new phase where I am truly more ill when I exercise. My migraine pain is spiked within the hour, my fatigue is worse for days, the following 1-3 days my tachycardia/dizziness/GI issues are all worse. I've tried pushing through hoping that after a couple weeks of exercise, my body would readjust but it actually gets worse, like a cumulative effect, instead of better. I see the neuro at the end of the month and the endocrinologist this Friday. I'm hoping one of them has some feedback. I truly hate being sedentary. 

The additional doctor's name I just received is Dr. William Slater, Cardiologist, NYU in NYC.

We can't give medical advice,  so I can't really say who you should see next. However, we do have a physician list that may help you find a doctor in the geographical area you are considering. I think I received an email yesterday for a NY doctor so I will look up that name and post here for you too since it's not in the physician list yet.

Here's the link to the list:

http://dinet.org/index.php/physician-list?view=physicians

Interesting.  I nurse a coffee or Coke when I need some vasoconstriction or for my migraine.  But, as much as I like tea, it now makes me nauseous. I wonder if the vasodilation is why as my first presyncope symptom is usually nausea. 

A big welcome to our newest members! 

Welcome,  Mary!

Your story has a familiar ring. Glad you found us!

If you haven't already, here is our physician list for you to see if we have any docs listed near you.  

http://dinet.org/index.php/physician-list?view=physicians

Here is another study showing how stem cell treatment can cure neurological deficits from stroke.

https://m.facebook.com/story.php?story_fbid=910642849062316&id=100003498282215

Here is some exciting new developments in the treatment of MS, which often can have dysautonomia as an effect of the illness.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)30169-6/abstract

Thanks, Kaitlyn.  I think we probably read the same information.  ☺

Hi Kaitlyn, 

I suspect I might have PPH. Were you "officially " diagnosed with PPH, and, if so, what was the testing? I've been reading about it but the testing is unclear in what I've found. 

Thanks, 

Katie 

Good article! 

Welcome aboard new community members! 

Sent you a PM.

I have ridden for 38 yrs and trained horses for 27 of those. I'm hoping your doc was joking about the seatbelt because that would be flat out dangerous to bind yourself to the horse in any way. And as safety goes, please consider wearing a helmet.

As for dysautonomia,  super hydrating before, during, and after the ride during the summer months is important  (even for healthy people.) I find that my problem is not actually while I'm riding because you are using your legs muscles and keeping the blood pumping. It's when I get off that I tank from a POTS perspective. So when I get off, as tempting as it is to stand still, I have to keep walking or lie down immediately or the blood pooling in my calves will trigger presyncope. 

As for EDS, my worst joints are my hips. I have found that I have to ride in an English saddle because the seat of the saddle is narrower. (And riding the more narrow built horses helps too.) I also have to ride with my stirrups a bit shorter than what is correct because it allows me to relieve some additional pressure off my hips. My hips will start to dislocated if I don't take these precautions. Because EDS affects different joints differently for each person, you might have to see if the riding aggravates anything in particular and figure out modifications specific to your needs.

Do you have riding experience from prior to developing health issues?