Night Sweating

[nantynannie]

Hey All,

I have not posted on this board in a few years, but after reading just a few topics today I am still amazed at how many of the same symptoms we all have, yet the doctors remain clueless. The allergy feeling (like the flu), pain in the legs, night sweats, sleepy after eating, no temp regulation, etc. It is so nice to read this board and see I'm not alone even though most docs remain ignorant of this condition.

Thank you!

[Cblooms]

My grandaughter now age 20 has Ehlers Danlos Hypermobility. Since she was a very young child, she sweats all night. It seems like she has POTS but doesn't complain of tachycardia. Her doctor tried Midodrine that was absolutely amazing for one day only and it didn't work at all after that one day. No one can explain that? 
 

she sits with her legs pulled up to her chest. She has done this her whole life.

she is very fatigued and feels weak much of the time. She cannot work and has no social life. 
 

she has a primary care doc that is baffled. What kind of doctor should we take her to?

[Pistol]

@Cblooms Welcome to this forum! I am sorry your granddaughter is going through this. It is very possible that she has dysautonomia of some kind, even if she does not have tachycardia. But in order to determine oif she has POTS she should be seen by a cardiologist who can order tests that will monitor her HR when she stands up. With Ehlers Danlos often the blood vessels are too elastic and therefore don't constrict as they should. This then leads to the heart having to beat faster and/or harder to pump the blood to all of the organs. This extra effort, and the fact that sometimes the blood does not get to the brain fast enough, can cause the fatigue. 

Sitting with the legs pulled up, or crossing the legs all of the time when seated, is often a compensation mechanism that people do even in childhood because the body has such a hard time pumping the blood from the feet to the heart. So crossing the legs will stop the blood from going to the feet and therefore more stays in the upper body. I have done this also my whole life! 

Until she can see a cardiologist or autonomic specialist that can determine if she has dysautonomia I would encourage her to DEFINITELY wear compression hose, waist high if tolerated. But it should be measured by a professional medical supply store because it is essential she gets the right fit. It is also important that she increases water and salt intake. This will give her blood more volume and that helps the vessels to pump it because if there is more volume then the elastic vessels will be tighter and can have more pressure to pump. 

Exercise is also very important. If she can tolerate it any exercises that strengthen leg muscles and abs can help the body use the muscles to pump blood up to the heart, organs and head. riding a bike can be good, swimming is good, and a rowing machine is what I use. Some people are able to walk or even jog, if she can tolerate that it would be good. 

I would ask her PCP to have her referred to a cardiologist at a major medical center near you to be evaluated for POTS, which commonly includes a Tilt Table Test. 

[RubywPOTS]

Absolutely! It was so embarrassing to me when I would wake up next to my boyfriend and my side of the bed was damp because of night sweating! I thought I was broken until I finally realized it was a symptom of POTS. Then I realized I was broken LOL but now at least I know why!

[Diannna]

I'm but are ,I totally agree that my sweating is 24/7 .  You get hot then the chills , weakness like you are about to pass out, I also get the feeling that I have to go to the bathroom or I will be doing something on myself whether urine or #2. This is not a good life because you don't know when it will happen. I now wear incontentence pads for protection when I am going anywhere, as well as carry an extra t-shirt for when I soak the other one. That is how I have learned to get a handle on it. 

How do others respond.