EDS/POTS/digestive troubles

[MaryJo]

Hi everyone,

I am 31, from the UK and have been diagnosed with EDS and POTS. I also have had really bad digestion (possibly GERD) and I wonder if this is part of POTS?

The advice I received from the POTS specialist was to just increase my salt intake, try counter-manouvres and increase fluids. He did not want to try any medications. It would be great if I could manage without any meds, but at the same time when I read down the forum everyone else seems to be on some form of medication. I am quite badly affected, and suffer with terrible chronic fatigue which I have been informed is POTS caused. Whilst I don't want to take any meds unecessarily, I do wonder if I should be trying anything else. The POTS is really robbing me of life, and so I would be really grateful for any suggestions.

Thanks in advance.

[Gena]

Hi MaryJo,

Welcome to the forum. I have POTS, MVP and fibro and I am currently medication free, but I do not have EDS like you. You'll find there are others on the board that are med-free or close to it. I know EDS can cause a whole host of other painful problems. And GERD can often be a symptom of POTS, whether you hav EDS or not.

I would follow your doctors advice for a little while to see if the non-pharmaceutical measures work. In addition to increasing fluid and salt intake (natural sea salt with all the minerals is best), you may also want to try adding an electorlyte drink to your regimen, salty broths, light exercises (whatever you can tolerate) a good multi-vitamin and healthy diet and compression hose.

As far as the GERD goes, often times this is best manged by changing your diet and avoiding the foods that aggrevate this condition. I know some people have GERD no matter what they eat. I take digestive enzymes and natural acid easing supplements if I start having digestive problems.

Don't get discouraged! You may be able to get your life back and manage your symptoms with a few simple changes. If they don't work, then you can always talk to your doc about trying some of the basic POTS meds like flourinef, BBs, SSRIS, mestonin, etc. I have come a long way since last summer. I still have relapses every so often and deal with symptoms every day, but I'm able to work full-time and live a fairly normal and active life.

Best wishes to you, and I'm glad you found us!

[MaryJo]

Hi Gena,

Thanks so much for responding and for your welcome.

I have tried the salt which helps, but I am still having many days when the salt is of minimal effect. I am unable to work, and had to take 6 years out of my degree which I have recently completed, due to the POTS/EDS.

I am under Prof Matthias in London, and I did not know if it was standard to be told to try the salt first and then to try meds.

I am interested in the compression hosiery, as I have not tried this. Can it really make a big difference? Does anyone know if there is a risk of dependency in the sense that when you stop wearing them the blood vessels dilate in a similar way that wearing ankle weights for too long minimises the effects. Are there any tips on what type/pressure work best.

Thanks once again for all your help and tips.

MaryJo

[hayley]

welcome,i am also from the uk.I am under prof mathias aswell and havent been treated with medications.I have pots and eds for about 2 years and i havent been able to work for 16 months.i no how frustrating it can be not being able to do anything.Its my 21st birthday in july and i would have love to go out with some friends but i dont think thats going to happen.I am so desperate to get a normal life back.But for now ive accepted that this is it for me and to carry on the best i can.Stay positive.I have treid the compression hose and found it helpful.I also tried physiotherapy to strenthen my leg muscles, which has help alot.But i still have pots symptoms everyday and faint about once a week.But hopefully things will get better.Take care.

h x

[MightyMouse]

Hi there. I have EDS and POTS/NCS. I also have GERD, in fact, just had my 10th upper endoscopy a week ago. In my opinion, my gut issues are mostly EDS related, as most folks with POTS or NCS alone don't have the severity of issues that I've got going on (although there is variability on that too).

I have problems with delayed gastric emptying, slow or no transit (gastroparesis), constipation, diarhea, reflux, hiatal hernia, gastric erosions and inflamation, yada yada yada.

Nina

[Guest Mary from OH]

Usually, not always, but with POTS patients the GERD is secondary to gastroparesis (GP) or for lack of a better explanation the paralysis of the stomach. In other words, the motility in the stomach is compromised, so the contents are forced back up into the esophagus. This is different from "normal" GERD that most people have because it is caused by a paralyzed stomach. It may be helpful to have your stomach checked for GP. I'm not sure what tests they use in UK for this. There are several members on this list who are from the UK and see your Professor. I'm sure they can be of assistance.

My daughter has GP and GERD both among many other motility problems in her GI tract. She also has POTS. I also have POTS and mild motility problems.

Make sure your dr is treating BOTH the CAUSE of the GERD and the actual GERD itself.

I wish you well in finding answers.