Chronic Illness

I would look at medical food maybe, like Ensure, if covered by your insurance.

It can help with the stomach issues maybe, and make sure you get all the nutrients, while you focus on losing weight. With your food disorder background drinking food may be easier than to sit down for a meal.

I would sit down with a dietician too, they tend to be more focused on food (and health), where a doctor may be more focused on medical stuff.

The passing out can be an issue with excercising, you could try a sitting or lying down bike setup at home maybe. You could strap yourself in maybe in case you faint. That way you can focus on low intensity and fat burning training. You can wear heart rate monitor to track. They have bike pedals (motorized) machines, as well. Maybe you could use that while lying down more. That could get your metabolism going, at a slow and controlled pace, which you can expand on later for example. I would get some professional advice before starting though, make sure you are setup properly

I know some physical therapists do home visits for people who are paralyzed and move their limbs for them, something like that may help too.

I certainly can understand what you are going thru. My wife has POTS and has dealt with many health issues on top of that. There were 8 straight years of surgeries and hospitalizations to include 14" removed from her colon, and a ruptured gallbladder, which caused pancreatitis.

Now, since then, she has come a long way but still working on her health. It does seem harder for her to lose weight but that is mainly because POTS makes it very difficult to move a lot from lack of energy.

What has worked: salt everything. Increase proteins and decrease carbs (low to moderate), and weight lifting. Lifting increases blood flow naturally which mitigates some of the issues. We do mostly lower body focused moves since they are much bigger muscles which push more oxygen. Adding Gatorade zero and/or electrolyte drinks is a must.

And for supplements, my wife does vitamin D and L-Citrulline or Citrulline Malate (nitric oxide booster or in other words increases blood flow). There was a time my wife was getting saline infusions 1-2x a week which helped the most to stabilize her condition.

Hope this helps.

As someone with congestive heart failure, diabetes, and atrial fibrillation, I have to wonder about what your doctors say. I would guess that besides the Gastroenterologist, and Cardiolost(s), you should have a primary care physician ( PCP ) to help get you between appointments with these specialists.

THEY should give you a plan. I will share a link wich includes a generic list of what you should be doing.. a long article from the Cleveland Clinic.. hopefully, not an issue here, BUT I think asking for advice online, is risky. This isn't cosmetic weight loss, you are looking for.. you have a chronic illness to consider, and most people are either just winging it, or Googling you problems, simply to be helpful, but often without any context.

My guess is that your plan, which should be devise by YOUR doctors, will include much of what is here:

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

BUT, they will tweak it to fit YOU, because we all are different. they will start a plan, and you should remember that doctors ARE employees.. you pay co-pays, and insurance, which pays them as well.. meaning they live, because of patients needing their services.. so MAKE them WORK.. ask questions of THEM. Write everything you can think of, and are not 100% sure of, and MAKE them give you answers.. usually, they are happy to, but most patients don't utilize them.. if necessary, get referrals to people who CAN answer your questions.. POTS is in 1-3 million people in the U.S from 13-50, so it's not like most PCP's have a clue, but start with basics, then fix whatever issues come from those, such as weight gain.. common when taking antibiotics, and deal with those, taking into consideration what is allowed for someone with your condition.

For example, I take Coumadin/Warfarin for my A-Fib, to thin out my blood.. Vitamin K thickens blood, helps with clots, so if I eat a lot of leafy greens, say several BIG salads a week, it could make my blood too thick, and I could have a stroke. of course, most of us think a healthy salad is good for everyone, but not always, and random strangers do not know you complete medical history, and are NOT experts, even if they have had what you have.. each person/case is different, and what works for one, isn't necessarily healthy for someone else.

My suggestion is go back to your doctor's and do not let them leave, until you have ZERO questions on what to do, and when you return after following that advice, address anything that did not work, and try something else, until the fix your problems.

Life is harder with a chronic illness, and meds, and many factors no one else has to deal with, so you and your doctors have to work harder. It appears that your doctors are doing much for you.. make them earn their money, and if they won't answer your questions satisfactorily, or refer you to someone who will.. FIRE them, and get better doctors.

Good Luck. Hopefully the link provides SOME answers, but DO make sure you don't just use what's in that.. only until you can set up appointments with your doctors, and make them do their jobs properly. You shouldn't have to demand they do so, but you HAVE to.. or else they will do the minimum, and just try to keep you alive, instead of working on making you healthier. My doctors focused on my heart failure and diabetes for 10 years, without ever addressing my 350 lbs.. they treated what could kill me, and kept me alive, and I felt horrible.. when I lost 100 lbs., many of the things they were treating with pills, got better.

They may simply be focused on the greatest danger to you, and not worry about the other health issues they think won't kill you, unless you force them to.. THAt is the most optimistic way to look at it.. in my opinion.. managing chronic disease makes them BIG money, while weight loss through diet, doesn't make them any money at all.

It's probably a mix, and I'm just more cuynical, after 20 years, but now that I have them trained, and demanding they address all my health concerns, I'm getting healthier a lot faster. If they do their job, you won't need to be in here asking others what they think.. people are nice, and want to be helpful, so you will get lots of advice here, but mine is.. go put your doctors to work, and do what they tell you to.. and make sure they address ALL your health concerns.

Xellercin wrote: »

That's good that you have a lot of medical support, especially therapy, it's so critical with chronic history and eating disorder history.

In case you ever want a POTS specialized doctor, Dr Svetlana Blitshteyn is a neurologist who runs the Dysautonomia Clinic in New York. She does virtual appointments. https://www.dysautonomiaclinic.com/

Also consider joining some online communities for POTS, that's where I've learned which companies have the best salt pills that cause the least stomach irritation (Vitassium), which brands of compression tights are the best deal, techniques for managing lifestyle, etc.

POTS is a major pain in the *kitten*, but there are tons of ways to make it more manageable, and there are tons of us out there who have figured out treatments and workarounds.

Having POTS is kind of like being blind in one eye, it's super inconvenient and makes a lot of stuff difficult, but in no way should it prevent you from having a full, rich, healthy life.

To add, we have found Electrophysiologist or University Cardiologist tend to have greater awareness. My wife tried to get into the NIH and Johns Hopkins university for treatment without success. They both recommended the Mayo Clinic.