Chronic Illness

samcskelton

Hey! So I deal with POTS and an arrhythmia, I also deal with stomach issues and sciatica. A lot of it causes me to pass out when I just stand up and sometimes even just sit up. So needless to say, something is up and I’ve been gaining weight like none other, my thyroid is fine. My issue is that it’s so hard for me to lose weight. I’ve been doing exercises with my physical therapist that help a little, but overall not much is working. I’m at the point my gastro doc is telling me to eat more but I’m afraid to because I’m taking so many antibiotics now for H Pylori. Also whenever I eat, my stomach hurts, so that doesn’t help. Primary says that due to my history of anorexia, my metabolism probably slowed and now that I’m still not eating as much that it’s storing away everything it can and lack of being able to move doesn’t help. My issue is that I’m almost 300lb and my thyroid is working amazingly well, so how does this happen? I am also a bit fat-phobic, I still hate seeing myself, I look at other fat people and I know deep down that they’re probably also struggling, but my initial thought is “stop being lazy” I’m terrified of my body right now and I hate it.
I’m working with doctors on my weight loss journey, but I’m looking for spoonies and other chronic illness peeps so we can all work together.

Sportertje354

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.

owieprone

Sorry to hear you're having a thoroughly rubbish time.

I have MdDs (balance disorder), endo, cycle induced migraines, a slipped disc and sciatica.
I basically treat my brain as an ailing symbiont with cognitive issues - keeps me sane.
I've piled on weight over the last 2 years due to stress/depression, covid, and my back - luckily i live inland so no fear of being harpooned.

I would definately speak to a nutritionist about your diet if you can afford it, if not youtube has lots of different diet advice - if you're not sure use one of the bigger channels (athlean x, ryan humiston, etc, to avoid pseudoscience nonsense).
Changing what you get most of your fuel from (i.e. fat instead of carbs) might help with some of the dietary issues you're facing. I try to think of it as not trying to lose weight, but eating properly - cos i eat a heap of junk and not enough actual food with nutrients in it, i keep an eye on calories just to make sure I stay over 1200.
I can't eat less than that due to my condition using up more calories just to stay upright.
I can't let myself get hungry, thirsty, or over-do exercise as it f's me up and can take weeks to recover.

The bonus for me being I literally can't do Burpees cos my brain can't handle them - oh dear what a shame.

I know it's hard to eat normally when you don't feel like you're doing enough exercise to warrant it, but remember you body needs a basic amount of calories, and I suspect like me you need to add on ~50 - 200 extra calories to help your body tick over and heal - especially on bad days.

I do weight lifting and yoga/pilates because there's so many things that you can do sitting down or lying down, you don't have to go hell for leather with either to see results - I like youtube: Ryan Humiston for weights and sarcasm, and Blogilates and bohobeautiful for yoga. For reference my biggest weight is 5kg.

You could also try ballet barre as you get to hold on to something, on a bad day I also do ballet foot stretches with a resistance band and teeny weight wrist/forearm exercises at least feels like i'm not just sat on my backside.

Hope that's helpful.

cmriverside

First. Metabolism doesn't work that way. If you're 300 pounds, you have healed from your anorexia's low calorie/lowered metabolic rate. So, cross that one off.

The h pylori - that will be resolved soon.

If you're 300 pounds you can afford to eat less right now, you have a buffer of body fat but I do see your doctor's point if you previously suffered from anorexia/obsessive food issues. Set your goals to "Lose 2 pounds per week," set your Activity Level realistically and as honestly as you can.

LOG FOOD. Religiously. Make notes of foods that don't exacerbate your symptoms and eat more of those (within reason and while getting good macro balance.) Try to hit all your goals. I found working on that gave my obsessions something on which to focus. Look at Protein and Fats as minimum goals to hit. Try to get 25g of fiber daily. Stay within your set salt/sodium goals. Work on getting enough iron, calcium, potassium. Drink water, sleep eight hours. Take a walk if you're able.

And don't forget to breathe! You'll get through it. Do you have a therapist on your medical team? S/he would be really helpful right now to get your thoughts back in line and on track for success.

Xellercin

First, focus on your health.

It's very hard to lose weight when you feel awful, either physically or psychologically.

I also have POTS, among other more disabling conditions, but there are ways to manage it. Yes, I'll pass out if I stand up, but I don't just stand up. I slowly sit up, spend a minute clenching my large arm and leg muscles, and then slowly stand up. I also wear compression socks, and make a point of not sitting still for too long, because ironically, although standing up is hard with POTS, staying down makes it worse.

You also need to heal your emotional health. Are you seeing a therapist? One who understands anorexia? It's very difficult to lose weight if you formerly had anorexia, it would be much more effective to tackle your mental health and the barriers that are guaranteed to come up along the way.

Aim to get to a point where taking care of your body comes from a place of love, not punishment. Aim to foster a state of emotional health where you aren't aiming to deprive your body of anything, but instead aim to feed your body what it needs to thrive. Not to exercise as our punishment, but to exercise as self care.

It's okay if you aren't there yet, most people aren't. But if that's your aim, then you always know what to be working towards.

Also, take it from someone very disabled, there are always ways to take care of yourself. I can barely walk a lot of the time and I still get more exercise than most able-bodied people. But that's because I'm in a headspace where I can do that. Back when I was a much less happy person, it felt impossible.

psuLemon

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.

Xellercin

I also would have mentioned adding salt, I take salt pills, but didn't know with your heart condition if that was safe advice.

Do you have a POTS knowledgeable doctor helping you manage your condition?

russellholtslander1

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

^ I 1000% agree with above.

I'm a doctor myself, so it's easier for me to train my doctors, but even then, I still have to train some of them to expect that I will demand proper care from them and not just being brushed off because my condition is complicated.

Also, if they don't understand my condition, I demand that they help me find someone who does.

It's true, doctors work for you, and you are the client. But in the same fashion, you are also responsible then for how they work for you. They can only help as much as you direct them to help.

If they fail to help and you leave without demanding anything further, then they are within their right to assume that you are satisfied with the care they have provided.

Having a chronic illness and dealing with the medical system is often highly traumatizing. So I repeat that quality mental health support is really critical.

samcskelton

Xellercin wrote: »

Do you have a POTS knowledgeable doctor helping you manage your condition?

I have my cardiologist and he doesn’t know of anyone super knowledgeable in POTS, but he’s overseeing my care. A couple years ago I was in the hospital twice a week for infusions, then after that only when I was pregnant. I am seeing a physical therapist who recommended I get a rowing machine. My cardio also recommended adding salt and Powerade as well as compression stockings that go up to my waist rather than knee high. I have spoken with a dietitian through my doctors office twice and will be seeing a neurologist soon too. The only doctor I haven’t seen yet and I’m on a list for is the endocrinologist.
I am also seeing a therapist every other week until my insurance restarts, probably in January, but after all my meds and everything, I’ll reach my deductible by March, so I’ll only have a 2 month lapse.

Xellercin

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.

psuLemon

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.

MargaretYakoda

Come join us here. A group just for us spoonies!

https://community.myfitnesspal.com/en/group/141248-disability-fitness-and-weight-management-we-are-here-we-can-do-this