POTS (or other invisible illness) and weight loss

frasiergirlgetsfit

Anybody out there struggling with trying to lose weight while dealing with invisible illness (POTS/NCS/lupus/Lyme/eds/epilepsy/MS/fibromyalgia/PCOS)
I have POTS and nuerocardiogenic syncope/dysautonomia and have struggled dealing with trying to stay active and keep flares at a minimum. I feel so much better physically and mentally when I get more exercise, but it's so hard to exercise when your in pain and everything makes you feel dizzy/pass out, lol! It's no fun! Would love to have some support on here from people who deal with a similar situation. Where my spoonies at?!!!

tichondria

Oh my goodness. I just found your post and I almost can't believe that someone else is dealing with something that sounds like I wrote it. I have PCOS, diagnosed with POTS a long time ago but never had any follow up on it after a few months from diagnoses. But the whole "everything makes you feel dizzy/pass out" is what truly got me.

I've never been diagnosed with Fibro, but a gut feeling I've had for years tells me not to dismiss this. I suffer from days where even holding my own head up is so utterly exhausting and almost painful that I felt like I was dieing. Walking in a store when my husband will tell me out of the blue to go find a place to sit down because "all color has drained from my face and I look like I'm about to pass out." This has happened so often that sometimes I think my brain blocks the warning signals from me and puts me on auto. It's like I know it's happening but I'm not fully aware. Some days I can walk around quite a bit, I suffer no set backs.. everything is great and I feel healthy and fine.

It's the bad days that remind me that the rainbow doesn't always have a pot of gold at the end of it, but instead a bed of fire and nails. Between the brain fog, anxiety, weight, and a million other things that it feels like... loosing weight is the hardest battle I have worked on. I finally decided enough was enough on Sept. 5th of last year.. I weighed 308 lbs, and before that I was 320. Loosing only to 308 due to sickness. So I found MFP, completely changed my diet (still working on that at times but it is a good work in progress) made some friends here, and started my journey.

As of to date I have lost 31 lbs and am sitting at 276. I just got back to this weight I was before christmas and I'm quite happy about that. I have discovered that lowering my carbs/sugar intake and removing a LOT of gluten foods from my diet has helped massively. I have never been diagnosed with anything that requires this, but self diagnostics and a WHOLE lot of extensive research and trial and error has lead me to this path. I just feel better. I'm not cured by any means, I still suffer... but I don't suffer as often.

There are still days that energy is my mortal enemy and refuses to give me any. But I refuse to let it get me down... sometimes as a pick me up I read the success stories that are here, and remind myself that this is not a race. I don't need to find the finish line as quickly as I can, I just need to get there. I doubt I have the healthiest diet, or way of loosing and it's not a 1 cure for all. But it is working for me, in its own way. I have found that doing exorcises that allow me to sit down, work the best for me.. Those bikes at the gym that let me sit down and peddle (look like a rowing machine almost but peddles instead, not the normal upright bikes) are great. If I start to feel dizzy I slow down, lower my head a moment, take a drink of water and give myself time to ease up.

I also sometimes do a bit of weights.. laying down or sitting/leg weights. I don't push myself because I find straining too hard will either raise or lower my bp. I can actually feel/tell when that happens. If it starts going too high I get very red in the face, my hearing gets quieter like there is a wall blocking some of the sound, and my head pounds a bit (not to the point of headache but it's uncomfortable) If it starts getting too low, I start to feel shaky, my hands get very gold and will not warm up. The color drains from my face and everything starts to feel like I'm moving through molasses.

I am on medicine and while it does help, it doesn't stop the symptoms I have. It is possible to loose weight. And there is a light at the end of the proverbial tunnel. I am proof that this is a possibility. I know I will have ups and downs but I want to let you know that there are others out there and your not alone. If you like you can friend me, and I would be happy to cheer you on or lend an ear to talk. I always say I am great at motivating everyone but myself. But for me, helping others helps me because it truly makes me happier.

hugrabug

I finally joined MFP after months of sitting on the fence. Most of my friends who swore by it didn't have health issues similar to mine (fibromyalgia, hypothyroidism, CFS, depression, and chronic anemia) so it's a huge relief to see there are some Spoonies here too!

It's incredibly difficult for me to exercise without causing my body to flare up. For now I'm making it a goal to try and eat better and to do some modified yoga and stretching and see how my body reacts. I would love to be able to do more as time goes on, and hopefully I will, but for now it's baby steps.

The Little Engine That Could was on to something with the mantra of, "I think I can, I think I can, I think I can..."

singingflutelady

I have Crohn's. Autoimmune diseases suck

psuLemon

So let me say, that I do not have POTS, but my wife does. We have been battling it for several years now and have learned a few things that have become very beneficial. A lot of my research has been through NIH studies, the Mayo Clinic (leader in POTS), discussions with our Electrophysiologist, and many other specialist. In hopes of making things fairly concise, I will break it down into sections. Depending on the severity will determine what kind of benefit you will see from each of the things below.

Diet

More SODIUM!!! Salts is your best friend*
Foods high in magnesium and potassium are beneficial*
About 50% of people see benefits from Gluten free, as well as low carb


*these are because with POTS, there is extra strain from an increase in heart rate, which ends up break down electrolytes quicker. Thence, the need to replenish.

Supplements
Wife is on perscription Potassium
Cardiovascular Research Magnesium Taurate (magnesium/amino acid blend for better absorption)
Nuun Tablets (eletrolyte tablet to put in water)
NutriForce Natural Amino (taste better when you do 16oz of water and add MIO).


Limit plain water as it can dilute electrolytes. Add nuun tablets to most water (plain can be 8 to 16oz per day). Wife starts each day with the Natural Amino drink.

Treatments
A betablocker has been proven to be the universal best treatment (per Mayo Clinic)
My wife start IV infusions (1/week). This increase hydration and makes her feel great. We figured this out after being in and out of the hospital with other issues.


Exercise

Lifting, especially focus on compound movements and on lower body, has been shown to have a good impact. Concentration on large muscle groups will help increase bloodflow. With POTS, patients have low blood volume. Exercise can stimulate this and improve things.

Currently, I am going through the process of modifying the New Rules of Lifting for Women for people with POTS and my wife will be my first test subject (pretty advanced stage of POTS). Essentially, you need to minimize the amount of levels changed. So we don't do anything like Yoga, we don't lay flat, no cardio and no limit position adjustments as much as possible.

I do have some more discussions in a group I lead. It's private, so you would just have to ask to join and I will accept it.

http://community.myfitnesspal.com/en/discussion/10300413/pots-ncgs#latest

psuLemon

One thing i wanted to add, the NA and NUUN supplements where the best calorie to carb/sugar ratio that I could find. Still seeing if it's possible to improve the ratio.

gentlygently

I have CFS.

I swim (and walk). On bad days walking to the pool is a task. But I have kept at it (gently!) and it has helped me a lot. I usually swim for 40 mins nowadays, and barely think about the walk. But it was all done 'graded steps' and with plenty of set backs, and measuring out of energy spoons....

I am still getting better (overall).... I focus on fitness rather than slimness nowadays....

julbo

I've got POTS , sjogrens and blah blah blah....how am I supposed to lose weight while taking all me meds AND not being able to exercise hard?

camy4dfied

I have pcos and CS..it's pretty draining most days . I'm slowly weaning off meds.

psuLemon

julbo wrote: »

I've got POTS , sjogrens and blah blah blah....how am I supposed to lose weight while taking all me meds AND not being able to exercise hard?

Weight loss is controlled by calories. Exercise increases calorie expenditure. Depending on the severity of POTS, start with some mild body weight programs and extend the time between moves.

Sarc_Warrior

Asthma and sarcoidosis here.

pipercatsmom

Hypothyroidism and recovering from major back surgery after a fracture and a ruptured disc. I couldn't do much for a year and had to quit my very physically demanding job. I've gained 20. I get to start tomorrow with PT from the surgery.