Chronic Illness & Fitness Trackers (EDS, CFS/ME, POTS, Dystonia)

I have POTS and small fiber neorapathy. I've learned how to know my limits and try to live within them. It's hard and I still overdo it sometimes. I use a Fitbit myself.

I've got EDS classic type, and I do deal with some PTOS but it's minor in comparison to some people. I'm assuming your trip is to NYC based on your last post, so as a 14 year former New Yorker I might be able to help. When I first moved there I was really sedentary, and for the first couple of months I had excruciating hip joint pain while I adjusted to all the walking. Getting 10,000 steps a day in NYC is just Tuesday lunch errands. My best advice to prepare is walk, walk, walk. Walk on a treadmill with an incline of 1 to mimic street walking, but also street walk as much as you can. Uneven sidewalks will get ya' and you are going to be dodging people like crazy so balance will be important. If you can handle squats and hip bridge exercises focus on those and core to stabilize your hips and glutes. Barre and Pilates exercises are also good options.

Stairs are another issue of you plan on riding subways. The major stops (Times Square, Penn Station, 50th/Lexington, etc) will have elevators, most stops have escalators, but sometimes you just get stuck with stairs. Just go slow, and most important, stay on your right side so people don't get mad. If you stay to your right on stairs and escalators people are generally cool with going around you. Oh, and don't stop and rest right at the top, step to the side so people can move past. I know these things might sound a little snarky but they will go a LONG way with helping you adjust to the NYC pace.

AVOID TIMES SQUARE!!! Unless you are going to a Broadway show there is nothing worth seeing there. There are so many people that if you have a disability it's just a hazard. It's full of chain restaurants (Chillis, Applebees, Olive Garden) and cheap souvenir shops and lots, and lots of PEOPLE. I used to work three blocks south of there and anytime I had to walk through there it gave me extreme anxiety. Seriously, there are SO MANY better ways to spend your time in NYC. The best stuff in NYC is not the major tourist attractions (except the museums), and they will be packed with people, and have really long lines, no matter what day or time you go. Get off the beaten path and you will enjoy your trip there so much more

Oh! FYI, New Yorkers generally are not rude. They are busy and rush hours are the worst. We sometimes seem rude because we have learned to tune the world out so we can get where we are going efficiently. However, if you ask for directions or advice we will help. Sometimes we will even walk with you if it's the direction we are going and we have time Enjoy your trip!!!

srsly_sarah wrote: »

I have two neurological conditions, as well as a genetic condition that affects my joints, so I have to be very gentle with my exercise (no high intensity, etc). I used a JawBone for 6 months in 2014 when I lost 30 pounds, but then I developed a rash. I never replaced it because I had my appendix out and my health went downhill from there. I regained some weight, but lost it again. I'm hovering right over my "goal" weight, but wouldn't mind losing more, although my goal is endurance and strengthening the muscles that it would take to do a lot of walking during a 4 day period without wasting too much time to recuperation.
Now, I am looking to slowly build my stamina, as far as walking goes, for a trip that I will be taking in May, aside from PT exercises that strengthen the muscles around my joints and my core. I took a trip in December and couldn't walk too far from my hotel, and could only do it once a day (so, once we came back to clean up for dinner, I started crying at the idea of walking 0.6 miles there and back to get back to the French Quarter to get dinner). I will be in a much larger, much more exciting city in May, which is honestly a trip of a lifetime for me, so I want to be at my personal best.
I was wondering if anyone else with conditions along the lines of CFS/ME, Fibromyalgia, Elhers Danlos Syndrome III (I have that), POTS (I also have that), etc. have had particular success with one model of tracker over another.
I like the idea of the auto-goal on the Garmin models, but I'm not a fan of the design. It is something that I want to wear all of the time, so as petty as it sounds, design is important to me, too.
Thanks, and keep up the hard work of taking care of yourself, if you are in a situation like mine. Just being on this site is a huge step!

I'm trying to get diagnosed for what i have i feel you on the crying thing. I think i have EDS not sure what type though due to i have tuns of symptoms in all the types its frustrating me tbh one of my siblings has MS and is 2 and half years younger than me im 23 and my older sister 10yrs older than me has a connective tissue disorder but was never told which one and EDS is a connective tissue disorder so makes me wonder. Many EDS patients develop MS eventually which is not ressurring due to my sibling! How did you go about getting diagnosed? I've been going to hosp appointments but nothing is coming back but there not doing the checks that people normally get to find out they have it! Its stressing me out i feel alone and un heard and like no one gets it. I have sublaxtions all the time being a very regular thing now i have muscles that pop out of place, hypermobilty, many eye issues, some loose skin, heart palps, cluster headaches, migraines, normal headaches, theres not a day you cant hear my body creak/crack/pop/snap/click/crunch, memory loss which is becoming really off at this past year, balance/clumsiness issues, severe bruising, skin issues, extreme abdomal pain and issues from bowel to periods, constant fatigue, never heal quickly, flat feet, deep veins, insomia, constant dizziness and feeling faint when i get up from sitting or lying down, sore skin just from being poked will feel it for hours, senstion like something is crawling or spider webs on skin, hearing is the best, ripping and tearing of skin tendons and liagments the list goes on and on i used to think i cant have this many seperate problems but then i came across EDS and it all added up every one of my symptoms are not multiple illnesses or issues it can be one big issue it makes sense. But i would really like to hear how others with it got treated diagnosed and what help you have ot get does i sound like you guys when you were in the dark, i feel alone and really need others help and experiences xx