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Zebra in Need of Support
pinkparadox
Posts: 20 Member
Hi Jade! I got on here today specifically looking for any groups for chronic illness where I could find ACTIVE accountability and support as I work to improve my overall wellness and lose weight.
I am 49 (50 in June) and I am diagnosed with hEDS, HPOTS, and MCAS along with a legion of other conditions related to my hEDS. Some of my biggest EDS-related issues with fitness are significant fatigue, moderate to severe daily pain with no remediation, poor sleep, and brain fog. I also have severe dysmotility of my GI tract and at my most recent GI follow-up, I was told I cannot eat fruit or veg unless they are pureed. I also have many, many low histamine dietary restrictions from my MCAS. And I stay so worn out that cooking is a real chore for me.
I joined MFP about 14 months ago and tried and was doing well walking on the treadmill, but within a one month period in March of last year, I broke a metatarsal in each foot from the strain of walking. It took months for one foot to heal and I became despondent. Over the next 9 months I gained back most of the weight I worked so hard to lose.
My single greatest overall challenge is actually not one of my physical ones - it is prioritizing my self-care. I seriously suck at it. Again and again I move myself to the bottom of the list in exchange for other things that are "more important" to get done in the day. And, as I am sure you can relate, when every day starts with exhaustion, you only have so much energy to put into anything, and I just run out.
So here I am, trying again to start some habits - like moderate exercise, drinking enough water, strengthening and building lean muscle, losing this weight (in a reasonable time) and trying to find a way to feed myself that is sustainable and good for me.
I actually run a very large online EDS support group in my hometown, but have not found anyone in it who is "ready" to focus on their weight/health in this way. Maybe here on MFP, I will.
Hope that's enough to get you started knowing who I am!
Thank you for starting this group! Tammy
I am 49 (50 in June) and I am diagnosed with hEDS, HPOTS, and MCAS along with a legion of other conditions related to my hEDS. Some of my biggest EDS-related issues with fitness are significant fatigue, moderate to severe daily pain with no remediation, poor sleep, and brain fog. I also have severe dysmotility of my GI tract and at my most recent GI follow-up, I was told I cannot eat fruit or veg unless they are pureed. I also have many, many low histamine dietary restrictions from my MCAS. And I stay so worn out that cooking is a real chore for me.
I joined MFP about 14 months ago and tried and was doing well walking on the treadmill, but within a one month period in March of last year, I broke a metatarsal in each foot from the strain of walking. It took months for one foot to heal and I became despondent. Over the next 9 months I gained back most of the weight I worked so hard to lose.
My single greatest overall challenge is actually not one of my physical ones - it is prioritizing my self-care. I seriously suck at it. Again and again I move myself to the bottom of the list in exchange for other things that are "more important" to get done in the day. And, as I am sure you can relate, when every day starts with exhaustion, you only have so much energy to put into anything, and I just run out.
So here I am, trying again to start some habits - like moderate exercise, drinking enough water, strengthening and building lean muscle, losing this weight (in a reasonable time) and trying to find a way to feed myself that is sustainable and good for me.
I actually run a very large online EDS support group in my hometown, but have not found anyone in it who is "ready" to focus on their weight/health in this way. Maybe here on MFP, I will.
Hope that's enough to get you started knowing who I am!
Thank you for starting this group! Tammy
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Replies
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Hi Tammy
I have a lot of the same issues, I'm awaiting a MCAS and POTS dx. Have major issues and restrictions with histamine. Recently I have cut out all grains and sugar as I suspect candida. I'm happy to work as each-others accountability-the next few days i am away on a trip so it will be hard to eat clean and i may have a drink or two- even though I will really suffer for it!0 -
sparklyball wrote: »Hi Tammy
I have a lot of the same issues, I'm awaiting a MCAS and POTS dx. Have major issues and restrictions with histamine. Recently I have cut out all grains and sugar as I suspect candida. I'm happy to work as each-others accountability-the next few days i am away on a trip so it will be hard to eat clean and i may have a drink or two- even though I will really suffer for it!
Hey There! I just saw your note! Yes- it would be great to have some support and accountability from someone with similar struggles! Let me know when you are back from your trip and we can chat more.0 -
Hello. I'm looking for friends who "get it." I have POTS, Fibro, Gallbladder issues (which makes it very difficult to find a menu which is super high in sodium and extremely low in fat), and I'm waiting on an Ehler's Danlos Hypermobile type diagnosis. When my profile picture was taken, I was doing beach body exercises and lots of dance type videos. Not long after my POTS flared so badly that I've gained like 40-50 pounds due to the inability to exercise at all (and many many failed meds). All of the friends I had have become inactive, so I need some new ones! Thanks to my cardiologist, we have finally gotten to a place where I can start on those weight loss goals. But the other groups with non spoonies just don't get that 6,000 steps a day is a lot! I am a single mom of three and work a full time job and have almost no support from friends (because I've lost them all to this invisible illness) or family. That usually takes all my spoons and I have nothing left for even eating dinner some days. I totally get not making myself a priority and my health has greatly suffered for it. I've started back on MFP to try to get my eating back into shape as I can now cook more than I used to (but not as much as I'd like!). I've increased my water and cut out coffee. I'm looking for a place to be encouraged and support others like me as our goals are so much different than healthy people. Please let me know if you would like to be friends!2
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I've (finally) recently been diagnosed with Ehlers Danlos Syndome too.
I also suffer chronic fatigue, severe IBS, insomnia...ugh the list goes on.
Id love to have some friends on here who understand how these things affect health and weight loss/fitness.0
This discussion has been closed.