Tag: living with Ehlers Danlos

Ever wonder what it’s like trying to get into shape with a condition like Ehlers Danlos?
Health · Uncategorized

Ever wonder what it’s like trying to get into shape with a condition like Ehlers Danlos?

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You put on a workout video. They have 2 types of people in the background- the ones doing the main moves and the ones doing the modifications for people who are new to working out or have various limitations.

You try the limitations. You start to feel and hear your shoulder or knee pop. Then you modify the modifications because you remmeber last time you did a major workout and threw your knee so badly out it took several hours for it to pop back in- by that time, you were in the waiting room at the ER because this time you couldn’t walk nor put pressure on your leg and it took your dad on one side and your husband on the other side to help you hobble out of the house and into the car, every pot hole and bump in the road sent a searing pain through your knee and you were crying- until it “magically” popped back into place and the pain was gone.

Most of the time, if you threw a joint out, it would pop right back in so that time stood out in your mind because of the pain. After that, you were nervous about working out again so you would do it sporadically.

Your history of c sections combined with diagnosis of Hashimotos mixed and you knew you needed to workout. When you met with the genetic specialist who gave you the EDS diagnosis, you asked her. She told you water aerobics and swimming- stuff easy on the joints but you have no access to a pool so you got stuck. That put you back on square one and back to the risky exercises.

I’m down 50lbs but about 20 was from being hyperthyroid right after my daughter was born. I went down from 220 to about 180, back up to 190 then from 190 to 170ish after getting my thyroid regulated post surgery and switching to the gluten/dairy free lifestyle. Now, I’m about 30 away so I need more than changing my diet. I prefer the Stronger workouts (livestrong) but I have to do the modifications and sit out from certain exercises- it still works pretty well since they are laid out.

 

Health · Uncategorized

EDS, post 30 can your body bounce back?

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I know your metabolism takes a slight hit at 30, larger hit at 35 and every 5 years or so keeps shrinking. I’m still heavier than I was pre-kids and reality is hitting me. I knew I no longer had my pre-baby body, but will I be able to go back?

I accepted the fact that pregnancy made my hips more of a problem area than they already were. I only wore a larger size (11-13 in high school) for that reason, but had an hourglass figure. When I dropped to a 14, I tried on some 17s and couldn’t get them past my hips. That was when I read that juniors and adult sizes are made different (1,3,5, etc are juniors. 2,4,6, etc are adult). Juniors are made narrow in the hips where adult jeans are made wider in the hips.

I do know that with Ehlers Danlos, collagen is affected and where it makes your skin stretchy, it seems it may be harder to just bounce back. My scars fade but they still look strange when they heal. I don’t know much else about EDS but I do have an appointment, not only with a genetic specialist, but a specialist who lives with EDS herself. But that’s in a little bit. Right now, I’ve been researching trying to find foods that can help, workouts good enough to help lose weight and tone up but also safe for Osteo and loose joints and anything else that could help me with shrinking back down.

In the past 2 years, I’m down from 220 to about 170. I’m down from a size 20 to a size 14-16. I still have 40lbs left and hoping to get down to a 6ish or 8, maybe and I have 5 years in my mind to do it. If I can get down to my goal, fix what I need to fix diet wise and perfect my ingredient reading I should be able to maintain despite my Hashimotos. I’m seeing that even thyroid isn’t as much of an excuse as people use it. I dropped 20lbs in 4 months on a good dose of thyroid medication and cutting 1 ingredient out. I’m almost 1 month back to the normal (gluten free) lifestyle and finally feeling back to how I was feeling. I just had my thyroid levels tested again and they were perfect.

Right now, I’m trying to buy less processed foods. I have quit drinking Mello Yello (but I did switch to Diet coke for the time being), I’m eating 1 grain meal a day (if that) and the rest are cooked or salad. I do need to cut condiments and I still am drinking my Starbucks double shots (1 a day), I also started to notice my sugar drops when I eat potatoes so I’m switching to sweet potatoes.

The problem is when you have multiple diagnosis’s with several recomendations for diets. Where I have obvious issues with gluten, gluten free is needed (unless I want to spend all day cramping and in the bathroom), I had the diabetic low glycemic diet recommended to me for the reactive hypoglycemia. Cutting everything that was recommended to me feels restrictive. It also makes my OCD mind feel like I’ll be depriving myself and feels like it’s a black/white situation instead of- eat this way and you’ll feel great, eat that way and feel like crap.

I’m working on disassociating food with pleasure or anything related to emotions and trying to associate it with fueling my body and nothing more. Mindfulness helps that. Taking time to savor what I eat and pay attention to it is what I’m working on. Salad tastes great, so does fruit. Sugar and snacks that are heavily processed taste like chemicals but are an addiction- I’ve read all about sugar addiction and cold turkey is the way to go with kicking it. I’ve been thinking about trying a 1 month sugar free diet to try to break it. Just not sure if I have the will power currently. I will start it at the beginning of a month this year, though. Just have to build up and do further research into it to go in armed instead of half assing it.

In my picture, I was 18. I was constantly working out but didn’t know half of what I know now. I was also healthy.

I wasn’t skinny, but I was a good 30lbs smaller than I am now.

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I started a new facebook page

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I started a new facebook page mainly trying to spread some awareness as I learn about EDS and the other issues I’m learning I have. 

https://m.facebook.com/New-Age-Dream-Girl-704151713114993/

How I found out about EDS.
Parenting

How I found out about EDS.

The Dream Girl2 Comments

From the time I was little, I always remember walking around with what felt like a bad sprained ankle. I was always twisting it, so I had no idea it wasn’t sprained. I also have hips rotated backwards, so my feet and knees stick out to the side. I could never run very well. I’d end up twisting my ankle. Even with all that, I never went to the er nor the doctor often so I didn’t think anything was wrong.

I also have always had a nervous habit of bending my pinky fingers sideways to my pointer and just holding them in that position, it was something to do with my hands (I have also had anxiety since I was very young) and I lived by the belief that everyone could do it. My thumb can lay flat against my wrist/arm and I can turn my feet backwards so they’re straight behind me. No one ever told me that (along with the aches and pains that went with being hyperflexible) was strange.

Fast forward, I just had my first baby. I developed severe pre eclampsia over the course of less than a week and had to have her at 28 weeks. We were in the NICU and while she was there, I welcomed every study they asked me to do. One was testing flexibility. That was when I first heard the phrase “hyper mobile” and scored almost the highest score you can get. It blew my mind because I thought you only were flexible if you could bend your pinky to the back of your hand (I can’t, mine goes sideways) and if you could touch your toes or the floor (my hip dysplasia along with arthritis makes it too painful). I started looking into it and found it was, in fact, odd.

Fast forward five years. Baby 1 is now 5 years old. We took her to a specialist due to very early onset scoliosis. I showed him my joints and he said it looks like Ehlers Danlos. I had my doctor confirm it a few days ago.

In a way, I’m glad I didn’t find out until after I had all 3 kids. I am really not sure if I would have chosen to have kids had I known about this (and others I’ve been diagnosed with that I’m going to go into in another post).

It feels almost selfish, although the specialist said my oldest doesn’t appear to have it- and I’ve had several professionals confirm there really isn’t a great test for hypermobility type EDS- it goes off appearance mostly. I mean, genetics are a crap shoot anyways but it feels like I put two kids on this planet to deal with (mostly mild- at times up to severe) pain for their lives.

The pain gets easy to manage. I wouldn’t know what to do if I woke up one day completely pain free (I’d love it, though). When you’re born a certain way, your body compensates and conditions itself. You adapt to chronic pain so you know nothing about normal. It still isn’t something I’d wish on my kids and I hope neither inherit it, my oldest’s specialist said she doesn’t appear to have it, but I’m watching my toddler’s feet. So far, they do seem to stick out and that seems to be one sign.