Triggering (ED): Exercising with chronic pain/mobility issues

[Doodle.]

So I have a rare genetic condition called Ehlers-Danlos Syndrome (classical), which gives me a plethora of problems like fatigue, chronic pain, brain fog, joint subluxations (partial dislocations) etc. I am also considered obese, which makes things more challenging. I am very slowly losing weight thanks to thyroid medication (I have hypothyroidism too) and diet. I'm trying to exercise more but get joint pain easily. I am also very clumsy and fall easily. I have started incorporating small walks into my daily routine but my knees and ankles can hurt a lot.

I have considered swimming, but have a fear of drowning due to nearly doing so as a child.

Ehhh. I just don't know what to do to help.

[Arabesque- golfing girl.]

Hello,

I am so sorry that you are having a hard time with this right now and I hope that you will be okay soon.

Would you be able to call your doctor or go and see them and let them know about this and how you would like to lose weight and they would be able to give you different ways to do this. When you are working out, it's always fun to have a friend or family member with you because you are doing this with someone and it's more fun than by yourself. Maybe you can try that too if you can. Also, I was able to find some articles on this, when you have time if you would like to take a look at this they can be helpful for you. They are, https://www.ehlers-danlos.org/inform...rum-disorders/ https://hypermobilityclinic.org/nutr...nlos-syndrome/ https://ehlersdanlosnews.com/2019/12...-diet-for-eds/ If you would like to try swimming, try to go to a gym or another place that has a pool and ask if you can take lessons. The gym that I go to has this and I see people of all ages taking lessons on how to swim. They are very nice to them. I wish you the best with all of this and hope that you will be okay soon.

[Storyteller.]

Hey,

I'll start by saying that I don't have EDS or anything similar, so most of my advice will either be secondhand or based on my experience with sporadic nonspecific joint pain.

In general, any kind of low impact exercise is worth a go. Gentle walks like you mentioned are a good starting place, and I'd definitely recommend swimming if you feel like it wouldn't be too panic-inducing. Certain types of yoga or tai chi might also be beneficial as long as you don't overextend yourself. You could look into going to classes so you can talk to an instructor and get some individual advice; from what I've heard a lot of instructors will be more than happy to adjust exercises to better fit the person doing them, which could help you avoid potential injuries.

On that note, if you're not already, I'd encourage you to consider seeing a physiotherapist (preferably someone who has some knowledge of or experience with connective tissue disorders). They'll be able to give tailored advice and help you find the types of exercise that you can do safely. It might also include finding where the threshold is for "good" and "bad" pain. Sometimes pain is a sign that you need to stop, but other times it's something you can work through. Obviously with something like EDS it can be hard to tell where that line is and you need to be careful not to cross it, but if you can figure it out then you can focus on creating an exercise routine that works for you.

Another thing you could do is look into activities recommended for people with more common conditions that have overlapping symptoms, such as arthritis, or for elderly people. You might be able to find more readily available information than you would searching for EDS-specific advice. This could also be a good way to explain what you're looking for to other people, for example if you went to a gym and asked a trainer for some exercises. They may not be familiar with your condition, but might be able to provide some guidance if you ask what they'd recommend for older people or someone recovering from an injury. Those kinds of exercises are likely to be less intense and more suited to your situation.

I hope some of this was helpful, and that you do manage to find an exercise regime that works for you. And if you do, feel free to share it (either here, or potentially in an article or other resource so people with similar issues can benefit from your experience). Best of luck!

[Astro04]

Hello, surely a good physiotherapist can help you with your movements and help to feel less tired.
Don't let your syndrome take the advantage on you or you will be lost. Continue to do your training routine. It's not necessary that you do "titanic" things, what's important is to do it constantly.

[CaptainCastle]

Hi,

I have hEDS and have been exercising regularly to help with it for 15 years now. I understand how tough it can be at the start when you don't know what to do and you feel like you're not getting anywhere, but you will get somewhere it just takes time.

If it is possible I advise seeing a physio to start you off with some low impact exercises, and also make sure you are exercising safely. As this is even more important where hypermobile joints are concerned. I had weekly physio appointments for the first 10 years and have only been exercising independently for the last 5. I now attend 3 classes every week, but I am still having to modify them to allow for my hypermobility.

I think one of the hardest parts of first trying to get into exercise with chronic pain and fatigue is realising just how low a level you need to start off at to avoid a flare up of symptoms. It is a good idea keep the exercise to low intensity and not too long a period of time to start with. Even with trying not to overdo it I still need some rest days in the week to recover from the exercise.

I hope none of what I've said has put you off in anyway. That wasn't my intention I just know how intimidating it can be to start exercising when you suffer from chronic pain and fatigue, and i hoped my experience could help in some way. If there is any other questions you have I'll do my best to help.

-Ry

[Stacey]

I have hypermobility spectrum disorder (HSD) so very similar to EDS as well as POTs, Fibromyalgia and a few other concerns. I have tried just about every type of exercise (that I know I don't hate, lol) and I've had the best results with not aggravating my joints, POTs, etc with the following:
- Swimming/Aquafit. If you have a fear of drowning but are still able to get yourself in a pool, Aquafit may be a good option as much of it is done in the shallower end of the pool and doesn't involve dipping your head under water.
- Biking both stationary and outdoor road biking, though stationary is better for my joints as outdoor biking can be a bit unpredictable in incline, intensity, etc.
- Skating, this one isn't great for a lot of people with EDS but I grew up ice skating, so I've found that being skilled/comfortable skating means I can avoid putting too much impact on my joints. I do occasionally experience some pain with skating but it's not common.
- Yoga & pilates can both be easily modified for EDS/HSD. Check out @hypermobile.yogis on Instagram (they have an amazing book about hypermobility and exercise too!), and jeannie di bon (https://jeanniedibon.com/) I've used Jeannie's youtube videos as well as signed up for access to her program and both were great.
- Ringfit for the Nintendo Switch - so easy to modify!!