Exercise With Joint Issues (EDS) and Neuropathy

[TCP]

Hi

I have been exercising for well over a year now and I built up from lower leg exercise and then incorporated other exercises in order to focus on the core. All was going well with the exercises although it hasn't made me feel dramatically better, as yet, and I've not been able to live my life any more normally in any sense (I have been pretty disabled). Lately my knee joints are getting more and more uncomfortable with gurgling and grinding and my spine (longstanding spinal issues) is causing me more discomfort. I guess it is to do with EDS and I'm being careful not to over-stretch my joint or stress myself too much. The neuropathic pain also intensifies after exercise. 

Has anyone else found problems like this? I'm doing as I am being advised and I don't want to give up now. 

[DizzyGirls]

My daughters have EDS Type III also and have a difficult time exercising.  I know they say that exercise will help, but it's really hard when your knees, elbows, shoulders, ankles, etc. keep sliding out of place.  Their chiropractor has given them some very mild exercises to strengthen their core, knowing firsthand what the different types of exercise can do to them.  It's extremely frustrating for them.  I hope you can find something that you can do to keep you active without making things worse!

 

 

[dancer65]

I am not sure what exercises you are doing but isometric exercises may help where you contract the muscle in a static position so there is no range of movement, done slowly and correctlythey are very strengthening . Another thing to consider is balance between the core muscles so both abs and back muscles are worked evenly there tends to be a tendency to favour the abs ! I have a number of chronic soft tissues problems and find this technique really  helpful 

 when I had my hysterectomy they damaged nerves in my back ( complications during surgery) to help strengthen my back and abs I put did pelvic tilts with my hand on my ischium bones pushing my lower back onto them squeezing my tummy muscles , very basic but very effective as you strengthen up you should feel the lower back muscles working against your hands . 

My POTS Dr thinks I have JHS due to my flexibility and othe symptons but not had official diagnosis yet . My body aches all the time whether I exercise or not so I figure better to be strong and ache than weak and ache  

Hope you can find something that works for you

[Katybug]

TCP,

Have you tried braces for the joints that are particularly troublesome? I have braces for my ankles, knees, wrists, and a neck collar. I don't wear any of them all the time. Sometimes my ankles will start to hurt and wearing the braces for a week or so stabilizes the joint enough to allow the soft tissue to heal. Same with my knees and wrists. I also had a problem for a bit with my sacro-iliac joint locking. The physical therapist taught me how to unlock it. I have a brace for that too.