Syringomyelia and exercise

[Autumn55]

I was just diagnosed and didn't have much time at my appointment to discuss anything.  My neurologist is calling me back in for an appointment and referring me to a neurologist.

So I am wondering if I should continue exercise?  My symptoms get worse with exercise and it feels like I'm hurting myself with exercise.  

Am I causing more damage or should I not worry about it and continue exercise?

Thank you all.

[lydelia]

I completely feel your pain and understand the exercising issues. I was recently told by the NS I saw that I needed to stop taking jiu-jitsu, and I really did not want to, but I could see his point. I am one failed throw or misplaced choke away from surgery. I knew that jj was hurting me in some way because after some classes, especially the really rough ones, I would come away with headaches, and neck and back pain, not associated with being choked, lol. As for what to do now, in terms of exercise, that is what I am trying to figure out too. Walking bores me, I am more of a group activity person, so I have been thinking about maybe trying yoga or something like that. Martial arts is something I have always been in, and it chafes me to give it up, but there is nothing to do but do it.

[mmamom]

I can simpathize. I'm not even a real chiari (3mm) in terms of herniation, but in terms of symptoms I've had them almost all.  I was training for a MMA match when I got the news. That dream gone for good now.  Exersize definatly makes me worse but I've learned that if I keep it to small doses (not more than 45 min) its ok and if I stop as soon as I feel dizzy or headachey then the ensuing headache is not as bad and only lasts a few hours to a day. I've been trying to stop before I get dizzy and that seems to not be followed with pain. So, my experimenting with exersize says take it easy, test out your personal limits and dont push them. I tried to push mine because I desperatly didnt want to stop training, it was bad, lots of puking, I keep it light now. best of luck and I'm very sorry this is happening to you.

[selmaS]

Hi...EDS= Ehlers-Danlos Syndrome.....

What are the symptoms of EDS?
Clinical manifestations of EDS are most often joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis.

Skin: soft velvetâ-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
What are the types of EDS?
There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that "runs true" in a family. An individual with Vascular Type EDS will not have a child with Classical Type EDS.  Learn more about the different types of EDS.
How is EDS diagnosed?

  We are all different in how we r affected, and chiari is a life altering condition...but many can continue to work, but mayb at a diff type of job then what they may have done b4.

It is possible if u have nerve damage already, that is irreversible, yes, but many r able to get surgery b4 that happens....so it is wise to find a dr that is well experienced.

What if's r not now...deal with now....the what if''s fall in line with the should of's.....not worth wasting ur energy on.....

  "selma"

[Autumn55]

What is EDS?

Thanks for your posts.  I enjoyed reading your info.

I'm worried now that I will end up losing my job.

I'm guessing that this is a life long thing?
And that even if you do have surgery, that damage that is already done is irreversible?

With that, I'm assuming my job is gone, since I am military and won't be able to keep up with the running, ruck sack marches and deployments.  

Its very stressful right now, thinking of all the what if's!

[castleton]

Hey, Autumn, I am in the same boat.  I have a SM, not chiari, and lucky at this point not to have any symptoms but pain.  When I exercise, it gets much worse and I need to rest a few days afterwards to get back to my "normal" level of pain.

I was a walker until recently and often walked 3-4 miles a day a few days a week.   Now I can't even walk round the block w/o suffering.  I was told to try walking in a pool so I may try that.  Also, a recumbent stationary bike is good.  Its the kind of bike that you sit in like a chair.  It allows me to isolate my upper and lower body movement so taht my torso essentially is completely still.  At least you can work your heart and legs.  

See if you can find a bike like that to try somewhere.  Might help.

Good luck to you.  You might hold off on the exercise until you see the NS.  Though my experience is that the surgeons are good at surgery, not so good at recommending lifestyle changes such as exercise, PT, alternative care.  Mine told me not to do it if it hurts, but I want to know what TO DO to help me stay healthy and active. He said just to experiment and if it hurts, then it probably is making it worse.  My problem is everything hurts!  lol  But I did find the weird bike was good.

Share what you learn!  Good luck!

Amy

[selmaS]

  Hi and welcome to the Chiari forum.

ajunebug is right walking and swimming r 2 good forms of exercise, and a recumbent bike is good too.....

We have a thread/list in the Health Pages of activities to avoid with Chiari and Syringomyelia here is the link-http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

  U also want to find out what other issues u may have going on in addition to ur syrinx....such as EDS, that can limit what u can or can not do too....so do get a full check up first and talk with a chiari/.syringomyelia specialist.

   "selma"

[ajunebug]

If you feel like you're hurting yourself, definitely stop for now. Or, I'd switch to something like swimming or taking long walks. Something low impact, but still keeping active. You'll find varying opinions about this, but it's my personal experience that keeping active (even if it's just taking a walk) is very important for people with brain and spinal issues. So while I wouldn't do anything high-impact or deadlift heavy weights, I wouldn't just loaf either. You know?