Exercise Tips?

[alimcat]

Does anyone have any exercise tips that will not flare your symptoms up? Thanks in advance.

[alimcat]

That is good information too. I am open to anything. The other day I swept outside and I tried to remember to take my time and do it easy, because I too get in a rush to just get things done. Well the whole right side of my body from shoulder to mid back was super sore the next day, like the muscle that runs down along your spine what hanging off the bone is kind of a way to explain it I guess, happens to my shins really bad too. Thats what really irritates me because it's so ridiculous! That should not happen and there is no good reason for it to. So I don't know how you are able to do all that without making yourself sick, if you have any resources for the information you have found I would greatly appreciate it. I will try anything, but from what you have said you do I can only imagine myself getting so sore I am literally sick for days after. That is pretty amazing, I am really interested in what you are doing. When I was about 12 I was benching 115 lbs so not being a active person since the age of 17 has really put a damper on things especially over the last 3 years the most though and I am 26 now, and I just can't do any of this stuff where as before I could and I would be in pain but not like what it has become where it takes over an hour to get out of bed, and no matter what I have done on days when weather is bad I don't even want to get out of bed but can't lay down either, gosh I too could go on forever. Anyways I would really like to find the information that you mention to learn more about what you are doing, I am also looking into the Wed. Thread for tips. I am active but I feel like I need more, that maybe it will help or at the least make me feel a little better about myself. I walk, play with my child at the park, go to the river, But none of that is really good cardio except the park play, but I also work at the computer a lot as I do web design, multimedia production and video editing. But I have a 3 year old so when I sit at the computer it is never really a long time, maybe I get 10 min straight before having to get up to do something for my kid. He's a demanding young man. Hahaha!

[alimcat]

Yes and thank you, I will research it more too, I am in the finals stage for college so time is def scarce especially with the child and school right now. I don't have anyone around to take him off my hands to get a break so its all the time with my boy, which I don't mind one bit, he's my sunshine. It is tough to find people to understand, and I mean really understanding, so the people of this forum, especially yourself selma, have been a blessing. I feel like a broken record sometimes to my family and being such a strong person I don't let people see the pain i am in constantly. I made a joke the other day I should start making bets on the weather because I always can tell when its overcast or going to rain since my body goes in to a more debilitating state.  

Wow that is really awesome, that it a true blessing having such a neat doctor like that. I don't understand why a doctor wouldn't want to be that way. You are really lucky to have found one like that, thats really cool. I would do everything in my power too to keep a PCP like that if I ever find one.

Thank you I will, they did get my information over and it was received this last monday so the specialist is going to take a look and then give me a call to schedule an appointment. I have heard cobra is REALLY good insurance. I will look into it and see what the costs are. But 6 months, why the wait if you don't mind me asking. Is it just a standard requirement. I am hoping I can find a little out from the specialist without having to go in just yet since my ins is canceled right now, and if so then I don't see why I couldn't wait 6 months, I have been dealing this long already.

Have a fabulous day Selma, and everyone, talk soon! ;-)


  Keep me posted on how u r doing and for ins, not sure if u will go with cobra, but if u can wait 6 months...there is a way for u to apply for medical ins...u still have to pay for it, but u can not be denied with a pre existing condition.

[selmaS]

  I am glad I was able to give u info u could use.....and always know u can rant here...lol... as I say that is y we r here, and know u will always have someone that understands : )

  I was lucky with my PCP that he loves to learn as much as he can about everything, so, when faces with something he didn't get in med school, he researched it himself....and knows I research it as well, so we have discussions and learn from each other...I like that about him.

There r not many Drs out there like that, and not many that like us doing research....but if u find one that does, hang on to him.....

  Keep me posted on how u r doing and for ins, not sure if u will go with cobra, but if u can wait 6 months...there is a way for u to apply for medical ins...u still have to pay for it, but u can not be denied with a pre existing condition.

[alimcat]

Thank you for the link selma! ;-) And also thank you for the explanation of EDS. See if I could even get a word in with my ex PCP I would but anytime I try and talk he cuts me off. I am better off finding a new doctor. I am just so tired of babysitting this office to do their job. Its pathetic, I have to stay on top of them for everything or it doesn't happen or will happen a month later. I just hope the next doctor I find will be better than the last. I will try that, I just hope that the new specialist can give me some kind of a dx. I just want to know if it is chiari. It definitely seems that it is the most likely explanation to my daily issues and the dilation in my cord, scoliosis, nystagmus, etc. but I still have yet to find that out. Fingers are crossed and prayers are out to hopefully get an answer...if my paperwork makes it over to that office. My insurance is ending today too, and I told them that and they still took their sweet time getting my paperwork over and as I mentioned before they didn't bother to call me about the other specialist either. Is it just me or does it seem like they are doing this on purpose. And yet again ranting... Thank goodness we can do that here. Hhahaha!!! ;-) I am going to have to research the EDS more also. I have always been super flexible but when I was younger I was really athletic so I just figured that was why. When I had my first car accident my chiropractor told me the because I was so flexible is the only reason I came out of the car accident alive. So who knows maybe chiari actually saved me? God works in some mysterious ways to say the least. Maybe I bruise easier than I think, I do get bruises and often wonder where they came from. I don't know selma, but its worth looking into and thank you for keeping me so informed, you've really helped educate me.

[lu7997]

Sorry.  I am long winded.  Lol.   I have a really good workout program I do.  It is intensive but all are built around protecting the neck and not jarring the head.  PT has worked with me on my house work too and I have learned ways to do it better and I actually keep up on it now without reprocutions (when I don't get in a rush and just get it done).  

I am also on a very strict diet that eliminated all MSG and perseveratives.  This tramatically helped the head.    I do have hydrocephalus also which is what this may be helping with not sure.

Anyways biggest thing is to do low impact that doesn't jar the neck.   I really like the high back bike the best.   Great support and great cardio.    

Good luck and hoped some of this helped.  : ).  

[lu7997]

I hve a high back excercise bike that supports my neck.    That has been my life saver.    Also low strenuios step on the wii where I can focus on one thing and not get dizzy and not jar anything and not trip on uneven sidewalks or other things.  

I added weights for my arms and made sure it was laying down with neck supports and this just worked the arms and no strain on the neck use good weights with straps so you don't drop them on you

also I use a palates ball for my abs and do reverse crunches pulling my knees up onto it and back out supporting nyself like a pushup.  This is a no strain on the neck pushup.  Be careful coming up too fast so you don't get dizzy.  

[selmaS]

  Hi, yes there r many abbreviations so we do have a list in the Health Pages to help...here is the link-http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

EDS= Ehlers-Danlos Syndrome....it  is a connective tissue disorder that affects the tissue that hold our joints together, so many of us can be hyperflexible (double jointed) or bruise easy as there can be skin issues too, skin tears easily, slow to heal....there are many types one is vascular.

So many with chiari also have EDS so it is considered a related condition.

Rants r allowed here, u r safe and know we all understand how u feel....

  The biggest issue getting Drs to listen is to ask them to ignore what they have been taught about chiari since new things have been found...that is easier said then done, as a PCP does no usually go to seminars on  specialty neuro issues...so there is no way for them to be up to date....

We really have to teach them, and get them to open their minds to all of this....sad really......

[alimcat]

I just did recently and I am healthy as a horse (except the high normal blood pressure), which is probably why my PCP thinks I am an over complainer and not seeing me anymore. Geez... Hahahaha!!! This is just so crazy. But yeah the cold is horrible, and even too hot of weather is sickening. I remember when I used to be able to go out to the river in over 100 degree weather, now if I even go outside in the 90's I am about to keel over. Hahaha! Not funny more ridiculous that it has turned into this. I have had the spasm in my back, and I don't know if it is actually a spasm I just don't know what else to call it, but my mid back down cramps up and just hurts so horrifically, the only way to ease it is to lay down sometimes for over an hour, If I can catch it soon enough and lift my upper torso to relieve the pressure off of my spine then I can get it to subside pretty quick although I still have to rest or it comes back immediately. But I do have that 3mm dilation of my central canal in my spinal cord so sometimes I wonder if maybe that is what causes it? IDK and I can't get a dang doc or NS to look into it, all they say is its normal. So annoying... Can I ask Selma, what is EDS? I am not great with the abbreviations. Sorry.. :-) Yeah no kidding there sure is a lot of symptoms but this is the first time I have found one that matched up like this, I thought maybe it was fibromyalgia because after any activities I would be bed ridden for usually about 3 days after. I never found not one that had that symptom where after activities symptoms flared up like it does with the chiari. Also I called the PCP office today and talked to them monday early morning about the new specialist that takes my insurance and she tells me they had to get it signed off and she plans on faxing it in a couple of hours later this afternoon. So it took 5 days? I want to go down there and cus them but you know what God will give them what they deserve for treating people like this. They never called me in the first place to let me know either that the other specialist I FOUND, wasn't going to take my insurance. I called the specialist office and they told me. I just don't get what their problem is with me. I am nothing but courteous and patient. I go to college I have a three year old and I am about to intern for a news channel so don't make the headline for malpractice. SO TIRED of that place. Its like puling teeth to get help. Sorry went on a rant there.... :-/  

[selmaS]

  I only get into warmer water too...I do not like the cold as it makes me hurt all over...I think my issues r related to my EDS dx.....but we all are different and some have similar issues,.....just different combos...lol...

I get spasms in my feet even with the warmer water...so it can be a vitamin issue, do have ur levels checked...Vit D , B12, magnesium and potassium...to see if ne of them may be causing ur spasms.

[alimcat]

PS I need to ask, when we are talking about getting into a pool, I can not do cold like I used to, it shocks my body and puts my back into spasms, so are we talking about a heated pool? ;-)  And also does anyone else seem to be more sensitive to cold, and hot for that matter. Such as not being  able to withstand hotter weather or icy cold chill your bones weather. Just wondering...

[alimcat]

Really great info guys and it is tough and you almost become afraid to do anything for being literally sick days after, debilitating pain, nauseated to throw up sick literally. Selma I will undoubtedly look for the thread you mention in your comment. Thank you. I go on walks around my neighborhood with my 3 yr old and pup; and sometimes I get lucky to push out a little more but even doing house cleaning really messes me up. Its very disheartening. I have always been so active and even not feeling well I still am active. Or try to be unless I am just so sick feeling I have to lay down. But yeah I am thinking just maybe if I can get in a exercise routine that won't put me down for three days after then maybe that will allow for me to be able to build up a tolerance to other activities to not affect me so crucially. Today and yesterday are the first days in weeks that I do not have a headache. It feels so wonderful. I can think!!! I am still careful to not jerk my head as that still causes a sharp shock like pain in my head but as fear as headache goes we are looking okay! fingers crossed. I found a new specialist that will take my insurance and my information is supposed to be sent over there monday. I called this morning and I am supposed to call in the late afternoon because they do not see it yet. I am really glad actually that my PCP is refusing to see me now, they have always been a pain to deal with. I am just hoping the next doctor I try will not be so arrogant and appreciate the research I do vs. being intimidated by it. Sorry I am not settling to just take pain killers, NSAD, muscle relaxers and anti anxiety for the rest of my life. He told me once to get used to being in pain thats just the way its going to be. I was not happy with that answer...... Haha! And now I am kicked out. hahaha! Oh life...  

[lynnbrook177]

I was doing yoga until I found that I was straining my back, possibly chiari related.  I would come home so fatigued, from just doing what I should easily be able to do, so yoga was out! So.....I tried swimming.  I thought it would be easier as well, but I got the same discomfort between my shoulder blades and came home feeling crapy! All I really did is two lanes of breast stroke.  I think swimming is still strenuous, you just don't feel it because you're in the water.  What I did try, though, after I began to feel the discomfort, is put a flutter board behind my head and just use my legs.  It was actually a good workout -- I felt it the next day, in a good way :)

[eemomof3]

I have been working out for the last year or so. I walk on the treadmill and lift light weights, but my real problem is exercises for my abs as anything I try to do for that is a strain and kills my head. Over the last month my headaches have gotten so much worse and its getting so that even walking on the treadmill hurts my head. I have managed to push myself to lose 40 lbs over the last year, but its getting much more difficult now that my head/neck are getting worse.

I will be watching out for your exercises!!!

[MamboMom]

I'm trying to look into this as well....I know swimming is the least strenuous, and with summer around the corner, that is what I'm going to be shooting for.  I also do the bicycle at the gym, because it doesn't make my head hurt as much, and if my left side gives out, I'm already sitting, and my right side can compensate.  Good luck :-)