Change what you do, not what you don't do

[EdwardPB]

Many medical problems create a need to make a drastic life change. Too much focus is placed on what you shouldn't do, to aggravate a condition.
More importantly, what should be done, is to correct the deficiencies caused by the condition.

Neuro deficit, creating muscle weakness, is no different than cutting the muscle with a knife. It's the effect, that weakness causes, that is the real problem.
The weakness. causes further long term damage.
Don't lift heavy weights, because it puts strain on your neck...
Don't ride a motorcycle, because the bouncing compresses your spine more, etc...
Neuro induced weakness is causing your spine to lose curve...

The answer is too compensate.
When a heavy person has gastric bypass surgery, if they go home and still eat a box of twinkies every hour, they are still going to get fat.

Strengthen the muscles, to give the spine better support.
More importantly, make sure the muscles are strengthened equally. Left neck stronger than right, guess what, it pulls the spine left. This misalignment increases wear, pain, and disease progression.

Will this kind of proactive approach stop a disease such as Chiari?  No, but it can sure delay the progression. It will also reduce the symptoms.

Don't stop taking all steps to achieve the best possible outcome. But add proactive approach to life style activities that reduce (in some cases even reverse) some effects and symptoms.

Almost all muscle/skeletal pain (and defects) are a result of unequal muscle development. (one side pulls more than the other)
You may not be able to do anything about the cause. But you can do something about the results.

[WarriorMomma]

You had a question regarding exercise and Chiari. I have been very active since junior high school and am currently in the military. It has been very trying on my body to maintain physical fitness when it is almost unbearable to get of bed some mornings. Extreme fatigue and everyday activities have become wearing on my body. Today getting out of bed and to my car to go to work took 45 minutes. Not because of primping! It was painful to do the basic functions of getting dressed, brushing teeth, brushing hair. NO MAKEUP today.

Balancing exercise and Chiari is an individual matter. Knowing this logically and dealing with it emotionally is another matter. There are days when I have "good days" and "fine days." I refuse to tell others, it's a bad day. Just tell them it's clouded over. This helped me a lot.

Carolyn put it very nicely here: "So, just a reminder that having Chiari is constantly a balancing act of what is good for your body but also when to slow it down too."

Sorry for your diagnosis and much luck in a speedy recovery.

[selmaS]

Carolyn I totally agree this is a balancing act.... unfortunately those that do not have it do not always understand our reluctance to hold off  on certain activities.

[*Stormy*]

Just my little bit of input..

I spoke to my PT about this issue...and she does agree that you have to keep strenghtening and building muscles towards the end result. However, she did say that with the amount of pain I was having is my body signalling that it is burning out b/c I am pushing it too quickly. Bearing in mind that I have 3 kids to deal with, housework, fairly busy life plus I am throwing PT exercises onto that. Sometimes I was just plain too tired to do them and I am only 4 months post op. Her recommendation was to ease off, go to all these other appts I have to figure out the other things, do the exercises when I feel I can and then come back in 6 weeks. She felt it is extremely important to balance what your body is telling you with doing the exercises. I asked her if I should feel guilty and she was so adamant that I shouldn't. I almost wanted to cry...it made me feel so much better that I wasn't just being weak about it..

So, just a reminder that having Chiari is constantly a balancing act of what is good for your body but also when to slow it down too.
Carolyn

[EdwardPB]

So, do you want to have medium pain, and slow by years? Or, do you want to medium pain, and have it progress to bad in months with more and more damage?

Lack of muscle support will increase the damage at a much faster rate, that irritation from exercise.

[selmaS]

I am intrigued with this post...I get what u say...no pain no gain mentality in regaining muscle and activity after a surgery...and I have muscle pain after doing more than I am used to doing...but, I might add that I had the same pain while working 70 plus hours a week and was to the point of going crazy from it.....I know that some of the pain I feel now is from using muscles I haven;t used in a long while, while I also know some of my pain is just from doing too much....we do have to listen to our bodies and we do have limitations, more so than someone that does not have chiari......

Some of us do have perm nerve damage......some of us can go back to a pretty normal routine with no ill effects......

I know I am not or have not caused damage by doing what I have been doing the past few weeks, but I also know I should not feel like this either....it was 2 months of work...so I didn't just over do it and not complain about it....this was a gradual working on a project
that without chiari would not leave me feeling this way and that is what we the members of this forum mean when we discuss this issue.

I enjoyed reading ur views
"selma"

[EdwardPB]

You are confusing existing damage with new damage.
I am referring to pain not being an indicator of damage. So if you have pain when you exercise, or do anything, it is a diagnostic tool and not an indicator that damage was done.
You have to learn what pain specifically indicates NEW damage.

[*Stormy*]

I should add...this is after a typical day where I am moving around doing housework, getting the kids off the school etc....by the time I get through all my "chores" I don't feel like there is much left in me.

I do see your point though..if I do push myself the do the exercises, most of the time I do feel a little better. I think it's because they tire out the muscles and get them to relax. You do have a very good point about the relaxing cycle.

For me damage avoidance would have been them dx and doing surgery well before I got to this point...the damage is done and there wasn't anything that could be done when the nerves weren't firing properly. In fact, exercising while I was in this state is what caused my symptoms to get worse (mind you I was def doing the wrong type of exercising), so you have to be aware of that fact too. So for me now it is all playing catch up, trying to work on healing the damage. So I am a little backwards that way....

I am going to PT this morning so we will see what she says..

Thanks
Carolyn

[EdwardPB]

Carolyn:  
You describe a typical, "endless cycle," misconception.
One of the worst things people can do, is rest, when they have pain.
Pain is not damage. Pain, is a tool, to gauge healing or degradation.
Key, is to learn what pain represents damage, and what pain is information only.
A large amount of pain requires strengthening, or simple activity, to reduce it.

The back is an excellent example. Somebody strains their back, and almost everybody wants to sit down or rest.
That's the worst thing you can do. The muscles then tighten, or spasm. That's when you start to have even more pain, or damage. You are now having the muscle strain against itself. You are also inducing a misalignment of the spine.
It doesn't matter if you have a disk compression or herniation. Then get in a pool, to avoid compression. But, the muscles need to be kept active and stretched. They need to be kept strong and strengthened.

There are 2 things, and 2 things ONLY, that support every ounce of weight in your body. Muscle and bones. The bones need the muscles to keep them in line and right.

There's also the issue of lactic acid buildup, and lactic acid poisoning, when exercise starts to eliminate that lactic acid in large amounts.  (cramps, spasms, headaches, tingling, numbness, tinnitus, pain) [sound familiar?]

Stop asking about pain avoidance, and start asking about damage avoidance.

[*Stormy*]

Edward..I want really want to thank you for posting this..it really got me thinking.

Chiari caused the nerve damage but the result of that was the muscle weakness and spasicity. In turn that is why when I first had issues with walking etc I didn't really feel that I had much pain until about a month along. Then the pain came in my muscles along with my joints and everything else started having trouble too. My PT did explain this to me as well that most of it is the result of being so imbalanced with my muscle output. Before surgery I also had many spastic muscles which would render the other ones basically unusable so now they are extremely weak. I have seen signs of this..I can lift my leg up if I lean over to my side but if I try to lift my knee up standing straight up, I can't even get it off the floor. My PT feels this problems is the key to why I still walk with an unsteady gait.
So, it makes me feel better as far as the one question that has been running around in my head...why is there more joint and muscle pain after surgery then there was before? It isn't the Chiari anymore but I am guessing that it is due to my body trying to function and recover from a year with uneven muscle mass. At least before there was the muscle spascity to keep me up and together!!
I know the right answer is to keep on with the PT to find and correct which muscles are weak but my problem is that I need to deal with the pain first to be able to do that. Sometimes I am in so much pain, the ONLY thing I can do is lie down and I don't end up doing the exercises. I am also very concerned now that there has been permanent damage done to my joints.
I have been talking about the TENS machine as an option and I am going to talk to my PT about it too. I'm not sure what they answer is here, I want to work on getting my muscles functioning like they should be... I know that I won't find relief if I don't but I feel like I'm in a no win situation.
Carolyn

Carolyn