saw a therapist today
 

she seems to think that I need to start doing things in small doses to get my brain used to doing things again. Like for instance short trips in the car, half hour at the boys baseball games..then go home, short walks, etc., reading short amounts each day -- then slowly increase.

I'm all for this, and one neurologist told me this...another told me basically the opposite. He said don't do anything that brings on the symptoms. I can't walk without bring on the symptoms...or brush my teeth....so what to do????

Most doctors don't have a clue about this. I rested for a long time and also almost isolated now for about a year. Sometimes I think this made things worse. For e.g. when I stayed in relative's house I was able tolerate people to some extent and sit down and chat. Now I can't even do that or talk over the phone without getting dizzy. My symptoms are there the minute I woke up and till I go to bed.

For me resting made my body more painful and all kinds of aches and pains started cropping up. If I have to back up when the symptoms begins then I have to be in a coma since my symptoms never takes a break. Only the intensity changes even if I do nothing I can feel horrible. This thing is so confusing since for severe TBIs they start rehab as soon as possible - sometimes in few weeks. PCS is also a mild TBI but rest is recommended.

I doubt there is a simple answer. Each brain is different and every effort is trial and error.

I don't know about you, but I've found not doing anything for weeks makes activities even harder to do once I get back into them...

For instance, a month ago I could go on long walks, check my e-mail and watch television, but I decided to take a break for a week. Afterwards, even just watching TV for 5 minutes was enough for the symptoms to really increase. From then on I've been GENTLY pushing myself to get more and more into light activities, and now I can go on my PC and talk to people for a couple of hours without the symptoms getting really bad.

Think of it as a muscle: if you stop using it, it eventually gets feeble.

I find that I'm the best doing everything I can up to the point of painful symptoms. There are other symptoms I don't stop to think about - but when the pain comes on, I do less than that the next time. But as much as I can, I push it up to just under that point. That's the athlete in me though maybe.

I can do a little more now than I could before in the last 2 months. I don't honestly think it matters what I do. (to a certain extent) The brain will heal when it heals... but in the mean time, I'm not going to loose all muscle and waste away even if it means a minutia of muscle I will keep from simply walking two steps that day.

I'll do as much as I can up to the point of pain... at that point I feel I'm hindering my healing if I go farther.

Finding the right balance
 

The doctor I met with (a neurosurgeon who no longer does surgery - he's now 76), a highly regarded specialist whose patients seem to love him (based on his online reviews), told me it's a matter of striking the right balance. He said you should strive to stay "sub-threshold" (ie, not triggering symptoms), but also that light activity/exercise is helpful if you can handle it. He said it's very much a matter of trial and error, and finding the right balance, as you progress towards recovery.

This issue really gets to the core of my situation. Earlier this week I felt significantly better - after about 3 weeks of R&R, I really thought I was on the road to recovery. After feeling better for a couple of days, I went for a walk in the park and felt pretty comfortable, much less constrained, so I decided to keep walking (a total of about 25 mins). I also went for a picnic with my girlfriend that evening.

The next day I had a headache again, and as of the following day (today) I'm still trying to get back on track. It's really frustrating. Two steps forward, one step back...sometimes one step forward, one step back...sometimes it even feels like one step forward, two steps back. Harumph. This has happened to me two or three times now - feel significantly better, get overconfident, do more, get hammered the next day (or 2-3 days). My goal now is to get back to this states of well-being, but next time be more disciplined and take it even slower/easier.

Based on my limited experience thus far, my feeling is that physical and mental rest should be the priority, with the addition of very gentle and gradual activities that have minimal or no adverse effects. Better to go slow than get impatient and overdo it. Obviously, this is easier said than done (as I'm learning)...

I don't know what is going on but I can't do anything anymore. Even 2 mins on the computer gets my head spinning inside. Something is just not right. I feel worse lately. Maybe its the kids being around me more. I am more tired...nap constantly. I just feel like crap. My face hurts all over...my eyes feel weird. I'm a mess.

I also think the less active you are the worse it makes it. Was working being active symptoms where not so bad. Then after back surgery, not doing much things got worse. Symptoms got worse with the recovery from surgery. Back surgery was on 5/4/10 had fusion on lower back L4-s1, then on 2/7/11 had neck surgery fusion C4-C5,and just had hip arthroscopy surgery on right hip 5/26/11 labral repair and microfracture surgery on hip. Just want to recover so i can be come active again and see how it affects my pcs. Its going to be a while though need hip scope on left hip after i heal from right hip surgery. Seems like it never ends.

I've heard that being put out for surgery can have a bad affect on those with PCS.

Too many schools of thought...
 

I too find myself stuff in the "trying to find a good balance" rut. It's really become apparent lately, when I needed to go back to work in order to prevent losing my job.

I pushed it, went back and seemed to tolerate it well while there. However, after a few days, I had a delayed onslaught of symptoms and actually spent Sunday in the ER due to severe symptoms that were as bad as the day the accident happened.

Feeling better today, but now I'm really not sure what to do. I'm back on medical leave, but don't know how much to do around the house again. Rest like crazy and hope I recover from this setback quickly? Or try to resume minor activities to not back slide further?

I guess its trial and error.

As for your therapist, are you experiencing mental health challenges due to your PCS? I know I struggle with depression and anxiety, with the depression mostly being from missing out on my very busy, active previous lifestyle. If that is the case for you, perhaps they feel that some "normal" activity will help you feel more "normal" and less upset about your PCS and it's effect on your life. Maybe try some tolerable activities that you enjoyed before your PCS, so you feel you haven't completely lost your former self. For me, my saving grace has been knitting. It used to be an activity I did to unwind for quiet time to myself after a long, crazy day. Now it's something to break up the monotony and to make me feel like I can at least do something I used to be able to do.

Anyway, I completely understand your struggle and confusion with this issue and wish you the best!

roadrunner63
 

My pcs was from car wreck in 8/2/08. My pcs didnt start for about 6 months after car wreck or that i realized.