Liberation, fatigue, & exercise?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Liberation, fatigue, & exercise?

Postby alby » Tue Jan 26, 2010 9:17 pm

We all know fatigue is a major affect of MS.

My fatigue is very high and pretty much prevents me from exercising, I just hope I’ll be able to exercise after the procedure.

I have a question for those who have been through the procedure with or without stent. Have you increased the pace of exercise or started exercise if you were not previously? Or maybe you haven’t, because you are afraid you may cause some kind of damage to your stent(s) or veins.

I think your experience would be a good indicator for those who have not been through this procedure yet.

I am personally anxious to start exercising and gain back some lost muscles.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 4:00 pm

Postby CureIous » Tue Jan 26, 2010 11:12 pm

Sigh. Fatigue, oh how I hate thee, let me count the ways. Keep in mind, in this paradigm, deoxygenated blood is kicking around in your head, fresh oxygenated blood is being slowed down getting in to do it's job, if and when the stenosis/valve incompetence, whatever it is, is corrected, that old used blood gets to where it needs to go, and the stuff that's supposed to be there, is there. While I would never wish that mind numbing, brain depressing, mood crunching debilitating fatigue on anyone, it's almost impossible to describe, without it sounding like "you just need more vitamins" or "more sleep" or "rest" or "a better diet".

Keep in mind however, short of correcting the supply/demand oxygen issues, there are things one can try right now, wish I would have understood then, like I do now, since the Provigil and aforementioned rest/vitamins/sleep stuff was so ineffective, inexplicably so, the problem was that fatigue breeds inaction, we all get that. Inaction then breeds less rigorous breathing, less rigorous breathing contributes to the fatigue, as our pioneer Marie has outlined before, it's the negative pressure (think exhaling) that creates the "vacuum" (my word for it) that pulls that blood down out of the brain. In the CCSVI view, "the more the merrier". Even though there is a restriction, that force of exhalation is pulling that blood down more vigorously during activity than when the body is at rest. Toss in our flat-bed sleeping and you have a recipe for a perpetual motion machine, working in reverse, it feeds on itself.

Anything you can do to increase that breathing rate at this point, is going to help pull that blood down from the brain in greater volume than inactivity. I know others might have ideas for those less ambulatory to do this, (not talking about running marathons here), but I know say like last year (oh wait I mean 2008 where has time gone), when our car had an accident and was in the shop for awhile, I walked to my chiropracter, right in the middle of a really bad season for fatigue and such. It was 1.5 miles and change, one way. By the end of 3, maybe 4 appointments, I was hoofing it pretty good, and feeling better the rest of the day. This was long before even hearing about CCSVI. At first I thought "oh I'm just out of shape" but it's more than that, it was establishing a routine that included regular cardio-friendly walking (I go fast), which was absolutely, sans any other medical interventions, the best thing possible for me at that point, and I didn't even know it! No WONDER I felt better.

So there is some motivation there, to do whatever you can right now, , to get that breathing going faster, get that blood out of the brain best you can. Makes for some good stopgap measures in the interim. I'm sure others can further my rudimentary explanations here...

Once again, I totally get what you are saying re fatigue=not exercising, but there are other options to get that breathing going, not necessarily involving anything vigorous. Plus IBT, cannot say enough about how that helps your blood flow while you sleep. I know even now sleeping on a flat bed leaves me tired and groggy in the morning, though I can get up and get going in very short order now, only problem now is running out of time at the end of the day, too many projects going on at once. But a short "propped up slightly" nap on the couch, oh boy it's like BAM! here I come...

At least for me, the fatigue abatement part was no joke. I know after a long phone conversation I feel more energy. All that talking (and trust me I am a TOTAL motormouth), always leaves me pumped, well duh what does talking involve? Lots of inhale/exhale. I mean don't hyperventilate or anything... :)

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1202
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby Johnson » Tue Jan 26, 2010 11:24 pm

Good to read you again, Mark. That makes some sense.

I think you may be my long-lost twin (other than me being older than you...). Mr. Motormouth is me. Maybe that is why I haven't gone SP sooner?

Grin.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

good detail answer

Postby alby » Wed Jan 27, 2010 12:41 am

thanks Mark for your detailed response, but i am curious if you feel any difference because when the fatigue isn't there, one automatically gets energy, at least that's what i used to get when on steroid after each attack. but now being in such bad shape, i just want to do what i miss, and hope i can.

how do you feel with four stents? do you go to check the integrity and flow often, and personally do you have more energy or desire for exercise? because as good as breeding suggestion is, it's not going to build up muscle mass and that's what i need.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 4:00 pm

Postby Salvatore24 » Wed Jan 27, 2010 4:12 am

I was going to ask something similar......

Has anyone been told to avoid certain exercises/activities due to risk of the stents moving? Prior to my first attack in August last year, I was training 6 days a week (3 days weights, 3 days cardio) and I was going to start boxing a couple of days after my attack coincidently. I do want to start boxing once I am back to normal, but will taking punches to the head cause the stents to become dislodged/migrate?
User avatar
Salvatore24
Family Elder
 
Posts: 109
Joined: Sun Nov 29, 2009 4:00 pm
Location: Melbourne, Australia

Postby shye » Wed Jan 27, 2010 5:20 am

Alby
what about getting weights?
I was able to do very little when at my worst with the fatigue (live in a walk up building--had to stop and sit every few steps just to get home-and then no energy for anything else)-so got a pair of ankle and hand weights--incredible effort at first, and often could not use them, but very gradually, built up a regimen--I have oste, and wanted to build bone, but it has also kept my muscles in good shape (and I only use 5 lb weights at this point)
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby alby » Wed Jan 27, 2010 9:47 am

Shye,
5 pounds is the limit i can do and that's weight lifting, but only 10 times each hand, i am on a scooter and have foot drop, can only walk about 15' using walker.
so full exercise would help a lot.
so Salvadore's concern is very valid. danger of stents moving has crossed my mind.
seems like nobody's doctor has said anything about dos and don'ts of exercise after procedure, especially with stents, no kind of warning for patients not to over do exercise?! i thought maybe doctor Dake would have said something to his patients.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 4:00 pm

Postby magoo » Wed Jan 27, 2010 10:51 am

I have started exercising since surgery. I had terrible fatigue. I could never exercise without becoming dizzy, exhausted, and ending up in bed for several days. So, honestly, I avoided it.
I have since started walking on my treadmill every other day. I have so much stamina and strength now. I have to build up my work-outs slowly since I am out of shape, but it is awesome to feel good again!
Dr. Dake hasn't given too many restrictions in regards to the stents. Exercise is fine. He did advise no chiropractic manipulations. I have no idea how he would feel about boxing? I don't think being hit in the head would be a good idea.
The stents won't dislodge or migrate at this point as they are integrated into the vein. That is not a concern.
Hope this helps to answer your questions:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Rhonda, you made my day

Postby alby » Wed Jan 27, 2010 10:58 am

Thanks a lot for your post. it was exactly what i wanted to hear. you put my mind at ease, and the light at the end of the tunnel is now shining brighter.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 4:00 pm

Postby Salvatore24 » Wed Jan 27, 2010 7:06 pm

Thanks Rhonda.
User avatar
Salvatore24
Family Elder
 
Posts: 109
Joined: Sun Nov 29, 2009 4:00 pm
Location: Melbourne, Australia

Postby CRHInv » Wed Jan 27, 2010 7:50 pm

Hey alby,

I just have one low jugular stent. I exercised before the procedure too. My thinking was that if this idea is right, I need to move that blood. (I know that isn't going to work for everyone.) I was running a mile and walking a mile at least six times a week. This was my job. I knew this was helping me. Yes, it did diminish what else I could do, but I did this anyway. I am a stay-at-home mom and really, enough with everybody else... at least for a minute.

After the procedure my plan was to start it right back up. It was suggested to me to wait a week. Honestly, I really didn't feel like starting again until about day 10. Then the migration issue came up here and I quit. I decided to wait until after my two month check when I could see the new films of my stent in place and know that it was integrated into the vein.

So, I have started back up and all is good. Honestly, with the two plus month break I am not yet feeling stronger in my exercise. BUT... with the lack of fatigue, this is not my only 'job' anymore. I can do this and do more. The other day I ran errands all morning, then I ran, then I showered and did all my kiddo transportation duties until about 9:15pm. Really!

Rhonda - Thanks for the chiropractor comment. I kept meaning to ask about that and forgot. AND way to go on the exercise. You are amazing!

HTH!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 3:00 pm
Location: Chandler, AZ

Postby berriesarenice » Wed Jan 27, 2010 8:12 pm

Rhonda, so interesting about the Chiro restriction. Is that just for the short term, or never-ever. I see mine once a week now.
User avatar
berriesarenice
Family Member
 
Posts: 80
Joined: Tue Dec 01, 2009 4:00 pm
Location: USA

Postby magoo » Thu Jan 28, 2010 8:49 am

Beth was very encouraging to me about exercise. Thanks Beth!!!
I took the recommendation from Dr. Dake about chiropractic manipulations as a forever statement, although he didn't actually say forever.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service