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Exhaustion/Muscle and Bone stiffness & pain.

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

I haven't been on this forum in maybe over a year...so hi everyone!

My constant and never ending issue is exhaustion,massive fatique.After 2 years of Rituxen,6 months of treanda,nulasta,rituxen , now at the tail end of another 2 years of rituxen.Im toast! I am ALIVE...and greatful but toast forsure.I have issues with my ankles (biomechanical ) I tryed the gym but my BP (highest was 214/185) started spiking.I ended up in ER several times . I was put on anlodapine and everything seemes to be functioning good now.Due to my ankles and bone issues I bought a pilates chair from TV. Yes.....I did! But when I can't get on the floor anymore and ankels can't take on any impact this was my brilliant idea. LOL! honestly its been good it keeps my siatic nerve pain away and it is slowly building my strength but I am very new at it. I am aslo thinking of yoga but I had a head injury in 2014 and my corrdination & balance is very challenged. Anyways I just want to know if anyone else suffers exhaustion after all that we have been thru. My mom went threw chemotharapy in the 80's and I don't think her energy ever came back. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Hello,

 I can only speak from my experience and I can tell you that it will be three years for me on April 22 and I too suffered from extreme exhaustion but recently feel I turned a corner.  It was as if I woke up one morning and was perfectly fine.  I went hiking with my family and enjoyed the wonderful realization that my family was lagging behind me and not the other way around!  Fabulous feeling for me.

I tried everything and time seemed to do the trick more than anything else.  I have always pushed myself, yoga is fabulous for stress and wellness.  I would highly recommend that if you can.  I did work out when I was up to it and that too is great.  I love to be in the gym, feel best when I am both mentally and physically only this road wiped me out and I had a hard time accepting my new lack of energy.  I learned to give myself a pass and keeping moving at whatever the pace is.  I'm determined to alway move forward, one foot at a time, fast or slow I don't care as long as I get there.  And I did.  I also habe a good diet.

 

I hope the same for you....be patient, positive and give yourself a pass when you're not feeling up to it and relax.

Good luck!

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I am little over a year out from the end of chemo. Early last year the Dr were planning on having me do SCT but that ended up being dropped. So about June I was told to go out and enjoy life. Right. Going to the gym (in my case Curves) wasn't helping. I ended up starting going to a massage place once a week. It helped me more than exercise. It seems I had a lot of muscle knots which is why the exercise wasn't helping as much as I hoped.

Then in July Pokemon Go came out. That got me out walking, outside.  First it was at a small park area near home. I was lucky to go around to the 5 pokestops twice. One day I ralized that after the second time around I wasn't tired so I started doing 3 times. Then someone told me about a larger park around a pond that had 6 - 7 pokestops. Again twice around was it but by fall I cold go around that one 3 - 4 times.  But now it is winter so I am having to find out ways to keep moving. 

Last summer I also talked with my primary Dr about B6 & B12.  Blood tests said the levels were ok but she told me to try them and see if it helped. I felt a differnece after the first week. Recently I started to cut back to taking them every other day. I've notice that I've been having more fatique lately so I am going back to taking them every day. I will be seeing my primary next week so I am going to ask her what she thinks. 

I think the massages and walks during the summer helped me more than anything. Since I work at  a desk I am still getting the weekly massages because my neck and shoulder muscles tighten up a lot and I am looking forward to doing my outside walks again. Afterall, I've got Pokemon to catch!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Buy dirt bikes (motorcycles) and explore wilderness ares near where you live.... Combines a lot of beauty into one undertaking. While it does not require the peddeling of a bicycle, it does demand fitness, corrdination, fast thinking, and a sense of the great outdoors. 

Street sport bikes have an exhilaration unlike anythng else on the planet.  Anyone can learn to ride one safely in under a month; most DMVs offer safety courses.  It is a wonderful activity for couples as well.  I want to rent a bike and ride my wife to the Midwest and back this sumer, but so far, she is not cooperating !

A few years ago, for my birthday, my daughter bought me a ride in one of Jimmy Johnson's #48 NASCAR vehicles at Charlotte Motor Speedway, maybe 5 laps. The cars have no speedometers, but the driver said at least around 185 on the straightaways: Severe sideways g-forces going into the curves ! I'll never forget it.  Former Presidient George HW Bush did a parachute jump two years ago at the age of 90....

Think outside the box, or you will get boxed in.

I ride my daughter's  21 speed bicycle on the streets now, since I have regained some lung-breathing funtion. Two years ago I couldn't make it out of the driveway, ready to faint, and hardly able to push it back to the house.  Decades ago I used to jog about 26 miles a week, but running is horribl on the shins and joints, but a bike eliminates those issues.

 Anytime outside, away fror a computer, is healthy.  Just going in the yard and watching the birds with a cup of coffee benefits the mind.

max

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Well I am greatful for your responses I sometimes need a bit of a boost to focus again. I got a card in the mail just the day after this post and I can go to the gym....free!!! Whats really funny is a really good friend teaches yoga there. It was like I had a billbord in front of me saying " Go learn and do yoga!!! " . Also my daughter just recived a mountain bike from christmas so......I suppose that joining her would be a plus! I can handel peddling much better than walking. 

I have another podiatry appointment and my cardiologist is Monday. My BP is spiking again but I am putting my hope and trust into my God that has brought me this far. :)

Again thank you for your words of encouragement and ideas. It makes such a difference to know we are not alone.

Hugs!!!

By the way....Max,don't you go anywhwere you are right where your supposed to be. Just my opinion.

 

 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I'm not sure if your gym has a pool but I find swimming and water exercises to be very helpful. Just take it easy at first. Same thing for yoga. Don't try to do all the hard stuff. Just take it easy and do what you can and it will get better with time. When I started  yoga after chemo, my competitive nature made me try to do all the stuff that everyone else was doing and I was sore for a month. Hang in there!!

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