10 years but still feeli cant move on - CLL Support

CLL Support

22,532 members38,709 posts

10 years but still feeli cant move on

pendragon profile image
7 Replies

I had Stemcell BMT for CLL in 2013 next year is 10 years but i dont seem to be able to move on with my life, I have several conditions that are not helping with this but I just feel so tired all the time and still having muscle cramps , anyone else out there with similar problems would be great to talk or just get advice.

thanks

Written by
pendragon profile image
pendragon
To view profiles and participate in discussions please or .
7 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi pendragon, -

I read your profile healthunlocked.com/user/pen... , and I have far fewer medical challenges than you.

-

But while it may seem trivial or impossible, I find that volunteering to help other people, in whatever way is available, can distract me from my own problems. You may want to reach out to mailchi.mp/61504125d227/cll... to see if they have a peer to peer support system or any other way you can get involved.

-

Also, as tough as it is to initiate, simple exercise like walking and stretching (as taught to me by a licensed physical therapist- and reinforced with printed instructions/reminders), helps me feel less worse.

-

Len

pendragon profile image
pendragon in reply to lankisterguy

thank you i do try and exercise and as AussieNeil has suggested i will look into the magnesium cream.

Im quite a private person and its taken me along time to get to the even post about how im felling but would hopefully some day be able to help others.

P

AussieNeil profile image
AussieNeilAdministrator

Pendragon, I agree with Len's points.

With respect to exercising, during watch and wait, I personally found that unless I was really struggling with fatigue, just going for a walk would lift the tiredness. I also found that more than usual exercise came with an increased likelihood of a bad cramp the following morning. I found taking magnesium tablets helped, but then my clinical trial nurse recommended a magnesium cream. Rubbing it over the cramping muscle gives relief in a couple of minutes.

Neil

pendragon profile image
pendragon in reply to AussieNeil

Many thanks I will look into the magnesium cream

P

Phil4-13 profile image
Phil4-13 in reply to pendragon

Yes! Yes! To the magnesium cream!A tube next to my bed and one in my purse. I am never without it. Muscle cramps or what they really are, ------"CHARLEY HORSES!" diminish within a minute. I rub it on and am confident of relief coming quickly. 🙂Sandra

pendragon profile image
pendragon

Thank you for the incouraging words.

i find it hard to put into words my experiences and would not want to make anyone else thats just be diagnosed recently feel more afraid and put them off treatment they may need .

obviously im still here so the treatment worked but i guess i just thought i would return to my pre cll self and get on with life but thats not case for me.

I wouldnt know how i could share my journey with others but thankyou again for kind reply

P

CycleWonder profile image
CycleWonder

I drink an electrolyte drink after exercise. The one I use is Nuun - it’s a tablet that dissolves in water. It has 3 grams of carbs and has much less salt than some. I order the ones with no caffeine because I can’t have caffeine after noon.

I find drinking the Nuun is enough to prevent cramps. And it helps hydrate me if I’ve been sweating!

You may also like...

Unmutated been WW 10 years

story: I have unmutated CLL, diagnosed 10 years ago when I was 52. I upturned my life about five...

CLL diagnosed 10 Years ago!

Does anyone have a WBC over 200,000 and is still on w & w with no other symptoms...oh i did need 1...

Still testing positive after 10 weeks

is still covid positive but fortunately the sepsis and pneumonia seem to be over. My big problem:...

10 Years in CLL: Top Advances From 2012-2022

increased life expectancy for many individuals with a CLL diagnosis. \\"In the past, the 'chronic'...

Still uMRD 1 year later after fixed duration A&O combo

medication of any kind for a year. (with the exception of Acyclovir.) It’s a great feeling.