Let's talk about Graft vs. Host and muscles/tendons for a bit. One of the things that I found to be really annoying after my stem cell transplant was the way that GvH would attack my muscles and tendons. It was as if every muscle in my body were trying to put me in a fetal position. That position was the only time I didn't feel I was actively fighting against my muscles. On top of that were the cramps. After I would be in bed for a period of time (usually around 4-5 hours) I would start getting intense cramps in any muscle from my knees downward, most of the time in my feet. The metatarsals and philanges (Regina Philange! lol) would sort of roll under each other because of the muscles that would cramp and I would have to get out of bed and stand up, walk around, and stretch for 10 minutes or so for them to go away. I can't say for sure whether the tendons were put under extra stress from the muscles constantly contracting or if they also were part of the problem but from what I understand it's a little of both. The GvH attacks the tendons as well and they start to tighten and range of motion (ROM) is reduced which causes muscles to tighten (as they too are attacked) and it's just a back and forth downward spiral.
If I were to do too much exercise in one day (walk too much, do too many pushups or squats or rearrange my room, it all depended on how badly the GvH was flaring) I would end up paying for it for up to a week. By that I mean the muscles would get tighter and the tendons would feel like something was going to snap. It was all pretty painful but I guess at this point it was more annoying and worrisome because there was this fear that something might ACTUALLY snap. I feel I should say this though: It is a different feeling entirely than one you get from a good workout. I used to workout 2-3 times a day before I went to South Korea. Bodyweight, gymnastics, crossfit, weightlifting. I loved working out and I know muscle soreness. GvH involvement in the muscles/joints/tendons is something that does NOT feel like a good muscle soreness. It feels very wrong and irritated and tender and inflamed and painful and...like a 10 year old rubber band that you know you can't trust and is gonna snap.
So one can imagine it's hard to stay active with this. You NEED to but the level of intensity is going to be based around what your GvH basically "allows" you to do. But you have to keep active. Your muscles are really important. Your chest muscles are important in helping you to breath. Your leg muscles will help with circulation which will help to prevent or lessen any peripheral neuropathy you have as well as play a vital role in recirculating blood back up to your heart, against gravity (that's no easy task). You need to keep as much of your ROM as possible too. I remember seeing (and can't find a picture so I apologize) of a cadaver of someone that had a shoulder injury that meant limited ROM for the rest of their life and the reduced ROM, unexercised shoulder had what looked like a massive amount of cob webs wrapped about from his pectorals all the way to the back trapezius muscles. This was not the injury but secondary to it caused by immobility and disuse. Just imagine that grey stuff growing inside you. INSTANT motivation @__@
Since I found myself not being able to do much, I got in the habit of just doing...often. I would get up and pace or do pushups or squats or stretch different muscle groups. I would do shoulder shrugs and arm circles and twists and I would make sure I would go on walks as much as possible (also because I love walks so why wouldn't I). I would make sure and rotate my ankles and wrists as much as possible and my neck. It's going to be frustrating too because you are going to use your muscles and they will rebel, but the stretching will help a lot and it will even help with the nighttime cramps.
There are a couple other things I've found to help with the cramps. Stretching yes, but even more than that was eggs. Yea, can you believe it? Here's the thing. You're probably on a lot of antibiotics. You've gone through a transplant so your entire digestive track has sloughed through your colon and had to start repairing itself while ON said antibiotics. They probably won't let you take any probiotics either right? That's a setup for some serious gut permeability and that's where a LOT of autoimmune diseases can creep up. Food particles that should be broken down more or not even absorbed are getting into our lymphatic systems and blood. The way it was described to me was that some of the egg proteins cause autoimmune responses so I figured I would cut 'em out and see what happened. Sure enough my cramping went down dramatically.
Another thing that might help a little bit with cramping are these injinji toe socks. Something about the compression seemed to help a weeee bit with cramping at night.
And I know if you're going through this you're reading what I'm saying and it probably feels impossible. We do all this work and yet STILL we have to watch our bodies wither away. We do all this work and it just makes the cramps WORSE. What's the point right?
Hope. You just have to have hope that one day it will get better. Maybe you have someone in your life that motivates you to keep going. A wife. A son or daughter. Someone that looks in your eyes and loves you. That can make all the difference. They need you. Do it for them. You NEVER know what is coming around the corner. Your life changed in one day when your doctor told you that cancer was eating away at your body right? Who's to say that one day you won't wake up and your life will change again? Do you want to give up and have to start further down the ladder than you would have had you kept fighting?
If you're a Christian, maybe you hang onto those verses like in Romans 8, "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Life is infinitely bigger than we can understand. Our lives touch other people both strange and familiar, near and far. We may never know how, but we can try to make sure it's a good touch, right?
I'm not saying I did the best because I could've done better. There were a lot of weeks where The Deeps would just win out and I would be congratulating myself just for getting out of bed. It's a crazy hand you've been dealt but we get to play the game, right? It's been 4 years since my transplant and my cramps are FINALLY gone. They started back up recently when I had to reduce my immunosuppresant (Cellcept) and increase dexamethasone mouth rinse, but they're not bad. Usually just a switch in position if I get them and I'm good. My muscles are actually allowing me to workout again and get stronger. So hang in there. You never know what is coming around the bend.
"Pain is weakness leaving the body" - Marines?
"In the night my hand was stretched out without weariness;
My soul refused to be comforted."
"You have held my eyelids open;
I am so troubled that I cannot speak."
"Then I said, “It is my grief,
That the right hand of the Most High has changed.”
shall remember the deeds of the LORD;
Surely I will remember Your wonders of old." - bits of Psalm 77
I Need My Girl by The National
This Will Destroy You by War Prayer