Delayed Crash After Surgery

[Misfit Toy]

I wanted to come on here and write this because I just wanted to document it for other people who might go through surgery in the future. I had surgery on January 13th and the first month after surgery wasn't too bad. The pain in my wrist was bad, but I had energy.

I was able to cook even with one hand and do a lot of things. But into the second month after surgery, my energy just collapsed. Talk about a delayed reaction. PEM at its finest.

I'm wondering if it has anything to do with physical therapy that I have twice a week and it's two hour sessions each time, along with the fact that I just have this crazy illness. Well, I know that's it for sure.

Wish I could snap myself out of this.

I'm so tired that I don't really feel like talking that much and I can't muster energy for a yawn!

On the way home from my two hour session of physical therapy all I could think is, God, I feel awful. I feel brain-dead and it's just all I can do to get through the day.

My memory is much worse...could be anesthesia. I was out and under for 3 hours.

The woman that I hired to come and help me out with laundry, making my bed, etc. I have decided to keep her on just because I'm that beat. Usually, I have energy on my worst days to do laundry. It's not happening now. Not at all.

I know that this too shall pass and I'm trying to just cave in and rest and do whatever it is that my body needs right now.

I just wanted to let someone know in the future that if they go in for surgery that it's not uncommon I guess to go through this. Other people in PT who are well have energy, but for us it's twice as hard. Make that ten times as hard!

 

[alex3619]

I can relate. I spent two months in hospital after surgery a little over two years ago. While totally resting in a hospital bed I was fine. I rapidly deteriorated after I got home. I have only a small percentage of the energy available for even simple things that I had three years ago. Everything has slowed down. I have yet to recover. My break is also not healing well ... not the bone, but the soft tissue. Its still bruised, swollen and inflamed, two years later. ME patients may take much longer than most to recover, and it may have unanticipated consequences.

 

[Misfit Toy]

@alex3619 -I'm so sorry. That sucks! Oh, gosh. I hope you recover! What are we supposed to do, not have necessary surgery? Phooey.

I'm also sorry your injury is not doing well. I get that also. Because of all the inflammation in my body, my fingers are severely inflamed on the hand that was operated on and they want to put me in a special splint to make my wrist bend further. No matter how much I work on the wrist, it's not bending right. Some days I go in there and they can see the inflammation and other days it's not there. It all ties in to the Sjogren's syndrome.

I know what you're talking about. When I'm at physical therapy and all these people are in there with all these different types of surgeries including pins that I'm seeing, all I can think is; how do you sleep at night and how are you so full of zest? I am totally exhausted.

I told my friend yesterday to not rely on me for a few weeks, months, or however long to get together. I am drained.

And,,,if I sleep well and have "some" energy, I know it's fake energy. It's adrenaline or something. It's not real.

 

[alex3619]

We have a broken aerobic energy system, the system that underlies endurance in any activity. After rest our muscles can be loaded with energy, if we had at least OK rest and nutrition and are not at the very severe end. That is two minutes worth of energy on average. So if we are careful we can persist with some energy for many hours., by being very careful not to use this energy. Once we start doing stuff .... its gone. We do not get it back till we have more rest. Of course rest only restores that stored energy, which is always limited.

This can be different for very mild patients as their aerobic energy system is not as broken, and so they can recharge faster and last longer at activity. There is still a limit though.

Think of it like this. We are like a jury rigged car petroleum-electric engine. The engine has only one cylinder firing (three for mild patients), but the car battery has also been replaced by a tiny little rechargeable battery suitable for a small appliance. This is what we have to run on. The motor can also only recharge it slowly, and only while at rest as actually driving will drain too much energy. If we have to rely on battery power, then we are exhausted in minutes - the car stops. We also cannot plug into a wall socket for power (actually we can, nutrition has an impact) but the battery is so tiny it wont store much charge. This is a flawed analogy, but its the best I can come up with on short notice.

 

[jeff_w]

Thanks for posting this, it's a good reminder for all of us.

The woman that I hired to come and help me out with laundry, making my bed, etc. I have decided to keep her on just because I'm that beat. Usually, I have energy on my worst days to do laundry. It's not happening now. Not at all.

Sounds very wise to keep her on.

On the way home from my two hour session of physical therapy all I could think is, God, I feel awful. I feel brain-dead and it's just all I can do to get through the day.

I wonder if you could do less physical therapy. It seems there might be an optimal amount that is less than a 2 hour session. Seriously, your illness needs to be taken into account.

 

[Misfit Toy]

@jeff_w -I will ask. Good point. They don't get chronic illness at this place. Not at all.

There is also a part of me that really wants to get this wrist working again. Plus, when I don't do it at home, which is often, I miss physical therapy because Physical Therapy makes me do it where as at home I'm more inclined to do zip. I don't push myself at home like they push me. As soon as it hurts at home I stop it, where as they keep pushing me even if it hurts.

But I may tell them, I can't do 2 hours.

 

[whodathunkit]

@Misfit Toy: Sorry to hear you're having such a bad time.

Probably you know this, but in case you don't: especially if you had nitrous oxide as part of your anesthesia for surgery, that can use up most or all of your B12 reserves, causing a lot of problems.

 

[Misfit Toy]

@whodathunkit i'm not surprised. The problem with that is is that whenever I take B 12 under my tongue I become so jazzed up that I can't sleep. I would think I'm probably lacking in all the B vitamins right now.

 

[Misfit Toy]

I have to mention this, another thing I like about physical therapy is that I get to talk to other people. It's like a schedule that I don't normally have and I meet other people and the socializing aspect I like. Sad...isn't it?!

I love my physical therapist. She's 24 and so cute. On St. Patty's day everybody wore green and it was like one big party and I enjoyed it!

Totally pathetic!

 

[whodathunkit]

I have to mention this, another thing I like about physical therapy is that I get to talk to other people. It's like a schedule that I don't normally have and I meet other people and the socializing aspect I like. Sad...isn't it?!

I love my physical therapist. She's 24 and so cute. On St. Patty's day everybody wore green and it was like one big party and I enjoyed it!

Totally pathetic!

Not pathetic. I can relate.

 

[catly]

I also crashed after partial thyroidectomy surgery in 2013. I actually felt pretty good the first few weeks after surgery and probably did too much too soon then I crashed to the point where I was scheduled to go back and have the rest of my thyroid out (turned out to be papillary cancer) but I was so fearful of making my ME worse I canceled the surgery.

Looks like I'm going to have to go through with that surgery sooner rather than later because in the 1.5 years since the surgery my Hashimotos has destroyed my remaining thyroid to the point that they can't monitor it for nodules anymore.

I'm so not wanting to do this!

@whodathunkit, thanks for the tidbit about B12 and anesthesia, turns out the latest antibodies that I seem to be producing are anti-parietal and anti-intrinsic factor which are leading cause of pernicious anemia, although I've never been anemic and my B12 levels are always sky high. I still take large amounts of B12 sublingal--which is probably a good thing for me.

@Misfit Toy hope you feel better soon!

 

[Misfit Toy]

@catly -again, what a nightmare and I'm so sorry. We have these other situations that we have to tend to, that if we don't tend to we will get sicker, but if we do tend to them we also get sick. It's a no-win situation. When the thyroid is removed at least the cancer will be gone.

That's another thing I have to do. I have three nodules on my thyroid that need to be biopsied. I have put it off due to the surgery. I couldn't deal with one more thing. Two of my aunts from my father's side of the family have Graves' disease and one had thyroid cancer. I could be next, but try not to think about it. My doctor doubts that I have cancer, but my thyroid is absolutely huge.

My Hashimotos is okay right now.

So, yes, I have to do something about that as well but not right now!

Nope!!

 

[catly]

@Misfit Toy if it helps the fine needle aspirations they do to biopsy the nodules are really easy, they are usually done right in the endocrinologist office and only take 5 minutes. I've had it done twice and it was really painless and quick and no after effect--for me anyway.

 

[Misfit Toy]

@catly -i'm glad you told me that. One of the reasons I haven't wanted to get it done is because I just can't deal with anymore pain. Also, I'm not sure if I want to know the outcome as of right now. Then again, there is never a good time.

 

[Gingergrrl]

@Misfit Toy I'm sorry to hear that you are having such a hard time right now and I agree with everyone who said that two hours is too long for each PT session. Hopefully they will understand and allow you to shorten them. I am sending you healing thoughts and wishes from the other side of the country...

 

[Misfit Toy]

I'm slightly nervous to ask for less time. I've spoken about my other conditions and they are nice, but don't completely get it. : /

Thank you, @Gingergrrl!

 

[ahmo]

@Misfit Toy So sorry to hear of your crash. Rooting for your recovery from across the planet.

 

[Misfit Toy]

Thank you, @ahmo!

 

[xks201]

I also crashed after partial thyroidectomy surgery in 2013. I actually felt pretty good the first few weeks after surgery and probably did too much too soon then I crashed to the point where I was scheduled to go back and have the rest of my thyroid out (turned out to be papillary cancer) but I was so fearful of making my ME worse I canceled the surgery.

Looks like I'm going to have to go through with that surgery sooner rather than later because in the 1.5 years since the surgery my Hashimotos has destroyed my remaining thyroid to the point that they can't monitor it for nodules anymore.

I'm so not wanting to do this!

@whodathunkit, thanks for the tidbit about B12 and anesthesia, turns out the latest antibodies that I seem to be producing are anti-parietal and anti-intrinsic factor which are leading cause of pernicious anemia, although I've never been anemic and my B12 levels are always sky high. I still take large amounts of B12 sublingal--which is probably a good thing for me.

@Misfit Toy hope you feel better soon!

What kind of sublingual b12 are you taking?

 

[whodathunkit]

@Misfit Toy and @catly: rooting for you, too, along with @ahmo. Sorry to hear of all these troubles.