So here we are again with more pain. Aches and cramps. Exhaustion. Fatigue.
Sounds bad, right?
So let's back up here. Back in December of 2016, I had surgery on my leg knee because it used to dislocated (if you noticed this title is pretty dang close to that series back then). After the surgery my quad muscle atrophied and it took me a long time to get that muscle back. It was a good year before I was really close to normal again.
It was also about that time that I ended up with cramps in my outer quad muscle. They would come and go and they were pretty awful. Then at other times my leg would just ache. It was pretty awful. I would rub my leg but the ache just wouldn't go away. A year and a half after my surgery I talked to my regular doctor about it and she checked my muscle enzymes. They were a little elevated but nothing concerning.
This last June (two and a half years since my surgery) I bought up that my leg was still hurting to my doctor again so she said she would check my muscle enzymes again among other blood tests then we could figure out where to go from there because my leg shouldn't still be bothering me.
I got that call back and I ended up with three elevated numbers. First my cholesterol, but that's always high so it is what it is. My liver enzymes were elevated and my muscle enzymes were in the 800s, much higher than they should be. First I needed to get an ultrasound to make sure everything was fine with my liver - spoiler alert, my liver along with all my other organs were normal. My doctor also wanted me to see a rheumatologist about my leg to see if I had something causing the pain.
I wasn't able to get into the rheumatologist until August but got my liver checked out immediately. A week before my rheumatologist appointment I had my liver enzymes checked again to see where that went. My liver enzymes that spiked which they were sure was now associated with my muscle enzymes being high so we wanted to recheck that.
But first I had my rheumatologist appointment to go to. I was really nervous about that appointment because I had no idea what was going to happen. Rob went with me and it went well. The doctor had some thoughts about what it could be and we started with a plan on where to go. He ordered even more blood work on top of the muscle enzymes we were already rechecking then we would either do an MRI or actually do a test to check my nerve and muscle functions in my leg. I felt confident heading forward because we were trying to get it figured out. We were going to figure out how to make me feel better.
This was much more than just about my leg. Yes the leg pain was what I was feeling every day but really it was about me. I felt awful all the time. I was rundown - and not just a mom of three rundown. I was struggling. Just standing up from the couch to fill up a water bottle was exhausting and sometimes felt like more than I could do. I felt awful. And going through all this about making me feel so much better.
So I went back in to get my muscle enzymes checked - the rest of the bloodwork had to wait another day - and the next day I got a call from the nurse that they needed me to come in right away to get more labs done. My regular doctor had talked to my rheumatologist and they had made a plan. My muscle enzymes which if you remember had been in the 800s (and already really high) in June was just under 5000 now. And with that gets that high, there is a chance it could start effecting my kidneys. So I had to get the bloodwork from my rheumatologist and my kidney levels checked. If they were elevated then I had to be admitted to the hospital in order to make sure I didn't have any damage.
Along with that I was going to have an MRI on my leg because they were thinking I had basically a pocket of inflammation in my muscle which was breaking down my muscle around that and causing the pain and the elevated levels. And all this was going to happen quickly. We had to stop my levels from increasing and hopefully keep my kidneys healthy and me out of the hospital.
This leg pain was quickly becoming really serious and much much more than just some leg aches.
I got my call to get my MRI scheduled really quickly so that was heading in the right direction so how I was just waiting to hear about my kidneys. What made it all more upsetting was that if my kidneys were struggling then I would have to be admitted to the hospital immediately and Connor's first day of school ever (he's started Pre-K this year) was the next day and I would have been heartbroken to have missed that. I waited anxiously for the results and finally the call came in the afternoon and my kidneys levels were normal. So far I was doing okay.
So now I had to get my MRI which I would have the results back the next day then have my labs rechecked the following Monday. That for now was at least a huge weight lifted off my shoulders. I would miss picking up Addie from her first full day of school but she promised me that she would tell me all about it then told me that I had lots of other day to pick her up. Although she didn't know how serious this all was, this was about my health and she understood that I had an appointment to help me feel better.
So I had my MRI and found out that there was indeed inflammation in my leg, but not just my left where my ache was happening but also in my right leg. So now it was time to figure out what that all meant and how they could go about treating this correctly which meant I needed to get a muscle biopsy.
We got stalled out waiting to meet with the surgeon who would be doing this but after meeting with him, it was a quick turn out around time to actually get it done. It would be a quick procedure but they had to clamp and take a chunk of muscle so I would have been completely put out but then it would be sore. I was going to be sore but with disposal stitches I would go back to normal life right away and that was that.
Turns out, I'm done trusting doctors when they tell me I'll be back to normal quickly. I was told 6 months to full recovery after my knee surgery and I should be fine within a couple days after the biopsy. Yup, that's not true at all. I was in some serious pain. Maybe if I was a housewife without the kids and the walking and the functioning then I would be fine. But I had some serious leg pain. I ended up taking two weeks off exercise and had to walk real slow. It was awful and painful and the recovery took much longer than I expected. But I made it through and now I have a nice big scar to prove it.
We waited almost a month - there was a lot of tests - before we got the results. Turns out my muscle is perfectly fine. They had originally thought I had a muscle disease, but the results were completely normal. The only thing that showed up was a possible missing enzyme that shows up in 2% of the population and really means nothing. It's a genetic thing and not the cause behind any of this. With my results normal, I was now referred to a neurologist who hopefully will be able to help find the cause.
Again we waited a very long time for the appointment and all I knew was that I was seeing a neuromuscular specialist and getting an EMG. Beyond that I had no idea what to expect. I'll leave out all the details but we were with him for a long time and I liked him a lot actually. He was excited about my mystery of a case. Because it definitely was a mystery. I was strong. I had cramps and high CK levels but everything that they thought it was up to this point wasn't it. After talking with him for a long time, he determined that it was most likely an injury to my nerve when I got a nerve block during my surgery. And there was nothing we could do about it.
But I still had an EMG to get through. My nerves were shocked and I felt very twitchy after, but everything was showing up good. So the nerve damage I had was mild. On top of that they stuck a needle into my muscles to check my muscle function - it was pretty awful. Other than a couple small things he saw, everything was normal.
In addition to the leg ache and occasional cramps, my leg in the same area was a slightly numb to the touch. It was very odd to have him poke me with a safety pin and for it to be duller on one side than the other. I could feel exactly where the numbness started. It turns out that is completely separate. During pregnancy, Emma sat in a way that put pressure on my nerve and caused numbness in my leg. I guess I should count it a blessing that it is on the place that aches so maybe I don't feel it quite as much as I would if it wasn't a little numb.
So here's we were, there is nothing I can do about my leg. It will feel the ache and cramps for the rest of my life. And all I can do it figure out how to cope when it's really bad (because it makes me really fatigued, drained and sluggish). However my CK (muscle enzymes) levels are still slightly elevated, so now we are on the road to try to figure out what's going on with those numbers and see if we can get those back to normal because that might help with me feeling better all the time. My doctor told me that anytime I want to say I'm done then I'm done. And I will say that I just want to figure out if we can get my CK levels down because I don't want to leave something that could cause long term health problems but otherwise I'm ready to move on (as best as I can).
So have I dealt with this all yet? No - I did cry about it the other day because I was so tired and just didn't have the energy for anything. But I will get past the sad and the anger I'm currently at, and get to the acceptance which is where I usually start working on ways to try to make it better and deal.
But there you have it. That's my big secret I have been holding on to. My blog writing has been all over the place because sometimes I'm just too tired and I have to drop something. I lack energy often to do much so I don't have anything to write about. There are many days that I'm doing everything I can to take care of my kids (top priority) and work with my shop (second on the list). But other times I feel normal and fine. It's a very frustrating road and like I said I have a long road before I think I can really deal and figure out how to best deal with this, but baby steps.
So I had my MRI and found out that there was indeed inflammation in my leg, but not just my left where my ache was happening but also in my right leg. So now it was time to figure out what that all meant and how they could go about treating this correctly which meant I needed to get a muscle biopsy.
We got stalled out waiting to meet with the surgeon who would be doing this but after meeting with him, it was a quick turn out around time to actually get it done. It would be a quick procedure but they had to clamp and take a chunk of muscle so I would have been completely put out but then it would be sore. I was going to be sore but with disposal stitches I would go back to normal life right away and that was that.
Turns out, I'm done trusting doctors when they tell me I'll be back to normal quickly. I was told 6 months to full recovery after my knee surgery and I should be fine within a couple days after the biopsy. Yup, that's not true at all. I was in some serious pain. Maybe if I was a housewife without the kids and the walking and the functioning then I would be fine. But I had some serious leg pain. I ended up taking two weeks off exercise and had to walk real slow. It was awful and painful and the recovery took much longer than I expected. But I made it through and now I have a nice big scar to prove it.
We waited almost a month - there was a lot of tests - before we got the results. Turns out my muscle is perfectly fine. They had originally thought I had a muscle disease, but the results were completely normal. The only thing that showed up was a possible missing enzyme that shows up in 2% of the population and really means nothing. It's a genetic thing and not the cause behind any of this. With my results normal, I was now referred to a neurologist who hopefully will be able to help find the cause.
Again we waited a very long time for the appointment and all I knew was that I was seeing a neuromuscular specialist and getting an EMG. Beyond that I had no idea what to expect. I'll leave out all the details but we were with him for a long time and I liked him a lot actually. He was excited about my mystery of a case. Because it definitely was a mystery. I was strong. I had cramps and high CK levels but everything that they thought it was up to this point wasn't it. After talking with him for a long time, he determined that it was most likely an injury to my nerve when I got a nerve block during my surgery. And there was nothing we could do about it.
But I still had an EMG to get through. My nerves were shocked and I felt very twitchy after, but everything was showing up good. So the nerve damage I had was mild. On top of that they stuck a needle into my muscles to check my muscle function - it was pretty awful. Other than a couple small things he saw, everything was normal.
In addition to the leg ache and occasional cramps, my leg in the same area was a slightly numb to the touch. It was very odd to have him poke me with a safety pin and for it to be duller on one side than the other. I could feel exactly where the numbness started. It turns out that is completely separate. During pregnancy, Emma sat in a way that put pressure on my nerve and caused numbness in my leg. I guess I should count it a blessing that it is on the place that aches so maybe I don't feel it quite as much as I would if it wasn't a little numb.
So here's we were, there is nothing I can do about my leg. It will feel the ache and cramps for the rest of my life. And all I can do it figure out how to cope when it's really bad (because it makes me really fatigued, drained and sluggish). However my CK (muscle enzymes) levels are still slightly elevated, so now we are on the road to try to figure out what's going on with those numbers and see if we can get those back to normal because that might help with me feeling better all the time. My doctor told me that anytime I want to say I'm done then I'm done. And I will say that I just want to figure out if we can get my CK levels down because I don't want to leave something that could cause long term health problems but otherwise I'm ready to move on (as best as I can).
So have I dealt with this all yet? No - I did cry about it the other day because I was so tired and just didn't have the energy for anything. But I will get past the sad and the anger I'm currently at, and get to the acceptance which is where I usually start working on ways to try to make it better and deal.
But there you have it. That's my big secret I have been holding on to. My blog writing has been all over the place because sometimes I'm just too tired and I have to drop something. I lack energy often to do much so I don't have anything to write about. There are many days that I'm doing everything I can to take care of my kids (top priority) and work with my shop (second on the list). But other times I feel normal and fine. It's a very frustrating road and like I said I have a long road before I think I can really deal and figure out how to best deal with this, but baby steps.
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