D
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I wanted to hold off writing this until after I had a handle on the outcome, and knew that there was a resolution. For others thinking of a pilgrimage on Camino who are dealing with this condition, I thought this might give some insight and encouragement.
I had heard of Grave’s Disease but did not really understand what it was, or what it does to those affected. Now I know.
Before my diagnosis, I had endured over a year with aggravating symptoms that made life a bit challenging. Not severely debilitating but affecting my quality of life. The very first symptom I dealt with early on was something referred to as “Restless Body Syndrome”. It is the same etiology as “Restless Leg Syndrome”, but it also affects the entire upper body including arms and abdomen.
For me, this syndrome became most aggressive in the later evening and during bedtime. The closest I can come to describing the feeling is to imagine as if your muscles were filled with the sound of nails screeching across a blackboard; filling up with an unbearable congestive pressure full of that creepy sound which can only be relieved by contracting your muscles hard for a few seconds.
That will provide some relief, for about 5 seconds. And then you start feeling it build up all over again. Over and over and over and……
The worst time was at bedtime. It got to the point where I hated the thought of going to bed, no matter how tired I was. I knew that I would be faced with having to deal with this. Most often the only solution was to get out of bed and stay up until 5:00 am or so. As with a lot of those dealing with this issue, it seems to dissipate in the early morning hours. So, I would get back to bed at 5:00 and sleep until 9:00 when I had to drag myself out of bed to carry on for the day.
All the testing and bloodwork showed no specific reason for this syndrome; it is an amorphous diagnosis with no clear treatment. There was not a treatment modality that I didn’t try. From large doses of magnesium and iron, to various prescription drugs, to various exercise modalities…. I spent a lot of time tracking down online info and visiting my medical provider. Medications to encourage sleep, whenever sleep depravation became an issue, would be taken sporadically; I hated those meds as they would leave me in a fog in the morning. Plus, they are not a long term solution.
A few weeks prior to last year’s Camino with Caleb, things seemed to resolve quite a bit. I was prescribed some meds to take, just in case, and I felt good to go. The first day out of SJPdP and into Roncesvalles went smoothly, outside of my feet being a bit sore. That night in the alburgue, I did feel a bit ‘restless’ and quietly padded my way to the restroom a couple of times to stretch my legs. No real biggie.
The next night in Larrosoana, though, all heck broke lose. We stayed at Casa Tau in a private room, thank goodness. I was so restless and fidgety that night that I only slept for about 1.5 hours. When we were getting ready to leave for Pamplona, Caleb pulled me aside an asked if I was alright. He was a bit concerned that I was having serious problem and might need medical attention. When I explained to him what was happening, he relaxed. He even thought it a bit like a Camino challenge for me, given that I was dealing with this in addition to the inguinal hernia.
So, I dealt with this all the way to Burgos and although the bedtime was unpleasant, it really didn’t affect my Camino experience other than maybe not having as much energy during the day as I normally would.
Fast forward from last September to this January. I suddenly began feeling hard, but sporadic, heart palpitations accompanied by temporary feelings of an arrythmia. No real shortness of breath, chest pains, etc. A checkup with my provider showed no real ECG abnormalities.
But my provider did order a complete blood panel, which included a thyroid assessment.
That night, the provider called me. “Dave”, she said kind of excited, “I know what is causing your restless body symptoms and palpitations.”
“OK, Carol, what have you got?”
“Your thyroid levels are through the roof. You have a severe case of hyperthyroidism”.
She had already scheduled me to consult with an endocrinologist the next morning because there was concern that I might be close to poisoning from the hormone levels. The short version: after being on the proper meds since January, my levels are near normal. The restless body and palpitation issue has disappeared, and I am pretty much back to normal. With one exception.
One of the medications interacts with my heart’s natural pacemaker. It doesn’t hurt anything, but it does affect my pulse rate during my normal workouts. Despite the fact that I am working my cardiovascular system to the same peak output levels as before the medications, I cannot get my heartrate to reflect that work output. Where my peak heartrate used to be around 162 to 174 beats per minute, now that same effort produces 136 bpm. I have even tried to push myself to beyond my VO2 / max aerobic capacity, but can only get to 146 bpm.
The cardiologist consultant isn’t concerned; he says that’s normal and not to be concerned. So, I’m not. But it is darned confusing in having to adjust to new parameters for my workouts and how to correlate that with what I have been used to.
Anyway, maybe this all will help someone else experiencing something similar. I know that when Caleb and I get back on Camino this September/October, he won’t have to put up with hyper-twitchy dad.
Right now, I’m heading to the treadmill for a couple of hours. It’s wet outside, so I’m staying inside today.
I had heard of Grave’s Disease but did not really understand what it was, or what it does to those affected. Now I know.
Before my diagnosis, I had endured over a year with aggravating symptoms that made life a bit challenging. Not severely debilitating but affecting my quality of life. The very first symptom I dealt with early on was something referred to as “Restless Body Syndrome”. It is the same etiology as “Restless Leg Syndrome”, but it also affects the entire upper body including arms and abdomen.
For me, this syndrome became most aggressive in the later evening and during bedtime. The closest I can come to describing the feeling is to imagine as if your muscles were filled with the sound of nails screeching across a blackboard; filling up with an unbearable congestive pressure full of that creepy sound which can only be relieved by contracting your muscles hard for a few seconds.
That will provide some relief, for about 5 seconds. And then you start feeling it build up all over again. Over and over and over and……
The worst time was at bedtime. It got to the point where I hated the thought of going to bed, no matter how tired I was. I knew that I would be faced with having to deal with this. Most often the only solution was to get out of bed and stay up until 5:00 am or so. As with a lot of those dealing with this issue, it seems to dissipate in the early morning hours. So, I would get back to bed at 5:00 and sleep until 9:00 when I had to drag myself out of bed to carry on for the day.
All the testing and bloodwork showed no specific reason for this syndrome; it is an amorphous diagnosis with no clear treatment. There was not a treatment modality that I didn’t try. From large doses of magnesium and iron, to various prescription drugs, to various exercise modalities…. I spent a lot of time tracking down online info and visiting my medical provider. Medications to encourage sleep, whenever sleep depravation became an issue, would be taken sporadically; I hated those meds as they would leave me in a fog in the morning. Plus, they are not a long term solution.
A few weeks prior to last year’s Camino with Caleb, things seemed to resolve quite a bit. I was prescribed some meds to take, just in case, and I felt good to go. The first day out of SJPdP and into Roncesvalles went smoothly, outside of my feet being a bit sore. That night in the alburgue, I did feel a bit ‘restless’ and quietly padded my way to the restroom a couple of times to stretch my legs. No real biggie.
The next night in Larrosoana, though, all heck broke lose. We stayed at Casa Tau in a private room, thank goodness. I was so restless and fidgety that night that I only slept for about 1.5 hours. When we were getting ready to leave for Pamplona, Caleb pulled me aside an asked if I was alright. He was a bit concerned that I was having serious problem and might need medical attention. When I explained to him what was happening, he relaxed. He even thought it a bit like a Camino challenge for me, given that I was dealing with this in addition to the inguinal hernia.
So, I dealt with this all the way to Burgos and although the bedtime was unpleasant, it really didn’t affect my Camino experience other than maybe not having as much energy during the day as I normally would.
Fast forward from last September to this January. I suddenly began feeling hard, but sporadic, heart palpitations accompanied by temporary feelings of an arrythmia. No real shortness of breath, chest pains, etc. A checkup with my provider showed no real ECG abnormalities.
But my provider did order a complete blood panel, which included a thyroid assessment.
That night, the provider called me. “Dave”, she said kind of excited, “I know what is causing your restless body symptoms and palpitations.”
“OK, Carol, what have you got?”
“Your thyroid levels are through the roof. You have a severe case of hyperthyroidism”.
She had already scheduled me to consult with an endocrinologist the next morning because there was concern that I might be close to poisoning from the hormone levels. The short version: after being on the proper meds since January, my levels are near normal. The restless body and palpitation issue has disappeared, and I am pretty much back to normal. With one exception.
One of the medications interacts with my heart’s natural pacemaker. It doesn’t hurt anything, but it does affect my pulse rate during my normal workouts. Despite the fact that I am working my cardiovascular system to the same peak output levels as before the medications, I cannot get my heartrate to reflect that work output. Where my peak heartrate used to be around 162 to 174 beats per minute, now that same effort produces 136 bpm. I have even tried to push myself to beyond my VO2 / max aerobic capacity, but can only get to 146 bpm.
The cardiologist consultant isn’t concerned; he says that’s normal and not to be concerned. So, I’m not. But it is darned confusing in having to adjust to new parameters for my workouts and how to correlate that with what I have been used to.
Anyway, maybe this all will help someone else experiencing something similar. I know that when Caleb and I get back on Camino this September/October, he won’t have to put up with hyper-twitchy dad.
Right now, I’m heading to the treadmill for a couple of hours. It’s wet outside, so I’m staying inside today.
Don't worry, the workout routine has been part of my life, (with pauses here and there for various complications with life 
