A donation to the forum removes ads for you, and supports Ivar in his work running it

Camino Forum Store

Advertisement

Great Outcome To an Irritating Medical Issue

davebugg

DustOff: "When I have your wounded."
Donating Member
Camino(s) past & future
Camino Frances...
Sept. 2017: SJPdP to Burgos
Sept./Oct. 2018: SJPdP to Santiago de Compostela
#1
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.
 

Advertisment

Camino Chris

Veteran Member
Donating Member
Camino(s) past & future
Camino Frances (2015); Camino Norte/Primitivo (2016); Camino Frances (2017); Le Puy (June 2018)
#2
Dave, thanks for sharing your story. So glad you were finally diagnosed after such a long process and your sleep is back to normal.
It's raining here today, too, but 20 minutes on the treadmill and a heart rate up to 120 is all I ever care to accomplish....Wow, 2 hours and 160+ bpm sounds like torture to me. I don't think it will hurt you to "lighten up" a little with your regimen! On the other hand for me, no wonder I am so slow on those Camino uphills. ;)
 

davebugg

DustOff: "When I have your wounded."
Donating Member
Camino(s) past & future
Camino Frances...
Sept. 2017: SJPdP to Burgos
Sept./Oct. 2018: SJPdP to Santiago de Compostela
#3
Dave, thanks for sharing your story. So glad you were finally diagnosed after such a long process and your sleep is back to normal.
It's raining here today, too, but 20 minutes on the treadmill and a heart rate up to 120 is all I ever care to accomplish....Wow, 2 hours and 160+ bpm sounds like torture to me. I don't think it will hurt you to "lighten up" a little with your regimen! On the other hand for me, no wonder I am so slow on those Camino uphills. ;)
Thanks, Chris :) Don't worry, the workout routine has been part of my life, (with pauses here and there for various complications with life :) ), since Jr. High School. It isn't just for Camino, and I do enjoy it... errr, somewhat... well, it is gratifying when I'm done.
 

Camino Chris

Veteran Member
Donating Member
Camino(s) past & future
Camino Frances (2015); Camino Norte/Primitivo (2016); Camino Frances (2017); Le Puy (June 2018)
#4
Yes, I figured this type of workout routine was a long-held lifestyle for you, not just for Camino training. :)
 

nycwalking

Veteran Member
Camino(s) past & future
CF: (2001, 2002, 2004, 2014). Hospitalera: 2002, Ponferrada. 2004, Rabanal del Camino.
#5
Wow Dave;

So happy your medical problem has been diagnosed.

You truly deserve a buen camino with Caleb.
 

Advertisment

SabineP

Veteran Member
Donating Member
Camino(s) past & future
some and then more. see my signature.
#6
@davebugg : so good to hear you have now a good diagnosis!
I do sympathise.I have a young female friend with Graves and she was going through a hard time.

Ultreïa!!
 
Last edited:

Anamiri

Active Member
Camino(s) past & future
Camino Frances
#7
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.
Im glad you've resolved this, especially before your Camino, I have a friend with 'restless legs' and I know how difficult it is for her. Now your Camino will be much more enjoyable. Truly a Buen Camino
 

Anniesantiago

Veteran Member
Donating Member
Camino(s) past & future
Nearly every year since 2006, often walking more than one route. 2018 will be Camino #14.
#8
So happy you’re feeling better!
 

martin1ws

Active Member
Camino(s) past & future
From Somport Jul-Sep 2018
#9
...
All the testing and bloodwork showed no specific reason for this syndrome; it is an amorphous diagnosis with no clear treatment.
...
...
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.”
...
Was the blood-diagnosis at the beginning not complete enough to diagnose the higher thyroid levels?
Or did this develop later on?

It is great that you have a diagnosis and a proper treatment now.
Buen Camino!
 

Ekelund

Active Member
Donating Member
Camino(s) past & future
The Camino Frances 2005
The Portugese Camino 2014
The Camino Ingles Easter 2015
The Camino Ingles April 2016
The Camino del Norte/The Primitivo 2016
#10
Thank you for sharing your story, I'm glad you were diagnosed and received proper treatment. Now and then I experience restless legs but I think it is due to lack of magnesium and too hard exercise. And it is truly a pain!
All the best to you and buen Camino.
 

davebugg

DustOff: "When I have your wounded."
Donating Member
Camino(s) past & future
Camino Frances...
Sept. 2017: SJPdP to Burgos
Sept./Oct. 2018: SJPdP to Santiago de Compostela
#11
Was the blood-diagnosis at the beginning not complete enough to diagnose the higher thyroid levels?
Or did this develop later on?

It is great that you have a diagnosis and a proper treatment now.
Buen Camino!
The normal blood panels focus on issues of iron level measurements like hemoglobin, white and red cell counts, platelet ratios, liver enzymes, etc. Thyroid testing is a lot more expensive and is an add-on that the provider requests because the usual default is that most people have normal functioning thyroids. So thyroid testing is usually reserved if the provider is trying to rule out things when trying to come up with a diagnosis for specific complaints. Additionally, when a thyroid test is done, a separate test, which is really expensive is done at the same time; it is done to help with a differential diagnosis for the why of the thyroid issue.

For hyperthyroidism, there are two basic causes: an insult to the thyroid due to an infection or injury, or an autoimmune disease which attacks and destroys the cells which mediate the thyroid hormone levels. Grave's Disease, which I now know I have, is the autoimmune disease cause.

Restless Body Syndrome is not immediately linked as a significant symptom for hyperthyroidism. It has such a broad and amorphous multi-causation, that there is a lot of taking stabs into the dark to help each patient come to a reason for the condition. In quite a few patients, it is never linked to a specific cause.

It was only after the onset of palpitations and arrhythmia, and a weird spike in my normal blood pressure, that triggered my provider to rule out thyroid issues. This is one of the reasons that the practice of medicine is almost as much of an art, as it is a science :).
 
Last edited:

davebugg

DustOff: "When I have your wounded."
Donating Member
Camino(s) past & future
Camino Frances...
Sept. 2017: SJPdP to Burgos
Sept./Oct. 2018: SJPdP to Santiago de Compostela
#12
Thank you all for your well wishes; it is great having a Camino and Forum family :)

I had a bit of a difficult time deciding whether or not to do the OP. I know that I have reported on injury and medical related stuff before, and I want to avoid coming across as needy or as some kind of physical wreck.

I guess getting into ones senior years can mean that the wear and tear of a lifetime begin to show up. The last few years have been really weird and atypical as several of these medical thingies have popped up. It is both irritating and unnerving at the same time.

Posting seems to help clarify these things. It requires that I focus on how truly fortunate I am to be able to recover from a lot of these medical issues and carry on, when there are so many others who are truly hurting and having to deal with a far more permanent incapacitation or limitation.

Again, thanks for all of the encouragement and, yes, affection I feel from you folks.
 

Robo

Veteran Member
Donating Member
Camino(s) past & future
CF SJPdP to SdC
(May 2015)
Alone.
------------------------------
CF Sarria to SdC
(May 2016)
with my wife Pat.
------------------------------
CF SJPDP-SdC
(Apr/May 2018)
together again :-)
#13
Glad to hear all is well Dave.
Pat also has the condition but very mild in comparison. 6 months of meds fixed her up.
 

Suzanne S.

Active Member
Donating Member
Camino(s) past & future
(2015) May--Camino Frances, SJPdP to Santiago; (2017) May--Caminho Portuguese, Coimbra to Santiago
#16
I appreciate your story and your willingness to share it. I'd heard of Grave's disease but never understood it. So, thank you.

I'm really happy you've discovered the " cause" and are experiencing a good recovery. Buen Camino, @davebugg !!!
 

davebugg

DustOff: "When I have your wounded."
Donating Member
Camino(s) past & future
Camino Frances...
Sept. 2017: SJPdP to Burgos
Sept./Oct. 2018: SJPdP to Santiago de Compostela
#18

trecile

Veteran Member
Donating Member
Camino(s) past & future
Aug - Sept (2016) SJPDP - Finisterre
July - Aug (2017) SJPDP - Muxia - Finisterre
#19
Thanks for sharing. You will probably help someone (possibly a "lurker") get the correct diagnosis. And I'm glad that you have found the correct diagnosis.
 

HedaP

Veteran Member
Donating Member
Camino(s) past & future
Frances starting SJPdP Sept/Oct 2015, April/May 2017
#20
Sounds like it is quite hard to get a diagnosis. I’m glad you were able to get one and that you can successfully manage the disorder.
 
#21
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.
Interesting. I have hypothyroidism and do suffer from RLS on occasion. I now wonder if the thyroid is not in its happy place, the severity of that imbalance can trigger a restlessness syndrome, possibly equal in severity to the thyroid imbalance?

From this, might there be a correlation to muscular imbalances and effects? For me, the other issues are IT Band Syndrome and quad pain when put under stress of more than 12 to 14 km with a light pack, otherwise, I still believe, once healed again, I may be able top go all day, again.
 

OLDER threads on this topic



Advertisement

Most read today

Most downloaded Resources

Forum Rules

Forum Rules

Camino Forum Store

Camino Forum Store

Casa Ivar Newsletter

Forum Donation

Forum Donation
For those with no forum account, it is possible to donate here as well. Thank you for your support! Ivar

When is the best time to walk?

  • January

    Votes: 6 1.3%
  • February

    Votes: 3 0.6%
  • March

    Votes: 22 4.6%
  • April

    Votes: 76 16.0%
  • May

    Votes: 131 27.5%
  • June

    Votes: 37 7.8%
  • July

    Votes: 12 2.5%
  • August

    Votes: 6 1.3%
  • September

    Votes: 122 25.6%
  • October

    Votes: 53 11.1%
  • November

    Votes: 5 1.1%
  • December

    Votes: 3 0.6%
Top