Fatigue and Pain

[Big Guy]

I hear the importance of hydration for dysautonomiacs due to syncope.  But does fluids help with fatigue and pain symptoms? I've been an athlete all my life so it is normal for me to get proper rest when I experience extreme fatigue. However, it is also my nature to push through tough moments that will not create long or short-term down time (for whatever reason).  The analogy that I have read is that as a person with dysautonomia, I have a finite amount of energy each week and I should distribute it wisely. This has been my attempt, although I'm just not satisfied with that. Does anyone have any other answers to dealing with fatigue (like everyone, I experience near debilitating fatigue and miss work because of it) and pain?

I have always been the person that never calls off work for the day. Unless I'm on vacation, my coworkers know that when they come to work I'll be there. However, not lately and it is the source of a lot of frustration (to say the least).

Thanks in advance.

[mountain girl]

While I would like to have a good answer for you, I am not sure it is what you want to hear.

I was like you in that I never missed work, before becoming ill with dysautonamia syndromes. I also experienced the debilitating fatigue, and pain. 

I wonder if you have sick leave, vacation time, or any type of short term or long term disability at your job? That would at least allow you to see how you would feel if you could have some extended time off. I never had a doctor say, take some time off, but when I felt so bad I took 2 weeks off, I started to feel better. I have had to learn this is not something one can push through. I still have to learn that from time to time on a day I do too much. 

I stopped working about 6 months ago, and my pain has been much less, the fatigue, less debilitating IF I limit my periods of activity with rest. I worked many years with pots, as I was not ready to give up that part of my life. I did go from a more physical job as a nurse, to an office job as a school nurse, and I do think that helped me to be able to work longer, but in the end, for me, it was still too much.

I did have cranial manipulation treatments early in my pots for several years, and I felt that helped me some. Look on Cranial Academy.com for a list of doctors who do this. It was recommended to me by Dr. Michael Goodkin, who was a cardiologist I saw in PA whose daughter had pots. He is now retired, but was a wonderful doctor to me. The main reason I am no longer doing it, is my local guy retired, and I was having to go an hour away to get the treatments, and my insurance did not cover his fee. The first doc I saw for cranial was only a co payment, just like any other doctor. The other doc was out of net work.

I also used a TENS unit for back pain in the evenings after work, and that helped me.

[Big Guy]

Thanks Mountain Girl.  Your answer helps a lot. Basically what I expected anyway but didn't want to accept. I have a good leave plan at my job. I thought about extended leave but have been delaying that.

Thank you again. You've been a big help.

[vepa]

Part of it is really just adjusting to a new lifestyle. However, also talk to your doctor, because I had assumed that my fatigue was just a symptom of my dysautonomia and nothing could be done. I mentioned it to my PCP and he had a different perspective. He ran a ton of bloodwork and found my vitamin D levels were very low and my testosterone was practically non-existent. I've been on prescription doses of vitamin D and testosterone replacement and have noticed a huge upswing in energy. Since talking about it on here, I've learned that others with dysautonomia also had similar nutrient or hormone deficiencies. 

Sometimes there are things to do to address the fatigue, so don't be too quick to just accept your fate. 

[mountain girl]

23 hours ago, vepa said:

Part of it is really just adjusting to a new lifestyle. However, also talk to your doctor, because I had assumed that my fatigue was just a symptom of my dysautonomia and nothing could be done. I mentioned it to my PCP and he had a different perspective. He ran a ton of bloodwork and found my vitamin D levels were very low and my testosterone was practically non-existent. I've been on prescription doses of vitamin D and testosterone replacement and have noticed a huge upswing in energy. Since talking about it on here, I've learned that others with dysautonomia also had similar nutrient or hormone deficiencies. 

Sometimes there are things to do to address the fatigue, so don't be too quick to just accept your fate. 

Thanks vepa, you make a good point about the lab work if that has not been done.

[haugr]

Several of the males on here have had abnormally low testosterone (myself included) which can definitely cause extreme fatigue.  It might not hurt to get your testosterone levels checked.  If thats the case, testosterone supplementation could make a big difference.

[Big Guy]

Thanks for all the good info.  Good to hear from another guy. I will definitely keep the testosterone issue in mind during my next visit to the Dr.  I've had a my Vit D checked and of course it is low like most people I think. I have been taking a mega dose for about two weeks, so hopefully I get that kicked soon. 

I appreciate the good words. As I'm sure you know, it helps to hear from the people that know what I'm experiencing.

Have a great week.