posted
After 5-10 years of being sick and now a year of antibiotics and herbals, I'm finally feeling that urge to start doing some of my hobbies again....I used to play classical flute, for instance, and after drifting away from this because of not feeling well, in the last month I suddenly have been wanting to play again!
Another activity I'd like to try again is hiking. BUT, I can't seem to tolerate more than an hour or so of (easy! flat!) hiking without getting a headache.
I can push through the headache, but I generally feel cruddy for the rest of the day, and sometimes into the following day. This is making it hard for me to want to get back into hiking!
I take great care to stick to my medication schedule while hiking, and I drink plenty of water and eat plenty. I also wear long sleeves and pants, and a hat, so I don't think the sun causes my headaches.
So, questions: (1) Is there anything I can do to extend the time I can hike before getting a headache?
(2) Is there any way to avoid getting a headache while exercising?
(3) Is there anything I can do to make the headache go away or fade while continuing to hike?
Thank you all for your help on this and all other things I have posted over the last year!
Posts: 243 | From Southern Arizona | Registered: Jun 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Mitochondrial support, adrenal support? There are some suggestions here in the links. Likely, best to figure out why you have the experience you do, if that is possible.
Headache could be for many different reasons.
Still, I know once you are out there, you probably want to just keep walking and walking and sometimes, that can feel great -- until at the other end of the route and then need to walk back! That magic never gives warning when it's about to just drop out.
An hour may be the time your body is telling you works for you right now. Maybe figure out how to BE out there in nature and break up the walking parts.
Topic: post exertional malaise/pain/herx...anyone had success getting rid of this? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
PEM is different than exercise intolerance. If one suspects PEM, you should try to get it confirmed.
You cannot exercise yourself out of PEM. Exercise - or rather, exertion - triggers PEM and spirals downward.
Exertion that can cause a PEM flare is not limited to physical. It can be intellectual, or emotional. It can be merely focusing.
People who suffer with ME/CFS have PEM. It is a cardinal trait of ME/CFS. One can have Lyme and ME/CFS simultaneously. Those that do have to negotiate the exercise contradiction...
Posts: 228 | From Unitied States | Registered: Jul 2015
| IP: Logged |
posted
I do much better keeping my physical activity timed for evenings. By the time I get that post-exercise come down it's usually time to retire.
If I exercise or lift in the mornings I'm usually wiped out and feeling too bad to do anything but lie down for the rest of the day, but exercising in the evening then sleeping on it seems to prevent feeling lousy.
Sorry about your headaches, not sure what to suggest for them except to make sure you're getting enough quality salt. That's good for adrenals too.
Glad you're feeling like getting back into activities again, it's wonderful to get motivation back. Take it easy on yourself, not hard to overdo it at first. I hope your hikes keep getting better.
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
posted
duncan - what is PEM? post exertional malaise? How do I confirm that (other than feeling headachey and achey after hiking)?
gz - I maybe will try to start doing 1 hour of activity in late afternoon or evening instead of trying to hike all day. Good idea.
I know I used to have salt issues, but that was before I knew about all the other stuff/infections I apparently have....now I'm not sure if I have salt problems or just lyme and co problems...what is high quality salt?
keebler - thanks for the link! I will read that thread now. I can't do the mitochondrial support (like Co-Q10) because I'm on mepron - but that reminds me when I stop mepron in a couple weeks to try to knock back bart for a while, I can go back on that.
I've had a 24 hour cortisol test (urine), and it was normal. Could I still have adrenal dysfunction contributing to hiking headaches?
Posts: 243 | From Southern Arizona | Registered: Jun 2015
| IP: Logged |
posted
High quality salt is salt in its natural state, without added chemicals, having been refined or minerals stripped out of it. They are usually grey or pink in color. Some examples are pink Himalayan and Celtic sea salt. I like to use the brand "Real Salt," it's mined from a mineral rich salt deposit in Utah.
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
posted
paleogal, yes, PEM = post-exertional malaise. But don't be misled by "malaise". PEM is a worsening, frequently a pronounced worsening, of a patients symptom cluster caused by some form of exertion. If you suffer with ten usual symptoms, you can count on most to be screaming at you during a PEM attack (although it may be limited to just a single symptom - each attack can be different).
There is usually - although not always - a lag between the exertion and the onset of PEM; typically 24 to 48 hours after exertion. It varies by person. The length of the PEM episode varies as well, stretching from a couple of hours to days and even weeks.
The best way to confirm if you have PEM is see one of the few experts that can diagnosis it. Alternatively, google it, but make sure you read up on it - even avowed ME/CFS experts conflate exercise intolerance with PEM. Geez, they even conflate chronic fatigue with CFS - and the two are really not related.
Exercise is a fairly universal remedy. It just doesn't always work, and in some diseases, it can worsen a patient's condition.
Indeed, there are channelopathies where REST causes episodic flare-ups. In Andersen-Tawil Syndrome, for instance, prolonged rest can result in paralysis.
Some of these diseases and disorders are so counter-intuitive as to throw off the most dedicated clinician.
Posts: 228 | From Unitied States | Registered: Jul 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- paleogal,
I did not realize you were still treating and taking Mepron. It may be completely reasonable that your body just can't hike more than it can at this point, with all that.
Babesia made it nearly impossible for me to walk and seemed to really squeeze my lung capacity.
And you say you have to yet "knock back the bartonella."
The liver is instrumental in exercise capacity and, with infection and Rx, the liver may be overtaxed with more physical exercise. It may not really be exercise intolerance as what's just par for the course and part of the "deal" for someone with such illness and Rx considerations.
Could you make peace with the time "allotment" you have for a while yet? Your body might award you later.
I'm guessing you've tried slowing down (even a stroll can be effective) &/or building in rest stops along the way to see if that helps (though, so often, that can zap the momentum and have one curling up on the ground with the cute little chipmunks for a cozy nap).
Even if you are hiking on flat terrain, if you are at any kind of elevation that might also be a factor to consider, given where you live. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Duncan,
good points about the differences in terms. And it's important to clarify that.
There are just lots of links there that apply to any sort of exercise & support issues so I hope there is something there for anyone as they start to explore the matter. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Mast Cell issues can also cause trouble with exercise capabilities. LymeToo recently started this thread:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic