High Altitude and ME

[kangaSue]

After many years with this illness, whatever it is, my red blood cells look like Mike Tyson beat them up. I'm surprised they 'remember' how to work at all. (probably not related to altitude though).

Might not be related to altitude but likely to be related to hypoxia from low oxygen carrying capacity.

EPO as a means to increase red blood cell mass in ME/CFS has had mixed results. It increases blood volume o.k. but not a lot of other significant symptom relief for many people.
https://www.healthrising.org/treati...n-procrit-for-chronic-fatigue-syndrome-mecfs/

New research into low cellular oxygen levels though is suggesting that something is amiss with hypoxia response elements and prolyl hydroxylase inhibitors might hold the answer. So much so that there are more than 2 dozen meds being looked at or are in clinical studies for ischaemic or inflammatory diseases targeting hypoxia inducible factor (HIF).
https://www.jci.org/articles/view/90055
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4259899/

 

[lch1]

I would like to ask if any of you have any experience with high altitudes after you came down with ME. I'm talking altitudes between 8000 and 12500 feet.
For how long did you remain on such an altitude and what effect did it have on your condition?

Last February I had a very difficult time at 2000 feet, experiencing extreme bloating. It was insidious, I struggled for 2-3 days until I realized that the altitude was the problem. I then left that hotel and checked in at another city at a lower altitude (1400) and felt some relief. I have the MTHFR mutation (homozygous C677T) and I am less consistent with supplements as I should be. I'm visiting the same place in January 2018, so I will stick to RichV's MBP consistently until then. There is a good deal of literature on studies with high-altitude cultures and mutations. MTHFR is of significance and that mutation will throw one into severe chronic fatigue. I welcome any insights or information from others on this!

 

[catwiley66]

I have been living at 8,000 feet in So. Colorado for over two years now and it is greatly exacerbating my fatigue. All the energy I have goes to my part time work and swimming and yoga when I am able and the rest to some socializing. I am sure menopause is not helping, so I am working on that with HRT. However, right when I got here I realized I was very tired and unmotivated to do much and that has persisted. Also, the psychology of the place is overly laid back and slacker. Not even a street light here and it's at the end of a long road out in the middle of a big desert pretty much. It is high alpine desert. Beautiful, but I had hoped I would adapt more by now. When I go anywhere lower to about Denver which is just over 5,000 feet, my energy is better. I still have fatigue issues, but I feel like I have more energy to work with. I don't think my cells use oxygen as well anymore. Might be mitochondrial dysfunction.

I do test my O2 Saturation. have a little machine that might not be as accurate, but sometimes I go to the doctor and it is 94-95. Anywhere else it is 97 -98. When you consider they put you on oxygen under 90, a little difference might be big to someone with CFS. I don't know...I have thought of getting oxygen but cannot afford the twice daily home tank. I know they sell some on ebay from other countries, but I read that those can be less effective at high altitudes as these things need to be calibrated a certain way.

Overall, I do think my CFS is worse here for sure. I like it here in some ways, but I am overly frustrated with not being able to get enough done and feeling trapped in this tiny weird little town. As I said, I think the psychology of the place is draining on its own.

I go sit in a sauna which helps get more oxygen to my brain and body parts, but it doesn't increase my daily energy otherwise.

 

[catwiley66]

P.S. I am also worried about my depression here. Less oxygen does strange things to people and I do not enjoy it when I am also hit with severe clinical depression at times. Suicide rates tend to be higher at altitudes and they are not sure why. They think altitude has a big effect. So, in lieu of the fact that I suffer from both things, this place is not great for me and I find myself sitting down a LOT. I will clean my kitchen and then need to sit down for a whil before I can do anything else. Frustrating!

 

[JeanneD]

I live at 8000+ feet and am better than I was when I lived at sea level. I wouldn't attribute that to altitude, however. What I can say is living at high altitude has not made me worse. I have traveled by car to much higher altitudes without any noticeable effects.

People who live at high altitude will tell you that some "flatlanders" develop altitude sickness consistently at high altitude no matter what they do, and that there appears to be a mild familial tendency to altitude sickness. There is no known reason why yet, afaik. There is some anecdotal evidence that a significant percentage of people who get altitude sickness are migraine sufferers. That may be a clue to something.

There is a percentage of the general population prone to altitude sickness, so a few PWME who get altitude sickness may fall into that group. My guess for the rest is that there is a variant of ME/CFS that have some condition that that results in worse ME symptoms at high altitude. Lower pressure may be an issue. Dehydration may be an unrecognized issue. Many high altitude locations are dry relative to other areas.

It might be interesting if those who get altitude sickness compare their ME symptoms to see if they have a commonality that is less common in those of us who don't get altitude sickness.

 

[Santilion]

I recently arrived home from the trip and would like to share my experiences:

We spent a total of eight days at altitudes ranging from 11150 feet to 13500 feet and then six days at 8000 feet. I took 250mg of Diamox twice a day as a precaution during the visit at the highest altitudes and that turned out to be a good idea. One will have to watch for possible side effects during the time of use however.

We took it very easy during the trip. Everyone got affected with symptoms due to the altitude. The "altitude sickness" weakness and fatigue differed from ME however. It felt as if ME took a short break in order to let the altitude sickness have its go. I didn't experience the same kind of fatigue that's present at sea level during the days on high altitude. The ME was much milder but I still cannot say I felt better due to AS. Only different.

I fared better than the other ones in my company though, and they are audaciously healthy. It's individual and highly unpredictable who will get affected by AS and to what degree. The effect AS had on the healthy people in my company seemed somewhat similar as to how I experience my worst days with ME.

The high altitude didn't worsen the condition in my case and I highly recommend taking it very easy during visits on high altitudes in order to prevent a worsened condition. By easy I mean a heavily reduced activity level than what you're used to be able to tolerate on sea-level if you have a mild condition.

Lastly, I'd say diamox saved the trip.