I don't think I have post exercise fatigue, not CFS? Going to test it.

[SteveRacer]

I have a lot of stuff going on: tired ALL the time, usually can't exercise much, maybe 15 mins on a good day. Most days I just take walks if anything.

Anyway, I have sleep disorders, ears ringing, tiredness, sleepy all the time... I'm not sure if I'm "fuzz headed" because I'm just so damn sleepy it's hard to think. Also my heart pounds all the time.

So... I haven't really exercised in a while. But, in the interests of figuring this out, today I'm going to make myself exercise until I cannot any more. Usually I stop after 15 mins but I'm going to try to do at least 30 of hard workout. Usually I'm just too damn tired, and I am today too, but I'm going to give it a go, and see if I get this post exertion fatigue that is supposed to be a primary symptom.

I also don't have pain, in joints or headaches.

I'm also wondering if my hiatal hernia has anything to do with my recent fatigue, I'm giong to see a doc about that too... once I figure out how to come up with money for all this stuff.

 

[Wonko]

erm......everyone gets post exercise fatigue - everyone

pwME have post exertional malaise as a primary symptom - this is NOT the same as post exercise fatigue - it's not just (or even mainly) a matter of being "tired all the time"

whilst there are several different manifistations of brain fog in almost all situations you would know if it was occuring - when I was much younger I used to work 16-18 hours a day for several weeks with only the odd day off - I know what normal fatigue (inc mental fatigue) feels like - brain fog is not the same

going to failure is a bad idea for almost everyone - there are exception but pwME arent among them

clarification of "hard workout" would be useful as I suspect if you mean the same by it as I do then it may not tell you anything useful whilst being risky - there are rules to working out with ME and breaking them WILL lead to a crash - possibly serious depending on your current status

if you have any reason to suspect ME as a diagnosis that fits the facts in your case then "excessive" exercise would be a bad idea at least until you get the matter clarified, as it could make you a whole lot worse very rapidly

if you do have ME then you dont want to experience a bad crash - it isnt funny - and you never know if it will have longer term consequences - a lot of people never recover to their precrash state - a certain amont of caution is required when dealing with any activity - and a do it until I break attitude isnt cautious enough

 

[SteveRacer]

Ah, well, thanks for the warning. I just realized I didn't seem to have that... whatever the term is, that people with CFS get after exercise. I worked out hard for 35 minutes... it's more than I've done in 3 months...and, uh... I have felt good all day after.

just wanted to let you all know I lived for now. I will see how I'm doing tomorrow.

 

[Tom]

PEM can take upto 3 days to kick in.


Tom

 

[leaves]

Yes I didn't realize I had PEM either at firtst; mine kicks in 2 days later

 

[Esther12]

Fingers crossed that you were just going through a funny patch of fatigue, and will get out of it relatively quickly.

At the moment CFS is something of a dustbin diagnosis, so it's possible that whatever is causing your symptoms will resolve itself okay. If you feel like you're starting to respond normally to exercise that's great news.

I wouldn't get carried away right now, and it would probably best to increase your activity levels with some caution...

I'd also be a bit hesitant of what I say. I had a sudden onset and have never had a remission, so don't really understand what it means to have CFS but also be able to do quite a lot of stuff. I guess no-one really knows what they're talking about with CFS though.

 

[soxfan]

I have been sick for 6 years and have never had post exercise fatigue. I can't run like I use to but I can walk 50-60 miles a week and never have any malasie afterwards. I am even able to run a couple 5K's every year with no consequence.

I however do have a huge problem with post exertion malaise after I work or am involved in social situations. Then I am down for a day or two. I can always feel the life draining out of me during these times. It can be after 2 hours or 4 hours I just never know...

I am not sure if having post exercise fatigue is a criteria for having CFS.

 

[Cloud]

http://www.mefmaction.net/documents/me_overview.pdf

It was when I read the CCD that I knew for sure that I had ME/CFS . The other known diagnostic criteria is a joke and is too inclusive.
Yes, PEM is the hallmark symptom, but I went through the early years with it being one of the less severe symptoms. Currently PEM is by far my most prominent and severe symptom. And yes, for me too it is often delayed up to 2 days after the exertion....which is another thing making it a unique symptom.

 

[Victoria]

As I have been doing very slow walking (for 2-3 hours) several times a week (for the last 3 months), I decided to test my fitness last Tuesday.

I walked right around the Botannic Gardens in Melbourne (4.6kms). Half way around, I decided I'd had enough. But I had to get back to the initial starting point to get home. So I took several "breathers" during the rest of the walk for a minute or so each.

I finished the walk easily (except for very sore, swollen feet), but it took about 4-5 days to completely recover & my right foot still hurts, so I have been keeping my walks fairly short since.

Walking very slowly, leisurely, stopping to take photos every now & then, for 2-3 hours DOES NOT MEAN I AM FIT (as I now know).

That walk last Tuesday was only 1 hour, but walking at normal healthy person average walking speed for 1 hour was too much for me.

In future, I will stick to my slow, leisurely stroll !

 

[Tom]

A couple of months ago I started Hyperbaric Breathing http://www.hyperbaricbreathing.com/ when walking in our local woods.
Trees produce oxygen .
I'm noticing a slow , gradual improvement , almost getting to be pain free , ease of walking improving and going further .Starting to get a bit of muscle tone as well . Trying to gradually stretch the limits without causing too much damage.

Tom

 

[Athene]

Steve, have you been properly tested for all types of sleep disorder?

Also, I read that people with Lyme disease don't get PEM like people with CFS. This was written by Burrascano who is one of the top Lyme doctors. He wasn't clear if this was before, during or after completing antibiotic therapy. In my case, I DEFINITELY do get PEM but i haven't started treatment yet so maybe that's the reason.

Tom's point about walking in the woods for an oxygen rich atmosphere is very interesting . The Lyme clinic I am going to says that they put an oxygen mask on their patients and then make them exercise. Apparently they can tolerate exercise in this way, and gradually build up their fitness and, most importantly, stimulate their immune defences this way. The clinic says exercise is the single most powerful way of improving the immune system, better than any drugs available.

This is of course based on the knowledge that exercise for Lyme patients and CFS patients makes the blood oxygen level go down dramatically, taking only about 2 or three minutes of exercise to reduce it to dangerous levels. KDM measures this in all his patients, and said mine, at 80, was a very bad case, so presumably the usual range is higher.

So, Steve, you could try getting your doctor to arrange a test in a cardiology clinic where they put you on an exercise bike and measure your blood oxygen and heartbeat for 4 minutes. If you have CFS your pulse doesn't get fast enough and your blood oxygen saturation plumets.
If your doctor is no help, you can buy oximeters for 40 pounds on Amazon and measure it yourself. This may actually be better in that you can play around with all different types of exercise and also try out Tom's ingenious idea of walking around near plants to get as much oxygen as possible.

 

[Cloud]

Athene is KDM = Klinghardt? I don't know as much about Lyme, but I do know that with ME/CFS continued pushing of oneself with exercise, can cause a progression of the disease. Hopefully he is using the stress test for diagnostic purposes only and not attempting graded exercise therapy with ME/CFS.

Now that you mention it, PEM is not a big problem with my few Lymie friends.

 

[Athene]

Hi Cloud,

KDM is Kenny De Meirleir. He only uses the stress test for diagnosis and he actually tests your heart first before deciding if you are allowed to do it. He insisted on being present personally throughout my test rather just letting the nurse do it (because I had recently had heart surgery).

During the test he kept telling me to stop if it was too hard, but I kept going for 4 minutes, I don't know why. I think I want to see if my heart really was OK at last, because before the operation that exertion would have made it stop beating for a few seconds, and it took a long while for me to really believe the miracle that I could do such a thing without falling unconscious!

When I was getting off the bike he and the nurse actually took hold of me and made me lie down - they couldn't believe I would actually be capable of standing up by myself with that oxygen saturation. Actually I didn't feel too bad apart from my legs hurting way more than usual. The really bad effect kicked in that afternoon and lasted about 5 days.

I really want to understand this business about Lyme and CFS being different. Both are known to cause mitochondrial damage, which I understand is the root of this problem, so presumably if this difference is true, the mito damage must be different in each case.
If I remember rightly Cloud, you have Lyme and also XMRV?? I suppose that would be another case again. Have you had any testing of this? It would be interesting to know what they found with you.

 

[Cloud]

Hi Cloud,

KDM is Kenny De Meirleir. He only uses the stress test for diagnosis and he actually tests your heart first before deciding if you are allowed to do it. He insisted on being present personally throughout my test rather just letting the nurse do it (because I had recently had heart surgery).

During the test he kept telling me to stop if it was too hard, but I kept going for 4 minutes, I don't know why. I think I want to see if my heart really was OK at last, because before the operation that exertion would have made it stop beating for a few seconds, and it took a long while for me to really believe the miracle that I could do such a thing without falling unconscious!

When I was getting off the bike he and the nurse actually took hold of me and made me lie down - they couldn't believe I would actually be capable of standing up by myself with that oxygen saturation. Actually I didn't feel too bad apart from my legs hurting way more than usual. The really bad effect kicked in that afternoon and lasted about 5 days.

I really want to understand this business about Lyme and CFS being different. Both are known to cause mitochondrial damage, which I understand is the root of this problem, so presumably if this difference is true, the mito damage must be different in each case.
If I remember rightly Cloud, you have Lyme and also XMRV?? I suppose that would be another case again. Have you had any testing of this? It would be interesting to know what they found with you.

Hi Athene,

I have the greatest respect for Dr Kenny. I too would do whatever he told me to do. Glad to hear it's for diagnostics anyhow. Dr Peterson put me on the treatmill for the VO2 max, and I said....that will make me really sick. He said yes I know, that's what we want, now get at it.

I too am interested in the differences with Lyme-CFS symptoms, especially PEM. I was hoping the studies there in Idaho would clarify more on not only PEM, but also which infections were found most involved. I am particularly interested if xmrv is the major player with PEM.
I recall a few of my Lyme friends without PEM, yet very sick with a CFS like illness in other ways. I also have one Lymie friend who has almost recovered with ABX treatment and she was out hiking miles early on in her recovery. Not me. PEM is the last holdout. Dr peterson said it's the last symptom to resolve with recovery.

Yes, I'm xmrv+ per VIP serum, whole blood, and culture. I am currently waiting on the Serology results. As far as Lyme...with IgeneX I tested marginal on the Bb with only 2 bands, but positive for babesia (although I don't really have Babesia symptoms). My LLMD, is treating me based on symptoms and risk factors (grew up in the mountains) more than the labs. I fit the IgeneX list for symptoms of Lyme like 98%. But honestly, I don't think I have Lyme. The reason is that I responded great to ABX at first, then nothing. And since that switching ABX doesn't do a thing for me. That original response was likely just an anti-inflammatory effect of the meds. I could be wrong....I'm actually right in the middle of trying to determine that issue. I am on ABX, but feel I am getting most results from the methylation work. As far as Babeisa, I believe that is by far the most common co-infection wpi is finding with xmrv (false + due to the xmrv?).

 

[dsdmom]

Yes, I'm xmrv+ per VIP serum, whole blood, and culture. I am currently waiting on the Serology results.

Cloud - quick question. If you have tested positive for xmrv via serum, whole blood and culture, why get serology too? Is there a worry the others might not be right?

 

[Cloud]

Cloud - quick question. If you have tested positive for xmrv via serum, whole blood and culture, why get serology too? Is there a worry the others might not be right?

No, we know for sure those tests are valid....no false positives there. The Serology results are needed to see if I'm mounting an antibody response to XMRV (and MLV variants)....we need these results to help design a treatment plan.