My PEM seems to be different from others

[taniaaust1]

Okay, but you can solve that problem by simply buying a recumbent bike. There are models that go right down to the floor and you can sit in a way that no amount of dizziness would ever prevent you from using the bike.

My ME then would kick in in that case. I dont just have OI but have ME too. I cant do repetitive motions as my muscles exhaust and go into pain. eg If I run, I can only run for 45 seconds before my legs burn out and become so weighted that I then can hardly move them so I have to go to a walk till I get muscle recovery back, I'd have same issue on recumbent bike with muscle burn out severely as that's too repetative and fast. I have same issue if Im scrubbing something with my arms.

Issues still there is Im quickly stopped from doing something within less then a minute due to obviously some kind of severe mito issues in which my body cant keep replacing energy to move. Cause I cant scrub for even 1 minute and have to stop (I start getting issues with it at about the 35-40 second mark) , I dont think that could cause me to probably crash either "easily" in a full body ME way either (it only can leave me at the worst unable to use arms for rest of the night but I stop before I get to that point as its just tooo hard to use my arms, it ends up hurting too much and they jsut wont keep moving). I just cant do it long enough.

I have majorly ME crash one time from peeling vegetables for about 20mins.. That is a slower moment which my muscles can keep doing for a while so that can crash me. I crashed so bad on that occassion that now only did I wipe out but I also ended up with the air hunger thing and felt like my cells were starving of oxygen (breathing issues but I could tell it wasnt my lungs). I would of called the ambulance as Iwas left that bad from 20min of veg peeling, if it wasnt Xmas and would of upset my family had I done so.

All this said, so I can crash at times in a proper ME way but I think its way less then most here as my ME symptoms are so severe.. Severe POTS etc and the severe mito issue? are preventing me from being able to do much at all.. preventing me from being able to cause total crashing with the post exertional thing happening a day or two later.

Instead due to over doing quite often (just with my general living stuff one needs to do), Im just getting a very slow downhill thing going on with my ME (which only is noticable if one compares where I are now with say 4mths ago.. its a consistant slow decline which I know is due to the "little" Im doing now.

 

[taniaaust1]

Thanks.

I think this is the case with me.

Would you be able to ride a recumbent bike (one of those laying down bikes) pone suggested, without it making you ill? What would happen to you if you did that, can you do that?

 

[pemone]

My ME then would kick in in that case. I dont just have OI but have ME too. I cant do repetitive motions as my muscles exhaust and go into pain. eg If I run, I can only run for 45 seconds before my legs burn out and become so weighted that I then can hardly move them so I have to go to a walk till I get muscle recovery back, I'd have same issue on recumbent bike with muscle burn out severely as that's too repetative and fast. I have same issue if Im scrubbing something with my arms.

Have you tried sodium bicarb / baking soda (NOT baking powder) per other threads on this site? If you pre dosed with bicarb, did mild exercise, then continued to take every 15 minutes to symptoms, I think you would find the PEM would not last days any more.

 

[Hope123]

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. I don't notice any symptoms that become worse hours/days after exercising like most describe with PEM. Any idea as to what this may be?

Other than the hearing loss, the symptoms you mention could just as well be related to heart (coronary artery) disease. Some people don't get chest pain or shortness of breath but instead get nauseous, sweaty, dizzy, and generally feel bad. It's esp. interesting that you feel better after stopping exercise. Talk to your doctor about your symptoms and ask them about checking out your heart. Don't assume it isn't your heart just because you're younger, female, etc. To this day, diagnosing heart disease remains challenging because some clinicians don't have a high enough index of suspicion and we still don't understand entirely how it can present differently (for example, in women, in Blacks, in older people, in young men, etc.). I've had relatives dismissed by their docs for these types of symptoms; fortunately, my family is fairly medically savvy so they asked for second opinions or insisted on testing, leading to the right diagnosis.. ME/CFS does not have a specific treatment, heart disease is a more urgent matter and has many effective therapies so you need to eliminate it as a cause.

My PEM is not like what you described. I have symptoms like flu-like feelings, all-over muscle/ joint main (not just the exercised parts), sore throat, larger lymph nodes, insomnia, mental confusion, etc. It also lasts longer.

 

[pemone]

Other than the hearing loss, the symptoms you mention could just as well be related to heart (coronary artery) disease. Some people don't get chest pain or shortness of breath but instead get nauseous, sweaty, dizzy, and generally feel bad. It's esp. interesting that you feel better after stopping exercise. Talk to your doctor about your symptoms and ask them about checking out your heart. Don't assume it isn't your heart just because you're younger, female, etc. To this day, diagnosing heart disease remains challenging because some clinicians don't have a high enough index of suspicion and we still don't understand entirely how it can present differently (for example, in women, in Blacks, in older people, in young men, etc.). I've had relatives dismissed by their docs for these types of symptoms; fortunately, my family is fairly medically savvy so they asked for second opinions or insisted on testing, leading to the right diagnosis.. ME/CFS does not have a specific treatment, heart disease is a more urgent matter and has many effective therapies so you need to eliminate it as a cause.

Good point. The original poster should get a full cardiac workup and a stress test should be done with the instrumentation in place. This isn't something he should just self treat.

 

[taniaaust1]

Have you tried sodium bicarb / baking soda (NOT baking powder) per other threads on this site? If you pre dosed with bicarb, did mild exercise, then continued to take every 15 minutes to symptoms, I think you would find the PEM would not last days any more.

No Ive never tried baking soda so have no idea what that would do for me if anything. Are you saying it may help me do more before my muscles etc burn out? How long before exercise does one take it to see if it will help?

 

[taniaaust1]

Have you tried sodium bicarb / baking soda (NOT baking powder) per other threads on this site? If you pre dosed with bicarb, did mild exercise, then continued to take every 15 minutes to symptoms, I think you would find the PEM would not last days any more.

As I said, I rarely get PEM for days as I cant even exercise enough to get PEM!! I get symptoms now days almost immediately on exercise. As I think I said before.. in less then 1 min. Cause I cant do enough exercise to get PEM much any more, means Im back to my baseline the next day.. (but then crash almost immediately again if I try to do anything).

Due to how fast and quick my symptoms kick in.. Im almost not able to do a physical thing. I cant even take myself out for the weekly food shopping (I need to be taken out in a wheelchair).

Would bicarb help me to do something like scrub something vigourously for a minute?

 

[pemone]

No Ive never tried baking soda so have no idea what that would do for me if anything. Are you saying it may help me do more before my muscles etc burn out? How long before exercise does one take it to see if it will help?

30 minutes before exercise, and then treat to the symptom after exercise, or treat to acidic urine pH, as measured by test strips.

 

[pemone]

As I said, I rarely get PEM for days as I cant even exercise enough to get PEM!! I get symptoms now days almost immediately on exercise. As I think I said before.. in less then 1 min. Cause I cant do enough exercise to get PEM much any more, means Im back to my baseline the next day.. (but then crash almost immediately again if I try to do anything).

Due to how fast and quick my symptoms kick in.. Im almost not able to do a physical thing. I cant even take myself out for the weekly food shopping (I need to be taken out in a wheelchair).

Would bicarb help me to do something like scrub something vigourously for a minute?

Are you measuring urine pH? It would be very interesting do you have acidic urine pH when you scrub something and get the persistent symptoms?

It cannot hurt to just try the bicarb and see if you get symptom improvement. Small little experiments, and then build on the result.

 

[taniaaust1]

30 minutes before exercise, and then treat to the symptom after exercise, or treat to acidic urine pH, as measured by test strips.

Thanks.

One of my friends had some urine pH test strips, Im see if he's still got the box of them for me to give me one.

 

[pemone]

Thanks.

One of my friends had some urine pH test strips, Im see if he's still got the box of them for me to give me one.

Here is the strip I buy on Amazon:
http://www.amazon.com/gp/product/B002ZYVU4O

It's a very simple dispenser and I can conserve tape pretty well now.

Start simple. 1/4 teaspoon bicarb, at least one hour before meals and at least two hours after meals. NEVER TAKE WITH FOOD.

And please report back once you try it!

 

[pemone]

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. I don't notice any symptoms that become worse hours/days after exercising like most describe with PEM. Any idea as to what this may be?

Have you seen a cardiologist? In thinking more about your issue, I think you should ask your doctor to let you see one, and you should request a cardiac stress test.

You might actually be one of the few people on this site that a normal allopathic doctor can help.

See if you can get a doctor to give you an EBT Scanner test (this is low radiation version of a CAT scan...AVOID a regular CAT scan because of high radiation) with calcium scoring. That test might be a life saver for you.

 

[jann1033]

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. I don't notice any symptoms that become worse hours/days after exercising like most describe with PEM. Any idea as to what this may be?

Have you ever checked your blood sugar levels when this happens. Low levels cause a lotof this. I wonder if the exercise is causing a drop.
I havent " exercised" for 15 years but if i overdo it, i get a short term total exhaustion followed usually by exacerbation of some symptoms 10-24 hrs later. How severe and how long that lasts(days,months, years) depends on how much stress is on my body(ie illness, frequently over exertion, emotional stress ect.)
Since i wised up and started stopping before exhaustion the exacerbations don't last as long. I still at best function at maybe 20-30% of preME/CFS but less pain ect. This last one the brain fog just is not improving (months) . I took a quiz on Facebook mesuring your "thinking ability" and got a " you have to be kidding, are you an idiot? " type response to it ! But i think I'm thinking fine till i reread posts or something and have to go back and put in the words i didn't type, spelling errors ect. Like I typed "im" above, took me 4 tries to fix it and then 3 corrections in this one sentence lol!

 

[Little Bluestem]

Dr Shallenberger in Carson City, Nevada has a test where he can show at what level you enter glycolysis. A CFS sufferer would go into full on glycolysis at a low level of exertion.

Is the the same thing as the anaerobic threshold/lactic acid test?

 

[pemone]

Is the the same thing as the anaerobic threshold/lactic acid test?

It might be the same or a similar idea. They attach a pulmonary gas analyzer to you that measures O2 in and CO2 out. As you increase workload, the O2 and CO2 climb about 1:1 to each other. When you hit your threshold, there is a surge of lactic acid, which due to some chemical reactions is measurable as a simultaneous burst in CO2. They simply record the work level and O2 utilization at the moment you hit that threshold. They are not inserting any needles and measuring lactic acid directly.

 

[Little Bluestem]

I haven't had the test yet, but it sounds the same or very similar.