The Weirdiness of Walking and Exercise

[Cort]

So once again I walked too far with the dogs. Once again I congratulated myself on my good walk and my improvement only to get whacked the next day (and now the next day)...

The weird thing about the pain that shows up is that it's not in my legs - which after all did the walking - it's more in my upper body - in my chest, arms, shoulders and neck. Everything above my sternum basically.

My legs look stronger - I see some muscles popping out a bit - they're probably stronger but everything else went to hell and a hand basket.

At one point I got a bicycle - I love to ride bicycles - and I worked my way up until I was riding quite a distance - my legs were getting stronger and stronger but I paid for it with enormous fatigue....

Such a strange disease...

 

[Gijs]

I feel the same Cort Very strange... and an unique primair symptome for ME! If you don't have this response, you don't have ME. I think.

 

[Cort]

I wonder if this could help explain why Bob Naviaux doesn't believe the mitochondria are broken as in classic mitochondrial disease but that they're turned off ???

 

[Gijs]

There is low AT, bloodflow, so short of everything. I believe that we receive energy from the stress hormones.

 

[bobby]

I believe that we receive energy from the stress hormones.

@Gijs that's an interesting theory... could you explain this a bit further?

 

[Gijs]

In my theory it is due to dysfunction of the ANS.

 

[voner]

So once again I walked too far with the dogs. Once again I congratulated myself on my good walk and my improvement only to get whacked the next day (and now the next day)...

The weird thing about the pain that shows up is that it's not in my legs - which after all did the walking - it's more in my upper body - in my chest, arms, shoulders and neck. Everything above my sternum basically.

My legs look stronger - I see some muscles popping out a bit - they're probably stronger but everything else went to hell and a hand basket.

At one point I got a bicycle - I love to ride bicycles - and I worked my way up until I was riding quite a distance - my legs were getting stronger and stronger but I paid for it with enormous fatigue....

Such a strange disease...

Cort,

All the parts affected are above your heart....

 

[Cort]

Cort,

All the parts affected are above your heart....

Good point - so less blood flows? I also wonder about the fact that I often stop breathing...I wonder if this breath holding is causing more tension in my upper body?

 

[voner]

Good point - so less blood flows? I also wonder about the fact that I often stop breathing...I wonder if this breath holding is causing more tension in my upper body?

About the blood flow, Who knows? It certainly seems possible. There certainly seems to be autonomic/vascular issues in a subgroup of ME/CFS patients.

About the breath holding – if your body was healthy, a long walk would not be an issue and I would think your breathing would instinctively work properly.

 

[Cort]

A

About the blood flow, Who knows? It certainly seems possible. There certainly seems to be autonomic/vascular issues and a subgroup of ME/CFS patients.

About the breath holding – if your body was healthy, a long walk would not be an issue and I would think your breathing would instinctively work properly.

Ah good point Voner about better breathing while exercising.

 

[voner]

On the other point..... Blood flow...... Maybe it might be better if we thought of it as "dysfunctional" blood flow. That would include low blood volume, but also vascular dysfunctions that might cause ischemia etc.

Cort, I do the same thing as you. I'm always pushing the exercise (for me - walking) envelope too far. Sometimes willingly. I just enjoy being outside and in nature, etc. too much. Although, I've gotten much better over the years at resisting pushing the envelope. Maybe you could trade your dogs to warn you!

 

[Issie]

Cort, how's your posture? Is your head on its axis straight, are there improper curves in your neck, do your shoulders round?. I've been looking into the possibility of spinal compression and nerve blockage and issues with lymph drainage. If you jut your chin out and your head goes forward, it puts undue pressure on your neck and shoulders and upper back.

Then again, there is the blood flow issue. And I don't know why, but my sis and her kids and I all hold our breath when we walk. For sure there is a breathing issue. Especially going up stairs. Then we hyperventalate when we get to the top. I don't get it.

Issie

 

[zzz]

Exercise has also been shown to cause abnormal brain changes in PWME. This could reasonably be expected to aggravate existing brains dysfunctions, such as dysautonomia. Increased dysautonomia would certainly explain a lot of the problems you describe with your upper body, which are exceedingly common in PWME. Low blood volume (another symptom of dysautonomia) could also be aggravated, again explaining not only the location of your increased symptoms (above heart level), but their nature as well, as low blood circulation has negative effects on everything from muscles to the brain.

 

[Snow Leopard]

At one point I got a bicycle - I love to ride bicycles - and I worked my way up until I was riding quite a distance - my legs were getting stronger and stronger but I paid for it with enormous fatigue....

Ebike! Twice the fun, half the fatigue.

I actually got substantially fitter through at one point, but same experience as you - no decrease in fatigue at all, still the same long payback period.

 

[Veet]

Increased dysautonomia would certainly explain a lot of the problems you describe with your upper body, which are exceedingly common in PWME.

Can you expand on this, please. My arms are very weak, I must be very cautious in using them to avoid inflammation. In the past, I could not even type more than a few lines w/o pain, but that's no longer so. I thought it was nerve issues.

 

[zzz]

Can you expand on this, please. My arms are very weak, I must be very cautious in using them to avoid inflammation. In the past, I could not even type more than a few lines w/o pain, but that's no longer so. I thought it was nerve issues.

The particular problem you describe does not sound like dysautonomia. There are many possible causes for weakness in the upper limbs; some of these can be due to poor circulation (which can be related to low blood volume), lactic acid buildup (which may be influenced by poor circulation), and motor nerve problems, among others. Muscle biopsies of PWME have shown abnormalities for which the causes are not completely known.

Although muscle pain is very common in this illness, it is generally not accompanied by inflammation. When it is, the inflammation may be the result of an autoimmune response, or a more general immune system dysfunction. It would take proper testing by a skilled doctor to determine more precise details. A good rheumatologist might be able to help here.

 

[Scottline health]

i think you have a circulation problem. It actually affects the blood flow throughout the whole body, but here it is most noticeable.
Leg pain and foot pain
Prolonged sitting can also cause poor circulation

Tips to Improve your Circulation at work:

Take regular breaks

Improve blood flow with exercise

Avoid restrictive clothing

Wear comfortable shoes at work

Drink plenty of fresh Water each day

Keep your feet and hands warm

Exercises that help promote blood flow

Use the stairs if possible

 

[KDX]

Hi Everyone,
I've seen several people who miss riding bikes here. I just wanted to say I recently got myself a Cubii Elliptical. It's basically a set of elliptical pedals that you can put in front of a chair or couch at home and still get the benefit of bicycling without the risk of being away from home. I put it in front of my couch so I can pedal any time I feel like it, even if it's just two or three turns, but if I get into trouble, I can stop right away, and just lie back. I figured that was a lot safer than finding myself getting weak and shaky, and still needing to travel a distance to get home. I've also been afraid to go for a walk because of this same fear. With the Cubii, I can do whatever my body is up to at any given time. I can do several small workouts a day, which minimizes my lactic acid buildup, and doesn't stress my arthritic joints. There are several different versions of the Cubii at several different price points. Just an idea . . .

 

[KDX]

So once again I walked too far with the dogs. Once again I congratulated myself on my good walk and my improvement only to get whacked the next day (and now the next day)...

The weird thing about the pain that shows up is that it's not in my legs - which after all did the walking - it's more in my upper body - in my chest, arms, shoulders and neck. Everything above my sternum basically.

My legs look stronger - I see some muscles popping out a bit - they're probably stronger but everything else went to hell and a hand basket.

At one point I got a bicycle - I love to ride bicycles - and I worked my way up until I was riding quite a distance - my legs were getting stronger and stronger but I paid for it with enormous fatigue....

Such a strange disease...

Also consider CCI Cort. In my experience, when my body starts to notice I'm pushing too hard (usually long before my conscious brain gets the message), I jut my chin out and carry my whole body with my upper body muscles like Issie said. I think my posture problems might be due to CCI though. I did a lot of work on posture correction and straightening kyphosis and scoliosis in my teens, but still had all of the upper body pain you described from regular high school exertion. I working on strengthening my core muscles as well, so my upper body and spine don't have to do all of the work.