'Heaviness' - could it be used as a measurement?

At the other place I started a thread (Feeling very heavy - symptom that rarely gets mentioned) with this post:
"
I have come across anecdotal mention of this symptom but never seen it included in any diagnostic criteria I can remember.
It is something that I regularly experience a lot, particularly as part of PEM.
At the very beginning, I struggled to push the duvet off me in bed.
Nowadays, it is a sure sign that I am overdoing it as everything becomes much heavier. My whole body, particularly my legs; anything I try to lift feels as if it's quadrupled in weight.
It's as though someone has increased gravity.
I'm 5'6 and weigh 8stone but at times it's like I'm more than twice that.
Just wondered how common it was and what reason there might be for it?"

I think 'lead limbs' (or something like that) is included in Jasons PEM diagnostic questionnaire.

But I was thinking about this again.

When I am in bed I sort of can tell how good/bad I am depending on how heavy the duvet feels (particularly in the morning/when I wake up).

So I am not talking about heavy limbs after 'exercise' or 'mollasses fatigue'.

I just wondered if maybe this 'symptom' could be used (particularly in the severe/very severe) to gauge severity/fluctuation/PEM. Not sure how.

 

I have it really badly in my arms. They feel like lead. I think it’s seen in neurological illness

 

Lead legs has always been one of my symptoms (or should that be "signs"? Get muddled over nomenclature).

Way back when I could still get out on my own, and still drive, and even attend (part time) university, it was one of my most nuisance things. Prob because I was doing more - it was first sign of PEM for me.

Now it's changed somewhat, as can walk so little my legs don't get tired in that way - rather like I don't use my asthma inhaler as I never "exercise" sufficiently to get breathless.

 

I had this symptom mainly in my arms for a long time. I could lift my arms above my head but I couldn't keep them up for more than a second before I had to drop them. In my case the problem was massively reduced by getting my iron levels optimised and my Free T3 level improved.

 

Molasses limbs is another term sometimes used for the heavy limbs feeling that you get in ME/CFS.


Very recently it occurred to me that the cause of the ME/CFS heavy limbs sensation might be inflammation in the dorsal root ganglia (DRG) along the spine in ME/CFS. DRG inflammation is known to exist in ME/CFS, as autopsies have found inflamed DRG in more than one case. Indeed, Dr William Pridgen theorizes that fibromyalgia and ME/CFS may be caused by HSV-1 infection in the dorsal root ganglia of the spine. Varicella zoster virus also persists in the DRG.

The dorsal roots carry sensory information rather than motor information (motor function info is carried by the ventral roots), so any disruption to the functioning of the DRG is likely to affect your sensations rather than motor function (your ability to move limbs).

Diagram showing a dorsal root ganglion, which is
one of many found along the length of the spine
​

Since the dorsal root ganglia lie not far beneath the surface of the skin on your back, I started experimenting with high amounts of far infrared radiation on my back, which is anti-inflammatory. Far infrared penetrates deeper into the tissues than near infrared. I have a ceramic far infrared heater which has three 800 Watt porcelain ceramic elements (similar to the model shown below), and produces lots of radiant heat. These type of far infrared heaters use the same ceramic heating elements as found in infrared saunas.

My initial impression is that daily exposure to this far infrared on my back for several hours (I do it while working on the computer) does reduce the heavy limb feeling. It may have even reduced brain fog, but I am not sure. It's also lovely and warm in the winter.

MASTER TS 3A far infrared heater, with 3 x 800W porcelain ceramic elements
​

Other brands of far infrared ceramic heater include Fireball, Sealey and Rhino. Note that these infrared ceramic heaters are not the same that the ceramic blow heaters you can buy (infrared ceramic heaters emit only IR radiant heat, they do not blow hot air).

Far infrared ceramic heaters are also different to the cheaper quartz halogen far infrared heaters: ceramic heaters run at a lower temperature than quartz halogen, so as everyone knows from Planck's law of black body radiation, this lower temperature will produce a deeper wavelength of infrared. Quartz halogen infrared heaters glow red, but ceramic infrared heaters produce no perceptible glow as they have a lower temperature (though you will see a very faint glow at night if you turn the lights off).

Besides this possible therapeutic use, I find the far infrared heat from these ceramic heaters very nice. Because it penetrates tissue, it seems to "warm your bones". And unlike regular central heating, far infrared heat does not produce that grogginess and drowsiness that stale centrally heated indoor air results in.

 

This has been a issue for me since menopause. I also feel it in my arms.

 

When I over-do it, I feel a pressure that seems to feel like it's pushing down on my head. My limbs always feel heavy - it's an extra effort to type, walk etc. Raising my arms above my head for just a few seconds makes my arm muscles burn.

 

To my medically uneducated brain, there is a rational explanation for this. I think the sensation of 'heaviness' relates to the body's capability to apply energy at the required rate (i.e. required power). If you go to lift anything, a bike say, and you are fairly fit (powerful therefore), the bike feels quite light when you lift it. If you have been ill, or just simply got older, and your body is therefore much less powerful than before, then the bike likely feels much heavier. I don't have ME, but as I've got older I find exactly this, and have pondered on it. True for lifting a full kettle, opening jam jars etc. But the point is I don't feel weaker as such, it feels much more like things are heavier, done up tighter, but I know they are not, so it must be me.

For people with ME, where the very illness itself is about much reduced power (i.e. reduced capability to apply energy at a given rate), then I think this characteristic is going to be very evident. Including perception of own body weight - carting our own bodies around takes non-trivial power itself.

 

For me the heavy molasses limbs does not derive from a sense of weakness in the limbs, or an inability to lift things without getting muscle tiredness. It's an overall feeling and sensation of "heaviness" in the entire body, but particularly the limbs, independent of my muscle strength. It's a hard feeling to describe, and the "heaviness" does not mean that the limbs feel heavy in terms of weight. The feeling is almost a cross between heaviness and numbness of the limbs.

 

But what you describe here is different to what I'm talking about ...

 

That seems to be the case. But when we talk of the "molasses heavy limbs" of ME/CFS, what sensation does that actually refer to? Maybe it means different things to different patients.

The sensation I have, which is a bodily and limb feeling of "heaviness" and slight numbness is present whether or not I do any physical exercise, although its severity varies from day to day. In fact, exercise generally seems to lessen it.

The heavy limbs feeling I have is not the same as muscle weakness, which is a symptom I can also relate to. When my ME/CFS was more severe a few years ago, I was unable to do more than around 5 press-ups, due to rapid muscle exhaustion. But that rapid muscle exhaustion from exercise is something different to the heavy limbs sensation I have, which is present whether I use my limbs or not.


When I first caught my ME/CFS virus, I noticed it caused a slight but permanent numbing of the skin throughout my body, a numbing of of the tactile sense. The feeling of limb heaviness I get also involves a slight numbing, but a numbing of sensations from the muscles rather than the skin. So my muscles and limbs constantly feel heavy and slightly numb.

 

The big difference is that, for me anyway, this is not constant. So it's not muscle weakness. One minute I can lift something fairly heavy without much of a problem, then another this 'wave' of heaviness comes along and it's like it's glued to the floor. But it's not fatigue or tiredness as it's not gradual.

I think the thing that makes it more noticeable is that for occasional brief moments of 'almost normality' everything (including me) feels so much lighter (which is why the thing with the duvet is so weird).

So I'm not really talking about what is called the 'molasses heavy limbs' thing exactly.

I think this is possibly another example where the medics have put a name to a symptom without really investigating what it is.

 

This would be the same as for my wife (the one with ME). To me what you describe fits with both what you and I say. Note I am not talking about muscle weakness per se, but simply about restricted energy flow into those muscles. The difference is subtle, but crucially different. A damaged car engine might be akin to "muscle weakness", but that is not what I am talking about. When my wife has been able to pace herself well and is in an "up phase", then she is able to do quite normal things for a little while. But her available energy supply is very limited, and rapidly drains, after which she then operates in restricted-energy-flow mode, and everything is a huge effort and she says she feels like she is made of lead.

The only analogy I can come up with, is as if there is a tiny fuel tank near to an otherwise-healthy engine, but there is a restriction in the line from the main fuel tank. If the tiny tank is full, then for a short while the engine can do its normal thing ... until that meagre supply runs out. Then it is limited to the restricted flow from the main tank. Once the engine is stopped for recovery time, the tiny tank gets a chance to fill up again. (For any engine geeks, the tiny tank might be akin to the float chamber in an old fashioned carburettor). It makes no difference how healthy the engine is, if it's energy flow rate is restricted, then it cannot operate properly. An engine converts chemical energy to mechanical energy, much akin to a muscle.

ETA: Forgot to say, that I imagine the switch over point may be when the body flips from aerobic to anaerobic respiration, and maybe is doing it much too prematurely, but I don't know this.

 

I also get this as a definite warning sign that I've overdone it. My limbs are generally heavy, but gloriously, sometimes, it lifts and I feel lighter and do things... Too many...

I'm determined to master pacing, and just STOP before the heaviness returns, and I'm lost to PEM. @Barry 's small fuel tank theory fits my pattern. My problem is, it's like driving a fast little sports car after being stuck with an old clunker.

So hard to stop. If only we had a fuel gauge.

 

That's a good analogy. I think what you are talking about there is described in the CCC as "rapid muscular fatigability".

This is what I experienced with doing press-ups. When I would start doing the press-ups, full muscle strength is available, at least on the first press-up. But by the time I got to the fifth press-up, it felt like my muscles had turned to jelly, as there was a rapid and dramatic loss of strength, or at least a loss of energy to supply the strength.

I think your analogy will probably turn out to be quite accurate: I suspect we will accumulate more and more evidence of a restriction in the energy supply at the cellular level in ME/CFS, including muscle cells. So in ME/CFS things look relatively normal at tick-over, but as soon as you put your foot on the accelerator, so to speak, and increase your exertion levels or bear heavier loads on your muscles, you find that the fuel cannot be supplied fast enough to meet demand.


But I differentiate the rapid muscular fatigability (which is only observed when physical exertion is engaging in) from the general bodily and limb feeling of "heaviness" and slight numbness, which is present all day. This heaviness is not a very pleasant feeling; instead of feeling good within your own body, your body always feels like it's just been hit by a truck.

I don't think this molasses heaviness feeling directly relates to energy or lack thereof; my guess is it may derive from sensory nerve dysfunction (such as the dorsal root ganglia dysfunction hypothesis proposed above), creating a sensation of heaviness and slight numbness in the body and muscles.

Perhaps it might also derive from muscle inflammation (given that muscle tissue is typically virally infected in ME/CFS).

 

I think it could derive from any neurological impairment, if it’s a signal thing which I think it is, along with other sensory changes as you say numbness etc. Sometimes my limbs feel like their only half there to my brain too which is differto touch sensation loss.
Re DRG I think it’s a recognised thing outside of ME and more researched in sjogrens. I don’t think it has to be only explored in autopsy but other research in us hasn’t been done. It’s an interesting finding but I don’t how much of our symptoms it explains when other people who have DRG but not ME aren’t sharing all our symptoms, i don’t know which they do get. Cort Johnson recently did a blog looking at this i cannot remember much of it , but it’s only been found in a few autopsy ME cases AFAIK and I don’t see anyone particularly looking into this in ME unfortunately.
The only thing I would say regarding sensation vs movement (in reply to your DRG post ) is for me they’re linked so heaviness sensation like being in a lead cast accompanies difficultly moving.

 

When I was Googling on the subject, one illness where dorsal root ganglia crop up is complex regional pain syndrome (CRPS). There is a new treatment called dorsal root ganglion stimulation for CRPS. It involves the surgical implanting of an electrical stimulation system into the spinal area, which sends mild electrical impulses to the DRG.

I wonder if this DRG stimulation technique might also be useful for the pain of ME/CFS, in cases where the pain is severe; if the pain in ME/CFS also involves the dorsal root ganglia, then perhaps it might help.

Yes, as with many ME/CFS physical and mental symptoms, the symptoms are all superimposed, so it can be hard to disentangle them.

 

Interesting. I also don’t get pain, so if they with DRG can move feeely and are in pain and I have only bad heaviness and weakness, can DRG be behind it....

 

I first read this to mean that you had another wife without ME as well as the one with ME. My reading comprehension is getting worse... Then I realised you were distinguishing between yourself (without ME) and your wife (with ME). Doh!