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

[Arnie Pye]

When I over-do it, I feel a pressure that seems to feel like it's pushing down on my head.

I've had that exact same feeling!

Another similar problem I sometimes have is feeling as though my head is being pushed hard from behind and I am using all my physical strength and also willpower to keep my head up. Yet, if I look at myself in a mirror there is no evidence of this struggle and my posture looks "normal for me" (which means I'm slouching as usual).

 

[Barry]

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!

No, actually when I re-read it, it is highly ambiguous! .

 

[aza]

Hi guys, I haven't been diagnosed yet and I could have Fibromyalgia and not ME, but I had an episode on February 2018 that was very scary and my symptoms have been different ever since. Suddenly my hands and feet became numb, then heavy and finally weak and I immediately crashed in bed. I also felt very hot and as soon as I could walk again I took a shower. Since this episode, I have peripheral neuropathy in the form of burning skin on hands, arms, feet and sometimes shoulders and back. I also have numbness whenever I stay in the same position for a short period of time, 5 minutes. Sometimes I'm washing the dishes or hanging the laundry and I have to stop and sit, otherwise I'm sure I'm going to fall down. I used to walk many miles and had no muscular pain or exhaustion, but since this has happened I feel really ill after a brief walk, my joints hurt, my muscles burn, my skin turns red. I'm dreading going out.

 

[StellariaGraminea]

It's as though someone has increased gravity.

Your description sounds exactly like what I experienced in first few years, especially like someone had greatly increased gravity and it was a struggle to get 10 feet to the bathroom. Wasn't constant.
During the worst period of time, even holding a mug of tea with one hand was not possible, I had to use two. I could hold an empty mug with one hand but not full. The weight of cutlery felt like it had massively gone up, couldn't get through a meal holding it. Jaws would be exhausted by chewing. Took forever, had to lie down and rest multiple times during a meal (from sitting up in bed).

I agree I don't think these kind of symptoms are really well elaborated anywhere. it's why I like reading patient accounts of their experiences rather than symptom lists which are extremely vague.

 

[shak8]

Hi guys, I haven't been diagnosed yet and I could have Fibromyalgia and not ME, but I had an episode on February 2018 that was very scary and my symptoms have been different ever since. Suddenly my hands and feet became numb, then heavy and finally weak and I immediately crashed in bed. I also felt very hot and as soon as I could walk again I took a shower. Since this episode, I have peripheral neuropathy in the form of burning skin on hands, arms, feet and sometimes shoulders and back. I also have numbness whenever I stay in the same position for a short period of time, 5 minutes. Sometimes I'm washing the dishes or hanging the laundry and I have to stop and sit, otherwise I'm sure I'm going to fall down. I used to walk many miles and had no muscular pain or exhaustion, but since this has happened I feel really ill after a brief walk, my joints hurt, my muscles burn, my skin turns red. I'm dreading going out.

I met a woman yesterday who has some similar symptoms (the numbness, burning, redness) and she was diagnosed with this condition: erythromelalgia. I think you would have to have redness of the skin as well as the burning sensation. You did mention redness once.

She was initially thought to have fibromyalgia.

The article below states that it takes some effort to diagnose. But there are some tips for self-management you might try as well as pursuing a diagnosis. Hope this helps. I am not a doctor (just a disabled nurse).

See https://my.clevelandclinic.org/health/diseases/22752-erythromelalgia