everything hurts:'(

[Cinderella24]

Just as i starting feel " better" if u can call it that :-/ i get worse it gets harder to move my arms legs everything like lead tingly even in my face i feellike i dragging lumps lead around is this pem ? Is this "normal " i sure dont feel it when i stand up i go,dizzy my pulse fast any one else get this ive been doctors sorry if not posted wright new to this

 

[Sushi]

when i stand up i go,dizzy my pulse fast any one else get this ive been doctors

Have you been checked for POTS? Postural Orthostatic Tachychardia Syndrome?

Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.

There is a whole section of the forum on problems with standing.

Sushi

 

[Cinderella24]

Thank u i still waiting on my refferal to hostpital andmy refferal to me clinc so dont really no much just i feel dreadful

 

[Seven7]

Hey read on poor's man tilt table test. Do it several times at different times in the day specially when feeling bad. Take pic of your results and bring the results with you to the doctor if positive. They will refer you to a electrophysiologyst for a tilt table test.

 

[taniaaust1]

Is this "normal " i sure dont feel it when i stand up i go,dizzy my pulse fast any one else

Lots of us get this, its called Postural orthostatic tachycardia syndrome (POTS), it commonly coexists with ME/CFS along with other dysautonomias. As the others said you do need a tilt table test done or a doctor to test for this in his clinic, or you yourself can do a poor mans test, your description does sound like POTS. That's a part of ME/CFS which can be treatable.

PEM is short for post exertional malaise. Malaise is based on someone feeling generally unwell, tired, weak, feeling sickly is all part of malaise.

 

[Amaya2014]

@Cinderella24 So sorry to hear what you're going through and, yes, I can relate. I've had more cognitive impairment than OI since becoming ill but sometimes they fluctuate (meaning sometimes I feel mentally close to my old self and OI gets worse).

As for the tingling, and dragging (I describe it as my limb feels like cement blocks been tied to me or it feels like Im fighting gravity). It's always been worse on my right side. My theory is maybe cause Im right side dominant...who knows). Anyways, when I first knew nothing about what was happening to me I kept pushing trying to be normal. This would lead to a total collapse of strength and I had to be assisted walking (at worst carried) to the nearest chair, bed..too often hospital ER. My cognition also slowed dramatically, I would feel extremely ill, light sensitivity, headaches...and the tingling was like electric shocks anywhere from in my head, face,fingers, or toes.

Initially, docs thought I was having a stroke or early signs of MS. I now know it was PEM and I was "crashing". Unfortunately, many doctors and ER's don't know how to recognize it and will assume you're having a panic attack or something else. They were especially perplexed when normal labs didn't show anything and after several hours I was able to regain enough energy to walk unassisted (without medical intervention). Finally, I had a big scare back in July when my right side completely shut down and would not respond to any of my commands. I dramatically cut down my activity at this time and stopped trying to be "normal" until I knew better what was going on with me.

I definitely encourage you to follow up with docs cause if its not CFS, I really wish for you to get a treatable diagnosis and a speedy recovery. Either way, I'll encourage you to listen to your body and don't push till you know what you're facing. It is very scary, but, you're not alone. Sending virtual hugs