What does fibro feel like?

[Jemima37]

On Tuesday this week I washed my hair during a shower (I never do them on the same day as it's too much for me), then dried my hair and within minutes of drying it I had horrible symptoms. Bad fatigue all over my body, heavy arms like bricks on them, pain like a horrible dull ache in my arms and thighs ans generally feeling unwell and drained. I'm mow on day 5 of this cfs crash and after it being 4 days since a hair wash I washed my hair and after drying it wham all my crash symptoms hit harder. I never usually crash for 5 consecutive days. I feel so fatigued, achy in arms, shoulder blades and upper centre of back, front ribs and even my feet. Even holding my phone up to type is hard as my arms are so heavy and achy.

I never used to get pain with cfs but I do recently. My GP suggested I could have fibro when I last spoke to her but as I can't go to a hospital to have this confirmed due to the cfs and agoraphobia/anxiety, i didn't take it any further. I never used to get pain with the cfs flare ups but I'd say pains been niggling on and off in mild crashes for months but this crash which is a bit worse than usual, pain has been an big issue along with the very heavy arms. I feel like my arms have weights on them

When I crash its usually soon after an activity bur this year I dont usually crash for long periods like this one. It's never a delayed reaction with my symptoms.

Does this sound like fibro?

Sorry to post again. I should be resting lol.

Jem

 

[wabi-sabi]

I have an opinion here, but not real knowledge. When I first went to the Mayo, I was diagnosed with both CFS and fibro. The fibro dx was based on the number of painful trigger points. But, in meeting people at the mayo and elsewhere who actually have fibro, I think I don't. Here's what I see. The people with fibro describe pain to touch, especially light touch. Like the clothing touching your skin burns terribly or setting your purse on your lap feels like getting a bruise punched.

This is not the sort of pain I have, and from your description, not the sort of pain you have. I have the heavy achy sensation after using my muscles. Often aches like I've been beaten with a stick. But the thing is-the important difference- is that our pain (ME/CFS vs fibro) is coming from having overused the muscles, like being swamped in much too much lactic acid. Now when a muscle is sore and unhappy from overuse, yes, pushing on it like a trigger point, will hurt. But that's different from a nerve misfiring and sending a message of "fire" when what's really happening is "stroking". So maybe what I'm saying is that fibro pain is nerve damage and ME/CFS pain (at least in the case of exercise like washing/drying hair) is muscle damage from lack of oxygenation or relying on glycolysis rather than aerobic energy production. You get a long lasting heavy ache until your body can clear up all the damage, instead of the ongoing fire that's reinitiated every time you touch something.

Now of course, people with ME/CFS can have nerve pain too and fibro people can have muscle pain too. Fibro people are also very tired, so they may have something going on with energy production and muscle damage as well. It' s just that you don't need muscle damage to cause terrible pain when there's nerve damage. And there's loads of other overlap. But I feel like there's a fundamental difference too. As my current doc says (who thinks I don't have fibro) not all chronic pain is fibro. Pain is much more complicated than that.

That's my current thoughts based on my current level of confusion! But it would be helpful to hear from someone that really has fibro to know for sure. All I can really say is, your pain sounds like my pain, and my pain most likely isn't fibro.

I haven't dried my hair in years!