I've never had a "crash" Or "flare".

[Folk]

So it all started 8 years ago. It was just pain back then. It came slowly and grew slowly.

First shoulders (both), then neck, lower back, whole back, legs... Started experiencing a kind of allodynia, where the touch of stuff like clothes hurt. The touch is in the skin but the pain is in the muscle. It gotta be constant touch... If i touch it with my hands briefly it's ok...

The best diagnostic I got was "looks like FMS".

During all this years I've never had a "flare". I've had bad days and better days but never ever had what people decribe as a flare or crash.

4 months ago I started having horrible stomach pains. It brought whole pack of new symptoms. Now I have a giant fatigue, brainfog, more muscle pain, dizziness.

Still, my symptoms seems to be getting worse everyday even though I was able to handle the stomach pain. But I didn't have a crash.

Anyone here relates to that?

 

[Kati]

It really sounds like fibromyalgia and not so much like ME.

 

[taniaaust1]

I dont think it sounds like you have ME.. FM probably. FM people get other symptoms with it too and not just pain eg stomach issues and IBS are common in FM too. The FM people often call their brainfog .. fibro fog. Things like sleep issues and headaches can be present with FM too.

One thing about ME is it is quite variable and one notices it flare in relationship to activity.

There is a possiblity thou you may end up developing ME as a quarter of FM patients go on to later develop ME so its something which is good for you to be aware of. I suggest to check out the canadian consensus criteria of CFS (anything less then that, I wouldnt suggest you be labeled this).

 

[Folk]

Yes I've always had bowel problems but not of that kind. Sleep were always a issuse too, but never got head aches untill now. Gabapentin seems to take it away though.

Still, most FM patients claim to have flares now and then, wich I've never had.

I fit the Canadian Criteria btw... But my cortisol level is pretty high and I tolerate alcohol pretty well...

 

[taniaaust1]

Cortisol may be high or low in CFS people.

Most dont tollerate alcohol, that was almost actually added into the criteria.

 

[taniaaust1]

I fit the Canadian Criteria btw......

To fit the canadian criteria it requires crashes or flares. Here's a quote from that diagnostic criteria

2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendencey for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period -usually 24 hours or longer.

 

[Forbin]

Early in my illness, I felt immediately worse if I did anything, even laugh, but I didn't really notice the delayed worsening of symptoms for several years. I suspect this is because the symptoms were most severe early on and it was difficult work out cause and effect, especially with something as weird as PEM, where the peak of the "crash" may not occur for 24 hours or longer after the activity that prompts it. I imagine that PEM may also be harder to detect if there is already a high background level of more or less continuous symptoms.

About two years into the illness, I began to have quite severe stomach pains, like a sharp pencil was poking at the interior of my stomach. The diagnosis after gastroscopy was "superficial ulcerations" of the stomach lining (it felt a whole lot worse than "superficial"). This was a long, long time ago, but the treatment then was a stomach acid inhibitor.

As I recall, that didn't really seem to help very much. My stomach symptoms did improve slowly over time, possibly as a result of treatment for "candida overgrowth" in the gut, but it's possible that that could have just been coincidental.

At any rate, I can relate to developing severe stomach pains well after the initial symptoms of ME appear. It makes me even more suspicious of the microbiome as a significant factor in ME.

 

[Martial]

Just a heads up if someone says you have FM don't take that as a definitive cause. It is mostly just a cluster set of symptoms and there are many underlying etiologies that can trigger it. If you find out what that is and treat it then the Fibromyalgia syndrome cluster set of symptoms would go along with it.

 

[Folk]

Just a heads up if someone says you have FM don't take that as a definitive cause. It is mostly just a cluster set of symptoms and there are many underlying etiologies that can trigger it. If you find out what that is and treat it then the Fibromyalgia syndrome cluster set of symptoms would go along with it.

I'm starting to learn that. FMS seems to never be alone.

 

[Folk]

Well, when it was just pain, I used to have a lot of pain 24-48 hours after doing anything more than I was used to. Like walk longer, or dance and jump somewhere. It would be like I had just ran a marathon. Now it seems that after doing anything lightly even going to the park and stay there (alterning sitting and up) I get this horrible feeling like my legs and arms are made of bricks the other day.
It weights so much and it hurts, like I was donig some horrible exercise ten minutes before...

 

[Kati]

Just a heads up if someone says you have FM don't take that as a definitive cause. It is mostly just a cluster set of symptoms and there are many underlying etiologies that can trigger it. If you find out what that is and treat it then the Fibromyalgia syndrome cluster set of symptoms would go along with it.

To be fair, indeed, @Folk should seek a proper diagnosis from a medical doctor, preferably an expert in related illnesses.