Is it fibromyalgia or cfs?

[Sherezade]

Hello again!

So, the diagnoses that i received in august 2012 was fibromyalgia, but i had doubts because these symptoms remained after a viral infection.

I have all the symptoms of both syndromes, how can i tell them apart?

 

[determined]

Maybe others who know the current consensus will weigh in, but I think they are both part of the same dysregulation. Dysregulation of what? It seems like EVERYTHING.

 

[SickOfSickness]

Since you have symptoms of both, you probably have both, which is common.

I have both, and sometimes can't tell them apart and sometimes I'm clearer on which is which. If you haven't had them long it would be confusing.

Knowing which symptom is which illness doesn't help me. (Beyond being nice to understand a little.)

 

[Insomniac]

With Fibromyalgia, pain improves with gentle exercise.

In CFS alone (or CFS + secondary Fibromyalgia), all symptoms worsen with exercise.

Fibromyalgia is just the tender points really. The other symptoms are optional.

 

[PennyIA]

With Fibromyalgia, pain improves with gentle exercise.

In CFS alone (or CFS + secondary Fibromyalgia), all symptoms worsen with exercise.

Fibromyalgia is just the tender points really. The other symptoms are optional.

The thing that gets me about Fibromyalgia - is that if I'm in a lot of pain and not routinely practicing relaxation technicques - I tend to tense up. The more I tense up, the more I hurt... and eventually all the tender points start to hurt. And I end up with enough points to qualify for the fibromyalgia label. But, if I'm good about practicing relaxation and keep my muscles loose - I have one or two tender points and don't qualify for the label.

Seems to me that the 'diagnosis' technique for fibromyalgia needs a little work.

As it was, my mother was diagnosed with fibromyalgia even though she had all the ICC criteria to qualify for an ME/CFS diagnosis AND suffered PEM. The only treatment she was offered was antidepressants.

I also have all the ICC criteria to qualify for the ME/CFS diagnosis and suffer PEM - but don't have enough tender points hurting often enough to qualify for the fibromyalgia diagnosis and am currently undiagnosed.... although I am fully aware that whatever I have is not helped by my methylation defects so am refusing all attempts to get me on antidepressants and am pursuing treatment for methylation issues. Supposedly my doctor is helping me by not labeling me as a CFS patient - but I'm not sure I understand the benefit of being undiagnosed vs. being diagnosed with a label that isn't understood nor fully studied and is probably a collection of illnesses as yet undefined. sigh.

 

[determined]

I agree with redrachel76 that exercise does help with fibromyalgia symptoms, and exacerbates the CFS symptoms. When I'm in "fibro mode," not only can I exercise but it helps (as does meditation and yoga). When I was in my worst CFS mode, even raising my arm to brush my hair set off the characteristic weakness/fatigue that I knew so well. For me, it seems to be one extreme or the other.

 

[Sherezade]

Thank you for your inputs. I have an aunt that has been living with fibromyalgia for 20 years, and she's got sjogrens and other health issues but not cfs. So, I guess that fibromyalgia runs in my genes.

I understand also that the main symptom in cfs is PEM, but I'm not sure if i have that one. Let me give you an example and you could tell me if this is PEM: one week ago i went to Moskow to visit a friend, the first day that i arrived i was able to rest enough, but the second day she took me all around the city, and she made me eat gluten because her mom had cooked a very special meal with soy sauce! Anyway, that night i went to bed around midnight, i sweated all night and i couldn't get up until 2 pm the next day. Then i got dressed and went out until very late. The next day i was out all day without problem, and the day after that i travelled from Moskow to UK without any issue. Yes, when i arrived i was tired but not exhausted. Also, some days the temperature dropped to -16 degrees and even though i'm not very fond of the cold weather i was able to resist.

So, the fact that i couldn't get up after a busy day and eating gluten is PEM? If not, when must i expect to get PEM?

 

[SickOfSickness]

So, the fact that i couldn't get up after a busy day and eating gluten is PEM? If not, when must i expect to get PEM?

It does not sound like PEM to me (from the information given) because you were OK after getting out of bed. PEM has delayed recovery. I believe yours is delayed compared to a healthy person due to Fibro.

Also PEM can be delayed onset. Not all the time but it is one reason I think Fibro instead, from your story.

 

[Allyson]

I agree with redrachel76 that exercise does help with fibromyalgia symptoms, and exacerbates the CFS symptoms. When I'm in "fibro mode," not only can I exercise but it helps (as does meditation and yoga). When I was in my worst CFS mode, even raising my arm to brush my hair set off the characteristic weakness/fatigue that I knew so well. For me, it seems to be one extreme or the other.

raising arms over your head is an extra stress on the heart if you have POTS- some people even loose vision temporarily when they do this


Ally

 

[Allyson]

Thank you for your inputs. I have an aunt that has been living with fibromyalgia for 20 years, and she's got sjogrens and other health issues but not cfs. So, I guess that fibromyalgia runs in my genes.

I understand also that the main symptom in cfs is PEM, but I'm not sure if i have that one. Let me give you an example and you could tell me if this is PEM: one week ago i went to Moskow to visit a friend, the first day that i arrived i was able to rest enough, but the second day she took me all around the city, and she made me eat gluten because her mom had cooked a very special meal with soy sauce! Anyway, that night i went to bed around midnight, i sweated all night and i couldn't get up until 2 pm the next day. Then i got dressed and went out until very late. The next day i was out all day without problem, and the day after that i travelled from Moskow to UK without any issue. Yes, when i arrived i was tired but not exhausted. Also, some days the temperature dropped to -16 degrees and even though i'm not very fond of the cold weather i was able to resist.

So, the fact that i couldn't get up after a busy day and eating gluten is PEM? If not, when must i expect to get PEM?

it is a common error to confuse eating gluten with being upright as the cause of a flare or severe fatigue

we go out all day and eat gluten - but it may be it is the beig upright all day that causes the issues due to OI
not that gluten - or more likely high fructose foods will not cause thri own problems in us

see this link for more on OI /POTS and this whole issue

http://forum.notcrazy.net/index.php?topic=9571.0


A