No pain, doesnt fit criteria

[Intuition]

Does anyone here get very little headache, joint or muscle pain? I am lucky that I dont experience pain much. However, this means I am always 1 point short of fulfilling the Fukuda, ICC or Canadian criteria for whatever this condition is.

I do get the debilitating fatigue, PEM, swollen (but non tender) neck nodes, neural mediated syncope, POTS, brain fog, low grade fevers (up to 37.7/99.8) and unrefreshed sleep.

No irritable bowel or chemical sensitivity symptoms, although it seems that since being ill my haemorrhoids flare up more frequently.

Its been 5 months so far and my GP and specialist are still entertaining the diagnosis of postviral fatigue. But as we are nearing the 6 month mark, I am hoping to get a formal diagnosis of some sort (doubt it will change anything practucally though).

Also, I personally question the diagnosis of PVFS. I had a sudden onset with fevers, but extensive bloods did not reveal any positive IgM, all my cultres and swabs were negative, and my ESR was 2 even when I was initially ill, bedbound with high fevers and unable to eat. (In comparison to 2 years ago when I got a flu for 2 weeks, my esr was 58).

 

[Learner1]

This is the problem with the criteria you mentioned. The IOM criteria do not insist you have pain:

http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_ProposedDiagnosticCriteria

I don't have pain and I was diagnosed by a top ME/CFS specialist. The IOM reviewed a huge number of articles to decide on the diagnostic criteria, which were adopted.

One thing to keep in mind that though we share the same symptoms and similar biochemical issues, we have different originating triggers and a variety of comorbidities, like POTS, MCAS, thyroid and HPA axis dysfunction, which may lead to varying presentations of this disease.

It's important to get thorough testing to find treatable issues and work through them, one by one, as you can dramatically improve function by whittling away at your problems.

I have found the attached to be a good framework to work through with my doctors, and over time, we've found actionable problems in each box.

Best wishes...

 

[Dechi]

I don’t have much pain and no tender lymph nodes, or rarely. I do have headaches and migraines, and fibromyalgia points, but that’s all the pain I have. With what you describe, it looks to me like you would fit the Canadian Consensus criteria. I know I do.

 

[Intuition]

With Fukuda, I only fulfill 3/8 additional criteria.
With Canadian, I dont have pain and this is apparently mandatory.
With ICC, I dont have pain or neurosensory disturbances so I dont fulfil this criteria either.
I definitely fulfill the IOM criteria although I am wondering if this is a widely 'accepted' diagnostic criteria.

Thanks for the info sheet learner1. I need to get cracking with a good functional medical doctor.

 

[Learner1]

Thanks for the info sheet learner1. I need to get cracking with a good functional medical doctor.

That's a great idea.

My functional medicine doctor has greatly improved my function, and identified a good chunk of my immune/infectious issues. The ME/CFS specialist was able to bring in the big guns I needed, but that alone wouldn't have gotten me the function I have today.

 

[HowToEscape?]

Does anyone here get very little headache, joint or muscle pain? I am lucky that I dont experience pain much. However, this means I am always 1 point short of fulfilling the Fukuda, ICC or Canadian criteria for whatever this condition is.

I do get the debilitating fatigue, PEM, swollen (but non tender) neck nodes, neural mediated syncope, POTS, brain fog, low grade fevers (up to 37.7/99.8) and unrefreshed sleep.

No irritable bowel or chemical sensitivity symptoms, although it seems that since being ill my haemorrhoids flare up more frequently.

Its been 5 months so far and my GP and specialist are still entertaining the diagnosis of postviral fatigue. But as we are nearing the 6 month mark, I am hoping to get a formal diagnosis of some sort (doubt it will change anything practucally though).

Also, I personally question the diagnosis of PVFS. I had a sudden onset with fevers, but extensive bloods did not reveal any positive IgM, all my cultres and swabs were negative, and my ESR was 2 even when I was initially ill, bedbound with high fevers and unable to eat. (In comparison to 2 years ago when I got a flu for 2 weeks, my esr was 58).

I have neither joint nor muscle pain, and have only a slight headache, but I was confirmed as ME/ CFS by one of the leading experts in the field. Fukuda/Ccc are inexact. I would use harsh language other than ‘inexact’, but perhaps restraint is called for.

In my humble opinion, PEM plus brain fog plus exhaustion for several months after other causes have been carefully ruled out points to M.E,. having a few of the constellation of other symptoms that we have, although not all occurring in the same person, would make it conclusive. Some of the primary additional symptoms are POTS, or simply intolerance for any significat period of standing, heat intolerance, and lowered blood pressure/volume.

 

[Cinders66]

I thought Canadian said pain didn't have to be there, but was usually
.

I did have headaches and some muscle pain when my illness started but it was never a big thing for me but I am severe now and bedridden and get none at all. I have practically every other ME symptom going , with gut being the least troublesome. I would not let the no pain thing prevent diagnosis if you otherwise fit. I thought with your symptom description PEM, brain fog, lymph nodes and poor sleep gave you the four Fukuda requires anyway ?

 

[Seven7]

My cFs was gradual onset. I didn’t have pain until like year 3. Some periods of time when I am doing better I do not have pain everyday. I have days where is normal.