Anyone has CFS without pain?

[Chrissy]

Hello,

I have been diagnosed with CFS 6 years ago been ill for 12 years.

I don't experience pain symptoms or just mild pain that comes and go. My main problems are disabilitating fatigue, unrefreshing sleep and disabilitating cognitive dysfunction.

Another thing that I find weird is that what I can achieve from day to day or week to week varies greatly. Some days I can be nearly as active as before and some other days I can't move from the bed or the sofa. Equally, I sometimes go entire months without seeing one single good day and am practically housebound. It makes life really unpredictable and I'm sometimes afraid of committing to things not knowing how I'll feel tomorrow let alone in a week's or month's time. It's also even more baffling for those around me. They see me behaving like a normal person with normal levels of energy so they don't understand when I say i have CFS and Im exhausted. They cannot understand the severity of the 'tired' moments.

Any similar experience anyone?

Thanks in advance for your input.

Chrissy

 

[Cort]

Hello,

I have been diagnosed with CFS 6 years ago been ill for 12 years.

I don't experience pain symptoms or just mild pain that comes and go. My main problems are disabilitating fatigue, unrefreshing sleep and disabilitating cognitive dysfunction.

Another thing that I find weird is that what I can achieve from day to day or week to week varies greatly. Some days I can be nearly as active as before and some other days I can't move from the bed or the sofa. Equally, I sometimes go entire months without seeing one single good day and am practically housebound. It makes life really unpredictable and I'm sometimes afraid of committing to things not knowing how I'll feel tomorrow let alone in a week's or month's time. It's also even more baffling for those around me. They see me behaving like a normal person with normal levels of energy so they don't understand when I say i have CFS and Im exhausted. They cannot understand the severity of the 'tired' moments.

Any similar experience anyone?

Thanks in advance for your input.

Chrissy

That's really interesting Chrissy. It's a fascinating question. Studies have been done which indicate that although many people with ME/CFS have problems with pain a significant number have none - they're just totally sapped. I remember being blown away after talking to someone like that; it's so different from my type of ME/CFS.

I am also much more constant in my symptoms. My energy levels just don't change very much - not just from day to day but from year to year. I know of people for whom they change rapidly. It almost sounds like you go through mini remissions quite a bit.

When I over do it I experience quite a bit of pain. You just feel sapped of energy?

 

[Tia]

I don't experience pain either, although I've got at back injury at the moment which I think is taking longer to heal because of being in such a low CFS state, that's painful. But then again, pain is quite a subjective word. I get severe aches and a feeling that 'everything hurts' but not the sort of sharp, stabbing sensation that I think of when I hear the word 'pain'. I'm also always 'ill' (fluey) but I wouldn't describe that as pain. I don't have tender points either.

I don't get cognitive dysfunction - except that I am too ill, tired or my body aches too much to think properly - but I don't see that as a cognitive problem. I know a lot of people get specific cognitive problems.

My main symptom at the moment, apart from low energy, is a constant flu or chest infection that just won't shift. In the summer I'll have a couple of weeks of respite but in the winter it's constant.

I didn't used to have this - I used to just have the fatigue, muscle aches and unrefreshing sleep. I was pacing myself and that was working well. Then I pushed myself too much and exercised too hard and now I've had this constant flu thing for the past two years. So I wonder if its a progression. My advice to anyone is don't do anything that makes you very out of breath - it really caused a progression for me and there doesn't seem to be any way back. PACING is key!

 

[Cort]

I don't experience pain either, although I've got at back injury at the moment which I think is taking longer to heal because of being in such a low CFS state, that's painful. But then again, pain is quite a subjective word. I get severe aches and a feeling that 'everything hurts' but not the sort of sharp, stabbing sensation that I think of when I hear the word 'pain'. I'm also always 'ill' (fluey) but I wouldn't describe that as pain. I don't have tender points either.

I don't get cognitive dysfunction - except that I am too ill, tired or my body aches too much to think properly - but I don't see that as a cognitive problem. I know a lot of people get specific cognitive problems.

My main symptom at the moment, apart from low energy, is a constant flu or chest infection that just won't shift. In the summer I'll have a couple of weeks of respite but in the winter it's constant.

I didn't used to have this - I used to just have the fatigue, muscle aches and unrefreshing sleep. I was pacing myself and that was working well. Then I pushed myself too much and exercised too hard and now I've had this constant flu thing for the past two years. So I wonder if its a progression. My advice to anyone is don't do anything that makes you very out of breath - it really caused a progression for me and there doesn't seem to be any way back. PACING is key!

Great reminder Tia! Sorry you had to go through that but hopefully your experience will help others. I think I will take a nap now - thanks for the reminder to do that!

 

[Lissa]

My experience is almost always having low level aching in my bones -- usually the biggest areas, like thighs and spine. When it gets bad, it is all over my body, like the worst flu.

I have a hard time defining it as "pain" because yes it is painful, but it isn't at all the same as an injury-type pain, or a sharp or piercing pain. It just IS. And over the years I've learned to tune it out most of the time, unless it is part of PEM and getting really bad.

So I guess my best answer is, yes - I have mild "pain" constantly, and moderate "pain" occasionally, according to exertion.

Toatlly PEMing today and feeling really really crappy --- need to get up and get an anti-inflammatory for the pain, but that feels like work!!! I haven't quite gotten up to do it yet. I need to train my cats to be service buddies... hahahahahaa.

 

[tearydawn]

Hello,

I have been diagnosed with CFS 6 years ago been ill for 12 years.

I wish there was an option for CFS with persistent pain rather than severe persistent pain. I have persistent pain that fluctuates. Always present but not always severe. Though on pain meds, I'm sure it keeps me from feeling the severity of it.

 

[Chrissy]

That's really interesting Chrissy. It's a fascinating question. Studies have been done which indicate that although many people with ME/CFS have problems with pain a significant number have none - they're just totally sapped. I remember being blown away after talking to someone like that; it's so different from my type of ME/CFS.

I am also much more constant in my symptoms. My energy levels just don't change very much - not just from day to day but from year to year. I know of people for whom they change rapidly. It almost sounds like you go through mini remissions quite a bit.

When I over do it I experience quite a bit of pain. You just feel sapped of energy?

That's really interesting Chrissy. It's a fascinating question. Studies have been done which indicate that although many people with ME/CFS have problems with pain a significant number have none - they're just totally sapped. I remember being blown away after talking to someone like that; it's so different from my type of ME/CFS.

I am also much more constant in my symptoms. My energy levels just don't change very much - not just from day to day but from year to year. I know of people for whom they change rapidly. It almost sounds like you go through mini remissions quite a bit.

When I over do it I experience quite a bit of pain. You just feel sapped of energy?

Hi Cort, Thanks for your response. Yes Im one of those that just feel sapped of energy and since having pain is part of a lot of the criteria sets to define CFS I am sometimes wondering if I could have the wrong diagnosis. But I do have the unrefreshing sleep, the cognitive problems, the crushing fatigue and the PEM, although sometimes it's not clear why Im tired as I cant link it to a specific event where I would have overdone it.

I like your idea of the mini remissions. Never looked at it in that way! Maybe it's something else to consider in my quest to get better.

 

[PamelaG]

Hello,

I have been diagnosed with CFS 6 years ago been ill for 12 years.

I don't experience pain symptoms or just mild pain that comes and go. My main problems are disabilitating fatigue, unrefreshing sleep and disabilitating cognitive dysfunction.

Another thing that I find weird is that what I can achieve from day to day or week to week varies greatly. Some days I can be nearly as active as before and some other days I can't move from the bed or the sofa. Equally, I sometimes go entire months without seeing one single good day and am practically housebound. It makes life really unpredictable and I'm sometimes afraid of committing to things not knowing how I'll feel tomorrow let alone in a week's or month's time. It's also even more baffling for those around me. They see me behaving like a normal person with normal levels of energy so they don't understand when I say i have CFS and Im exhausted. They cannot understand the severity of the 'tired' moments.

Any similar experience anyone?

Thanks in advance for your input.

Chrissy

Hi Chrissy,
I have been fatigued for 16 years doctor after doctor. I was told about 8 years ago without pain it's not CFS which apparently isn't the case. Exercise, alcohol make me so mentally fatigued. Low Blood pressure when standing. I too vary a lot and it is very frustrating trying to. Are connections.
I found the article on new SEID and this was last month that I saw it, all these years and for me finally an answer. I have changed many things added some supplements, taking 100mg gabapentin for sleep using HRV as indicator of impending stress and it has really helped!
This site is very helpful.
PamelaG

 

[Cort]

Hi Chrissy,
I have been fatigued for 16 years doctor after doctor. I was told about 8 years ago without pain it's not CFS which apparently isn't the case. Exercise, alcohol make me so mentally fatigued. Low Blood pressure when standing. I too vary a lot and it is very frustrating trying to. Are connections.
I found the article on new SEID and this was last month that I saw it, all these years and for me finally an answer. I have changed many things added some supplements, taking 100mg gabapentin for sleep using HRV as indicator of impending stress and it has really helped!
This site is very helpful.
PamelaG

Darn these ignorant doctors. Pain is common but it's just not there at all in some people.

Alcohol intolerance is very common as well.

What HRV monitor are you using?