CFS Symptoms change every day

[lowkey]

Hi guys, I hope you are all doing ok, given the circumstances we unfortunately find ourselves in.

I was diagnosed with CFS about 4 months ago. This was after about 6/7 months of symptoms. So I am almost 1 year into my journey. I am a 20 year old male, previously healthy.

I just have a quick question regarding my symptoms - I am wondering if this is normal? Or strange for someone with CFS? Maybe it is a positive sign for recovery?

Basically, my symptoms change every day. The only thing that is constant is the fatigue. Everyday I am tired, and lack the energy to do even small things. However, apart from that, something different will trouble me each day. One day for instance my neck will be very stiff and sore, but my head won't feel heavy/foggy. Within the next few days my neck will start to feel better and the abdominal pain may start for instance. Then within the next few days I will have bad headaches; the next few days I will be dizzy and my head will have weird feelings of pressure in.

So, I get most of the traditional symptoms for CFS, except I have managed to avoid joint pain etc for the most part. Except, it is very rare for two bad symptoms to be present at the same time? Can anyone explain this.

It is annoying on one hand, because I never have any clue how i will feel when I wake up tomorrow. I could feel relatively ok but have a headache, or I could feel horrible and be almost bedbound with the horrible CFS dizziniess etc.

I guess it is also positive because my worst symptoms only really last 3 days max, before they start to improve and shift to something else.

These changes in symptoms are regardelss of how much activity I do. I could rest very very much for a few days and randomly feel horrible, or have a busy day (by a CFS persons standards) and feel not super bad in the following days.

I know CFS is a very individualised journey, but I was just hoping someone could throw some light on this interesting situation.

Thanks for your time, and have a lovely day.

 

[ScottTriGuy]

I don't know what's causing your shifting of symptoms - but wanted to validate your experience as my symptoms can shift as well.

Its annoying.

 

[SOC]

I think it's pretty common for symptoms to vary day-to-day or week-to-week. Some anecdotal evidence suggests that pushing past your limits can make that worse and that finding your safe baseline can stabilize (not eliminate) symptoms to some degree. Unfortunately, that safe baseline is almost always a much lower activity level than any of us want.

Have you tried heart rate monitoring to pace your activity to stay within safe limits for your body? Many of us have found this to be an effective method of managing activity to moderate symptoms. Have you had an AT test (CPET test)?

 

[drob31]

I'm no expert, but symptoms moving around almost sounds like Lyme, like the bacteria is moving around or moving around the CNS somehow.

 

[Hutan]

Yes @lowkey, the changing symptoms are disconcerting and it's pretty hard to explain to doctors without sounding like a hypochondriac who has been overdosing on google medical searches.

I found the symptom intensity and variability was greatest in the first year or so. Things settled down a bit after that.

If you have the energy, time and interest, now would be a great time to try to track your symptoms and other relevant variables. I have finally got around to doing it in a committed way after 2.5 years. Early on, I was too sick and too overwhelmed to do such detailed monitoring. And for many of those early months I assumed the illness was not something that would linger.

I have numbered all my symptoms and add more as new ones turn up. In an excel spreadsheet, I have a column for each symptom and a row for each day. I shade the cells for those symptoms present on a particular day. I have also been tracking supine and standing BP morning and night; activity and medications and sometimes other things.

My spreadsheet has helped me determine that Florinef hasn't helped in any significant way and actually seemed to add a couple of extra symptoms. But, I noticed that the POTS went away for a day every time I took ibuprofen for a headache/migraine. Ibuprofen without a headache also fixes the POTS. While ibuprofen may not be a sustainable solution, it's interesting.

This symptom tracking keeps me amused and somehow reduces the stress of the symptoms - it helps to makes an interesting puzzle out of a crappy situation. And when I chat with my doctor I'm not just dredging my memory to come up with a vague 'oh, that florinef didn't really seem to help'.

BTW My daughter became sick at the same time as me. She was then aged 16 and, after two years, she was essentially fully recovered. I hope it works out in a similar way for you.

 

[lowkey]

Yes @lowkey, the changing symptoms are disconcerting and it's pretty hard to explain to doctors without sounding like a hypochondriac who has been overdosing on google medical searches.

I found the symptom intensity and variability was greatest in the first year or so. Things settled down a bit after that.

If you have the energy, time and interest, now would be a great time to try to track your symptoms and other relevant variables. I have finally got around to doing it in a committed way after 2.5 years. Early on, I was too sick and too overwhelmed to do such detailed monitoring. And for many of those early months I assumed the illness was not something that would linger.

I have numbered all my symptoms and add more as new ones turn up. In an excel spreadsheet, I have a column for each symptom and a row for each day. I shade the cells for those symptoms present on a particular day. I have also been tracking supine and standing BP morning and night; activity and medications and sometimes other things.

My spreadsheet has helped me determine that Florinef hasn't helped in any significant way and actually seemed to add a couple of extra symptoms. But, I noticed that the POTS went away for a day every time I took ibuprofen for a headache/migraine. Ibuprofen without a headache also fixes the POTS. While ibuprofen may not be a sustainable solution, it's interesting.

This symptom tracking keeps me amused and somehow reduces the stress of the symptoms - it helps to makes an interesting puzzle out of a crappy situation. And when I chat with my doctor I'm not just dredging my memory to come up with a vague 'oh, that florinef didn't really seem to help'.

BTW My daughter became sick at the same time as me. She was then aged 16 and, after two years, she was essentially fully recovered. I hope it works out in a similar way for you.

Thanks for your detailed answer, I think I will try and track my symptoms, just to see if I can identify any patters or anything. It seems to me that there are no patterns at all, and it is luck of the draw, but looking in depth at symptoms every day may yet reveal something.
In regards to your daughter's journey, that is good to hear. The specialist I have seen believes that thanks to my age (20 years, 19 when first experienced symptoms), and severity (mild, but still greatly impacting quality of life), my symptoms will clear up within the next 1 or 2 years. Lets hope this is true.
I wish you all the best for a speedy recovery.

 

[Tammy]

I have never ever been able to find a pattern with the shifting symptoms. The only consistent factor I have found with this illness is how inconsistent it is. I am curious if you had any viral testing?

 

[lowkey]

I have never ever been able to find a pattern with the shifting symptoms. The only consistent factor I have found with this illness is how inconsistent it is. I am curious if you had any viral testing?

i've had so many tests that i've lost track of the ones i've had. My GP and specialist seem to have been reatively thorough so I assume I have had viral testing. May I ask why you ask?
Thanks for your concern

 

[Tammy]

This is just MY opinion................so by all means you can take it with a grain of salt. I think there is a viral connection to CFS. I'm not claiming this for everyone but I think it is a strong possibility for many. Many CFS specialists will test for viruses.....especially the herpes variants like EBV and CMV.

 

[lowkey]

hmmm, interesting. Is there a benefit to knowing whether your CFS is linked to CMV or EBV? I had something which I believe to have been glandular fever a few years ago, the fatigue and malaise lasted for about 8 months, but had cleared 100% before i got ill again in november 2014.
Thanks

 

[Tammy]

Well................if you're taking a guess about what might have been the cause of your glandular fever all I can tell you is over the years I have heard more people talking about EBV over CMV. I am not up on the prescription anti-virals but I think Doctors prescribe a different one for EBV and CMV.

 

[taniaaust1]

It is very normal for ME/CFS symptoms to chop and change. With that being said though, it isn't so normal what you said with this "These changes in symptoms are regardless of how much activity I do. I could rest very very much for a few days and randomly feel horrible, or have a busy day (by a CFS persons standards) and feel not super bad in the following days."

most people with ME can connect how bad they are to how much activity they do and expect to feel bad after doing a certain amount of activity based on how they usually are with it.

I personally wouldn't relate symptoms going all over the place as being a sign of recovery. The constant tiredness you feel, the lessening of that I'd more so equate with a sign of recovering some.

I'd personally think you do have a better change of recovery then most of us seeing you haven't had it long and obviously got it milder then many do.

 

[Kpknights]

Hi guys, I hope you are all doing ok, given the circumstances we unfortunately find ourselves in.

I was diagnosed with CFS about 4 months ago. This was after about 6/7 months of symptoms. So I am almost 1 year into my journey. I am a 20 year old male, previously healthy.

I just have a quick question regarding my symptoms - I am wondering if this is normal? Or strange for someone with CFS? Maybe it is a positive sign for recovery?

Basically, my symptoms change every day. The only thing that is constant is the fatigue. Everyday I am tired, and lack the energy to do even small things. However, apart from that, something different will trouble me each day. One day for instance my neck will be very stiff and sore, but my head won't feel heavy/foggy. Within the next few days my neck will start to feel better and the abdominal pain may start for instance. Then within the next few days I will have bad headaches; the next few days I will be dizzy and my head will have weird feelings of pressure in.

So, I get most of the traditional symptoms for CFS, except I have managed to avoid joint pain etc for the most part. Except, it is very rare for two bad symptoms to be present at the same time? Can anyone explain this.

It is annoying on one hand, because I never have any clue how i will feel when I wake up tomorrow. I could feel relatively ok but have a headache, or I could feel horrible and be almost bedbound with the horrible CFS dizziniess etc.

I guess it is also positive because my worst symptoms only really last 3 days max, before they start to improve and shift to something else.

These changes in symptoms are regardelss of how much activity I do. I could rest very very much for a few days and randomly feel horrible, or have a busy day (by a CFS persons standards) and feel not super bad in the following days.

I know CFS is a very individualised journey, but I was just hoping someone could throw some light on this interesting situation.

Thanks for your time, and have a lovely day.

Low key- I can relate to your post. I also do not experience joint pain or any pain so much, but never know what is in store for me symptom-wise each day. Hang in there and trust me, those symptomless days will also unpredictably slip in there from time to time and will continue to become more common as you heal.

 

[lowkey]

Low key- I can relate to your post. I also do not experience joint pain or any pain so much, but never know what is in store for me symptom-wise each day. Hang in there and trust me, those symptomless days will also unpredictably slip in there from time to time and will continue to become more common as you heal.

Cheers for the positive words. Always good to hear in times like this.