I joined this board years ago when I was first diagnosed, went away but recently decided to come back... Anyway, I was wondering about other people's views on the fatigue. I have never experienced what has been described as delayed fatigue or fatigue occurring a day or so after exercise. The fatigue I have is pretty much constant. It doesn't matter whether I spend the whole day relaxing around the house or running around packing as much as I can into the day. I still feel exactly the same. I can feel a normal tiredness on top of the general fatigue if I've been studying or something and when I get ill, again I feel an illness fatigue on top of my usual fatigue.
Every time I read something about CFS it says about post-exertion fatigue and having never experienced it, I wonder if anyone else has been diagnosed with CFS without having this kind of fatigue?
Hi Kiya, it's true that the kind of fatigue you experience isn't at all like how a very large majority of CFS patients describe it. With us, it's a very exertional type of fatigue...the more we do, the worse we feel and it's not just fatigue, but a kind of sickness reaction. We feel sick with flu-like symptoms after overexerting ourselves.
My advice would be to investigate further into other possible causes for your fatigue before settling upon a CFS diagnosis. A CFS diagnosis should be viewed as a last resort after all other possibilities have been eliminated. I don't know if you've done so already, but getting tested for things such as Lyme Disease, sleep disorders, anemia, etc are crucial.
I get extra fatigued from overexertion but I'm pretty much tired all of the time. I'm on concerta & I'm still exhausted. Do either of you really crash hard if you go on a quick trip somewhere? I've been doctoring out of state & these fast 2-3 day trips are making me ssooooooo tired.
My fatigue can be both. Most of the time its just plain old life-sucking fatigue, but I definately have the post exertional, too.
Lately, I seem to be going through remissions and exacerbations. I did very well in December (for me anyway...probably 25% of pre sickness energy). January was awful, I spent the entire month on the couch and never left the house. Feb - slightly better, March - pretty good. Then at the end of March we went on vacation - I did great on vacation (but I always do). Since we got back...major exacerbation! Most days I feel completely exhausted the entire day. I am hoping for a remission soon!
My Fibro doc thinks I am starting to get better because of the pattern forming. Last year, I barely left the house. Fingers crossed.
Delayed exhaustion or several days later is one of the best predictors for CFS. I have this. Dr. Bell explained that when you have CFS, it's a predictor of the disease. It happens because of CFS.
I just wish my GP at the time had been better informed as to what CFS is. Then I might not have been diagnosed with it. It's been a constant battle ever since to find out what's really wrong.
I was diagnosed with CFS in 2004 on the basis of: unexplained tiredness for 5 months and normal blood test results (CBC, U&Es, LFTs, thyroid function).
I had no viral illness prior to developing the fatigue (or at least, not that I was aware of). I've never experienced delayed fatigue. I have what I call my background tiredness, which is with me all the time whatever I do. I then have tiredness associated with working or exercising or whatever that is naturally worse at the end of the day, but is alleviated with rest. I sleep a good 8 hours a night.
My symptoms at the moment are: fatigue, dizziness, pins and needles (which come and go), shaking hands (also comes and goes) and cold hands and feet.
It doesn't sound like you have CFS. I sleep about 11-12 hours. I could never, ever get by on 8. I can't exercise and I can't work.
What kind of exercise are you talking about?
Alot of doctors do not understand CFS at all. They say you have chronic fatigue--but that is not the same as CFS.
Do you have results of your thryoid? I have to take Synthroid because when I got CFS it knocked my thyroid out of control. But it took 3 years to get my thyroid under control from what damage the CFS did.
Exercise like walking mainly, plus my job involves being on my feet all day (I'm a radiotherapist). I used to have more hobbies, but studying and working means I'm far too exhausted in the evening to do anything but sit down and relax.
My TSH last time it was checked was 3.5 - it appears to be rising but still "normal", so no joy there with any kind of treatment.
I don't think my previous doctor understood CFS at all. She "diagnosed" me with it definitely - it unfortunately appears throughout my medical records for the past few years. Damn doctor. It's part of the reason I haven't had other things excluded.
I have no idea whether I could have fibro. I'm seeing my new doctor on Monday and I'm really going to press for more diagnostic tests to rule things out.
Hopefully, this will help you in the right direction.
I'm giving you lab tests and these are to rule out other problems first. Your doctor needs these done first before a diagnosis of CFS. Maybe you've already had some done, I know like thyroid.
The reason for the lab tests is to rule out other illnesses that can cause symptoms like CFIDS.
Have you had a Complete Blood Count (CBC)?
In CFIDS the CBC is usually normal and illiminates many illnesses, such as anemia. Also if it's abnormal, it could be due to abscesses, blood disorders, certain malignancies, and other disorders may also have abnormal complete blood counts.
Another test is Sedimentation Rate (Sed Rate).
Most serious illnesses have an elevated sed rate, and physicians use that to separate disease states from normal. The normal range of sed rate is from 10 mm per hour to about 30 mm per hour. In CFIDS the sed rate is rarely elevated above 30 and in many instances is extremely low. In patients with CFIDS, it is common to see a sed rate of 0, 1, or 2 mm per hour.
Have you had all of these done? I have more labs here that you'll need to have your doctor do if you haven't had them to rule out first before a diagnosis of CFS can be made.
I've not had a CBC for a couple of years now, so I think I'll start with asking to have some screening bloods as well as another TSH and other stuff. ESR (sed rate) isn't available here unless the GP suspects osteoarthritis (don't ask, it's to do with the stupid local primary care trust). A bit like my GP can't refer me for an MRI, only a consultant can.
Thanks for your helpful reply. I'll see if I can get some blood tests done.
