What is interesting about chronic fatigue with me, I get it bad toward the end of my Remicade cycle, now that I had my infusion yesterday, I am rearing to go! Well a little to much as it is almost 3 am. I took a Tramadol a little late, they make me hyper.
I am just wondering with all the PsA patients with chronic fatigue, would it not be possible that it is related to the disease? Seems like no one is coming up with solutions about it, they should come on the forums and see…
Yes, it is related and is a major symptom to look for. There are so many comorbidities with psa it is ridiculous.
But my Rheumy just quoted the official line of the Rheumatology.org website that the “experts” found no connection to chronic fatigue… Sounds like they just want to bail on the whole thing?
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Not really blowing it off. Chronic fatigue is a separate disease with it’s own etiology. Fatigue in psoriatic arthritis? With PsA your body makes proteins, called cytokines, that cause inflammation. They make your joints swell and become painful or stiff. These proteins also cause fatigue, although no one exactly why cytokines do this. When you have a flare, the cytokines set your immune system off and fatigue results. Under treatment is also a cause as are DMARDs. It makes sense that happens at the end of a cycle or the very beginning of a DMARD cycle. Keep track and see if there is a connection. It may be subtle, but I bet it’s there
Also contributing can be conditions that are common among people with psoriatic arthritis, including anemia, obesity, diabetes, depression and sleep problems.
The only clear cause for chronic fatigue syndrome at this point is that it usual occurs after having a viral infection. Researchers are trying to narrow in on the specific viruses that may trigger the disorder. Suspicious viruses include Epstein-Barr virus, human herpes virus 6 and mouse leukemia viruses. No conclusive link has yet been found but they are almost there. The most distinguishing feature seems to be rest doesn’t help chronic fatigue, and often makes it worse.
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So the take away; it is symantic, I mention chronic fatigue, not as a seperate illness but occuring at the end of the Remicade cycle, but by calling it Chronic Fatigue is set off the recording in my Rheumy’s brain [start recording playback] Chronic fatigue is… what I should have said, when I am having a PsA flare toward the end of the Remicade cycle I often feel tired and unable to get out of bed, this way It may not trigger the recorded message.
Joking asside I do think this is problem with non thinking Rheumies, versus Diagnostic Rheumies, she should be differnciating between the two diseases that have similar names and symptoms. She has never tried to suss this out, before I confronted her on it, she would give no response. A diagnosit Rheumy would be referring me to a sleep study, or to a dictor that can deal with it, instead of rattling off the written response of the Rheumatoly society.
Here is my sad story of doctors, if you want to skip, that is okay…
I have been to four Rheumies, first one was old school, not upgrading he knowledge for several years, and retired in the middle of my treatment, I was the reffered to a diagnotic type resercher Rheumy that was great, but jumped to conclusions and over reacted without doing the steps od diagnostics. She also had a problem of not keeping her HIPPAA notes and when I quit with her, she made them up.
Then my next Rehumy was very cold, by the book, not explaining med changes she was making in my meds, she was very closed and felt condesending.
Then my next Rheumy was just inerested in writing a prescription, but she did do a basic assessment. Unfortunatly, she was in a huge multi doctor facility, that made it impossible to manage, they had several layers…
She dumped me, said my condition was to complex to just write a Rx…
At this point I wanted a more concervative doctor, that is why I picked my current one.
With all the doctors it went form “it is just OA” to you have Lupus and bone cancer ( some might remember that, she wrote the wrong letter instead of IgG she wrote IgA) doctor two also said FMS, then changed to PsA. Others ran with the PsA… I was dx’ed with FMS a couple more times, I think…
The currnet doctor got this mess, Doctor 2 said I was on two biologics at once, but didn’t get any from her, so all the notes were filed in the round trash can! She had to start from scratch, which I appreciated.
So who knows at this point, maybe FMS (whatever that ends up being) WM cancer, some sort of Chronic fatigue, PsA, small fiber neuropathy, Raynaud’s phenomenon, Erythromyalgia, hypothyroid, etc.
Then there is the worthless Neurologists, Dx and send you on your way, what a frustrating occupation for them!
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No its not symantics (though it may be to us) doc’s are first scientists. Words very much matter to them. Words are their lives. They see things as black and white and look at them with blinders. If not “A” then “B” or maybe c,d , e and so on.
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Well if you look at it from symptoms thought it does fit Chronic Fatigue, there are some pieces to the puzzle not there to jump to that conclusion. I I state that I am having fatigue right before the infusion and decreasing after the infusion, that would negate Chronic fatigue that is not affected by the biologic. I do not have headaches, or intestinal problems etc.
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Interesting Jon. I can relate to the frustration regarding doctors. Here we are on the hamster wheel. I have had chronic fatigue within 3 months of my 1st major symptom.
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I find that docs don’t know how to deal with “fatigue” symptom. It’s just too vague for them - there is no “fatigue” lab test. My fatigue is debilitating and I virtually have no pain. It was difficult to get my docs to address my fatigue - I had to put my fatigue in doc terms - what percentage of my social and work life was affected by fatigue, how it was difficult to do daily tasks etc. Then I finally got recognition that it was a “real” symptom of PsA. Now I take narcolepsy med - Nuvigil. It helps a lot.
I encourage anyone who is struggling with fatigue to be persistent with their doc to get their fatigue addressed.
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Now with the official doctrine esptablished by the Rheumatoly society, it will become harder and harder to get them Rheumies to treat it, even though I am convinced it is PsA related. Why do I get sudden onset of fatigue one week befor my Remicade infusion, if it is not related? I just “self medicated” by making a nice fresh organic latte!
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Docs don’t like to deal with anything they don’t understand - make them understand! I fired several docs who said my fatigue was unrelated to PsA. Now, I have meds that help with my fatigue and I’m functioning much better. Be persistent I say! It pays off 
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Perhaps it would be best to say I feel fatigued almost all the time rather than chronic fatigue. Don’t wanna confuse the docs
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Or maybe “just really tired all the time… “ Don’t want to give them any trigger words to spook the doctors, it sets off the pre-recorded messages…
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Still having issues with chronic fatigue, this time the day after my Remicade, but also after a fasting blood test!
Slept all day today, it was body numbing fatigue, could not get up, if my life depended on it.
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Hello Jon, that is a bummer. I have some bad fatigue myself. Has that happened to you before?
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Yes, a few times a week. Sometimes they are worse then others, lasting up two two days.
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Hi Jon,
Sorry you are having fatigue issues - my main symptom - ugh! It is debilitating for me. I’m still taking narcolepsy medicine every morning and I’m also taking 10 mg prednisone/day to help with fatigue - just to get me functioning at minimal level.
I also collapse into sleep for 12, 14 + hours sometimes. I typically sleep 10 hours/night.
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Probably like me, you do not wake up refreshed either.
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I have a handful of cats. For the last week I have been in terrible pain with my back. I missed three days of work and stayed on the sofa. I have an older female cat, 17, that is my nurse cat. She is very small and the entire time I stayed on the sofa, she stayed on me. I would wake up and she would be sleeping on my stomach. If I slept on my side, she would be sleeping on my other side. If was moving around too much while I slept, she stayed on the back of the sofa watching.
It’s funny when one knows you don’t feel good. Over the years I have had several nurse cats that would stay either in the bed with us or in the chair with us if one of us were sick or not feeling well. Wife has one that takes care of her and I have one that takes care of me.
Get more sympathy from the cat than I do the wife.
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That’s so sweet! My Russian blue is my nurse cat. Last time I was sick with a stomach bug she definitely got a workout with being suddenly removed lol
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