Why is it important to “Differentiate Your Arthritis”? Reason #4: Living with an Autoimmune Arthritis disease means living with fatigue that is often debilitating. The fatigue is caused by severe inflammation that occurs throughout the entire body, not only in the joints. For those who think all types of arthritis only involve joint pain this fatigue can be misunderstood to be laziness or a lack of desire to participate in activities. The fact is, when the body is attacking itself due to an Autoimmune Arthritis disease, fatigue is a major symptom.
Don’t rename it, reclaim it. Define it and differentiate it from the norm. Then they’ll understand.
World Autoimmune Arthritis Day 2012
Hi Louise
I need a pamphlet from a known organization that explains what you said about the fatigue associated with PsA. I have told my family why I am going to lay down at least 50 times and they still say things like, "You'll get rest when you die." My husband says, "where are you going?" we live in a very small house and the only rooms down the hall are the bathroom (which i do spend a lot of time in thanks to I.B.S.) but the other room is the bedroom, he says "are you going to bed?"
That phrase makes me feel like he thinks I'm lazy.
Hi Yvonne,
I did a little Google search and found this
http://www.arthritis.org/disease-center.php?disease_id=21
http://www.psoriasis.org/psoriatic-arthritis/diagnosis
These both list General Fatigue as one of the symptoms of PsA. As we all know, it can be more that that. Sometimes I get so brain melting tired, it is all I can do to keep my eyes open.
I hope this helps you a little.
Cheers,
Louise
Yvonne said:
Hi Louise
I need a pamphlet from a known organization that explains what you said about the fatigue associated with PsA. I have told my family why I am going to lay down at least 50 times and they still say things like, "You'll get rest when you die." My husband says, "where are you going?" we live in a very small house and the only rooms down the hall are the bathroom (which i do spend a lot of time in thanks to I.B.S.) but the other room is the bedroom, he says "are you going to bed?"
That phrase makes me feel like he thinks I'm lazy.
When I was having my flare ups and people were asking me what is wrong I would tell them its the arthritis and most people would go "Yeah I have arthritis etc etc etc " and they have their remedies then I usually tell that mine a different type I have to have injections and they will respond with "oh there is injections for arthritis?" , I so agree about the fatigue and the muscle pain, to me it is sometimes more troublesome than the joint pain and it is good to hear others have it so debilitating too as you can not explain to anyone just how bad it feels
wendy said:
When I was having my flare ups and people were asking me what is wrong I would tell them its the arthritis and most people would go "Yeah I have arthritis etc etc etc " and they have their remedies then I usually tell that mine a different type I have to have injections and they will respond with "oh there is injections for arthritis?" , I so agree about the fatigue and the muscle pain, to me it is sometimes more troublesome than the joint pain and it is good to hear others have it so debilitating too as you can not explain to anyone just how bad it feels
I agree with Wendy in that fatigue is definitely more debilitating to me that any other symptom. I've had generalized fatigue for at least 10 years. Fortunately I have very minor stiffness and pain, and the skin psoriasis only showed up in the past 2 years. I've told my rheumy, on nearly every office visit since being diagnosed with PsA 6 months ago, that I think I could live with the aches and pain but the fatigue is literally killing me. I believe fatigue has damaged my overall health, was much of the reason for losing my business, has kept me from working full time since Dec 2009, and ultimately cause my marriage to fall apart 2 years when my spouse began to think I was “being lazy” and just “didn’t want to work.” The truth being I’d take any type of job and work schedule over feeling so fatigued.
I really hope this support network can help me get answers to questions which my rheumy doesn’t seem to know or understand about this fatigue issue.
wendy said:
...fatigue ... is sometimes more troublesome than the joint pain... ...it is so debilitating [that] you can not explain to anyone just how bad it feels
Shawn- I've also found that friends will think I'm avoiding them. I don't have the energy to spend time, and the mere thought of spending 6 hours at the park makes me tired.
You may want to look up the spoon theory, as a way to explain what the disease can do, and how it impacts your day to day life.
Shawn said:
I agree with Wendy in that fatigue is definitely more debilitating to me that any other symptom. I've had generalized fatigue for at least 10 years. Fortunately I have very minor stiffness and pain, and the skin psoriasis only showed up in the past 2 years. I've told my rheumy, on nearly every office visit since being diagnosed with PsA 6 months ago, that I think I could live with the aches and pain but the fatigue is literally killing me. I believe fatigue has damaged my overall health, was much of the reason for losing my business, has kept me from working full time since Dec 2009, and ultimately cause my marriage to fall apart 2 years when my spouse began to think I was “being lazy” and just “didn’t want to work.” The truth being I’d take any type of job and work schedule over feeling so fatigued.
I really hope this support network can help me get answers to questions which my rheumy doesn’t seem to know or understand about this fatigue issue.
wendy said:
...fatigue ... is sometimes more troublesome than the joint pain... ...it is so debilitating [that] you can not explain to anyone just how bad it feels
The fatigue is overwhelming and impossible to explain to others, even my family doctor didnt listen for years! While I don’t wish this disease on anyone…I do wish they could feel for one day what we have to overcome. I have been told that I am “milking” my disease when I want to lay down. I can’t remember not having to push through fatigue. I am too tired for that now and I have recently decided to respect and listen to my body. I’m in my 40’s and I finally don’t care what anyone thinks when I want time to take care of myself. We all deserve to rest without judgement from others…I know that we all would rather be participating in life than watching it from the couch…why the heck would we choose that?
I can identify with so many of the discussions and anecdotal stories. It’s so helpful to know that others are going thru similar issues and symptoms caused by PsA. I could probably spend all day reading and responding based on what I’ve experienced over the years. I have to remind myself to NOT write everything that I’ve experience from the 20+ years of seeing doctors for various symptoms and the many meds I have been prescribed that have never seem to work.
And I’m still not sure PsA is the full diagnosis for all symptoms I’ve been living with for years. For example, when I told my rheumy of a specific symptom which had plagued me for over 25 years suddenly disappeared (literally overnight) after starting on prednisone, she said that it isn’t a known symptom related to PsA and shrugs her shoulders saying she can’t explain.
So I am hoping by following the discussions I can get more specific answered to why I have specific symptoms, and what I can do to help myself get over them ---especially fatigue! – or at least manage them better.
Read the spoon theory. I can relate to being tired all the time, but are Lupus and PsA even related?
They are both autoimmune, lupus and PsA. As such, they share certain things in common, including fatigue, joint pain, etc.
My consultant doesn’t get it either, when I explain about the fatigue he tells me to step up my exercise! I know exercise is indeed a way to boost energy but I know the difference between the draining fatigue of an inflamed state and tired because I need to do more. My partner doesn’t need to be told I’m drained he says he can see the fatigue in my face so knows when I need to rest 
Does anyone know of a reputable online medical source that has a REALLY good definition of or explanation for how this fatigue is different for anything else?
I've read thru quite a few definitions online from most of better known medical web sites Many don't even close, a few are closer to describing what I feel, but so far none of them have really captured the essense of my fatigue.
From our Newbies’ Guide –
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/6339595:Topic:167340
Yes, the fatigue--take it away and there is overall improvement in muscles and joints--or is it the other way around? I haven't figured that one out yet. But, sorry I didn't read through the comments as closely as usual (I'm babysitting and the kids are about to wake up) but did anyone say it can actually make their heart feel tired? Maybe that doesn't make sense, but before Enbrel I felt like my heart couldn't take the symptoms of PsA much longer. It was draining. Wow, how things have changed! (Thank God.)