I finally went to see my physical therapist yesterday. I had questions about my feet - he was the one who realized my feet were flattening and my heel was drifting to the right last summer, when he was examining me about my scoliosis. So he had made me personal arch support plates. And being ridiculously naive as I am, I couldn't see the connection between my feet and PsA until last month (I was diagnosed with PsA on November)! I mean, how couldn't I see that? My feet hurt, my ankles felt swollen (although I had doubts about it because I couldn't remember what they looked like), and the shape of my feet were clearly changing! Well, as it turns out, my ankles really were swollen, and both my ankles and my small joints at my feet were affected by PsA. My pt said he could see and feel it when he touched my feet, because my joints (small joints) were much more visible. So I'll be starting physical therapy on Monday.
Anyway, I had opened this discussion topic for something else. I realized that the thing people new to this condition mostly and firstly complain about is the fatigue (including myself). And my pt made the reason for the fatigue we feel very clear, so I thought you guys might like to hear/read it as well. So, it turns out, the fatigue is how the body tries to protect itself from the inflammation. Because the more we move, the faster our metabolisms work. And the faster our metabolisms work, the faster our immune systems attack our joints. So, in order to slow down the inflammation process, the body shuts itself down! Basically, it's out body trying to protect itself from itself :D Must be tiring all on its own :) So, that's how my pt explained it. I don't know if there are other explanations.
I presume the fatigue caused by PsA and fatigue caused by fibromyalgia are essentially different. But you made me wonder now. I will ask this on monday (I have a physical therapy session) if I don't forget.
LL, don’t beat yourself up over missing the connection between PsA and your feet. Changes can happen gradually, and there always seem to be reasons for this ache and that pain. You know, a new pair of shoes, walking too much, the heat, the cold yada yada. And then a little further down the road you suddenly realize that hey, this may all be connected.
Funny what you said about the way your feet look now. My feet had been bothering me for a couple of years, on and off, and then more on than off. After I was diagnosed, the rheumatologist did a prednisone trial on me – to see the extent to which my symptoms were as a result of inflammation. (Answer: all of them.) One morning I woke up feeling pretty good, and as I was about to stand up, I looked down at my feet and I realized that THAT was what they used to look like! Sounds stupid but it was a TA-DA moment. I grabbed my phone and took a picture of them. I have shown several docs that picture, and they have all given me the “oh dear” look. And yet, I didn’t realize that it was happening at the time. If you are ridiculously naive, so am I!
Seenie, you made me smile as always - I'm hoping that TA-DA moment comes soon for me :) I have been looking at my feet rather obsessively for the past two days, and I think I have a vague memory of the way my feet used to look like. And I'm pretty sure my ankles were not this chubby :) They look like I should be at least twenty kilograms heavier than I am now!
I think we become sort of blind to the way we look at one point. We see our feet, our hands, our eyes, our face every day... So I think at one point we stop "really" looking at ourselves. Like a painting or a poster on a wall that has been there for so long, you are surprised when you realize that poster is still there :) Maybe that's why it takes so long.
Wow, thanks for the explanation about fatigue, ladylazarus! That makes so much sense....my rheumy had told me what was happening--that my tendons and joints would get sore (more sore) more quickly and from doing things that typically didn't cause soreness. But I already knew that! Oh, and if the treatment works, you WILL notice a huge difference in how your feet/ankles look. Mine are so skinny now--my hands, too. But I think for some of us the damage came on gradually, so we didn't notice. I'm wishing I had taken pics of my feet so I had a record of how they used to look. I'll take pics of my "good" feet so if they ever get puffy again I'll have proof. ( I sort of hope that never happens! :-/ ).
Oh, and so does the explanation mean that if we get more rest we'll feel better? Because, despite all the fatigue I never got more rest or sleep because I'm always so busy. But, also lack of movement made me so horribly stiff and painful I didn't feel any better from it. Did he have any recommendations how to rest and not feel worse afterwards?
That is a very good question Grandma J, because my PT also told me that I had to exercise EVERY DAY if I wanted to save my joints. That is my biggest responsibility. The best treatment involves 1- the medicine, 2- physical therapy and 3 - daily exercise, preferably something that incorporates the lungs/breath, like yoga or pilates. He said he especially recommends pilates but I always found pilates a little hard - long before PsA. So I'm planning on finding a gym and doing yoga twice and pilates once a week.
And about your question - does it mean we'll feel better if we rest -, I think I should ask that too on Monday. Because now I come to think of it, the fatigue is the body protecting itself, but exercise is what helps the joints, so how can that be? But then again, when the fatigue hits you just cannot move, no matter how much you want to exercise, so maybe the fatigue determines how much you rest when the inflammation is at its worst? And when it goes down a little you can start moving again. Anyway, I will definitely ask that too, because I'm curious now :)
I completely agree with you about the body losing the plot thing :) I think yours was the best explanation! :) I know what you mean by lassitude - that was a word I didn't know so I looked it up, but come to think of it, did I really have to look up a word when I "know" what it means? I was terrified of feeling that way again. I was fine for 2 weeks. For a moment there I thought I would never be sick again. But here I am, cursing at my feet and knee, "a little tired", and thankful that this time my SI decided to give me a break.
Oh, and today my right knee decided to join the PsA party as well! I'm really hoping this pain is because of the pressure all the limping I did yesterday put on my knee, thanks to my ankle, which is - surprise! - perfectly fine today. But just like I feel with my ankles, it feels both swollen and empty! It's like the connection is lost between the two parts of my leg. And it is sore. It's not "I can't take this anymore" type of sore, but more like "oh my god this is so annoying" type of sore. It hurts when I'm walking and makes me limp, and it throbs when I'm sitting. And my brother thinks it is a little swollen, because of course, I had to show it to someone else to be sure! Geez...
Sybil, I love your explanation, too. Yes, our bodies are confused--the fatigue is a "feeling" we get due to our wacky immune systems attacking us. One thing I can say about my fatigue--I have had the completely exhausted type of fatigue where I felt so worn out I just wanted to collapse and disintegrate into a little pile of ashes. The other fatigue would happen shortly after I got up in the morning and I'd get tired taking a shower. My limbs felt tired and I was sleepy. I rarely took a nap, but if I did, even though I felt extremely tired, I'd only sleep for about 10 minutes! It feels so different now that I'm on Enbrel. No fatigue at all! But what I was going to say about all that fatigue and not being able to sleep, my body or brain must have been so confused--it's confusing me just trying to figure it all out!