I have a question for every one of you out there: does PsA play hopscotch with your body and levels of pain? By that I mean, does it pop up at the oddest moments and then NOT show up at the oddest moments too?
For instance, I've mentioned that I just started a new job. It's rather physical. And I've had some serious problems with exhaustion and pain, despite only working 3 hours. Yesterday was the hardest day of all, thus far, at work. Physically awful, left me very sore in the SI area and the neck. So, naturally enough, I was expecting a hellish day today. Nope. Neck is a bit stiff and sore, SI joint is ouchy but today my fingers don't ache, my elbows and knees are quiet...so what gives? Plus it's raining, too. And chilly. Usually all three are BIG problems for me. But only the shoulders are grumbling today.
Why are some days truly awful and then other days, that should be awful, peaceful? Rhetorical question at best. But does anyone else experience this, especially situations when you expect the worst and it's actually a quiet day?
I work three hours PER DAY, that is, not three hours per week.
Hello Petunia Girl, you are not alone. I am the same way. I think it is one of the many mysteries of PsA. This disease seems to have no rhyme or reason. It never fails to surprise. Not only that but works today does not work tomorrow. I think sometimes that is why our family and friends think we are nuts or making this up. Only someone with PsA could understand what we are talking about. So when you have days where only your shoulders are grumbling you are thankful & enjoy it to the fullest. :-) Glad to hear you are feeling better today.
Elizabeth - it's so god to hear from you. I'm glad that you're doing better today. Thank God.
It's interesting that what works today doesn't always work tomorrow. I wonder what that's about? Shouldn't the medicinal properties work the same way on the same disease each time? Or does the disease actually worsen at times - thus the flares, and thus the lesser potency of the medicine?
I'm so glad you understood what I was talking about. Like you say, seems like others think we're a bit screwy when one minute we're fine and the next, we're whammied. I must admit, it puzzles me too. I honestly thought I'd feel awful today but although my shoulders hurt, today my finger joints feel FINE. Which is GREAT.
Well, as they say, I guess it makes sense to take each day as it comes and be thankful for the good ones.
I agree with both of you. Yes there are days when I can go through several different areas of pain in the same day. I think that is why my rheumy has started asking me about pain in this way: Sometimes, Never and Yes. Yes means it is painful ALL the time. I think he got tired of my answers being all over the place, lol.
if you could answer that question Petinia you would have the cause of PsA. Yes it does ramble about and attacks at any given time . That's why a lot of us dont get a diagnosis for years.
I am on the same page, in the same paragraph with all of you!
No rhyme nor reason, and that makes me crazy as I am the type that has to understand everything on some level! I am starting to just let go of some of that as I realize that there is nothing logical, predictable or controllable about this! Everyone here has helped me to take that tiny step!
I really do think barometric pressure is an underlying key, sometimes I feel worse when a storm is building than I do when it is actually raining! The cold and damp just destroy me everytime though, and A/C and fans blowing over me never fail to get me, I get so stiff and sore I can't straighten up! We are in a very humid area, so you just have to use A/C and dehumidifiers, yet have to be careful not to get it too dry or you get respitory or sinus infections, not something I can do now that I am on Enbrel, that's a big fear of my GP.
Hope you are feeling better, Petunia Girl, always good to talk to you and listen!
Yes, SK, barometric pressure is a key factor, as is the cold. And a cold rain is the worst! A/C blasting too. I even find pain in my fingers when I grab a cold can of soda. And yes and yes and yes with the stiff and sore and not being able to stand up straight! I think I'm so accostomed to it now that I no longer think of the pain. It's like you said, it's there all of the time, so it's kind of masked until it goes completely blewie.
Oh, SK, you have double trouble, what with trying to keep the atmosphere dry but not too dry! That's a tough order to fill!
Do you find that summertime is less painful for you? I know that I do, even with the crummy rain. It's bearable. (Ssssssssh, I'd better not say that too loud, as I wasn't feeling that way last week...)
Same here, SK, I really enjoy our talks too. You have TONS of knowledge and you're nice and fun to talk to. Lots of other people here who are great to talk to too.
Oh, I am always better in the summer, no question! Not only is the weather better, but you are up and about and moving more, but then you hurt less, so you can move around more! I know we are supposed to have this daily work out plan, but honestly, if I Felt well enough to do all that, I wouldn't be sick!!!!!!!!!!
Having trouble with holding cold drinks, cold water of the swimmimg pool, extreme pain just picking up a bag of frozen veggies, fingers turning white, then perhaps blue, that is a description of my Raynaud's, it also affects entire hand and wrists. When you find your self a good rheum, make sure that is on your list of questions for them!
As for not being able to stand up straight, remember Carol Burnett playing Mrs Wiggins, well that is the 'waddle'!
Always great to talk to you Pet! Love the laughs and the intellect!
Oh yes barometric pressure changes are horrible. Living in FL I can tell you it is a fact and not fictitious that this causes more pain and stiffness. I though am one of the strange ones that does better in the winter time. The humidity really gets to me and my thermostat is stuck on high to begin with so that doesn't help.
I too enjoy the discussions with SK and Petunia and a lot of others here as well. so much knowledge, caring and understanding.
Aren't we the characters? That Petunia Girl and I could get into a lot of trouble together, though I think that these days we would come under the catagory of 'all mouth and no action'! LOL, was not always the case with me!
Oh, Florida wrote the book on storms, I have lived to tell my tornado story a few times, but down there every single rain cloud is a water spigot (spelling?) or tornado, blue skies one minute, turn around, turn back and a black was is nearly at you!! Of course up here in MD are the sheer winds, tornados too, and being surrounded by all these big old trees is lovely until the winds start to howl! Had sheers snap roots of a 5 or 6 story Elm by the house and had to take it down in a hurry, we were on vacation at the time, good thing we got home when we did! That was back in the day when I could still ride in a car and go on vacation!
Okay Alma, your turn!
Chilly and rainy here today and the little kids want to play outside. Joy of joys. My knees were fine until I went out IN the rain, and now they're excruciating, but my SI joints which nearly kept me in bed today are feeling better. PsA is predictably unpredictable. I'm just glad to be in a place where it's hopscotching from one place to another instead of everything hurting tremendously without a break!!!
Oh my, I never know what to expect anymore, but I know that normally if I have a really busy physical day, its 3 to 4 days rest, and sore all over, but once in a while their is nothing. What I have noticed affects me the worst is the weather. I always thought oh ! summer is here I will be in less pain......not in the last few years....no rym, no reason, comes when it wants, leaves when it wants, sometimes it stays overnight, or moves in on a part time basis, other times it rents a room for a while, and travels everywhere. Mine is in love with me and has decided to marry me !!! Gezzzzzz!!!I do not remember saying YES I DO!!! Just alittle light humor !
Hi Sun Angel,
Nice to hear from you! This is a very good analogy of this disease, loves us, even though we have no warm, wonderful feelings in return, yep, I've had a few of those, could eventually get rid of them though! LOL! Talk to us when you can, we need all the humor we can get!
Hi Sun Angel!
Nice to hear from you! I like the humor!
Hope you are feeling well!
SunAngel; know what you mean i feel your pain. Love the humor; we all need to chuckle, thanks!
I have this all the time. Generally I have pain everyday and my PSA is symmetrical all the time. There are some days the pain is just unbearable to where I cry in frustration and just want to rip my limbs off. Other days, the pain is mild and I can walk normally and type and don't feel so exhausted. I don't know why this happens, but everyday is different and I've just gotten used to it??
Hopscotching is a great way to describe. I can be limping or hobbling one moment, then can suddenly walk normally, then sit down and have shooting pain in hip sockets etc. Then the hip pain goes, only to be replaced by pain in hands and wrists. Sometimes the pain is shooting, sometimes it is like a toothache but in your joints. This week was the first time my shoulder joints bothered me since this first major flare. Go figure. I think that this is easier to deal with than consistent pain in the same spots that never subsides (at least from my point of view). Glad there are people in the group that totally "get" this and understand. It sure makes us an enigma for those around us without the disease. Geez, I've always wanted to give off an air of mystery, but this is not what I meant. LOL
Sorry guys, having a massive game of hopscotch today. Had a virus over the past few days but not sore. Today though --- UGH. Been overcast and raining for 4 days and supercold yesterday. Today my back hurt so much that I was walking sideways, like a crab. Just boom, out of the blue.
Oh SunAngel, so well put!!! Your persistent little suitor who won't let you be. Don't we all know the man. In fact, I hate to tell you this but he's been courting us too. I hope you're not too upset to hear of his infidelity.
And that IS concerning that the summer weather isn't making life any easier for you recently. I'd like to know what that's about.
I don't know about you, nym, but bad SI joints are much more painful than bad knees. Well, at least your SIs were on good behavior.
SK, why you're right, our mouths could get us into a weeeee bit o' trouble. If we're not too exhausted. Huh, that's not too fun of a rider to add to the clause, is it?
Sorry, SK but Florida weather does NOT sound like fun!