I was just diagnosed a month ago but it hasn’t been very bad so far. Just some joint pain with no swelling, and a lot of fear. My mom has had severe RA since she was a teenager, so my idea of arthritis is that it really sucks. I wasn’t compelled to write an introductory post before now because part of me was in denial and another part of me felt like I didn’t have anything interesting to say to a bunch of people who were dealing with much worse.
Well, My eyes just popped open from sleep and I couldn’t move my left foot! I checked the time, and it was 12:36am. I immediately felt nauseous because part of me knew that this not good. Another part of me thought that maybe it’s nothing and my foot just fell asleep, lol! So I sat up and reached down to touch my foot, expecting to feel it swollen to twice its size, but it felt completely normal. Within about a minute, I could move it again, but it still has a strange feeling. I keep moving it and now I’m afraid to go back to sleep because it will become stiff again. Maybe I’ll stay up for awhile.
Well, I guess this is my introduction. Hi everyone! You are a great bunch of people and I’m thankful to have a place to go where others understand.
Welcome to the group! It seems as though oddball stuff goes along with PsA, including temporary but very real pain and inflammation.
It's not too surprising that your idea of arthritis is that it really sucks, but it also makes you more realistic, and aware that the disease is not limited to joint pain. You'll find you get a lot of really great support here, and welcome again.
Welcome to the group! I get weird things all the time. As long as my limb hasn't fallen off I don't worry too much lol
Keep in mind that there is much better treatment starting early than what your mom had. I was dx at age 10, in 1982, and there was pretty much only aspirin. Now there are so many treatments it's pretty miraculous to me to have all these choices.
I see your username is mamato3boys, how old are they? I have 2 boys ages 12 and 15. It's tough raising kids with PsA but it can be done! :)
Thanks for the words of support. My boys are 2, 4, and 6. They bring us lots of joy.
Yes, we are lucky to have these new meds. My poor mom’s body has been ruined. My doctor said that I don’t need the meds yet (he only prescribed an NSAID which I haven’t used). But now I keep worrying that maybe my joints are being damaged without me knowing it. Yes, having a family member with the damage helps me to realize how serious it is. I have pain without swelling, and he said that if I experience morning stiffness that lasts for awhile, or swelling, then I would need MTX or biologics. I have an appointment with a different rheumatologist to get a second opinion, but I have to wait until April. It seems like all of the specialists around here who have a decent reputation have long wait times for new patients. Errr.
Good going with the second opinion. Unless your doc has X-ray vision he has no idea whether or not you have joint damage. From what I’ve read so far, early and aggressive treatment is now the preferred way to go. When it comes to managing something as complex as this I think it’s a good move to see the specialist early.
Welcome to the group; I am sorry to see you here :-P. It’s been a huge help to me to see other folk with the same strange symptoms that I have!
Have fun chasing your children! I have 3 myself, all boys.
MamaTo3Boys said:
Thanks for the words of support. My boys are 2, 4, and 6. They bring us lots of joy.
Yes, we are lucky to have these new meds. My poor mom's body has been ruined. My doctor said that I don't need the meds yet (he only prescribed an NSAID which I haven't used). But now I keep worrying that maybe my joints are being damaged without me knowing it. Yes, having a family member with the damage helps me to realize how serious it is. I have pain without swelling, and he said that if I experience morning stiffness that lasts for awhile, or swelling, then I would need MTX or biologics. I have an appointment with a different rheumatologist to get a second opinion, but I have to wait until April. It seems like all of the specialists around here who have a decent reputation have long wait times for new patients. Errr.
I always love hearing from others with three boys. Yes, I didn’t understand why he said that the pain alone wouldn’t cause damage. Obviously, there is something causing the pain. I am glad to have this forum. I am reading about people getting MRIs, and I’m thinking, this guy X-rayed my hands and tells me I’m fine. Plus, once there is damage, it can’t be reversed. That’s the most frustrating thing. I’d rather not take the scary drugs just for prevention. I wish I had a crystal ball. Anyway, enjoy the day!
I got baseline X-rays when I started with rheumatology that did not show joint damage. She started treating me right away. Granted, I was in really bad shape. Sausage fingers, and toes, other swollen, inflamed, painful joints, etc.
I don’t get it. Pain=inflammation, right? It seems you and I are thinking the same thing there.
My boys are a bit older, 16,13,and 8. I think this is the best age. I’m having a lot of fun with them, and it’s kind of neat to see how they have grown and are trying to mature. I guess it’s the same with girls, but my totally biased opinion say that boys are awesome!
I’m glad you say that you are enjoying your boys now that they are older because sometimes I think that it couldn’t possibly get better than it is right now! Boys are great, and I’m always happy that they have each other.
Hi Jim. Thanks for your comments about yours starting off mild. Yes, I’m in the process of finding a doctor now. I got in with one this morning, but didn’t like her. I got the idea that she didn’t believe me, plus she said things that weren’t exactly accurate. She said that having PsA before psoriasis is “extremely rare”, and that PsA and psoriasis onset around the same time is rare (which is what happened to me). I think I’ve read that the former is around 15% of cases, and the latter is also around 15%. She acted surprised that my derm isn’t treating my mild psoriasis with anything yet. She did say that the extreme swelling is what causes the joint damage and that pain alone should not damage the joints. I know that if I have a good doctor on the back burner then I’ll have somewhere to go if it gets really bad.
The only place the 15% figure is widely stated or believed is on a group of consumer med site that extensivley quote each other. :Up to Date is the common one (Its run by Walter kluwer who have their hands in a bunch of them). Other than your disagreement as to rare (and the fact psoriasis is a tough Dx) she's pretty accurate. There is little to no relationship to pain and joint damage with Psa. The bulk of pain in Psa is the result of a form of Tendonitis call enthesitis. It is severe, very painful, and a challenge to control but it is not joint inflammation or damaging (there is that kind of inflammation however thats what rheumys treat)
The appearance of P and arthritis at the same time or out of order (which leads the 15% figures) may or may not be PsA More often than not it is one of the 200 or so other types. leading the pack is (and far more common) is reactive arthritis. Far more common too is the appearance of Psoriasis after another form of autoimmune or rheumatic arthritis. The names terminology etc vary widely from country to country an in the USA widley based on medical school, residencey and age of the Doc. Effective treatment is far more important than "naming" the disease. Effective treatment is a time consuming trial and error process with little relationship to the "name of the disease"
As a result your "personal research" just as is mine along with others experiences should ONLY be a basis for intelligent questions with whomever you decide on to be your doc.
I had psoriasis for years a few very small places since I was very young and since it was not something anyone could see I never really thought much about it until the pain started.
When the doctor explained to me that it was PaA I started doing some research and found out that only 8% to 10% of the cases are men. The rest are all women so I am not really sure how it happens but it did.
Another important thing to remember is any time you have the stiffness and pain it is because of the joints swelling.
Finding a good Rumatology doctor is not easy. Over the past 13 years they also had me on Metheltexate which is a cancer fighting drug.
I have been through everything you are about to start going through right now so it really brings back so many bad memories for me of the day's when I was disabled. Today I am fine and I can do everything I used to do.
One side note I have always believed God as a plan for all of us and part of his plan was me getting the PsA because while I was sitting home disabled I started thinking that I might never be able to go back to work outside the home again.
I started an internet business and today 11 years later I work right from my home and making a great living doing it so there is a reason forever thing that happens in life.
The day the one doctor gave me the pain pills I explained to him I did not want to take them but he looked at me and said someday you will thank me for giving them to you and he was right.
When the pain becomes to much you will find yourself in the exact same position I was in and I happy to have something just to make the extreme pain go away for a few hours.