New here, glad to see everyone!

[Geffy]

Hello everyone!

I am so happy that there is a board for NPF now. I have not visited this site in years and years until my recent lurking. I don't remember there being a board back then, just a ton of info. At any rate, let me tell you a bit about myself.

I first got P at the age of 9 after being knocked out and sent to the hospital by a minivan hitting me. I believe I started to get PA around 16, although I was not officially diagnosed until 20 or 21 years old. I am 33 now. I take methetrexate with the folic acid. I use Dovenex and a cream to take the red out of the P.

I do not have a very high coverage of P. It's mostly my elbows, knees, little spots here and there on my face and torso that aren't very noticable. I do have it on my scalp, but it seems to come and go. I have also had it in "odd" places. ;) Also, I have nail involvement.

The PA I find far more fustrating than the P though. This is due to the P not being so bad, not to diminish anyones feelings that only has P. It sucks in it's own right especially with high persistant coverage. The PA makes me think about every little thing I do. I have to question whether I am even capable of some things. I can ride a bike, say for instance, but for how long? What is too much? I'm I going to pull a tendon? What if I fall? Recently, I lifted boxes and thought I only pulled some back muscles. However, that is gone, but now the hip joint is hurting a little. =(

That has to be the worst part for me is the wondering what will I hurt next and what impact that will have.

I am happy to be here and hope I can help others. This is a great board due to alot problems being emotion / social / esteem related besides just the pain of P and PA.

A big Valentine's Day hug for everyone.

Geffy

[Bassetmom]

I am also new to the boards and I too have PA more so than P. I thought what you said about doing things like riding a bike was interesting. I hadn't spent much time thinking about what I couldn't do...so I would quite often do too much. The next day I pay, but I am not going to stop trying to have full days. But your comment about pulling tendons made me stop and think. I have read on the board that pulling tendons and ligaments are part of PA. I would like to know more about this. Lately, I notice that I can be walking and my ankle goes phloohey or times I can be walking and my legs feel wobbly, like they are going to give out. I thought this was from the MYX and now I am wondering if this is my tendons giving up.

[Geffy]

What is MYX? Did you mean MTX? Personally, I don't think it's the methetrexate that does the weak wobblies. It does make me tired sometimes. I have had the "damn it I pulled something" delima for what seems forever. Hell I pulled both my shoulders out doing something stupid. They work now. Yay! I only started taking Mtx for about a year.

This is what I have noticed for myself and why I have a tendency to ask myself if something is really worth it any given day. It's not something I ponder for 10 mins or anything, it is quick. Like meh, do I really "want" to wear heels today? Yes? No? Next ....

I think what happens to ALOT of people is that item "A" on their body hurts, so they learn to use item "B" more to favor "A". They end up making "A" weaker and "B" stronger. It has been my experience that this can happen very quickly as one is not thinking everytime they are moving. Just a week of not using something fully causes it. Consequently, when "A" doesn't hurt so much and one tries to use it, it has a weak feeling. It throws one off a bit. That can lead to an injury causing one to favor a body item again. It is a cycle. I use my own brand of physical therapy to break cycles, sometimes with or without the advice of a doctor as to what kind of excercises to do. If you are new to range motion exercises I would ask a docter for a sheet of how to do them properly. I have found that the key ( for me at least ) is to excercise slowly when something hurts. I always start out with 1 whatever and then 2 etc and see how I feel the next day.

Were we all have a problem is with overdoing. Life doesn't always want to slow down for us. I also refuse to give in! We just have to make choices and ask ourselves if any given activity is worth it or neccesary. I try to look at it this way.... it will help you prioritize what is "really" important for you. I don't know if the disease actually attacks the tendons / liagaments too. Would be nice to know, but I think it is a side effect of dealing with PA. Luckily, I try to do as much range of motion exercises as I can.

I hope that helps some and doesn't discourage you. Don't let it consume you. I think exercise is good thing to combat that, just be careful.


Geffy

[ouchyk]

Hi Geffy,

Welcome. :D I look forward to reading more of your posts.

Happy Valentines day to you too,
Karen

[RichJ]

hi geffy,
welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[patti2957]

Hi Geffy and welcome (back); since I've joined this group I've gotten so much more information, support and advice that I wouldn't have gotten anywhere else (Dr's office, for example:)
I don't have to worry about how much to do, I've found that my limits present themselves; I call it the 'brick wall' lol. I have learned to pace myself, though, and re-order my priorities. I do enjoy riding my bike with the kids but I have a problem with balance. (anyone else??) I worry about riding into the path of a car or slamming into one that's parked.
Take care,
patti

[patti2957]

p.s. I noticed that you're in Fairport, Bassetmom, and it made me nostalgic. I grew up in Pittsford but have lived in Kentucky since I was 16 and haven't been up there in ages. I always loved Fairport... I've thought about trying to find a cabin on/near one of the lakes and bringing the family up for a vacation. Maybe this year...

patti

[jojocat]

This community is a wonderful place to share and learn.

[Geffy]

Hi Geffy and welcome (back); since I've joined this group I've gotten so much more information, support and advice that I wouldn't have gotten anywhere else (Dr's office, for example:)
I don't have to worry about how much to do, I've found that my limits present themselves; I call it the 'brick wall' lol. I have learned to pace myself, though, and re-order my priorities. I do enjoy riding my bike with the kids but I have a problem with balance. (anyone else??) I worry about riding into the path of a car or slamming into one that's parked.
Take care,
patti

I don't have a balance issue unless you mean it being due to a weakness on a side of the body. What I did have a problem with was twinges in my shoulders. One uses alot of motions to balance on a bike. I'd be merrily going along and "twang" causing me to jerk my arm back and loosing balance. It is very fustrating.

[KarenLD]

Welcome and I am new here too. Doing a lot of reading and learning from all the posts here.

Karen

[tmartha]

Hello, Geffy, and welcome! Tendon involvement or pain where tendons or soft tissue meets the bone is called enthesitis - I first read about it in an article and the rheumatologist confirmed the info at my last visit a month ago - I happen to have it in my right wrist. It's definitely a component of pa. One way in which pa differs from ra, if I've got that right...

The article, btw, was one I got from the National Institute of Arthritis and Musculosketetal Health - great info there, and on psoriasis too. Not a lot you can see online but they'll send you a packet for free - and it isn't the watered-down-for-the-public version but medical journal stuff.

Anyway, I'm full of tangents today, to get back to the point - glad you came out of 'lurking' and said hello!

Tani

[psoragrl73]

Welcome Geffy,
Glad to see you in our "world"...take care,
Jen