So I think....I'm having a flare up in my foot. This is new for me. I usually only have issues with my hands. I'm finding this a little less obvious because it's not a toe but part of the top of my foot that is swelling up and that is causing the three middle toes to swell up.
So how long is too long to leave it before I go to the doc ?
My big fear is waiting too long, like I did originally with my hand ( even though it was before I was diagnosed). I want to avoid additional permanent damage. Of course my foot is a major issue. I would like to be able to walk.
If my hands get stiff with an activity, should I presume it's the PsA ?
I think I'm starting to figure out my limits in order to avoid further problems but it's taking me a while.
I called my Rheumy and he's fitting me in tomorrow.
Oh oh, I’m sorry this is happening to you. Calling the rheumy is very smart, and be thankful that he’s fitting you in so quickly. Yes, I think you have to assume it’s PsA and do what you can about it.
This isn’t the most optimistic article, but it does point out how quickly damage can occur in feet: http://www.papaa.org/further-information/psoriatic-arthritis-feet
There’s a thread on the go now discussing feet.
Good luck with the visit tomorrow, Dini, and let us know what your rheumy says.
I have an ongoing problem with my feet and toes. It is my understanding that sausage looking toes is a symptoms that generally only happens if you have PsA. This was the main indicator to confirm my diagnoses. I am on Methatrexate to slow down the progression of joint damage to my body and for my feet and toes. Since being on Enbrel injections I have regained some loss of movement in my toes and some of them now bend a little more again, not completely but still an improvement. Having difficulty walking is such an inconvenience to me and I hope you can avoid this problem.
I am not sure how others decide what is a flare or not. I always only considered it to be a flare when the pain level increased in every part of my body that has PsA and not just a particular part. This has left me wondering what others consider as a flare. In saying that I can relate to what your saying as when the pain is so bad in one part of my body like my feet it almost stops me from doing almost everything else.
A flare is typically defined by increased disease activity. It may be that you have fatigue, low grade fever, and some joints swollen/hurting. It may be widespread as well. But an increase in disease activity and inflammation is the short version.
I will presume it's the PsA from now on. The doc put me on anti-inflammatory meds. I hope it helps. He didn't want to give me a shot in my foot. We'll see how the meds work out.
Thanks for the input.
It's so frustrating trying to figure this stuff out and being that there is little room for error, it's really scary. The stress between dealing with my pain over the last few weeks and trying to avoid further long term damage is really taking a toll on me.
It does take time and it can be a trial and error to find which meds will works for you. You do need to avoid stress as this can makes things worse for you. Perhaps some Tai Chi, learning relaxation techniques or meditation might help. Often a visit with a Rheumy does not allow enough time for long and in depth discussions to get all your answers.
How I overcome this is I ask most questions on this site or search for information about PsA on the net. Hope this helps you to be able to figure all this out and so that it might help you to not stress as much. Dealing with the unknown is scary and I find that knowing the facts helps me to be able to make logical decisions about my meds. There may be many adjustments you might have to put into practice to be able to cope with your life now that you have PsA. It always feels so much better to me when I am doing something about my situation rather than me stressing over it or worry about what might happen. We can only deal with now, the past has gone and no one knows what the future will bring. I wish you well.
Thanks. I've been doing all that. There is extra stress at work which is out of my control and frankly doesn't help.
Yes. I've done a lot of reading. I know I have to find what works for me. I agree, if I am proactive I always feel better. I'm like that with everything.
The big thing for me is that PsA has changed my plans for the future. Still learning to accept that change.
Changed your plans how? This is concerning to me. That shoild not happen - ever. The how may change but the what shouldn't...... Now how no way should this disease EVER be given that kind of control over you. There is enough talent and experience on this board to help you accomplish anything. Okay maybe I will never be a butt double for George Clooney but anything doesn't include the ridiculous.........
Dini said:
Thanks. I've been doing all that. There is extra stress at work which is out of my control and frankly doesn't help.
Yes. I've done a lot of reading. I know I have to find what works for me. I agree, if I am proactive I always feel better. I'm like that with everything.
The big thing for me is that PsA has changed my plans for the future. Still learning to accept that change.
What I mean by changing plans is that there are things I may not be able to do. For example I typically would do a lot more physical things, things that could cause injury. I'm not afraid of that because I don't want to create more problems for myself. I just had a flare up in an area I hurt a few months ago. Which leads me to believe that the idea that injury to an area could bring on the PsA in that area is true.
So, needless to say, horse back riding is likely not a good idea, same goes for rollerblading and the jogging I usually would be doing. I used to play hockey, never got hurt with all that equipment but who knows. I guess having more children is out of the question as well.
Maybe I'm just going through a adjustment stage. Maybe I will not feel the same way in 6 months or a year from now. I'm still new at this and still trying to understand what my limitations are and what they may be.
It does get better, and you will feel different IF you determine now its fight you are going to win. 90% or better of us never become disabled although we do have to make changes. believe it or not search riding there are several here who had to put it aside for a bit and started again. you may have to change to Western instead of English so you don't do all those infernal knee bends or slow down a bit. Can't tell you about Hockey. used to play had to quit had nothing to do with PsA and everything to do with my wife (same with football)
Its extremely important to be physical and push yourself what you don't use rusts. There are some adaptive difficulties and you might search out a sports psychologist (not just for jock stuff BTW) My son ws on the Olympic Soccer Team way back when, he never made it to the Olympics because of an injury that almost took his life. Split a kidney top to bottom that set off a whole chain of events ultimately ending with a kidney transplant. But in any event I'll never forget the day the psychologist came in. I assumed it was to deal with all the trauma injury etc. NOPE this wise old (he was 30) ex-jock was there to help him deal with the fact he played his last soccer game. Something top tier athletes never quite deal with sometimes.
Our life is full of changes and change of direction and disease is rarely a part of it. I don't mean to be insensitive but get used to it (its not a Psa thing).... We raised 4 tough foster kids. Got our reward from social services a beautiful little 3 year old girl. Yeah for a month anyway it was normal. Turns out she had 4 siblings. My wife being one who has tried to keep litters of Kittens together, you can imagine what happened. Sooooooooooo we got those five raised. I'm looking at motorhomes to fulfil me dream of being retired and serving as an adjunct in various parts of North America (and even Caribean when one of my DIL's disappears and is found dead several months later across the country. A few months later my son is KIA and guess what? We are raising kids again this time a girl with multiple special needs (autistic, CP, and legally Blind) Talk about a few changes in life (understand why mom took off, wish she had found better company though)... Anyway PsA had nothing to do with it. Absolutely nothing has gone the way my wife and I talked about in high school sharing our dreams or our revised joint plan when we got together after our undergrad years and my military service. We have had a wonderful life. Who would have dreamt that one day that little three year old would be playing serena in the Rolex (Yeah she lost, this is real life after all)
I wouldn't discount having more children either........ If you want more kids, you can have them. Families are made in the heart not the Belly. (Nothing says they can't start in the belly. With Psa - you just can't take MTX before during and after being prego)
Dini said:
What I mean by changing plans is that there are things I may not be able to do. For example I typically would do a lot more physical things, things that could cause injury. I'm not afraid of that because I don't want to create more problems for myself. I just had a flare up in an area I hurt a few months ago. Which leads me to believe that the idea that injury to an area could bring on the PsA in that area is true.
So, needless to say, horse back riding is likely not a good idea, same goes for rollerblading and the jogging I usually would be doing. I used to play hockey, never got hurt with all that equipment but who knows. I guess having more children is out of the question as well.
Maybe I'm just going through a adjustment stage. Maybe I will not feel the same way in 6 months or a year from now. I'm still new at this and still trying to understand what my limitations are and what they may be.
Haven’t been on here in a while and decided I needed to get back to this board. I found it a few months ago as I was dealing with new diagnosis, pain and a tough adjustment at work. Well meaning friends have been sure that I need to quit work do the disability thing and so on. I have been in there with them at times. There was a reason to find you guys again today as I prepare to go back to work (teacher summer). I refuse to let this disease steal any more joy. Thanks ,Lamb and hang in there Dini. It does get better.
Thanks so much. I appreciate the positive words. I guess most of my fear is not knowing what to expect from PsA. I think I have a pretty good Rheumy. I also know I have to learn to express myself better if I'm having issues. I did well on that at my appointment last week.
I would also guess that the flare up in my foot and hobbling around the last few weeks isn't helping. It's not slowing me down but it's surely preventing me from doing some things for now.
I'm going to switch from jogging to biking. Maybe start visiting the local swimming pool too. I think I feel worse when I don't exercise.
I've always wanted to foster or adopt kids. I think that's great !
I'm sure I'm just having a rough patch while adjusting. I've been through some pretty rough times. I'll get through this one too. My girlfriend even told me to be tough because she knows I'm tough. It's just that some days I don't want to be.
Oh oh, I’m sorry this is happening to you. Calling the rheumy is very smart, and be thankful that he’s fitting you in so quickly. Yes, I think you have to assume it’s PsA and do what you can about it. This isn’t the most optimistic article, but it does point out how quickly damage can occur in feet: