OAlthough I knew it was coming for a few weeks, yesterday I was officially diagnosed. Before October I was so strong and independent and driven and productive and and and and and and. I feel like everything I identify as “me” has been taken from me. Everything, I hurt so much and can do so little for myself. I’ve even lost my sense of humor somewhere ,and that was my sarcastic bread and butter. I know I’m wallowing now, and I know I will not stay there forever, glad to have found this arena. One question- looking back at your journey, what would you say is a first specific thing I should be doing…what do you wish someone had told you in the beginning?
That’s an interesting question. For me, it would probably be that it won’t always be so scary and confusing.
I was diagnosed almost 10 years ago. I still struggle, I still have moments when I get myself worked up. But I have a better understanding of what the disease is, as well as a better feeling of how it’s impacting me as well as its progression.
I had a really long day today. I volunteer with an animal rescue group. My day included my own cats, my fosters, as well as some new babies.
Welcome! For me it was that a physical therapist can help you how to move and what things you should and shouldn’t do… i don’t know how fit you are, but i wasn’t and now I’m terrible…
Oh and remember that the people who are doing OK are out living their lives and are not online sharing their stories… especially with side effects of drugs… you’ll only read the worst stories online… (this group is better at that there’s good stories as well)
In happy to hear you got diagnosed so fast! Now you can start looking for your perfect drug. Let’s hope it’s the first one you try! But don’t worry if the first one doesn’t work there’s a lot of options!
Hello and welcome!
When I was diagnosed I was told to do leg-lifts and other very dull and painful exercises. Having been very active for most of my life I couldn’t see the point of simply raising and lowering my legs etc. Consequently the muscles around my knees wasted very quickly which probably contributed to joint damage and in retrospect I should have kept to the PT programme. So my advice is to get a good physical therapy routine and stick to it, even if it doesn’t seem to be doing much good. Inactivity makes everything worse, even fatigue, surprisingly.
That sense of loss is a very common experience. It can ambush me even now, 6 years after diagnosis. It’s not a straight run, not for me anyway, I think there will always be times of sadness and even despair but they don’t last. When I have a sense of humour failure now I think of it as a sign that I need to get serious about how I’m living my life and what more I can do to take control and make things work out for me. So in a strange sort of way the bad times seem to serve a purpose.
It is very possible to live well with this disease and all those qualities of yours aren’t lost, when you’re ready they’ll come back with a vengeance so watch out PsA!
Welcome, and thanks for sharing the nice flowers!
You’re already doing everything so much better than a lot of people in getting diagnosed so quickly, finding this support site and seeming optimistic about getting on with treatment!
One thing I don’t think would be a good idea is to waste any effort or money on “natural” remedies. There are pills, herbs, lotions, etc., that might lessen the symptoms a little, but nothing will stop the disease progression. I tried so many natural things, hoping and praying they’d work and all that did was delay getting the “real” meds. I do take fish oil and CoQ10, but those are mostly for my heart and blood pressure.
It WILL get better. You won’t necessarily be the same you that you were (though some people do), but even if you are not, you can eventually get to like the new you. It WILL get better.
The people here did tell me that, and it made all the difference to me
Other than that, for me it was to get the right combination of medications - be persistent about that, and start even the smallest exercise program. It will be one step forward and two (or ten) back, but life with PsA is s marathon, not a sprint. Success in my exercise program is turning up!
Welcome here, Rachel! We have another Rachael here who I know will welcome you as well. You certainly have asked a great question to get the conversation started, and I second everything that people have been saying.
A couple of points that I’ll make are:
- Find a rheumatologist who will give you the most aggressive treatment that your severity of disease warrants, and go with it. The research is clear: early and aggressive treatment gives the best prognosis.
- Fear this disease. Don’t fear the treatment.
- With the right treatment, and determination to beat this thing into submission, your chances of your old self coming home are really good.
One of the most difficult parts about being diagnosed and beginning treatment is the time lag between when the treatment starts and time it starts to work. Around here, we call that “the gap”, and it is not a fun place to be. But looking at it positively, if you’re not diagnosed, you’re in a never ending tunnel. Been there, and it is hell.
Again, Rachel, welcome. We’re glad that you joined us.