Hi everyone, I don’t normally use social media, or internet discussion/support groups, but following my PSA diagnosis two weeks ago (06.04.17) I started researching the condition online. I should have known better than to dicuss these matters with Dr Google, and as could be expected I got scared half to death.
One sleepless night I stumbled upon this group, and I found it an invaluable resource. To be able to read the experiences and opinions of the experts, and by that I mean of course those of us touched by this condition, rather than the dry accademic articles which I found hard to relate to, or the rushed Dr’s appoinments, which although hopefully proves to help physically, left me feeling confused and alone. Being able to read all of your experiences I realised I wasn’t, and for the first time I heard through your voices my own experiences being mirrored. So to evryone here who has shared theire experiences I would like to say… Thank you.
This I would like to share with you my own experience so far with PSA.
My name’s Cal, I am 37, originally from London, but i’ve been living in Berlin for the last 5 years.
I have had Psoriasis on my scalp and elbows since childhood, and while it was irritating, it was minor and made no impact on my life. I used Cortisone gel sometimes, but it never migrated or grew. I did’t really think much about it.
When I was 28 I was the drummer in a band and I started getting shoulder pain ( uh oh I hear you all say;) I put it down to my drumming/boxing/decorating, I thought I had simply strained something. It would come and go very unpredictably, so trying to make a Dr’s appointment and catch it was a problem. Very gradually over the next 2 years the pain grew worse, but the frequency stayed the same. I started becomming unreliable, and had to quit drumming. I was becomming increasingly frustrated, I thought I was being a wuss, I had seen 3 or 4 seperate Dr’s by this point and they all said it seemed like nothing was wrong with me. Because it was relatively infrequent, and only in my shoulders, I just told myself to man-up and get on with it. I had to make some lifestyle changes: no band, no boxing, but that was it.
When I was 31 me and my shoulder pain moved to Berlin, it had become more frequent, but so slowly that it was barely perceptible to me at the time. I was 33 when my knees started to hurt, then my elbows. I started going to Dr’s again, but everytime I made an appointment for my shoulder, by the time the appoinment came round, my shoulder had stopped hurting, and I had knee pain instead. I got the impression they thought I was a hypochondriac, and I felt like I was going crazy.
The first Dr said I just had to really work out a lot, so I hit the gym under her instructions to train my upper body. The weight routine killed my shoulders, but I pushed on because she said my pain was due to the fact I had gone from having lots of muscle to relatively little and this change had caused my condition. It made it things worse.
The second Dr said it was rotator cuff injury- followed by painful physiotherapy. This was the beginning of my magical mystery tour of Dr’s in Berlin. Over the next 5 years I saw 8 different Dr, all with fantastical new diagnosis. The pain and my mobility got steadily worse, impacting on my life in everyway.
Eventually, I was at my dermatologist one day to get a new Cortisone prescription for my Psoriasis, and she asked me casually if I had any joint pain. I think I just laughed at her… Yes! She told me about PSA and recommended I see a rheumatologist. So I made an appointment with one, and FINALLY got my diagnosis.
It isn’t something you want to hear, but I was personally so bloody relieved to finally know what the hell was going on, it feels better than the not knowing. I can explain finally to friends why I have been unreliable, not been able to help with friends moving, or decorating… I am not just lazy!
My Rheumatologist prescribed me with MTX, I was going to write here my feelings so far about that, but it think I will add a separate post for that, so it is easier for people looking for experiences of it to find.
The pain hasn’t gone yet, everything is stiff, I have very little energy, but I am optimistic for the first time in ages that something might change.
Thank you all once again for sharing your expeiences… it makes a difference.
Cal
hehe