Hi All - I am a new member here - just stumbled onto this support group.
I think I was unofficially diagnosed by my RA doc around March 2013. I say unofficially because I don't think any blood test came back positive. RA doc did some sort of hip/back x-ray to check something and that was negative too. I have always had really bad dry skin but I don't think I've officially had psoriasis. So I am kind of confused about it all, however, the RA doctor thinks it is PsA.
One thing I am not confused about is the pain. I feel like I have a high tolerance for pain - because I've always been in pain - just from a very active life…playing as a kid, karate classes, running track/cross country, playing football and baseball, yard work, love going on long walks, biking, and kayaking. I'd say about September 2012 the pain got to be unbearable and was constant.
I'd had a desk job the previous 5 years, however, lost my job in May 2012. I took a more physical position working in a warehouse because it sounded like a good/fun opportunity & the job market was/is less than stellar. I thought it would be great to get out from behind a desk/sitting all day and be on my feet and be active again. That is when it all hit me…I noticed when I woke up in the mornings my achilles tendons felt like they were going to burst as I walked to the restroom & it took my body about 1-1/2 - 2 hrs to really warm up to function that day. During the day - I was so busy I didn't have time to think about how bad I felt but the moment I sat down to rest or grab a bite to eat, I had a hard time getting up and had to warm up my body to move again. After work I was so exhausted and in so much pain, quite a few times I felt like I had low grade fevers, body aches/chills that I just wanted to get in bed without supper. I felt so bad I couldn't do any exercise, no walking for fun, no biking or kayaking …it was miserable. This went on for months until my wife and I went to the RA doc and got the diagnosis. I didn't really get it though - I never really understood arthritis - I thought you just could pop a few advil and be on your way.
I really don't remember what the RA doc first prescribed - it was a couple different sulfur anti inflame. meds that seemed to work with the pain at first but ate up my stomach so I had to get off of them. I felt like the pain was better on them but my body just felt numb - it was a weird feeling, almost like I felt nothing. The next meds he prescribed were Methotrexate and Plaquenil but after reading about those and getting freaked out, I gave up on the meds, cancelled my future RA appts - my wife and I were expecting our first baby (son) in a few months so we decided I should just quit the physically demanding job and care for our son at home. We thought that would be easier on my body - low impact - maybe I'd feel better. We have a beautiful & healthy little boy who is the apple of our eye & I have so much fun taking care of him, however, it is hard with PsA. It was back to the feeling of having a hard time getting through the day caring for my son and once my wife got home, I wanted to crawl into bed. I finally gave in when my GP looked me in the face and said quit eating aleve and masking your pain - you have a disease that isn't going away - go see the RA doc again.
I wrote the RA doctor that very day I saw my GP and started on the Methotrexate, Plaquenil, & Folic Acid. I've been on those since 12/31/2013 and I don't feel any improvement at all - shouldn't I feel improvement by now? I had some Diclofenac (from a couple herniated discs) that seemed to have helped take the piercing RA pain away during the day but I think they are messing my stomach up a little. Here recently I have had horrible flare ups in my wrists, hands, knuckles, fingers…the pain is so bad, burning it feels like they are on fire or something is eating away at the bones at night…so bad I haven't been able to sleep. I was getting like 2 hours of sleep a night because the pain was so bad. I then started taking some percocets I had left over (from a couple herniated discs) just to sleep at night and get me through really bad days. The RA doc just gave me a script for a little prednisone too & last night was the first night I was able to sleep without percocets. I only slept 5 hours but that is a success for me. I am in pain but not too bad - bad enough that I couldn't get back to sleep and decided to get on here. I'm happy with 5 hours of rest though at this point.
So right now I am taking Methotrexate (5 pills/1x week), Plaquenil (2 pills/day), Diclofenac (2 pills/day), Prednisone (2 pills/day), and Percocets for really bad days/nights until I run out of them. I feel like this is crazy to be on all of this medication. It is hard for me to believe because I never used to go to the doctor or take any meds except for my yearly sinus infection. The really scary part is I still don't feel good, still in pain, hard to move, feel like meds are making me sick to my stomach - its hard to take good care of my son & I feel like I am not fun. I feel like I just get by somedays. I feel like some days I don't even know if I can take care of him. I feel like a bad provider to my wife because I had to quit my job and now I am having a hard time taking care of our son. I have a hard time keeping up with the cleaning and yard work anymore…its bad. I'm doing my best & she understands - she's great…she's a true angel. I've thought about getting a part time job to help out with bills but I don't even think I could work because of the pain and exhaustion. I haven't been biking in over a year, barely kayaked last year, been able to take a few short walks…just scary because I don't feel like the same person anymore. Thank God for my faith, my lovely wife & beautiful son getting me through.
Sorry to ramble so long here. Glad to be a part of the group.