Latest Update and Moan

So I've only been diagnosed for about 4 months. The last time I went to the rheumatologist, amount 6 weeks again, they changed everything, I got a steroid injection and put on Sulfasalazine which made me quite ill so I really had to slow down my build up to the max dose. Of course that means regular blood tests, which I don't cope with very well, never have because of this and a mess up at the doctors I ended up having 3 in 2 weeks this month. One due again next week. I have about another 2 and a half months until the Sulfasalazine starts to show any benefit and the steroid injection didn't seem to help much. The one that I did feel helped, although it might seem strange, was running. Although to begin with it can be painful on my ankles, it felt like it was strengthening them and after a run I feel energised and ready to get on with things. Although, the rheumatology nurse I saw today didn't feel that running is the best idea due to impact on my joints. However, I am not prepared to give this up having found something that I enjoy and makes this whole situation feel a little bit better for me. Before this appointment I was feeling extremely motivated, with a whole list of things I wanted to do and achieve and ideas of going back to the office to see some friendly faces. After the appointment today I feel back at square one and almost as though for the rest of my life I am going to have people telling me what I have to do because I have PSA.

I have a great support in my fiancée, she has been absolutely fantastic throughout. However, it hasn't been the same from the rest of my family. It's kind of been brushed off and a just 'get on with it' part of life but that's not exactly how it is for me. The little things about having this are starting to get me done, like planning lots of things for 21st birthday celebrations this year knowing that I may wake up in agony on the day making all of it a lot harder than it should be. And silly things like packing to go for a weekend away but having to make sure I have all the tablets I might need. Just last weekend I went away for the weekend to wake up on the Saturday morning in some of the worst pain I have experienced since the beginning of this, I still went away of course, but it put the whole weekend down and obviously made simple things a lot harder.

I have also being having a lot of new symptoms, such as very sore hands that mean it's painful just to open a bottle, sore blood shot eyes and skin problems.

I know this is just a lot of moaning and I should probably be grateful for what I do have, especially some many others are going through this too, I am grateful but so much seems to outweigh that at the moment.

It can take some time, and trial and error, but you will get under better control, and it will smooth out some.

But in the meantime, you said that you are having sore blood shot eyes? Please get checked out at the eye doctor. There are a lot of eye problems that can be associated with this, and some of them can cause damage. That's something to keep on top of. If you don't have an eye doctor already, ask your rheumy for a recommendation.

That’s good to know, I told my rheumy today, she just told me to get some eye spray or artificial tears to give them some moisture.

You can use artificial tears until you see the eye doctor, to soothe your eyes. If you are using them more than 4X a day you should use ones with no preservatives. I would still get a thorough eye exam though.

I understand about the running. I am a marathon runner and have been sidelined since last fall. I really miss it and wish I could start up again, just too painful now.