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Feeling Better?

December 31, 2009 2 comments

I haven’t posted much this month, partly because it’s December and I’ve been busy and partly because I am feeling better.  Yes, that’s right, I don’t want to jinx it by writing it down but I am feeling better.

The bone-crushing fatigue I’ve had for almost all of 2009 seems to have lifted, I’m no longer struggling to sit and stand by lunchtime. I can get my work done in the evening and manage housework at the weekend.

None of my joints are too bad either, my ankle still isn’t great and the snow and ice have made it clear how much range of motion I’ve lost in that joint since it started flaring up several months ago, but it’s not screaming agony to walk down the stairs and that has to be a good thing.

The other reason I think I’m feeling so well is I’ve just had an appointment with the rheumatologist, and I always seem to make a miraculous recovery about 2 days before I visit the doctors. Anyway, I trudged through the snow, for a 5 minute consultation that consisted of “yes, you seem to be doing better, come back in 6 months”.  6 months is an improvement on 3 months, lets hope none of my other joints flare up in the mean time.

I think that is the trouble with this disease, it’s so unpredictable. I am constantly waiting for another joint to flare up and give me trouble and based on past experience that will happen again.  I also know that the fatigue could flare up again any time and if anything, I find that thought more depressing.  Fatigue screws up your life, I don’t care what anyone says about pacing and finding your limits.  At the end of the day, if you can’t do what you want to do (and often HAVE) to do in a day then it’s frustrating and depressing however much you “pace” or “goal set”.  When that fatigue goes on for months it’s very hard to keep up any semblance of a normal life.

Anyway, enough moaning. Here’s hoping 2010 is a good one.

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What now?

Well, I saw the consultant. I do have psoriatic arthritis.  This is not a surprise, my GP told me this in June after he’d x-rayed my right hand. The disease is mild but significant so he advised me to start treatment.

They’ve taken x-rays of my hands, feet and hips and more blood. The consultation took about 30 minutes, most of it asking me questions and taking notes on my history. He only asked me to walk a few steps and move my arms from side to side. He didn’t check the range of motion in my hips, knees or ankles.  I’m to go back and see him at Christmas time. I really hope I don’t get any worse between now and then!

In the meantime I’ve been prescribed some more anti-inflammatories and I have to decide if I want to take sulfasalazine now or have another child and then start taking it. He said I could take it while I was pregnant, if necessary. To be honest, I’m not sure it is necessary.  He said that the pain in my feet is definitely arthritic and that this disease has been going on for a long time. So if I’ve managed this far without drugs, another few months isn’t going to make a lot of difference in the grand scheme of things.  He did say that psoriatic arthritis was not a reason to not have children but I should expect the disease to flare (get worsse) after I’ve given birth.

If the pain in my feet is “characteristic” of psoriatic arthritis why was I not diagnosed when my feet started hurting 20 years ago?  Maybe because this is the first time I’ve seen a rheumatologist? (I’ve seen plenty, GP’s, orthopods, phsyiotherapists, podiatrists and other specialists over the years).

I wish they could treat the fatigue, I can live with the sore joints, but not having energy to do what you want to do is demoralising and frustrating. The consultant did say the fatigue is related to the inflammation (that hasn’t shown up in my CRP levels, go figure?) and that anti-inflammatories and painkillers won’t help with the tiredness but the sulfasalazine should. Lord I really hope it does. Maybe then I can get a bit of my old life back?

Overall I’m happy with the way the consultation went. I’m  somewhat resigned to the fact I’m going to have to accept a treatment with unpleasant side effects, for many months before I know if it works (or not). Not the best situation to be in, but by no means the worst.