Rheumatologist visit

Nothing too much to report this time, I don’t think. I’m thankful that most of my last few visits there has been nothing major to investigate. My blood and urine results were good last time, which is a relief. Because I’ll never learn to be more organized when it comes to rheumy visits apparently, I scribbled the list of questions on the morning instead of a week or so early as I was supposed to for my goals list! My rheumy is lovely, though, and we end up chatting about God knows what half the time. She was very happy with my plan to do my Masters; she thinks it’s very sensible, especially as I explained how I’ve more or less come to terms with the fact I’m not going to have the forensic pathologist career I want, where I’m married to the job, and do little else! With my health now, I’ll be happy to work in my field even vaguely, with a job that’s not too strenuous and gives me time to work on my hobbies and doesn’t burn me out.

For my sinuses, I’ve to go to my GP to get antibiotics to see if it clears things up–if the symptoms do return, then they’ll refer me to the ENT. I’m hoping they do the job, but with an autoimmune disease, it could be inflammation that is not caused by any bacteria. Fingers crossed! My sinuses have calmed down at least since recently when I got a bit of a cold and really felt like my face was going to explode. Otherwise, I can deal with the day-to-day pain and feeling of pressure, although it is fairly annoying!

There’s not a lot to do for a lot of my joint pain, unfortunately, as much is likely caused by my hypermobility syndrome. I just need to keep up with physio as I can to strengthen some of the muscles groups around my worst joints and give them a bit more stability. It’s a frustrating mix of conditions, as using my sticks to get the weight off my hips a bit and make it easier to walk in general worsens my upper body joints.

I asked her for the opiate script, and she was quite happy to do it. Mostly I’ve been taking dihydrocodeine and co-codamol anyway, so I think she sent it through for co-codamol as I’m on paracetamol anyway (not that you’d ever know it for all it does, haha) so hopefully the combination is more convenient. For a long time I was so wary of opiates; my parents have both been on them for quite a long time for chronic issues, and as they’re quite addictive, I see them go through the withdrawal and that kind of thing. I had my stock of them for when I was “desperate”, but of course, “desperate” has been getting more and more frequent to the point where I was more or less taking them every day anyway for my pain, as paracetamol and NSAIDs weren’t touching it a lot of the time. As time went on, I thought, “Meh, it’s not as though I’m going to get better and need to come off them anyway!” I don’t the point in suffering now for a “just in case” in the future anyway.

As for my calf, the gastrocnemius muscle is shortening. My calves have always been the worst muscles affected, but recently the left calf has been getting tighter and tighter, with the top of the muscle behind the knee becoming even harder than usual. The podiatrist at one point noticed as she was trying to lift up my foot just how resistant the muscle was in that leg. This type of thing can be a vicious circle, so I’m basically just trying to stretch it out on a regular basis, but by this point, it’s almost unbearable to stand with both legs straight, so I’m kind of on tip-toe on that foot which is just keeping the muscle short. So every now and then I’m just dealing with pain of keeping both feet flat to stretch it out a bit.

She hadn’t known about the colonoscopy (see how information so easily is transferred between medical departments here!), so we spoke about that for a while. I’m still having bleeding which we can hopefully chalk up to the hemorrhoids, but I’m still getting very pale stools and that kind of thing. We’ll see if anything comes up on the bloods this time anyway. She was surprised that the doctors had never really bothered about my IBS before–I explained that I was diagnosed very fleetingly while they were still fobbing me off for all of the lupus stuff. So she’s trying me on a proton pump inhibitor to see if it helps with a lot of my gastric symptoms–we stopped the NSAID last time just in case that was contributing to the symptoms, but I don’t see any change.

Happily, she gave me a script for the medicated mouthwash I’m meant to have gotten long ago for my mouth ulcers. It’s so expensive in the shops though. I have a cheaper one just now–which tastes awful, haha–but it’s much easier if I can get the better one on prescription!

Finally, my wonderful sleep issues… I told her I had been getting quite bad at taking the amitryptiline for various reasons, but a lot of it was the hangover it gives you the next day. It’s all well and good to take it and be able to get to sleep reasonably sooner the night before, but not if you can’t get up the next day! We’re trying nortryptiline instead, which is a second-generation tricyclic rather than a first as amitryptiline is. It should give me fewer hangover effects. Tricyclics can also help neuropathic symptoms, so I’ll be glad to have one I can take more regularly.

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