A bitter-sweet appointment and a referral to Hydrotherapy

It was a bitter-sweet physio appointment I had today, although I must admit that it was a very productive appointment.

Baring in mind, I haven’t actually spoken to my Physio since Easter, we had a bit of catching up to do. She wanted to know where I was with regards to medications and what my management plan was with my rheumatologist and also which joints are bothering me the most. It didn’t actually take very long to explain that I hadn’t actually seen my rheumatologist since December or heard from her since Easter so essentially, I have no management plan at all. My Physio, was not just shocked by my Rheumy’s treatment of me but she was actually quite angry and said that she was going to phone my Rheumy tomorrow to find out why I haven’t been seen in a year. And with regards to medication, she was slightly annoyed that I hadn’t told my Rheumy that I couldn’t take the medication she had prescribed because of the extreme headaches I got as a result of taking them, but she also agreed to mention that when she was speaking to my Rheumy.

This appointment was quite unusual given the fact that I didn’t get examined, do any exercises, or tests of strength or range of movement but, we did discuss in quite a lot of detail what was going on with my joints. We talked about the swelling, and I showed her pictures of the redness. We discussed the joint pain and morning stiffnesses that I was experiencing and apparently before I had even come into the room my Physio had noticed that my knee and neck/upper back were still stiff (A* for observation skills there) despite my appointment being in the evening.

My Physio felt that it would take over an hour to examine each of the joints that were bothering me well enough to work out what was actually going on so we decided that we would skip that bit and talk about our management options since I had explained in enough detail what was happening. The first option I was given was to be referred straight back to my Rheumy and not do anything with regards to physiotherapy intervention but we both felt that it would be extremely hard going if I was to carry on as I am and wait for an appointment with no treatment at all, so we the second idea was the better option. My Physio suggested that I should be referred back to my Rheumy as well as being sent for 6 sessions of hydrotherapy. My Physio said that if the hydrotherapy helped me then that would indicate something “arthritis-y” is going on. However, since I wouldn’t be able to get referred to hydrotherapy till the new year my Physio is going to send me out some basic exercises for me to do in a normal swimming pool, even though it will probably be the heat of the pool that helps me most. What is quite ironic is that I have just been writing a report for college on the availability of physiotherapy services, including hydrotherapy, and found that in many NHS trusts there is not enough evidence to justify the costs of hydro in JA patients.

My mum did ask what my Physio thought was going on with me because quite frankly, we are both at the end of our tether. My Physio felt that given my fatigue, joint pain, morning stiffness, swelling and redness of my joints and taking into account the consistently abnormal blood results I have, something is definitely going on but she cannot definitively say what is actually happening, though she feels that it is related in some way to arthritis, but may or may not be arthritis itself.

I don’t really know what to think about that appointment, it was quite overwhelming actually. I mean yes, I am happy that I do have some sort of plan now and I am going to be referred for hydrotherapy, which should hopefully really help me. But I am upset that my symptoms point to arthritis, even though I have known that for years, and I am upset that we don’t actually have any other options than to send me to hydrotherapy because my physio feels that I am getting worse. I’m slightly stunned too, that I have a plan of action and it IS actually going to be carried out. I feel like I am finally entering a new chapter of my journey, though I have been in this position before and it lead me right back to the start. I’m trying to stay positive and digest everything that happened today.

I have been booked in for another appointment with this Physio in early January but I have absolutely no idea what to expect, this appointment was a surprise, maybe next year will start off on a high!


6 thoughts on “A bitter-sweet appointment and a referral to Hydrotherapy

  1. Though very productive, that’s very overwhelming! It’s a lot to take in. It’s great seeing all the positive things that came from it. 🙂

    By the way, was the medicine that gave you headaches indomethacin? I got severe headaches and lots of other fun side effects from that.

    1. Yeah it was indometacin! I didn’t know you had tried indometacin? I’m
      Glad I stopped it when I did, don’t think I could have coped with the headaches much longer. I’m sorry you had issues too… Are you on another NSAID now?

      1. I haven’t taken indomethacin in a couple years thankfully. Most recently I take tramadol, which isn’t an NSAID but helps enough (I can’t take NSAIDs because of my kidneys right now).

        Literally the headaches were the worst! Did you get really light headed? I use to tip my head upside down just to feel like there was blood in there! My doctor pushed me to keep taking it, and two or three weeks in I got really sick: Vomiting, dizziness and a throbbing head for a week. Fun times, haha. I’m just glad my mum took me off them!

      2. Ah yes I forgot about the kidney issues, I have to take a lower dose NSAID than she would prefer me to take because I only have one kidney and we are being extra careful… I never used to get light headed but I was super sensitive to light and noise, I couldn’t concentrate and I felt really ill.

  2. Wow, what a visit! I hope that things become more definite soon. If you can’t find someone who can diagnose you, is it possible to get a second opinion from another doctor? Whether it’s arthritis, or arthritis-related, hang in there. You have such a great attitude about everything that has been happening. Hope the hydrotherapy helps the joints! 🙂

    1. Thank you 🙂 I don’t think it is possible to get an appointment with a different Rheumy till I have been moved up to adult care although my Physio did warn me that sometimes people don’t ever get a diagnosis and it’s a case of managing their condition. But we decided that we can finally discount growing pains woo!

      Haha I think we all need to take things in our stride, I mean having a chronic illness is hard going and sometimes we just need to rest but you can’t just stop completely.

      I hope you are well!

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