I’m lost

I finished my pred burst over a week ago and I can’t really explain how good it was to go 2 weeks with hardly any pain. I have had chronic bursitis in my hip for 2 years, and this is the first time in 2 years that it hasn’t hurt at all, even when I prod it. Of course the pred is starting to wear off and the usual aches and pains are coming back which is disappointing because I was hoping that I could get longer… I have had bad joints for the best part of a decade, and this is the first time since then that something has touched the pain… It is hard to explain how good it feels when you are used to an average of 2-3 hours of morning stiffness that suddenly with the help of 8 tiny tablets that you only get 15 minutes… That is less than 10% of what I am used to.

The pred started to wear off earlier this week, and my morning stiffness now lasts between 1.5 and 2 hours, which is still an improvement but after seeing that I could only have 15 minutes of morning stiffness, I’m not that impressed. The question is, what should I do now? I don’t have any active inflammation, but my joints are getting sorer, and they are getting stiffer… I don’t know whether I should try and see my GP and see what he says because I don’t want to let my joints get to where they were before. But there isn’t an awful lot that my GP can do in all honesty because, 1, I am refusing to take pred again unless I really need it and 2, he seems unwilling to prescribe any other NSAID except from Ibuprofen despite the fact I am supposed to be taking Indometacin long term… He even tried to tell my that Ibuprofen was EXACTLY the same time as Indometacin, which I find is quite patronising. They are in the same drug class, and they work with the same aim, but they are NOT the same medication.

So I wondered whether I should phone my Rheumy, who believes there is something going on but neither has the motivation or time to try and find out what that is… She told me to phone for an appointment when I am flaring, which I am not but then is pred helps maybe she should know that? Could that give us a clue to what is going on?

I would phone my Physio, but since I was 18 last month I am not actually under the care of any physiotherapist anymore… Which makes the whole hydrotherapy situation significantly more difficult because I don’t have anyone trying to sort it out for me. To sum up what has happened with hydrotherapy… I was referred in January 2014, I was approved in May 2014 and nothing has happened since despite many phone calls and one visit. The receptionists have tried their best but it seems like there is nothing anyone can/is willing to do and so it looks like I won’t be getting hydrotherapy. Or even if I was suddenly offered a place for hydrotherapy, I won’t be able to go now because I don’t have 6 weeks clear in my timetable for my 6 sessions… I’m not too upset about hydro because I had a feeling right from the start that I wouldn’t get it, what I am upset about is that I have been repeatedly told that I will get hydro which is a flat out lie, because no one can be bothered to do anything. It would have made my life significantly easier if they had told me that I couldn’t get hydro right from the start so I wouldn’t have spent literally hours on the phone trying to sort it all out.

So now I am lost. Actually scratch that… I have always been lost in this NHS system, that’s why it takes me 6 months to get blood test results and the results of my scans, and that is why it took me 17 months to get an appointment with my Rheumy which are supposed to take place every 6 months, and that is why I don’t know who to go to now… because I am totally lost in this fricken system. And if I do actually get into University to do Physiotherapy, I swear that my patients will be treated better than what I have been treated, and I shall make sure that they are not lost.

The first appointment of 2014

I really should have written this post on Friday, since that was when I had my first physio appointment of this year, but I haven’t really had chance to write it and up load it until now.

It’s always a bit daunting when you have your first appointment in the first week of the year, I always think that anyway. And so, I was quite nervous going in, which is strange because my physio and I have known each other for 7 years… The best part of a decade.

I wasn’t exactly sure why I was going to see my physio since we had already agreed that I was going to try hydrotherapy but since my brother had an appointment, for a sports injury, I had told her at my last appointment that I would tag along too. When we arrived everyone was at lunch and so it was only my family in the waiting room, which was good because it is THE smallest waiting room I’ve been in and that includes the rheumatologist’s, dermatologist’s, opthamologist’s, nephrologist’s, nuclear scanning, MRI as well as all the usual waiting rooms that you get (I.E. GP, dentist, etc.).

That picture shows the whole waiting room, not just part of it.

When I got called into see the physio, we exchanged niceties, you know the “Hi” and “hope you had a good holiday” and things like that. She asked me how I had been, but to make things interesting she wanted to know what was happening where in chronological order since we last met… That kind of threw me a bit since nothing about what happens to my joints is chronological, it all tends to happen at once. So after explaining that, I told her that the bursitis is back in my hip (I was diagnosis with that 2 years ago, maybe? By a different physio), and I explained that my ankle had kept me up till 3 that morning and I told her how I thought I had tendonitis in my knees. However, it turns out that I don’t have tendonitis, I have inflamed ligaments in my knees… I’m not sure what the medical name is for that so I’m going to call it “ligamentitis” which is may or may not be a technical name but it explains exactly what’s going on. We aren’t sure at all what is causing this “ligamentitis” since I haven’t done anything at all to hurt them… We figured it is just another part of what’s going on with the rest of me.

We talked about my rheumatologist and apparently it is REALLY hard to get in contact with my Rheumy, and that’s coming from another health care professional, but we are just hoping that this lack of communication is because of the holidays. However, my physio did say that even if I don’t get an appointment this month, that I will get an appointment soon… THIS MONTH?! I was expecting 10 months from now, not in the next few months. Oh and I also got a bit if a telling off for stopping my indometacin than the Rheumy prescribed without her knowledge, and was told that if anything was prescribed I have to see the Rheumy before I stop it so another med can be prescribed.

As for the hydrotherapy, I am currently on the waiting list, and apparently they are supposed to start sending out appointments next week. So by next week, I might know when my appointment will be, of course it all depends on how far down the waiting list I am but I’m totally fine with waiting. In the mean time, my physio has said that I should start swimmingly again and she has also given me a print out of some of the exercises I will be doing at hydrotherapy to do myself.

All of my exercises are for my trunk and lower body and aim to improve muscle strength, posture and flexibility, although reading through some of the exercises, I hate to think of how people will react if I do these in a public pool but you have to do what you have to do. And if it does all go wrong, we at least I have something to laugh about later (once I have got over the embarrassment).

Finally my physio told me that she is going to keep me on open service, which means that if I have a problem, I can give her a ring and come in ASAP. When I asked her why I was on open service she told me that once I have finished this course of hydrotherapy I should be moving up to adult services so by keeping me on open service then I can still see her until we both agree for me to move up. But since she is essentially overseeing all of my care, she is unwilling to let me go just yet. This actually feels like a bit of a blow since we have been working together for 7 years now and she has seen me through flare, after flare. She was the one who sent me to my Rheumy in the first place and got me to see every other physio I have seen, and she is one of the main reasons I want to become a physiotherapist. By loosing her I will be loosing a key member of my team, the one who has advocated for me for so long. It will be immensely sad letting her go. But this is also a chance for me to become a better advocate for myself, I am going to have to phone my rheumatologist when I have a problem, I will have to re-arrange all the scans that are always ordered for the wrong part of my body, and I will be the main co-ordinator in my team from then on. That’s actually quite a scary thought, but it has to be done by someone, and I know my body better than anybody.

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!