May is Arthritis Awareness Month, and although I do not have a diagnosis, I do live with bad joints and chronic pain and so here are the answers to some of my most asked questions.
[Note: Some questions have been paraphrased!]
Why haven’t you been diagnosed yet?
Wow, tough question. I’d say that there a few factors in why I haven’t been diagnosed. The first is that I haven’t seen my Rheumatologist in 17 months which is both my fault and her fault. The second is that while I have symptoms and some signs, I don’t have any radiological evidence (i.e. inflammation showing on MRIs/X-rays). But then again that could be because I didn’t swell at all until a year ago, and I haven’t seen my Rheumatologist in that time. Another reason is that when I say my neck hurts, I get an MRI on my lower back… that doesn’t make sense to me. She was looking for inflammation in a place that didn’t hurt. Basically I am a complex patient who needs to see her doctor more…
Why do you have to wait so long to see you rheumatologist?
Well there is a shortage of paediatric rheumatologists which must play a role but essentially I fell off of my Rheumy’s patient list for some reason. But I didn’t know this until a year later, and then it took me another 5 months to get an appointment. I think the key issue here was the lack of communication between me, my Rheumy and GP. We are all partly to blame and I should have picked up on it sooner rather than being patient.
Do you want to be a physio because you have bad joints?
Essentially, yes. I have one physio who I have been with since I was 11 and she has been able to sort out appointments when I haven’t managed. She has referred me on to my Rheumatologist (twice now), to intensive physiotherapy numerous times and she has been working her butt off to get me into Hydrotherapy. Basically, I can thank her for everything that has happened really. So I want to be able to do that for a patient too. There are actually no words to describe how much I appreciate her.
Do you take any medications?
For my joints? No. I was prescribed an NSAID last year but we didn’t agree and I stopped it. I’m hoping that my Rheumy will prescribe me a new NSAID which will hopefully work, and which won’t give me too many side effects.
Heat pack or Ice pack?
100% heat pack! I find that ice makes me ache more so I only use it when I am really swollen or on my hip bursitis when it’s radiating heat.
Have you had an MRI?
I’ve had numerous MRIs… 2 on my back, 1 on my knees, 1 on my hands and wrists. Just imagine it as lying in a (very loud) polo mint!
What is the worst thing about having bad joints?
Erm, good question… There are quite a few bad things but I think the worst would be the lack of sleep. Painsomnia (basically Insomnia caused by pain) keeps me up most nights so I miss having that good night’s sleep. Also, I absolutely HATE it when your joints get in the way of doing something fun/ruin a fun time… We went to Disney Land Paris the other year and although it was fun, I could hardly walk the next day which put a bit of a downer on the holiday… Or when I am driving (I love driving) and my neck is hurts to turn it and I have to stop driving and swap with my Mum or my Dad, that upsets me quite a bit too. But I try to not let my joint stop me from having fun on the whole.
Which joint bothers you most?
Well I guess I should say my left knee, since that is the worst one and then my Right ankle, some toes & joints in my mid-foot, my right hip (which also has bursitis), most of my fingers and wrists, and also my neck and more recently my lower back/SI joints. I’m fortunate that it isn’t all of my joints that are bad, and I can generally cope with whatever my joints try to do.
Do you use any gadgets to help you with your joints?
Do heat packs count as gadgets? I don’t really think I do… I guess I use the Microwave to warm up a heat pack, and I use my phone and some apps to track how my joints are doing, but on the whole, no, I don’t use any gadgets… But if you have any suggestions I am more than willing to try some!