I wish that for once I could just feel better.
It’s a week since I had the cortisone injections and a few joints have improved; I was pleased to be walking better than I was previously, although I still don’t know how much better I’ll be at walking distances as I haven’t been anywhere! I also began to wake a bit earlier each morning, which I took as another good sign, and I’m no longer feeling low.
At the same time though, I am having more temperatures and rashes on a daily basis, I’ve been feeling queasy and last night I was finally sick. I don’t know if this is Still’s related, mediation related or just a bug that I’ve picked up. I don’t remember if I had any side effects the last time I stopped Methotrexate as it was over ten years ago and I was very ill in hospital at the time. It seems unlikely I’d feel the effects only two days after being due a dose though. I also can’t remember having any side effects from the Ciclosporin in the past, so I’ll just have to see how I go.
Joints-wise, the hip pain is still prominent and I keep getting twinges in my neck again, so I’m back to the exercises and minimising time spent at my computer, reading, etc… anything to prevent me needing to go on the Diazepam again. I’ll give the hip until Tuesday and let my rheumy know how things stand (or sit as the case may be).
So I’m a bit all over the place – neither here nor there.
Here’s another rash photo for those interested – it tends to be red and patchy on my face, neck and chest and gets more ‘speckled’ on my abdomen and arms, particularly on the back of my hands.
Rash starts to spread during a high temp.
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I went to see my GP earlier this morning because this neck and back pain has been getting me down and I’ve finally had enough. He examined both my neck and back quite thoroughly, asking to me to try and move this way, that way, forwards and backwards… while he felt the problem areas. Almost immediately he told me that the muscles from my neck down to my lower back have all gone into spasm, probably to protect itself from some other problem.
Finding out what that problem is will be difficult until the spasms ease off and so he has prescribed me a low dose of Diazepam to work as a muscle relaxant. Once I notice some improvement I am to arrange to see him again to reassess the situation; he thinks it could be either common neck pain from a trapped nerve, disc problems or joint damage. I’m very young to have disc problems or joint damage in my neck, but with the Still’s Disease you never know; I’m hoping it is the common neck pain as that is easiest to treat.
I was slightly worried about taking Diazepam, it is a drug I’ve heard of before and for some reason it has negative connotations to me. But I’ve had two doses so far and although I feel a bit dozy, it’s not too bad and I’m pretty sure I’ve noticed some relief already so will be worth it in the long run. He also gave me some simple neck exercises that I can try once it does start to loosen up again, to prevent it from seizing up.
I gave him the copy of my recent blood tests and he too is confused by them. My inflammatory markers are all reduced and yet he said it is obvious I am still having joint involvement – swelling around knee and elbow plus the pain in my shoulder and hip. The Tocilizumab’s main mechanism involves ‘mopping up’ excess CRP so my results correspond with that, but something else is obviously still causing this joint pain… unless they’re just slow to catch up.
Time will tell anyway; I feel positive that this is the one and that things are going to start to turn around, even if slowly at first.
Ps, To follow on from yesterday; the coldsores haven’t spread any further so I am to continue with the Zovirax and get in touch with him for Aciclovir tablets if it does get any worse.
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I think I’ve mentioned before that I’ve been experiencing some neck pain recently (edit: looking back through posts, my first mention of it is back in early October!), well it doesn’t seem to be getting any better; in fact, if anything it is getting worse.
It started with an increase in joint sounds, (ie, crepitus) on moving my neck and developed into pain and fatigue on the lefthand side shortly after. Since then, it has gone on to affect my whole neck and I have painful spasms even when only moving it a tiny bit – you know the sort you get sometimes, when you turn your head too fast? Ouch.
The pain has been so bad at times that I’ve felt queasy and even seen stars. I can’t turn my head properly and struggle to sleep because it is so uncomfortable. I have also been struggling to open my mouth and cannot swallow very solid food, it just won’t go down! Pain killers don’t seem to work on it and so I have resorted to using my TENs machine on a regular basis, which does help a little – the only problem is you are restricted as to where you can place electrodes in the neck area and so I can’t reach some of the most painful parts.
I don’t know whether this is a muscular, joint or nerve problem, but it is getting me down. When I was younger, I had similar problems and struggled to hold my head up, so I ended up having to wear a neck brace and collar. This time though, the doctor is reluctant to advise that, as he feels the limited range of movement you have in a collar could cause my neck to seize up further, as well as the muscles to weaken. I can see the logic in this but wish he could have provided me with some other option that might bring me relief.
As well as the discomfort, I’m concerned about the damage that could be occurring if this is part of the Still’s Disease inflammation. Any joint damage is bad, but necks are so fragile and so crucial too, that the prospect of damage to its intricate structure is quite scary.
Still’s really can be a pain in the neck at times.
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The weather outside is frightful, the mornings are darker, the days and nights are getting colder.. looks like we’ve seen the last of our ‘summer’, if you can call it that. I really had to force myself to go out this morning for my five minute clinic appointment in the next village, just wanting to snuggle deeper under the duvet instead. But, I made myself get up (at least that is still possible!), stretched out the worst of the morning stiffness and was out before 10am.
I was hoping that maybe today would be my last appointment for wound care but, as always, nothing is straight forward. The wound is now overgranulating on one side and so needs a pressure dressing, plus it isn’t drying up as it is supposed to and so the nurse has laid some Inadine over it, which should help, even if it does sting. I have my next appointment on Friday and I think we’re both hoping that will be the last one!
Joints-wise, things always seem to go a bit pear-shaped this time of year thanks to the cold, damp weather. The thing I have noticed most recently though is just how much noise they are making – crepitus is the medical term for it I think, but basically many of my joints are crunching, grinding and cracking. I’ve dabbled with supplements such cod liver oil, chondroitin and Glucosamine in the past, but do they really help? Maybe I need to look into it more.
In particular, I’ve been having trouble with my neck; all of the above noises plus a lot of pain and muscle fatigue up the left side, so much so that I had to lie down mid-afternoon at the end of last week, to give my poor neck a rest from holding up my heavy head (must be down to the big brain obviously!). Joking aside, it does bother me, since as a child I had to wear a neckbrace to treat similar symptoms. I guess it’s something I’ll have to keep an eye on to make sure it doesn’t get any worse.
Anyway, my fingers are getting cold so I’m off to find a blanket to snuggle under and read, while the wind and rain batter the windows, brrr.
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