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Posts Tagged ‘Joint Pain’

I spent the weekend being looked after by my Mum at her house while my Fiance was working. It was lovely to spend some time with her but, of course, sad too after the loss of Lucy. It did give us chance to talk and grieve though and I feel more at peace now.

I did something really stupid on Saturday. After sixteen years of taking Prednisolone, I somehow forgot to take my 50mg dose in the morning and soon started feeling grottier than I had been. Thankfully, I realised what I’d done some time in the afternoon and took them straight away, but boy did I suffer that night. The pain and fevers crept right back in and I was worried I’d lose a grip on all the progress I’d been making.

I woke up feeling okayish yesterday morning and the day seemed a reasonable day in general. This morning, however, I have woken up with excruciating pain in the whole of my right leg – from hip to toes. I had felt it niggling away in the night, but when I moved the leg first thing it was like waking a beast. There are dull pains, sharp pains, spasms, waves and other sensations running through the joints and the bones. A hefty dose of Oramorph has taken the edge off a little (I’m not tempted to swear now at least!) and I can have some more soon, but I am a bit concerned what this means.

You see, the pattern with my Still’s Disease is that I get a Systemic flare first, with the fevers, rash and random illness (Pericarditis, Neutropenia, Pleural Effusion to name a few); then a few weeks later the Joint flare hits big time. I was hoping the considerable dose of Prednisolone would keep things at bay this time, but this pain does not bode well. Plus the weird bubbling sensations I’m getting could well be the start of some fluid accumulation. I’m trying not to worry about things before they happen, but after things got so bad at the beginning of the year it is hard not to. For now, I’m resting up and back to using a stick since the leg doesn’t seem to want to bear any weight.

Book Recommendation: Another Alice by Alice Peterson

For the past few days I have been reading an autobiography of a woman who was diagnosed with Rheumatoid Arthritis at the age of 18ish and thought I’d share it with you. There are some differences between life with RA and Still’s Disease, but I still felt that I could relate to a lot of her experiences and found it an interesting read – one of those that makes you want to shout ‘I know exactly what you mean!’ She had a tough time of it, especially as she was a budding professional tennis player when symptoms started, yet I didn’t find it depressing just realistic. There is a section on her tennis career at the start; but, if that doesn’t interest you, it is quite easy to skip ahead to the RA story as chapters have obvious titles and you don’t miss anything from doing so. Equally, bear with that section if you can; I did and felt it summed up that sense of loss that comes with initial diagnosis, especially as a young person.

This could also be a good book to share with friends and family that want to try and understand what it is like to go through life with an illness like RA or Still’s. She explains her pain, her alienation and how she adapted and got over her feelings of shame/embarassment towards such an illness really well.

Give it a go and see what you think,

L

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I haven’t posted a real update for a while, so thought I’d do that before I start on a few topics that I’d like to discuss over the coming weeks.

I think it’s safe to say that I am responding well to the Infliximab infusions, as I am relatively pain free these days and all joints are mobile, with little or no swelling. I am still taking 60mg of Morphine twice a day (down from 140mg), but am working with my GP to reduce this. We’ve come to a bit of a standstill at the moment because I do get some pain from my reoccurring Gastritis, but once this is under control with the stronger stomach medication, I aim to become Morphine-free and hopefully will have no underlying pain.

The Gastritis is probably my main problem right now. I had my first episode of this earlier in the year, just before my major flare at the end of January, and it is thought that the Gastritis contributed to this, since the stomach inflammation meant that I was not absorbing my Still’s medication adequately. I now take Esomeprazole and Motilium three times a day and also avoid acidic food and drink, but still it niggles away. A friend, with Still’s and similar gastric trouble, has suggested that it could be related to the IV biologics that we take and so I’m going to look into this at some point. If you have experienced anything similar whilst on any of the IV biologics, please comment – it would be interesting to see if this is the case.

The Infliximab infusions themselves are going well, although I did suffer a bit towards the end of the eight week interval. I noticed that rash, temperatures and some joint pain returned at about five-six weeks post-infusion. As a result, my Rheumatologist has prescribed it every six weeks instead. I haven’t experienced any major side effects from the drug apart from getting a very sore, ulcerated mouth a couple of weeks later. I do seem to be more prone to infection in general though, something I never really noticed with any of the other medications, despite their immuno-suppressant action. I currently have the first cold and throat infection I’ve had for years, so I’m being extra careful.

As I have briefly mentioned in a previous post, I am having some problems with my finger and hand joints being very stiff and painful, especially first thing in the morning. This is unusual in itself, since any previous hand involvement has always been during times of full-blown flare. My only thought is that six months on crutches has put extra pressure on those particular joints, so hopefully it will only be temporary… especially now that I am off crutches altogether! Yep, I felt that they were holding me back on our recent trip to Paris and so threw them into the River Seine (not literally). I need a bit of support from people at times and have the odd spell of vertigo, where my brain seems to forget how to balance without sticks, but I am finally back on my feet and feel like I can only get stronger from here.

I have also managed to get down to 5mg of Prednisolone, the lowest I’ve been since about 2007 if I remember rightly. I would love to get off the stuff completely of course, but for now I am happy with this low maintenance dose and would prefer to get rid of the Morphine. I don’t want to be doing too much too soon, in case I put all this success into jeopardy, plus I have to save some goals for the future right? 😉

All in all, things seem to be on the up (touch wood), but don’t worry – I’ll still find plenty to post about!

Here’s to Infliximab and the future,

Cin cin

L

Ps I have updated the ‘My Story’ page and also added some new Articles to the Articles section.

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This week is a busy one for me, everything seems to be starting all at once!  I had my first appointment with the Physiotherapy team at the local hospital this afternoon; this is on top of the physio exercises that I am keeping up with at home. Feeling brave / stupid, I thought I’d use my crutches to walk to the department, but it turned out to be miles of long corridors away and I was a bit (okay a lot!) worn out by the time I got there. I didn’t make the same mistake on the way back though I tell you! Not to mention we found there was a direct entrance to the department from a different car park, d’oh.

I’d barely sat down in the waiting room before my name was called and I was taken through to a cubicle for my initial assessment. The Physio was lovely; she had taken the time to look up Still’s Disease so that she could be better informed as to the best way to approach my rehabilitation. After some further questions into my background history and this particular flare up, she checked each joint’s mobility: my neck is almost normal and I think that is thanks to the home exercises as a large chunk of those are neck-based; my arms are a lot better than they were, but to her must have seemed quite bad because she said we needed to work on the range of movement I have, especially lifting/raising; my knees are moving better but there is a lot of muscle weakness and wastage in my upper legs, which is going to take a long time to recover; my hips, again, seem much better to me, but she said they were quite restricted mobility and strength-wise.  Assessing my walking on the crutches, she commented that I looked to be really struggling and quite wobbly; she suggested I might be better in a wheelchair for now, or using the zimmer frame for a while longer, but I told her I was managing.

I felt a little bit disappointed that her impression was that I was still in a bad way; but then she can’t compare to how I was when I came out of hospital and just how far I’ve come since then. At least I have that knowledge and the belief that some of this improvement is down to keeping up with the physio at home, so this next level of physio should help even more. Walking-wise, I have been taking things very slowly and it has taken a long time to get to this point; it’s only the past week or so that I have moved onto using the crutches as much as I have. Maybe I’m being stubborn, but I think it would be a shame to go back to the wheelchair and zimmer. I admit my legs are wobbly right now, but I’m sure it’s just due to doing so much this week; I’ll give myself a break tomorrow and take it easier at every opportunity I have.

Anyway, back to the appointment. The Physio decided that, because I’m struggling so much with my mobility ‘on land’ (ahoy!) right now, the best thing to start with would be Hydrotherapy, which is exactly what I’d been hoping for.  She invited me to a class that runs specifically for women with Rheumatological conditions and introduced me to the physio that runs it. It sounds like quite a large Hydrotherapy pool (as opposed to my old Hydro’s ‘tin bath’), and each person gets their own guidance and exercise regime while you’re in there. She explained that her aim would be to build the strength in my legs and get me to a point where I could walk unassisted in the water, which is easier than on land. Once I reach this point, then I can return to the regular physio to carry on this strength-building and start the process of trying to walk unassisted on land, using parallel bars etc.

Maybe I’ve been a bit naive, but I wasn’t expecting my recovery to be such a long and intense process. I’m trying to think back to the previous times I’ve had to get myself walking again and I don’t remember it being so hard. Maybe it’s because I was younger then, still a child really, and so I naturally bounced back quicker? But my main suspicion is that I was just stronger over all; that over time I have let myself waste away too much and become weaker than I should have been, meaning my body wasn’t prepared for such a shock to the system. All the more reason to make sure I continue to build myself back up now and after my recovery – the stronger our bodies, the easier they can fight all this I reckon.

She seemed quite positive I would at least get back on my feet eventually, which I guess I should be grateful for.  I am a bit worried about how I’ll manage during our trip to Dublin next week, but I will manage somehow – where there’s a will there’s a way and all that.  I start the Hydrotherapy class on Monday afternoon and I’m really looking forward to it, then I’ll be able to take some of the exercises with me to the pool on Tuesday and relax for the rest of the week.

We stopped at one of the local farm cafes on the way home, for a hot drink and a slice of cake, as a bit of a treat. Since the sun was still out and it was quite warm, we sat at a little table outside and spent an hour watching the agricultural world go by – so peaceful. I’ve often thought I’d have been quite happy growing up on a farm and one day I’d love to have a house with enough land to keep a few animals.

It’s good to look to future and dream :),

L

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I thought I’d post a more thorough update on how things have been since my first Infliximab infusion last week, especially since most of it is positive. I noticed almost straight away, the very next day, that I had less pain and was able to move better: things that I had been finding hard, such as sitting up in bed or standing from a chair, just felt that little bit easier and have remained so. I’ve also noticed a slight decrease in swelling around certain joints, my left elbow is straighter and my knees are less restricted. This improvement has been maintained each day and, rather than the rollercoaster of good days and bad that I had previously been stuck on, I seem to have reached an even keel, which is brilliant.

This stability has enabled me to stick to a better daily routine, including with my Physiotherapy exercises. I now have set times for my sessions and have even been able to increase the number of repetitions of some of the easier exercises, without suffering for it. I try and push myself a little bit harder each day, but know to stop when I feel the strain not after it, and this seems to be working. My arms in particular are moving much better than they were and the spasms that I was experiencing in my neck / shoulder / collarbone area have definitely lessened, although it still feels like something is ‘catching’.  I also have a better range of movement in my neck, something that has been restricted for months and months!

I’m defintely getting stronger in my legs and am able to bear more weight through my hips now too; I even managed to raise my leg off the bed when lying flat for the first time the other day – an exercise that I’d had particular trouble with – and I’m gradually increasing how long I can hold it there for. Not being able to do this had been upsetting me, so to me this is a big sign of improvement. I still have the muscle wastage at the tops of my legs and around my hips, but I know this is something that will take time to recover and at least it isn’t any worse. I’ve just started to add some resistance exercises to my lower body pyhsio, using therabands, so this should help build up some strength and muscle too. I’m really pleased now that I pushed through the pain and made myself exercise and I’m even more determined to keep it up and not slip back into bad habits. Who knows, maybe I’ll be lifting weights next?! 😛

Walking-wise, I am still mainly using the zimmer frame to get about and managing quite well with it, but I am at least using the crutches every now and again: I chanced a short walk around a shop on them the other day, which was an achievement in itself, although I felt a bit wobbly and it wore me out more than I expected. I’ve been able to manage the stairs a few times (with help), on the crutches too and so have had a few evenings downstairs, which is great. Not only does it mean a change of scenery and better zimmering space, but I’m able to pop in to say hello to my ‘furbaby’ Jasper the rabbit, who I miss like mad. I’m hoping that things are going to get better and better from here, that I’ll be able to use the crutches a little bit more every day and to go downstairs once a day too. I have three weeks until our Dublin trip and it would be great if I could manage with crutches alone.

I still can’t say if all this is thanks to the Infliximab / Remicade or the IV steroids, but any relief, any improvement is a welcome thing.  Despite not wanting to get my hopes up too much, I at least feel pretty optimistic about the new medication and I think that’s allowed. The only bad day I have had since starting it has been today actually. I woke up this morning with a very sore mouth and swollen tongue, (which has become increasingly worse), and when I looked in the mirror I had several ulcers/sores on my gums and a strange raised rash-type thing covering my tongue. I’ve also been feeling really weak and shaky, my pulse is racing and I’m exhausted, so for the first time since being in hospital I have slept during the day and am currently curled up on our sofa with a blanket.  From the information I was given, it looks like it could be a side effect of the Infliximab or of my immune system being wiped out by it; but hopefully, like so many of these things, it will just be a minor blip and disappear as fast as it came.

At least I can finally say there have been more good days than bad 🙂

L

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I seem to keep following up every positive post with a negative one, but that is just how things are at the moment – I am definitely on the ‘Still’s Rollercoaster’ and wanting to get off.

Last night was the hardest night we have had in a while. As well as the obvious hip pain, I had been seizing up more and more as the day went on; my elbows, shoulders, neck and collarbone were pounding and I could barely move my upperbody and then when the time came round to move me from our upstairs Snug to the Bedroom, I discovered that both my knees were so swollen that they wouldn’t bend an inch. Trying to get me up from the sofa when I was unable to bend or weightbear with either my upper or lower body proved extremely difficult and there were a lot of tears from me and looks of sheer panic from my boyfriend. Even once we managed to get me on my feet and changed, we had the same problem trying to get me into bed. I couldn’t move my limbs myself, couldn’t shuffle or roll or do anything you take for granted getting into bed; I really thought I was going to have to sleep back on the sofa.

So swollen and full of fluid it won't bend - you can see the difference to my skinny legs.

Somehow we managed to get me in the bed, propped up slightly on my back and with a pillow beneath my locked knees, which wouldn’t fully straighten either. I’ve been this way with my knees before (many-a-time) but can usually compensate with my arms; the fact that I felt every single joint in my body was giving up on me and swelling with fluid despite all the cortisone injections, is what made it so tough. I was in bed but I was now helpless, unable to move an inch without extreme pain, or to even shift the duvet, which suddenly felt like a ton weight. This is a scary feeling; I’ve felt it before but this is one of the worst times yet. My boyfriend was on call and would have to wake me to administer Oramorph each hour until I found some relief from the deep throbbing pain that had my body in a vice… but eventually, I did manage to drift off to sleep.

The point I wanted to make though, is how much this is all affecting my boyfriend too.  I am so lucky to have him; he’d do anything for me and that’s part of the problem – because he still sees me suffering, he feels like he isn’t doing enough to take it away.  He’s starting to look exhausted himself; the weekend away helped but now we’re back in the routine of him caring for me at home and working full-time it is taking its toll again.  Plus, he can never really leave it behind when he does go to work. He says I’m on his mind all day (not in the usual way unfortunately), he can’t concentrate properly and is making silly mistakes because he is so distracted and tired. He came home complaining of sore ribs last night and only remembered after a few hours of being home that he’d actually had a bit of a fall, which explained the pain. I mean, how do you forget something like that?

I worry that he might see me in a different light all of a sudden, in fact, every time I need help dressing or getting into bed, or off the toilet or when I move like the tinman; that he’ll be put off by the rashes, the Pred cheeks and swollen, deformed joints I keep presenting him with. We’ve been going through this flare at some level for two years now which has been bad enough, but this is the worst he’s ever seen me and I know he is shocked. But he is never anything but loving and supportive, telling me that we will get through this together. I know how much it must scare him though and it breaks my heart. I want to be able to reassure him that everything will work out and I do try. At least I’m lucky enough to be able to look back on previous flares and be reassured that thing did get better; for him, this must seem neverending and unfathomable. It’s almost as if I now want to get better for him more than anything else, to give him a slice of normality again and show that this isn’t how our relationship is going to be forever. I want to make him feel better.

Because it’s so so hard for him to watch me going through this… and it’s hard for me to know that too, but how do I protect him from it? I hope, that when we can put all this behind us to some extent, our relationship will be stronger for it, but for now all I can think is….

Cruel disease.

L

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After two weeks in hospital, and one of my scariest flare ups, I finally came home today. It was a slightly confusing turn of events, as on Thursday they were talking about me going to a mobility rehabilitation centre for a time and then suddenly the arrangements were being made for me to go home, even though everyone seemed to have different ideas about whether I was ready for this. After a lot of discussion, I made the decision that I would rather be at home to continue my recovery as I didn’t really see what more could be done for me as an inpatient, now my pain was controlled and I’d had all the relevent procedures. I’m lucky to have good support and facilities at home, plus they have arranged for me to have home physio and an assessment by the Occupational therapists to see if there is anything more I would benefit from.

My elbow had been the main factor holding me back once my hips were sorted, as it became swollen, restricted and very painful – especially when needing to bear weight through it to use the walker/crutches. My Rheumy came to examine it and found more inflammation and fluid around the joint, so I had this injected with cortisone too, which should settle it down and give me more movement and use of that left arm. I tried the stairs with crutches for the first time and although it was hard going, I think I can manage doing it once a day until I’m strong enough to try more. One important factor that has been reinstilled with me during my hospital stay is just how important it is to keep moving, even through pain and inflammation, and this is something I will be posting about once I catch up on everything.

The past two weeks have been a real eye opener for me in many different ways, so I have lots to post about. The wordpress format seems to have changed while I was away, but I’m hoping that once I figure it out I will be able to backdate posts relating to my stay, while updating with current issues as before. The reason I feel the need to backdate is that this blog also forms a record of my disease activity, which is useful for myself (and hopefully others) to look back on. I was making notes on paper during my stay, so hopefully will be able to keep it accurate.

It feels really good to be home and I’m confident that it will speed up my recovery; little things like needing to use steps to visit my little furbaby Jasper will encourage me to do so daily and even trips to the toilet provide more exercise than having a toilet in my room. I just have to remember to go as soon as I need to as it takes me about 15 minutes to get there with my walker and I’ve had a few close calls already!

Finally, thank you to everybody who visited, sent cards and messages of support to me while I was away. It makes all the difference in the world to dealing with all this and I count myself very lucky to have you all.

Take care all,

L

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{Backdated Post}

I woke up some time around 6.00am, Thursday morning, on a different ward – The Emergency Admissions Unit (H3). My boyfriend and his mum must have gone home, but there was a young doctor sitting on the edge of my bed ready to ask the usual admission questions about what had led up to me being there. I was slipping in and out of sleep and I’m not sure how much sense I made, but I’m sure I had a good go at getting things across. The nurses from A&E had already filled everyone in on my level of pain and immobility; I relaxed believing I’d now get the right care.

I was woken again a little later on, by a nurse that I’ll call ‘nurse M’, telling me she needed to change the bed and I would have to get up and sit in the chair. I was in a lot of pain again by this time and tried to explain this to her, simply expecting assistance or an alternative approach.  Instead, nurse M gave me a very scathing look – “so you can’t get up at all?” she asked, “how did you get to the hospital, in an ambulance?” I tried to explain exactly how difficult it had been to get to the hospital and how we did it out of sheer desperation, but she interrupted – “So you’re saying to me that last night you managed to walk but this morning you can’t?” Nurse M raised her eyebrows and went on arguing with me, without letting me explain, until she finally said “fine, if you want to lie in your own filth all day in a dirty bed that’s entirely up to you!” She turned and walked away, holding her hand in the air to silence my answer.

I was shocked and upset by her attitude, especially since I had done nothing to provoke it – it’s not exactly my nature to be awkward or cause offense, quite the opposite really. The young doctor had witnessed it all and approached nurse M, explaining that I had a severe longterm medical condition, was in a lot of pain and being kept immobile on the advice of the doctors and that she should learn to be more sensitive. Nurse M even had the nerve to shrug and walk away from her, mumbling ‘whatever’; she was obviously used to intimidating people and felt herself above the younger doctor.  I realised at this point that nurse M was going to be a problem, I just didn’t realise how much.

The next few hours were torture, literally. My pain returned to the level of the previous evening and I became quite distressed; yet my calls for help were ignored by both nurse M and the other staff. I was aware of her discussing me with them and felt that she was influencing their opinion of me, but have no idea why she took such an obvious dislike to me. I also overheard a lot of other things. For instance, once she discovered that I was due to have my Tocilizumab infusion that morning, she complained that she did not want me on her ward as it was an expensive drug; even when another nurse explained that it was paid for, prescribed and waiting for me on my regular ward she was adamant I leave.

Feeling desperate for the toilet, I asked for assistance and was offered a comode despite the fact the doctors had told them to keep me in bed. They were still due to investigate the hip, as well as some back pain, and until we had answers I was supposed to be kept immobile. I was too overwhelmed with everything to argue though and with assistance (and a helluva lot of screaming) I managed to go. Unfortunately, when I buzzed to be helped back to bed, it was nurse M that came and she wasn’t happy. She told me she couldn’t offer me any physical support as she ‘had her own problems’ having been off work for four months with a bad back; I requested that she find someone else to assist me, as I wouldn’t manage without, but she just said “come on, let’s just get it over with”.

She offered me her hand and I put some of my weight through it but was hardly off the comode when she let me fall and shouted out, grabbing her back. The curtain was whipped back with me lying prone – half on the bed and with my pants halfway down – as she made a song and dance, letting everyone know how ‘that girl’ had put her back out. The staff crowded round her, telling her to go and rest and offering her pain relief, but I was left to struggle and sort myself out; totally humiliated and in excruciating pain, not knowing if I’d done any further damage. Nobody cared. And nurse M made a point of complaining in front of me for the rest of my time there too.

There is more that I could say about nurse M’s mistreatment and bad attitude, but I think this is enough to give you an idea of how serious things were. I have already spoken with PALS – the Patient Advice and Liason Service – was visited by them during the rest of my stay and am in the process of putting together a formal complaint against her. Not only because I want an apology for myself, but I worry that if she treated me in this way, (when I can at least speak up for myself a little), how is she treating people who are more vulnerable and can’t communicate such treatment to others? She is working on a ward with a high intake of patients and I wonder how many of them are experiencing something similar to what I did, it’s frightening and totally inexcusable. No wonder both my grandmothers were terrified of being admitted to hospital and preferred to suffer in the comfort of their own home. The care you can receive in hospital is totally unpredictable, ranging from superb to abuse; I have been aware of this for a while, but this time I’m determined to do something about it. /rant over

The hours passed slowly. Throughout most of this, I was in some of the worst pain I have ever experienced and as a result was constantly crying, whimpering and groaning (I don’t mean to sound dramatic but that’s how it was – pain does funny things to you). I was told that I wasn’t due any pain relief, although we found this not to be the case later on. Nobody paid any attention to me; I was totally alone, humiliated, confused, scared… especially as there seemed to be no sign of anything changing and the pain just got worse and worse. I became totally desperate and tried to text my boyfriend’s mum, asking her to ring my infusion ward to see if I could be transferred there as soon as possible. They knew me there, they knew I wouldn’t play on or exaggerate my pain/immobility, would be more understanding… anything to get me away from all this.

Then my phone rang and it was my mum; she had phoned the ward to see how I was and had been told I was fine but had had ‘a few tears’. Realising this didn’t sound like me at all she’d decided to speak to me herself… she was shocked by what she heard. I was so distraught with the whole situation by this point that all I could do was sob down the phone. Like all good mums, she promised she would sort it out for me and I knew that she would. It turns out that she rang my Rheumy’s secretary (who we have a good rapport with), and explained what was going on, in tears herself by this point. My rheumy was at a conference that day, but the secretary sent his registrar Evin down almost immediately.

I have never been so happy to see a Rheumatologist! Things turned completely on their head from that point but I’m still a bit traumatised by what I went through. I was given pain relief immediately, after a seven hour gap, but the pain was that advanced that it took further doses to get to a bearable level. The registrar examined me, spoke to my rheumy over the phone and came up with a plan of action straight away. My friend and my mum came to see me and although the pain was better by then, I think it still came as a shock to them. Strangely, I didn’t see nurse M again – I’m guessing she decided to keep her distance.

The rest of the day is a massive blur, as I was drifting in and out of sleep. I had multiple Xrays at one point, of my hips, neck and spine and heard them mumbling things about lines and shadows and necrosis… But the important thing was that my pain was starting to be more controlled; my mum and friend were there and my boyfriend would join me later… I felt safe.

I went straight from Xray to Ward J6, the ward next door to my infusion ward and a ward I have spent time on before. Again, I don’t really remember much as I was so out of it, but I finally felt I was going to get the care I needed.

L

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