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Posts Tagged ‘Pain Relief’

Just a quick update for today, as I have a list of things I’m supposed to be paying some attention to and am slacking. The referral for my Home Care Package has finally been arranged and one of the carers and the Occupational Therapist came to introduce themselves this morning. The Package is called Intermediate Care and is the Domiciliary version, meaning I will get the multi-disciplinary rehabilitation in my own home, for however long I need it. This includes constant reassessment of my how I manage in my home environment, my mobility and dis/ability; aiming to improve these things at a pace that will be based on many different factors individual to me, but for now will be baby steps.

Again, it was stressed to me just how important it is to keep myself moving in little ways and often. They were quite pleased with the amount of gentle stretching I was trying to keep up and showed me a couple more exercises to add, mainly flexing at the hips and knees, but with very little / no weight-bearing for now. They looked at my transferal from sitting to standing & standing to sitting, which I was finding even more difficult than normal thanks to my fat knees; they mentioned the low sofa again and I promised that we would get a more appropriate chair for me at the weekend. Then they assessed my walking, which is not very good so early in the day, even with the zimmer.

We talked about the support I will start receiving next week, which will include at least one visit each day to make sure I am washed, dressed and safely set up in the upstairs snug. They do not want me to attempt the stairs yet, even with assistance;  every week we will set goals, so that is something I can aim for another week perhaps. My goal for this week is simply to gain better control over my pain, which in turn, should allow me to start working towards becoming more mobile. I will also have visits from the physio, to make sure I am moving joints and weightbearing correctly, and to provide more of a routine to my exercising so that I can pace myself and build up accordingly. For example: If I can manage to walk the length of our upstairs corridor and back, every hour, at the start of the week, then by the end I will hopefully be able to do two lengths every hour, and so forth.

Today was just an introduction but it all sounds very promising; in fact, it sounds like I might have quite a busy time ahead! I know it’s going to take time and won’t be easy, that the most important thing is still going to be finding the right medication to control the Still’s Disease, but I am determined to get myself back on my feet and maybe even stronger and fitter than before.  The problem I’m having right now is information overload, especially since the increase in pain relief makes me feel quite drowsy at first and reduces the number of things that manage to stay in my head!

Now on to the good news!

I heard back from my Disability Living Allowance application that was posted recently and have been awarded the highest rates for both Care and Mobility, which is going to be a fantastic help in purchasing things that will make my life more comfortable right now.  I was actually stunned when I opened the letter. I guess I have been fighting the Disability thing for a long time now and trying to struggle on; it has taken something drastic to make me realise that I need/qualify for this support and yet, to see it writing was just… hard. I don’t know if that makes sense to any of you. I am learning to (re)accept it now and, of course, am extremely grateful for the support I am receiving.

Anyway, that’s all for now. Looking forward to spending some time with my family this weekend.

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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{Backdated Post}

This morning was an extremely difficult time, but I was closer to getting things more under control and was finally receiving the right care.

They woke me at 8.00am to take me down for an MRI (Magnetic Resonance Imaging) scan of my hips and spine; unfortunately, the porter collected me before the pain medications were dispensed and by the time we got down to Radiography, I was distressed and shouting out with the excruciating pain once again, especially after being ‘patslided’ numerous times (this is undoubtedly a useful way of manouvering immobile patients, but does not protect you from the pain of such movement). They had to call up to the ward to bring some relief down, since I needed to be still for the 40 minute scan and at this point it wasn’t looking likely. Even the Morphine didn’t really settle things down; I was realising that by the time it got to such extremes, it took repeated doses to get back on top of it. They asked me if I wanted to postpone the scan but I felt that it was needed to get to the bottom of what was causing the pain. The sooner we found that out, the sooner we could treat it properly.

So I told them I wanted to go ahead, grit my teeth and attempted to take my mind elsewhere.

The MRI Scanner

I’ve had many MRI scans in the past and usually find them quite relaxing, despite the noise. They lie (sometimes strap) you on a stretcher that moves into a tunnel, where the scan takes place. In the above picture it looks like the patient has gone in headfirst, but in my experience my head has been at the entrance – much less claustrophobic. Usually, they give you headphones (often with music), both to protect your ears from the noise and to communicate with you from outside of the room; they also place a buzzer in your hand, which you can press at any time you feel distressed or want to stop. The scan is not painful. It basically consists of rotating magnetic signals being blasted at your body as you lie very still – you cannot feel these but they are expressed as noise patterns that change with different frequencies etc. So for five minutes it might sound like you’re surrounded by knocking, the next five by drilling, the next five by clicking, tapping, zapping and so on… A lady I met even described one of the noises as reminding her of frogs croaking first thing on a wet morning in Borneo!

I tend to just shut my eyes and relax, as if going to sleep; but this particular scan wasn’t that easy though. It was torture just making myself lie still, as my body kept trying to tense up to protect itself from the pain; I had to consciously relax every muscle and breathe. I think I cried through a good ten minutes or so of it but knew that wasn’t helping, despite it being an automatic response. The pain was still severe but eventually I managed to distance myself from it; I can’t exactly explain how – I’ve read a few books on meditative practices, so maybe they came in handy? I knew that each change in the sound pattern meant a certain amount of time passing and soon enough it went silent and a voice in my ear was telling me it was finished. To say I felt relieved would be an understatement!

Obviously, it takes time for someone to analyse the MRI scan pictures and give a full report, but sometimes things are apparent straight away. For me, they noticed that I had a lot of fluid surrounding my left femoral head (ie. Left Hip joint) and a smaller amount around the Right. I was taken straight to another part of the department to have this removed by aspiration and ultrasound. By that point, I was allowed further pain relief and this dose worked enough for me to feel a lot calmer. It’s embarrassing to look back on now, but I caused quite a scene that morning howling like a banshee and such. Thank goodness the worst was now over.

I was quite nervous about the hip aspiration. I’d had it done as a child but they put you under with gas at that age; this time it would be an injection of local anaesthetic. The team of people with me were lovely and great at making me feel at ease; the Radiographer in particular had a very calming effect and I felt in very safe hands.  He used the ultrasound scanner to examine my left hip first and to pinpoint just where the fluid had accumulated around it. This is similar to the scanners you see unborn babies with – a cold gel is placed on the surface of the skin and onto a ‘probe’, which the radiographer slides over the area in question, sending ultrasonic waves through the skin. These waves bounce off things inside at different levels (according to density I think), to create the pictures you see on the screen – the main thing I learnt is that fluid bounces back as black, so when he was looking for the fluid around my hip joint, it appeared as a large black shadow around/within the hip, which appears a greyish-white as that is denser.

Once he found the fluid, he needed to find a straight path to it from the skin surface without passing through any major blood vessels – there is actuallly a lot more time spent preparing the procedure than the procedure itself. Happy that he’d found a route, the radiographer then slowly began to administer the local anaesthetic by long needle; he did this in stages to ensure that I was as numb as possible, but as he came closer to the joint itself, he began to warn me that I’d feel quite a bit of pain but it would be shortlived. The pain didn’t come. He kept asking me “are you sure you can’t feel anything?”, while jabbing the needle further in, and I kept shaking my head. It was a bit like the movie ‘Death Becomes Her’ where the doctor can’t understand how her very broken wrist isn’t troubling her!

I asked him if this was something to worry about and he pulled that confused, thinking look that doctors do sometimes, as he explained that most patients find it at least uncomfortable to have a needle in the joint capsule. He said if I really wasn’t feeling anything, then he’d be concerned that I had some nerve damage to the hip itself and that this should be investigated too. For now though, we concentrated on the aspiration. With the needle in place, he was able to aspirate 5ml of fluid from the hip capsule; this didn’t look an awful lot to me – one small syringe, whereas my knees used to drain 2-3 much larger syringe-fulls as a child – but apparently it is a lot, as there is very little ‘spare room’ within hip joints. I was told that this explained the level of pain I was in and the lack of response to pain relief. He told me that they could have given me all the pain relief in the world, but as long as that fluid was stretching the joint out of place as it was, I’d have had excruciating pain. Hopefully, with it now gone, things would settle to a more bearable level.

I was confident that they would; in fact, I was pretty sure that I noticed an improvement as soon as the fluid was gone. I was by no means cured – the fluid needed to be sent for testing to rule out septic arthritis and we needed to find out if anything other than the Still’s Disease was causing the hip to produce so much fluid / get the full report on the MRI scan etc…  I have had very fluidy joints in the past, but I can’t remember where it fits in with things. Since this has become a major issue this past week, I will look into it myself at some point. After the hip aspiration, I was also given an abdominal ultrasound; something I was due to have that day anyway. It showed that my liver and spleen were enlarged, but since this is common with my flares, it didn’t cause him too much concern.

The rest of the day blurs in with the rest; I was to remain slightly propped up on my back in bed to take the pressure off my hips until the full MRI report was back, but with no turning timetable; instead I had to be checked for pressure sores and, when developing the starts of them on my heels, had to rest them on an inflatable. The auxillaries had to do everything for me – wash me, dress me, toilet me, help feed me… but when you feel so poorly those things don’t bother you, you’re grateful for the help and they were brilliant at providing it. I slept a lot but my Kindle came in handy as I managed to hold it above me to read for short periods but then my friend downloaded some audiobooks onto my blackberry, which was even more perfect! People were always popping into my room to see if I was okay and I had plenty of visitors, so strangely, I never felt bored!

It was decided that we would go ahead with my fifth Tocilizumab infusion that afternoon; the initial feeling on examining the fluid from my hip was that it was ‘viscous and stringy’, a good sign that there was no infection present. If it turned out there was, I’d be hooked up to IV antibiotics straight away anyway… it was one of those ‘risk-weighing’ decisions and I guess there was more risk in leaving the Still’s untreated by this point.  My infusion ward was only next door and my regular nurses took it in turns to pop round and check on the infusion and to see what ‘trouble’ I’d got myself into. They all have a way of making you feel that they care about you as an individual and they have a lot of patients going through their ward each week/month/year.  I guess this is an example of how good care can be in hospital too – from one extreme to the other.

My consultant visited that afternoon but I don’t remember much about the conversation now. All I know is that I was pleased he took the time to see me and it again reassured me that I was on the right track. One thing that we both agreed though, is that I’ve had some nasty flares and some severe joint involvement over the years; but this hip pain was totally out of proportion to anything I’d ever experienced and we needed to get to the bottom of it fast.

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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{Backdated Post}

Things on the gastric side were looking up. I got the results back from yesterday’s Endoscopy and they showed that I had Gastritis – significant inflammation of the Oesophageal tract (which also explains the widespread chest pain), Stomach lining and Duodenum; not nice, but better than the ulceration that I had been concerned about.  Fortunately, all the IV medications I had been taking since being admitted were helping already – a combination of  Anti-Emmetics, (which close the top of the stomach and encourage things to flow in the right direction, as well as helping with nausea), Proton Pump Inhibitors, Antacids and H2 Blockers.

I still had some pain, but was told that it would take time for this to settle down as the inflammation eased. A nutritionist advised me to alter my diet and cut out certain irritant foods for a while; mainly spice and acidic foods such as tomatoes, peppers, onions, cheese, fruits and juices – all of my favourite things basically. Instead I was to eat lots of potatoes, white meat and fish, pasta, rice and vegetables, also things I already eat a lot of so no problem there. Hopefully, these limitations won’t be forever though as I’m a big foodie and like variety! Their guidelines said a strict diet for 4 – 6 weeks, after which I can start trying myself out with things a little bit at a time to see how I go… well except for spicy food, that’s going to take a lot longer and I love my spicy food 😦

They also stopped my Naproxen and Cyclosporin as they felt that these two drugs in particular had contributed to the Gastritis. I should mention that they did liase with my Rheumatology team throughout my stay and that they felt it was more likely to be the Methotrexate that I stopped recently. But, I was under the care of Southport Hospital and respected their wishes for the time being.

Things didn’t stop here though and another problem soon arose. As time progressed, I started to notice that the dreaded temperatures and sweats were increasing, plus I was starting to develop a very visible Still’s rash all over my body. I tried to show it to the nurses and doctor, to explain the significance of it and what usually followed, but I had been admitted with gastric problems and they were their only concern. It turns out that the two were connected though and that I potentially hadn’t been absorbing my oral medication for a month or so, leading to the major flare that follows.

As today went on, I became less mobile and able. I felt the pain and stiffness sneak into my joints; first making it difficult to reach for and hold things; next I began to struggle to sit and stand without help and then even hobbling the short distance to the toilet became a huge effort. By evening I was in a pretty bad way. A nurse finally listened to me and gave me the IV morphine I’d been prescribed to cover all of my pain whilst off oral meds; I wasn’t expecting any visitors and so fell asleep for a few hours – big mistake!

I woke up from my nap with all joints a-throbbing and found it impossible to even lift my head up, never mind sit up fully. This happens to me quite often, especially if I lie flat on my back for a time – I don’t know if it is simply part of the Still’s Disease or some throwback from the Dermatomyositis (a form of muscular dystrophy) I was diagnosed with at 14, but it has always been a big issue for me.  I buzzed the nurses to explain and was told that myself and another lady were being moved to another ward shortly and that they would sort me out there. Ironically, we were going to the ‘upwardly mobile’ ward, just at a time when I felt anything but mobile.

The problem about switching wards is that you have to make the staff aware of your problems all over again. It was obvious that they weren’t expecting a patient that had to be transported on a bed and pat-slided (a word I came to dread over the next week); this was a ward you were sent to  recover and prepare to be discharged. The two female nurses were lovely to me as I explained my difficulties and promised to find me pain relief and assistance; however, it turned out that they weren’t fully responsible for my care. It would be a male nurse called Conrad that would make all the decisions.

The first decision he made was to keep me rolled onto my left side, with pillows propped along my back so that I couldn’t roll flat. This was because he’d read in my notes that I was feeling nauseous and didn’t want me to choke if I was sick while lying on my back. Yes, I can see the line of thinking here, but I was no longer vomiting or even feeling sickly. The next decision he made was that I looked ‘too young’ to need any form of pain relief stronger than Paracetamol; I heard him say so at the nurses’ desk, which was a stone’s throw from my bed. When I told him I’d been on longterm pain medication for 16 years and that I knew Paracetamol wouldn’t help, he told me that it was ‘stronger than everyone thought’ and to ‘trust me, it’ll do the trick’.

It didn’t.

An hour or so later, I was in tears with the pain but he would not budge on the matter, even though I had actually been prescribed IV morphine and Oramorph by a doctor. I remember thinking it strange that my main pain seemed to be coming from my ‘good’ hip, but then I had been lying on it for over twelve hours by this point. I had no idea then just how bad things would get.

The night went on and the pain grew worse, but I must have managed to fall asleep at some point because I woke at the start of a nightmare the next morning.

L

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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.

L

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Sorry for the lack of posts recently; I haven’t been feeling too good at all and so am unable to put my mind or hands to much blogging. Ironic that when you have the most need to write about things, you are are least able to do so.

I’ve been spending most days propped up on pillows on the bed, unable to manage the stairs until late afternoon / evening when my second lot of painkillers kick in. This knee and hip just don’t want to budge and the pain in my lower back seems to be getting worse as a result of moving awkwardly. The left elbow is also locking up again at an angle, making tasks such as chopping food difficult.

Tramadol takes the edge off it but I’m still struggling and have resorted to using a home TENS machine as well. This is good for muscular problems (like my back) but hasn’t really helped my joints.  I had hoped to hear from my GP about changing my pain relief, but he has been away this past week. I have an appointment to see him on Tuesday though at least.

Until then, all I can do is as little as possible!

L

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