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Posts Tagged ‘Pain’

{Backdated Post}

Today was another quiet day on the medical front, with more of the same as yesterday; mostly spent passing time with my wonderful visitors. Since my boyfriend is my main carer at home, they allowed him to stay longer each evening to get me washed and setted in to bed, which was better for me and took some pressure off the nurses.  Outside of visiting I had plenty to keep me busy by getting to grips with the bedside TV/Internet/Telephone that had just been installed in my room, and which turned out to be a lifeline for me over the next few days.

Symptom Watch: Still’s Rash

I thought I’d use this time to talk about something that everyone during my hospital stay found fascinating in terms of the Still’s Disease itself and that is the Still’s Rash.  The rash became very prominent during my initial stay at Southport and remained so throughout my stay at Manchester too. Junior doctors, nurses and Rheumatology specialists kept popping in to have a look and even those without much background in Rheumatology were intrigued and asking many questions. I was pleased that people were taking an interest and even I feel like I have learnt something new about my rash and what it means.

In my experience, the Still’s rash tends to appear at the very start of a flare up, alongside other systemic symptoms such as fever, headache, loss of appetite and fatigue; it is usually a good indicator that things are getting worse and that joint involvement will shortly follow. The rash itself manifests in different forms, but I am convinced it is all the same rash:

1.

Two examples of the speckled rash that I get with Still's Disease - On my feet and the back of my hands.

Faint and speckledy, as if under the surface of the skin, and more visible in certain lights, such as fluroescent lighting, as in the above photographs. This type of rash is usually widespread and appears across the backs of my hands and feet, the bottom of my arms and legs, and across my chest and abdomen. It can often look like the type of rash you get with an allergy but is not raised, hot or itchy. This is usually how my own Still’s rash makes its first appearance, especially if I’m experiencing only ‘minor’ Still’s issues.

2.

An example of the hot, red and angry patches that appear during Still's flare - here the focus is at the very top of my arm.

Angry, red and hot patches that spread across the tops of my arms, thighs, chest and cheeks. These appear when I have quite a high temperature and/or a lot of inflammation happening in my joints (separate to the joints themselves being hot and red though).  The patches are usually well-defined, with just one at the top of each limb or on each cheek. The heat that comes from these is amazing and will quickly warm anything used in an attempt to cool them down. I picture it as an outlet, to release the heat from fevers and the inflammation that is rife within my body. This type of rash usually occurs mid-flare, at the height of disease activity.

3.

Photos showing the purple smudges under my eyes and the 'blotch' type rash that appears on my face, neck and chest.

Random purpish-red smudges and blotches that appear anywhere, but particularly under my eyes and on my face, neck and chest; they are not raised and do not itch but can feel warm at times. This type of rash seems to be related to my level of pain and fatigue more than anything else, although this is just a theory. It is also usually other people that point it out to me, rather than me noticing it myself. It can come and go, or change appearance, quite quickly.

It was only during this past hospital stay that any connection was made between this type of rash presenting and my level of pain. The Registrar noted that I had the redish-purple smudges beneath and around my eyes, as well as elsewhere, every time he saw me in a lot of pain and so I began to monitor this with the nurses. Lo and behold, each time I requested Oramorph or was due my Morphine, the smudges would appear! It felt like our very own experiment and discovery (highly scientific of course!) and my Rheumy was quite interested to hear about the possible connection too; I wonder if anyone else has noticed something similar in their own rash pattern?

As I said earlier, these rashes appear early on in my flares and are a clear sign that things are going to go downhill with the Still’s Disease. Quite often, if I increase my dose of Prednisolone for a short time on the rash presenting, I can prevent things from getting any worse and keep the joint involvement at bay. So, you can see that it can be quite useful to learn and understand your body’s own rash patterns, (I can’t say that the pattern I’ve described here is the same for everyone). Think about the times when your rash is most prominent and what is happening to your body in terms of Still’s Disease at the time – are there any triggers, any differences in the rash’s appearances between symptoms, is the timing significant? Maybe keep a diary to record details about your rash for a while, especially if you are newly diagnosed, until you start to see a pattern that allows you to use it to your advantage. It might be that there isn’t a pattern for everyone, or at least not beyond it presenting alongside other symptoms, but it is at least worth looking into.

Once a flare does take hold and progress into joint involvement, my rashes and other systemic symptoms tend to gradually ease; perhaps not altogether, but they become less troublesome than the joint problems that follow. Again, I am aware that this may not be the case for everyone, just my own personal observations. If you wish to share your own with myself and others, please comment at the bottom of the page.

I’d be really interested to hear from other people about their own Still’s Disease rash/es; in fact, I have wondered if it might be a good idea to put together a collection of images to compare the differences and similarities between individual cases. A sort of project into Still’s Rash that we could eventually use as an information resource.  If anyone has any questions or thoughts on this, please feel free to email me at stillslifeblog@gmail.com

I am also going to include a brief poll here:

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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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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Sexy Surgical Stockings

It has been two days since I had the surgery to remove the scarred/infected tissue from chronic Hidranitis in my left groin and things are going okay. I still have to wear my lovely stockings and keep my legs raised, so I am in bed surrounded by books, Dvds, my laptop, phone, Kindle and DS just in case I get bored.

 

The pain isn’t too bad, a little bit worse today than it has been so far but I’m keeping up with the four doses of Tramadol a day.  What bothers me is how much blood is soaking the dressing, the patch gets bigger every time I look at and all I can smell is blood. I can’t wait to get it changed tomorrow because it makes me feel really grotty. At the same time, I’m dreading it because I know it will be uncomfortable, maybe even painful.

I had a nice treat though today – to celebrate four years together, my boyfriend cooked me a huge steak, chunky chips, corn on the cob and peppercorn sauce and served it to me in bed with my own little candle on the tray 🙂

For every cloud there’s a silver lining,

L

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I’ve got a busy few days ahead so not sure when I’ll be able to post updates.

Firstly, tomorrow I’m going for my fourth Orencia / Abatacept infusion in Manchester, which means another blood test and hopefully a visit from my rheumy.  I’m interested to see what the results will show. I’m not really sure what to expect from them, as I’ve been up and down on a  physical rollercoaster since the last ones four weeks ago – just before I ended up in hospital.  If they’re better, then great but are they better because of the Orencia or because of the Prednisolone? If worse, well where does that leave me?

Results aside, I do feel better in some ways – like I’ve said before, I have more energy most of the time and I am up and about, able to do chores and things nearly every day. But I am also in pain every day, in numerous joints, especially my left shoulder, elbow, wrist and fingers.  Most days I can barely move this arm; the elbow has been locked since May and is showing no signs of improvement, even when I increase the Prednisolone.  I guess I’ve just become accustomed to the fact that it hurts and doesn’t work properly, although I know that’s not right.

Hopefully, I’ll get more answers and a plan of action tomorrow.

On Friday I’m having minor surgery on my hidrandenitis abscess/gland/tracts/scar tissue – all of which is hopefully going to be removed and then stitched back up. I’m sure he said it would be stitched back up; sometimes they leave the wound open to heal from the inside but I want those stitches… I’m still feeling a bit nervous about it all, I guess it’s unknown territory for me.  What I have to remind myself of is all the misery it’s caused, having to put up with the damn thing for over a year now, and how sore and uncomfortable I’ve been every day because of it. Hopefully, this will be a means to an end of all that.

I’ll be glad when it’s all over and I can spend the weekend relaxing.  We should actually be celebrating, because Friday marks four years with my wonderful boyfriend, but I guess that will have to be put on hold unless he has something up his sleeve…

For now, I’m just making the most of time at home and looking forward to film night with my friend – who is bringing Zoo Keeper and Mr Popper’s Penguins round later.

You’re never too old for Penguins..

L

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Well yesterday got worse rather than better really. I developed a migraine later on in the evening and so I finally gave in and went back to bed, but I didn’t sleep very well because of the pain in my joints, mainly those in my left arm/hand. I’ve been keeping up with my painkillers and things seemed to be staying at a manageable level, but yesterday it felt like somebody had replaced them all with smarties.  Every inch of my body seemed sensitive to pain, which got me thinking…

More women than men are diagnosed with Still’s Disease and other Auto-Immune illnesses; many seem to notice an increase in symptoms just before or during their menstrual cycle, possibly due to hormonal changes.  These were facts that I was aware of but hadn’t really paid much attention to – pain was pain, whenever it hit, and there wasn’t an awful lot I could do about it anyway.

Or was there?

The thing that drew my attention back to all this was the Hidradenitis and Pilonidal issues I’ve had over the past year – I gradually began to notice a pattern, with the sites swelling worse than ever each time I approached menstruation, then gradually improving afterwards.  More recently, I noticed that the joint pain increased around this time too, but whether that is due to hormones, increased sensitivity, or an increase in infection levels I’m not sure; it could be either or all.

“There are hormone changes that can affect the intensity of inflammation and also fluid shifts that can increase the swelling of joints at different times in the menstrual cycle. While some patients clearly describe fluctuations in symptoms, many other patients do not”.

So, if all this true, is there anything we can do about it? According to one article, we should adjust our pain relief beforehand in anticipation of the pain increase, to tide us over this peak of the rollercoaster. It might also help to reduce physical activity around this time too.

But just knowing that this could be the cause of some of the seemingly random pain blips makes them a little bit easier to manage, espcially knowing that they will tide over…

…until the next month.

L

Ps. Please fill in the following poll to help me find out if there is any truth in this:

 

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It only happens from time to time, but today is one of those times – A bad day, when I feel like curling up in bed and waiting for tomorrow, even though the sun is shining outside.

It doesn’t help that it’s nearly that time of month again, as that makes everything worse inluding pain, moods and fatigue.  And today my pain is definitely worse, although nothing has changed to cause this; joints are generally aching, my left shoulder and elbow are sore, stiff and swollen to the point where moving them is a no-no; my mouth and tongue are rife with ulcers and then the Hidradenitis / Pilonidal problem seems to be flaring too, with a third site developing very similar to the one I’m having surgery on.

Which brings me to the second cause for feeling low.  I’d been feeling pretty okay about this surgery until a couple of days ago, when it suddenly hit me what it was I’d be going through – it isn’t a major operation but it is in a delicate area, so it will be a ‘leave your dignity on the doorstep’ situation. Obviously, I’m worried about the fact that it is probably going to hurt too, even though it should mean less pain in the longterm. Mainly though, I’m worried about complications. Things never seem to be straight forward for me; but I hope to God that this time they are, because I don’t want anything to get in the way of enjoying our New York trip.

For some reason, the fact that I have to be dropped off and can’t even be accompanied to the ward bothers me more than it has in the past too. I’ve had surgeries before and the procedure has always been the same, but it didn’t seem to bother me then – so why now? Maybe because it is a different hospital to the one I’m used to? I didn’t have the best of experiences last time I was treated ‘elsewhere’ after all.  Maybe I’m just feeling a bit more fragile than usual too; whatever the reason, I hope I get over it by Friday.

Anyway, I’m going to try what I usually do when I feel down and that’s wallow in it for a few hours and then snap myself out of it; I’ll lie in the sun for a bit, paint my nails, listen to some music, watch a girly film, eat some chocolate… – anything to perk myself up – and hopefully tomorrow will be a better day.

L

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