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Posts Tagged ‘fatigue’

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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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It’s a couple of days after my second Tocilizumab / RoActemra infusion and I feel exhausted – and I mean that really deep seated exhaustion that makes you feel too tired to even be lying down awake, the heart pounding, lung-crushing, head-spinning, soul-destroying exhaustion that comes with the fatigue element of chronic disease.

I can’t put my mind to anything; I’ve tried reading, watching a film, surfing the net, blogging…! To call it brain fog is an understatement; I literally can’t get my words together in my head and will probably have to redraft this at some point when I’m feeling better. Even reaching over to the bedside table for a pen to make a shopping list feels like a huge effort; in fact, I don’t think I can. So instead I will just lie here and play with my new Blackberry.

I’m pretty sure I felt like this last time too but thought nothing of it as we’d had such a long day. I hope it doesn’t last too long because fatigue is the element I find hardest to manage. I’ve probably said this before, but at least with pain you can get some relief from pain medication – there is nothing that helps fatigue and you have no choice but to let it dictate your day. The main reason I managed so well on Orencia was because it seemed to help the fatigue, if not the joints.

As well as the fatigue I have been feeling a bit queasy, but then I had been feeling that way prior to the infusion too, putting it down to the pain in my hips. I also have terrible skin and I know that happened last time because the red marks it left are only just starting to fade. I’ve never suffered with bad spots (apart from a pred-induced bout once) and now I feel like a spotty adolescent with Mount Vesuvius erupting on my chin. Last time it cleared up after the initial ‘infestation’ and I hope this time is the same. I asked a few pals who are also on Tocilizumab if they had experienced anything similar and they had, but thankfully only at the start of treatment.

I’m supposed to be popping in to my cousin’s little girl’s First Birthday later on this evening, so I need to get some energy from somewhere. Maybe (another) nap will help?

L

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It’s been almost a week since I doubled my Methotrexate dose from 7.5mg to 15mg.  I was expecting that maybe I’d feel a bit queasy again like I did when I first started it, or perhaps even worse, but I haven’t noticed any difference in that respect. Instead, I am just ever so sleepy! Even when I have been very unwell during this current flare, I have managed to stay awake all day – with the fatigue presenting as a body-wide weakness.  However, for the past few days, I have struggled to keep my eyes open once it gets to lunchtime and I just want to sleep. Trying to stay awake makes them burn and there’s no point anyway, because my brain just can’t focus on anything, which is why I haven’t managed to post as often on here.

Losing part of my day to sleep is bad enough but the ‘brain fog’ (as people call it), is even more frustrating. I’ve mentioned before how words just seem to drop out of my head and how I make silly mistakes like pouring water from the kettle over my cereal and find that I’ve put the milk away in the dishwasher… well yesterday it took a more worrying turn, when I forgot to switch the gas hob off and left it burning for about 4 hours before I noticed. Thankfully it remained lit or I could have had a major gas leak.

I’m hoping that the shock of forgetting something so vital will make me extra vigilant now, so that it won’t happen again. Also, that the ‘brain fog’ clears up after a time, as the nausea did.  But I can’t help but feel that the Methotrexate is having the opposite effect to what we hoped.  When I first started Orencia I felt like a different person, full of energy, even if the inflammation was still there; then I started on a small dose of Methotrexate and lost some of that energy and feel good factor; now, after doubling the Methotrexate,  I feel sapped of all energy. It makes me wonder how things would be if I stopped taking it and just had the Orencia – would I feel as good as I did at first?

I know it’s not the end of the world, but I’ve always said that fatigue is (most of the time) more difficult to deal with than pain – you can take pain medication to provide some relief with that, but there is nothing for fatigue. It just knocks you for six and stops you in your tracks, leaving you with no choice but to put everything on hold.

And with the New York trip around the corner, I just can’t let that happen.

For now, I’m just going to do as my body tells me and hope it’s enough to pull myself out of this sleep-hole, I guess it is working overtime to heal right now too.

Sweet dreams,

L

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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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