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Archive for March, 2012

I thought I’d take some time to share the gentle exercises that the Home Physio gave me to help with my ‘global’ joint mobility, starting with the neck exercises. For months, I’d been having particular problems with neck pain, limited movement and weakness in the neck muscles,  as well as spasms, twinges and lots of bone crunching and popping, as you can read here. Some of you might be able to empathise, some may have the odd twinge from sitting at a computer, book or craft too long and just want to keep that neck moving…

These exercises have really helped get things back to normal for me, in this area at least: I have a much better range of movement,  (can now touch my chin to my chest, look up and turn my head both ways a good amount); there is less tension in the muscles surrounding the neck and so no more neck spasms; the neck feels generally stronger; I haven’t noticed the crunching, grinding noises as much AND there is no significant pain there anymore).  Plus, they’re quick and so easy to remember, I was soon going through the routine without having to think.

All good. So, if I can help someone else by passing these on, all the better 🙂

Exercises:

Firstly, it’s always a good idea to warm up muscles that you are going to exercise. I use a heat pack, but placing a warm, dry towel on the area, for a few minutes, will probably do the trick in this case too.

  • Bend your head forward, putting your chin on, (or as close to as possible) your chest and hold for 2-5 seconds. Repeat 2-5 times.
  • Tilt your head backwards gently, looking up towards the ceiling or as far as is comfortable and hold for 2-5 seconds. Repeat 2-5 times.
  • Turn your head to one side until your chin touches your shoulder or you feel the stretch in the muscles running up your neck/shoulders. Stop at this stretch, do not push past it or turn until uncomfortable if you have any restriction. Hold for 2-5 seconds and do the same, turning to the opposite side. Repeat 2-5 times.
  • Tilt your head to the side until your ear touches your shoulder or you feel the stretch in the neck muscles. Hold for 2-5 seconds and do the same, turning to the opposite side. Repeat 2-5 times.
  • Sitting / standing as straight as possible, lift your shoulders to your ears in a ‘shrug’ and hold for 3 seconds then relax them completely. Pull your shoulder blades back and together and hold for 3 seconds then relax. Repeat 2-5 times.
  • Roll your shoulders through a circular, extended ‘shrug’ motion, making 5 circles in the forward direction and repeating five times in  a backwards direction to finish.
  • Breathe a sgh of relief, you’re done!

I set my alarm to do this three times a day and it literally takes 10 minutes.

You can adjust this program to suit your needs – if you do have a particular problem with your neck, you will want to start off slowly, but as time passes you should find you are able to hold for longer or to repeat more times (I’m up to 8 reps now). If your neck is pretty good to start with, but you want to prevent any problems arising through computer use etc, then hold and repeat to your capability. Always remain inside your comfort zone and stop if you feel any pain, fatigue or discomfort – you can always try again later.

Once you have finished these exercises, try and keep the neck and surrounding muscles warm by wearing a high necked top, scarf or towel for half an hour or so. This prevents them from cramping or re-seizing up.

Happy exercising!

L

Useful Articles:

Simple Neck Exercises  (The Physiotherapy Site)

Exercises For Neck Arthritis   (ARC 4 Life)

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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 had my first outing with my carer today, for a session in a local heated pool; something that I requested, since I felt that my joints and muscles would benefit from being in the water. She picked me up about one o’clock and we drove into town. The pool is right on the coast and the weather was glorious, not a cloud in the sky, so I decided to try and walk from the car to the building rather than use a wheelchair. It was slow going, but worth it to feel the sun on my skin and the sea breeze on my face after spending so long indoors.

The pool is situated at a hotel for people with disabilities or who are recovering from illness / injury and so it is very accessible. I had been worried about silly little things like how I would get into the water using crutches, but of course this wasn’t a problem! I was expecting a sunken pool with steps down into it, but instead it was raised with a raised edge about a foot or so from the floor. This turned out to be much easier than I’d thought, I was able to use my crutches to get to the raised edge and sit on it, then my carer helped to swing my legs round into the pool near the steps down into it. From there I was able to stand in the pool, using the handrail to support myself and bouyed by the water, until I was fully in.

The water was lovely and warm, so soothing. Really, it is the first time I have been fully submerged in warm water for over six months – even though I love my bath lift, you can’t get right under and have a proper soak. I didn’t swim as we decided starting off slowly would be best, plus I doubt I could have even if I’d tried. Instead, we found a float for me to use and I just bobbed about, flexing my joints in ways I haven’t been able to out of the water. Being in water is the perfect exercise for people with arthritis or any joint/muscle problems because the water supports you, takes the pressure off limbs and joints, and makes it much easier to take them through a wider range of motion than you would usually.

We spent about half an hour in the pool altogether, which was just enough to start with I think; any longer and I might have set things back. It was slightly harder getting out of the pool but still not a problem; we were soon sat having a warm drink outside and I was home by four. I’m due back with the carer on Friday but now that I’m a member, I can use the pool whenever I like and take whoever I want as my support, which is great. It means that, once I’ve built myself up a bit and no longer need the carers, I’ll still be able to keep up with the swimming exercises and carry on with my strength building plan.

I’ve been shattered since I came home but that’s only to be expected; plus it’s a ‘normal’ kind of tiredness from actually doing something for a change, which feels good. I always feel really cold and shivery after I swim, so I’ve spent the rest of the evening snuggled under a blanket to keep myself warm and cosy.

I’ll be in bed before eight methinks,

L

Some useful articles on Swimming and Arthritis:

Water Walking (Arthritis Today)

Swimming Exercises For Arthritis  (LiveStrong)

Swimming For Arthritis (RAGuy Blog)

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Gastritis Returns

I’ve come to realise that the intense hunger pains I have been experiencing recently were not just steroid munchies after all, but the start of another Gastritis flare. Ugh. They became a lot worse very quickly, until suddenly they had developed into the familiar sharp ache in my upper stomach, causing agony after eating and drinking. The pain was so bad after eating my tea earlier that I was nearly sick again. I should have noticed the signs and realised sooner, but hopefully I’ve caught it in enough time to prevent things from getting as bad as they did last time.

I think I know the cause of the problem – I have been taking enteric coated Prednisolone tablets since being hospitalised with Gastritis in January, which are much gentler on the stomach; but for some reason my last box were just the regular type and this all seems to have happened over the time I was taking those. Thankfully, I was able to pick up some enteric coated ones from the pharmacy straight away, as my GP agreed this was more than likely the cause. He has also increased my dose of Omeprazole (a stomach protector) and given me an antacid; I hope these things together will be enough to keep a major flare at bay.

I was doing so well too. I’d managed to stick to the bland diet and had just been starting to try the  occasional ‘naughty’ food, but even so these were just tiny amounts so I don’t think these were a contributing factor. Looks like it’s back to the mashed potato again for a while now though. I suppose it will be worth it in the long run and I most definitely don’t want a repeat of January. I only hope it doesn’t mean I’m not absorbing my medication sufficiently, which we think was the cause of this major Still’s flare.

In other news, the sore mouth / tongue rash has returned after my second Infliximab infusion. Not unexpected but not pleasant either; at least I know it’s in my system doing something. I’m managing to get about on my crutches a little bit more each day, which means I’m shattered by 7pm, but it’s progress mobility-wise.

I may be a bit quiet over the next week or so, as my mum has just had fairly major surgery and, although I obviously can’t be her main carer, I am her main support right now.

I’ll post when I can,

L

Related Posts:

GP Visit Regarding Chest and Stomach Pain

Stomach Pain Beats All

Side Effects of Infliximab / Remicade Infusion

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I had my second dose of Infliximab yesterday, a fortnight after the first. It was another long day, but everything went fine and so it shouldn’t take as long in future.  We arrived on the ward at about 10.30am and were taken to my room, where I had my cannula fitted and my blood tests and SATs taken; I was also weighed and have put 2kg on in the past two weeks, ugh. I’m hoping it is mainly fluid retention, as this is becoming much more apparent via my lovely moonface / hamster cheeks and distended tummy. I can still fit comfortably into my clothes, but if it carries on at this rate, I won’t be able to for much longer! With those formalities out of the way, it was back to the ol’ waiting game.

The nurses that look after me kept popping in to see how I was and to say that I look much better than I did this time two weeks ago. They’re all excited that this is going to be the drug to turn things around too. It must be nice for them to see a patient improving with their treatment and care and I’d love to be one of the success stories again. I managed to get about the ward on my crutches, rather than the wheelchair, and we joked that I’d be running up and down the corridors next time… you never know!

I saw my Rheumatologist in the afternoon. Like me, he is wary of getting our hopes up too soon; but, he did say he was cautiously optimistic, considering all of the high dose steroids I have received recently – I haven’t seen an improvement like this before. My left elbow is much straighter, the swelling in my knees a lot less than it was, and pain / movement is generally better. Even my temperature is lower. If it is the Infliximab helping, then I should see more improvement this time round and my Rheumy was confident enough with my progress to start reducing the Prednisolone, woo hoo. He told me to get in touch if I felt I needed any joints injected / a boost before our Dublin trip, but we both had a feeling I wouldn’t. So really, it was good news and smiles all round! 🙂

The Infliximab arrived just after 2.00pm and I was soon hooked up. I didn’t have the IV steroid beforehand this time round, just the anti-histamine. My nurse sat with us for the first half an hour, as allergic reaction is a particular risk during the second dose, but I was fine; the only thing I felt was very, very sleepy – if I closed my eyes I’d have fallen asleep sat there in the chair! It took just over two hours for the infusion to go through and I had my SATs taken every half an hour. There was another half an hour for the saline flush that followed, then I had to stay for an hour just to make sure that I didn’t have any delayed reaction, although this is unlikely – the riskiest time is the first ten minutes, but it’s better to be safe than sorry.

While we waited, my nurse asked about the side effects I had noticed after the last infusion and noted these down: The sore mouth and tongue rash is actually the most common effect that people on my ward have reported, although a lot of people treated with Infliximab there have Crohn’s Disease. It is something that should become less troublesome over time, I guess as the body adjusts to the new drug, and she advised I get some Corsodyl mouthwash. If this didn’t help it could be fungal and so might need Nystatin drops. The leg pain has been reported by two other women, one of whom actually went to A&E because of it. In both cases it was temporary and both women also experienced significant improvement in their condition; so, although she didn’t know what the cause was, the nurse wondered if it was some sign that the medication was actually doing something. Let’s hope so!

At about 6.oopm I was free to go; another long day but, hopefully, worth it. My next infusion is booked for four weeks time, which is 18th April, and I have the trip to Dublin in between. I know I’m not supposed to be getting my hopes up too much, but a lot can change in two weeks and even more in four. I can’t help but feel a little bit excited.

As always, only time will tell.

L

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You’ll be pleased to know that I am pretty much caught up with my hospital adventures and so can focus on other blogging needs that have been neglected of late. The first of these is to trawl through all the Still’s Disease articles I’ve been sent since my stay, in order to update the Articles Section, as I know these are popular with many readers. I’ll start with February; happy reading:

New Hope For Children Suffering Rare Illness – Health Canada approves Actemra / Tocilizumab for the treatment of Systemic Juvenile Idiopathic Arthritis.

Jab That Ends The Agony of Rare Childhood Arthritis – New NHS treatment brings relief to nine out of ten young patients (Daily Mail).

New Drug to Treat Childhood Arthritis Approved – Four-year-old Evie Harnes was treated with Tocilizumab, which has allowed her to return to normal life (Includes video). You can also read about Evie’s new lease of life in this article.

NHS Given Go Ahead to Prescribe New Drug to Ease Pain of Rare Rheumatoid Arthritis – Another Tocilizumab Article From the Daily Mail.

NICE Recommends Earlier Use of RoActemra –  It is vital that patients have effective options available as soon as one treatment approach fails.

Better Care For Systemic Idiopathic Juvenile Arthritis – Standardizing Care Could Help Patients and Future Research.

Actemra (Tocilizumab) Shows Superiority Over Adalimumab – A similar article can be found here also.

Anakinra (Kineret) Turns Young Sportsman’s Life Around After Rare Arthritis Hits – Baseball star was told he’d never play sports again after being diagnosed with Still’s Disease.

Riding Along With Ellen Price – A Cyclist With Adult Onset Still’s Disease (AOSD) Shares Her Story.

These will all be added to the Articles Section too, to be accessed easily in the future. Tocilizumab / Actemra is featured heavily in Still’s news right now, so it is nice to see Kineret / Anakinra get a mention too. Especially as this drug is currently in the lead in our Top Biologic Treatment Poll right now!

I also wanted to post this video; it isn’t recent but it was posted on the Still’s Disease Cure Facebook Page the other day and I thought it would be interesting for those who haven’t seen it before. It isn’t often that Still’s Disease appears in the media! It is an interview with Jill Zarin, who stars in The Real Desperate Housewives of New York County, and whose son Jonathan suffers from Still’s Disease.

L

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I mentioned the other day that I was having a bit of a rotten day, having woken up with an extremely sore mouth, ulcers and a raised rash-type thing on my tongue. This also seemed to be making me feel weak and shaky, my pulse was racing (as it does when fighting off infection) and I was absolutely exhausted, so I spent the day snoozing on the sofa and had an early night. I figured I’d give it chance to disappear on its own, as fast it came, like so many of these things do. Sure enough I woke up feeling much better yesterday; the mouth/tongue rash was still there but seemed to be healing and so I left calling the GP.

Today it has gone worse again though and on top of that, I was woken in the middle of the night by terrible pains in both of my legs – sharp, stabbing pain from hip to toes, like being caught in a vice in places and coming in waves. It was very similar to the pain I describe here, in a post I made just over a week after starting Abatacept / Orencia infusions in July. At the time I put it down to starting Methotrexate, but now I’m wondering if it was the infusion itself that causeed such agonizing bone pain; it seems too much of a coincidence to get it a second time round and when I’m no longer taking Methotrexate.

Anyway, I managed to get some sleep on and off but the pain was constant until late morning, when it gradually started to ease off. I can still feel it underlying, but not enough for it to bother me. I just hope it doesn’t rear it’s ugly head in the night again! And I really hope that there is nothing going on that might prevent me from being able to continue with the Infliximab infusions. I will be ringing first thing on Monday to let both of my doctors know,  just to be safe.

For now, I’m taking it a little bit easier with the physiotherapy and spending some quality time with my Kindle and new chenille blanket.

Hope everyone is enjoying the weekend, oh and Happy St Patrick’s Day!

L

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