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Posts Tagged ‘Joint Swelling’

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

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

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

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

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

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

L

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I thought that I’d concentrate on an realtime update, while backdating is taking so much longer than I expected. Things have reached a sort of equilibrium on a daily basis, between struggling with pain, mobility and capability in the mornings and managing things better in the afternoons. Someone from Social Services phoned on Friday to say that I was on top of the list for a home assessment that will decide whether I need a Care Package for a short time at home.  Personally, I feel that I only need some help in the mornings as I am too sore to do anything before my boyfriend leaves for work. We have our routine that works for a lot of things, but nothing in place to help me shower or dress. Dressing I can leave until the pain and stiffness eases enough to allow me to try, although this was late afternoon on some days last week.

Showering is probably the biggest problem. We have tried it once and am in no hurry to try again; there were too many problems and tears and it was simply not safe. As helpful as my boyfriend is, he isn’t trained to shower someone who can’t stand without support and such restriction raises more issues than you would imagine. Getting into the shower, over that little step, when you depend on a frame is hard enough itself; but, once you are in, there is nothing but wet walls for support and no way to move when you can’t bear you weight through something. I was terrified of slipping and falling. So, for now I am having thorough sponge washes twice a day and hope that someone will come to our aid with something to enable me to shower.

In the meantime, they did send me round a toilet frame that same afternoon, which has made ahugedifference to me. It was so difficult and taking such a long time to negotiate the toilet, that I was worried I might have an accident at some point. Worry no more! 🙂

On a more positive note, it was Valentine’s Day recently and we had booked a weekend hotel break as we do every year. We were actually going to cancel it, thinking I was just too poorly to manage, but because it was already paid for the hotel wouldn’t allow us and so we made the decision to give it a try. Fortunately, we had only booked somewhere very close by and purely for the hotel facilities rather than any plans to sightsee, so we figured that I may as well struggle there (in luxury) as at home. I think a few people close to me thought I was slightly mad and pushing myself too much too soon, but we all have to make our own decisions and live with them.

We got in touch with the hotel to explain the situation and they were very accommodating, upgrading us to a Disabled Access room that was on the ground floor and very close to the restaurant, bar and spa. I was able to use my zimmer in the bedroom and only had a short distance to manage on crutches, to get to meals. Once that initial morning struggle to get me dressed was out of the way, we would sit at breakfast for at least a couple of hours just taking things very slowly and waiting for my pain relief to kick in. Then eventually we would move across to the bar/lounge area and set up in a cosy corner there for the afternoon.  I was happy reading and making some notes for projects I have in mind, while my boyfriend made use of the free Wifi we had been offered to make our stay more enjoyable. Add to that being waited on with lovely food, cakes, tea and hot chocolate… you can probably see why I didn’t want to come home!

So, over all we had a wonderful weekend and I’m so glad that we took the chance, instead of playing it safe. Just to have a change of scenery, to have a reason to wear nice clothes and do my makeup, has given my spirits such a boost that I feel more able to deal with the issues that the Still’s Disease keeps throwing at me; and they do keep coming. Only yesterday, while away, I was presented with a new problem – both of my knees have swollen up, meaning it is now extremely difficult to stand from sitting as I can barely bend from my hips or my knees. My thoughts are that the Tocilizumab infusions aren’t working but we have to persevere a while longer as there are so few options left treatment-wise; we don’t want to write them off too soon.

Roll on March 2nd though.

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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After missing my Rheumatologist at my infusion on Thursday, it was nice to find an email from him in my inbox this afternoon. He said that my recent test results were much better than they’ve been for a while now, which would be great news if only it reflected how I feel! The fact is, my joints have been feeling pretty terrible – with the ‘usual’ left shoulder and elbow pain / restricted movement, swollen right knee, sore neck and awful pain in my hips that makes me queasy.

So I don’t understand how my blood test results are improving!

Is my body just a bit slow on the uptake?

Hopefully, it is a good sign though, especially with the brief improvement I had after the first infusion. My theory is that once it builds up in my system a bit more this improvement will be more noticeable and long lasting. The drug is obviously having some effect on my body if my blood is showing changes that it hasn’t done before?! Many people with Still’s Disease receive Tocilizumab once a fortnight rather than four-weekly, so perhaps this is an option to consider too.

He also said he’d be happy to see me in clinic if I felt I needed my knee injecting… but now I’m even more tempted to struggle on a bit longer, in case I see some improvement with the Tocilizumab. Otherwise, I might get a false impression of what’s going on joints-wise. Of course, if things get too bad, I’ll be straight on the phone to him because I don’t want to do more harm than good.

L

Edited to add: I’m sure I have a bit more movement in my knee again, I seemed to be managing steps much easier this evening. Fingers crossed!

 

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Just a quick post to create another poll on something I’m yet to get to the bottom of after all these years: What is the best form of relief for a swollen, painful joint? You would think, that since most swollen joints are also hot thanks to the underlying inflammation, a cold compress or icepack would settle things down. But, at the same time, joint pain can often increase in cold weather, so heat seems like a reasonable option too.

Personally, I think that cold may help with the swelling if I gave it chance, but I really can’t bear cold on my joints as it increases my pain. At the same time, heat is quite soothing on the joints and can ease or at least disguise the pain, but it does nothing to take down the swelling.

So which of these options is best for you?

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