Posts Tagged ‘Painkillers’

After two weeks in hospital, and one of my scariest flare ups, I finally came home today. It was a slightly confusing turn of events, as on Thursday they were talking about me going to a mobility rehabilitation centre for a time and then suddenly the arrangements were being made for me to go home, even though everyone seemed to have different ideas about whether I was ready for this. After a lot of discussion, I made the decision that I would rather be at home to continue my recovery as I didn’t really see what more could be done for me as an inpatient, now my pain was controlled and I’d had all the relevent procedures. I’m lucky to have good support and facilities at home, plus they have arranged for me to have home physio and an assessment by the Occupational therapists to see if there is anything more I would benefit from.

My elbow had been the main factor holding me back once my hips were sorted, as it became swollen, restricted and very painful – especially when needing to bear weight through it to use the walker/crutches. My Rheumy came to examine it and found more inflammation and fluid around the joint, so I had this injected with cortisone too, which should settle it down and give me more movement and use of that left arm. I tried the stairs with crutches for the first time and although it was hard going, I think I can manage doing it once a day until I’m strong enough to try more. One important factor that has been reinstilled with me during my hospital stay is just how important it is to keep moving, even through pain and inflammation, and this is something I will be posting about once I catch up on everything.

The past two weeks have been a real eye opener for me in many different ways, so I have lots to post about. The wordpress format seems to have changed while I was away, but I’m hoping that once I figure it out I will be able to backdate posts relating to my stay, while updating with current issues as before. The reason I feel the need to backdate is that this blog also forms a record of my disease activity, which is useful for myself (and hopefully others) to look back on. I was making notes on paper during my stay, so hopefully will be able to keep it accurate.

It feels really good to be home and I’m confident that it will speed up my recovery; little things like needing to use steps to visit my little furbaby Jasper will encourage me to do so daily and even trips to the toilet provide more exercise than having a toilet in my room. I just have to remember to go as soon as I need to as it takes me about 15 minutes to get there with my walker and I’ve had a few close calls already!

Finally, thank you to everybody who visited, sent cards and messages of support to me while I was away. It makes all the difference in the world to dealing with all this and I count myself very lucky to have you all.

Take care all,


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Note: this marks the start of my backdated posts, covering the period that I was hospitalised.

I’d last been posting about the gastric issues I was experiencing. Things went rapidly downhill on the Saturday and I was having constant, excruciating pain in my stomach and chest, alongside vomiting after only sips of water; I also experienced some rectal bleeding and started to grow more and more concerned. This continued all through the night, until we could get hold of the out of hours doctor, who told me to get to our local hospital straight away.

The doctor there examined my stomach, which was extremely tender to touch, and admitted me to the Emergency Assessment Unit straight away. The main concern was obviously the possibility of a bleeding ulcer (I suffered something similar ten years ago), but I was also seriously dehydrated and had been unable to keep any of my medication down for over 48 hours. I was examined again a short while later and had the necessary blood tests, xrays, scans, etc as well as a rather interesting examination by a doctor that looked about twelve, (Dr Liam) which (to put it nicely) found no evidence of haemorrhoids and meant the bleeding was even more of a worry.

Other possible diagnoses at this point were Gastritis, Pancreatits and Duodenal Ulcer.  Treatment-wise, I was given Morphine, Methylpred, Fluids, Anti-Emmetics and Stomach Protectors through an IV, while the rest of my medications were put on hold. They felt that these were to blame for the problems, but covered their abscence with extra IV steroids. I did a silly thing at one point and managed to pull the cannula out of my ‘one good vein’, meaning that they had to insert a new one with a fancy probe that finds deeper veins – it worked and I’m glad to have learned that it is an option!

With the pain under control, I was much more settled and so they moved me onto a side ward with five other women, who became good friends over the next few days.  I did have some reservations though, since this was the same ward that I’d had such a bad experience on in August; but the Matron recognised me and promised I would get the right care this time round. For the most part she was right and I had a much better experience at this ‘dreaded hospital’, until I changed wards.

So, I was nil by mouth and had a few investigations lined up once the weekend was over, but I was comfortable for the first time in weeks and even managed to get some sleep.

I had no idea of how things would turn out.


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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.


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The past couple of days have been quite bad Still’s-wise; today is slightly better but I think that’s down to me switching back to my regular Tramadol rather than the Prolonged Release form I had been trying out.  That didn’t seem to keep the pain away enough at all.

Since waking up on Wednesday, there has been a lot of joint involvement – my left arm joints suddenly felt a lot worse, with the elbow even more restricted than usual, both knees felt painful, tight and stiff as if there was fluid in the joint (there may be, just not as severe as when I was a teenager and they swelled up like footballs), plus my right hip is extremely wince-worthy painful, meaning I can’t lift that leg on its own and have to take stairs etc. one step at a time.

It really isn’t looking promising for the Orencia / Methotrexate combination. I’ve now had two doses of the 15mg Mtx and that is the only thing to have changed – funny then, that I feel worse. Still extremely tired and so I’m giving myself rests in the afternoon and going to bed earlier again; I figured that my body was working over time to heal this open wound after all, so I will listen to it.  Hopefully, after my infusion and Rheumy visit on Thursday (expecting to need some joint injections), I’ll have much more energy for New York. Besides, I’m so excited that I’m sure I will run on adrenaline alone.

I’m no longer too concerned about my wound and travelling.  The nurse was very pleased with the progress it had made and reduced my clinic appointments to twice a week. The rest of the time I am to change the dressings myself and she has given me everything I need to do so. I’m getting used to it now and can even remove and replace the packing myself, it’s not too bad now I know what I’m facing. Plus the wound itself has improved so much that it is no longer the bottomless pit that it seemed at first; it’s amazing how the body works to heal itself.

I’m surprised that it hasn’t ever really been painful – of all the things that are going on with me at the moment, that is the least of my pains.  The Hidradenitis itself is more painful, especially this second site in my left groin. It is nothing to look at really, just two pin-prick sized holes where it has channelled to the surface, but I nearly jumped through the roof when they swabbed it the other day, whereas I haven’t flinched at all with them poking and prodding the open wound.  Obviously I’d love for it to clear up itself, but at the moment I’m okay with the possibility of needing the surgery again, but I would like to get an idea of the scarring first.

Anyway, that’s everything for now. There isn’t much I can do until I see my Rheumy really, except maybe ask the GP about some different painkillers again.  Looks like I’m back to waiting around for things to improve; it just can’t happen fast enough.


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Just a mini post.

I’ve had a couple of good days this week; not sure what I owe them to but hey, I’m not complaining.  Today I went on a bus into town for the first time in… well a long time!  I went with my boyfriend’s grandma and she moves at my pace so that was reassuring.  We had a wander round the little shops and then stopped for some lunch and a warm drink before heading back, but I was out of the house for about three hours and it felt good!

I’m tired now, but worth it tired.  Although, I think I did have a mix up with my painkillers – we were out when I was due a dose and I missed it and couldn’t remember whether I took it when I got back (brain fog), so just taking my next one before bed.  This means I could have missed a dose, or maybe two…oops. I’ll have to try and take one during the night because the other day when I missed a dose it took it’s toll the next day.

I’ve now got my pyjamas on, my feet up, with a lovely cup of Horlicks, watching a cute kids’ film called Marmaduke (a must see for any dog lover!), then it’s an early night for me.

All in all a good day; maybe things are on the up 🙂


Ps. I’m also blaming Mtx ‘Brain Fog’ for the fact that I poured water from the kettle over my cereal this morning, instead of into my teacup… :\

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This time last week I was preparing to make my great escape from the hospital.  Thankfully, I haven’t been any worse since discharging myself, or for not actually receiving the Blood Transfusion I went in for; in fact, if anything, I’ve been on the better side.

I know this is because of two main things:

  1. I increased my Prednisolone back to 20mg after the hospital stay, so terrified was I of needing to go back! I should mention that my Rheumy gives me permission to do this. After many years dealing with Still’s I have learnt to judge when I need to increase my steroids and always tend to try and keep it as low as possible, due to my love/hate relationship with the stuff.  I am very careful with my tapering too.
  2. The GP made me agree to take my full dose of Tramadol for pain relief, which has taken the worst of the pain away at least.  I’ve also been taking the Naproxen he prescribed as a longshot.

These weren’t easy decisions for me to make.  I really don’t like dosing myself up every day and so have been keeping it all to a minimum for too long, which hasn’t done me any favours.  I realise this now; I was being stubborn and I wouldn’t advise it.  I needed this relief and, hopefully, it will only be short term while we get the Still’s under control again.

The Prednisolone must be doing its thing because I am managing to get out of bed on my own in the morning and am getting about okay; the chest pain and breathlessness has eased too.  My joints still aren’t happy though, with the odd grumble from my hips, stiffening of both knees and then of course, my left elbow and shoulder joints, which are terribly hot, stiff and swollen and seem to be unphased by any treatment – even the cortisone shots I had a while back.  It’s all bearable though.

On an even more positive note, we had a couple of friends round last night to discuss our trip to New York next month. Five of us are going to celebrate a 30th Birthday, but one friend lives in Spain so she couldn’t make it round obviously!  We spent the time talking about what we want to see while we’re there and, although I know it may not be easy physically, I am extremely excited about it all.  I don’t care if I have to pump myself up with Prednisolone and painkillers, I don’t want to miss a thing!

Hopefully, I’ll be feeling some definite improvement from the Orencia and Methotrexate by then anyway. I am now on week 6 of Orencia plus will be taking my 5th dose of Mtx tomorrow evening and I was told it usually takes 8-12 weeks for the two to be fully effective together.  Until then, I’ll just carry on being a good girl and take what I need to give me a better quality of life… I promise doc!


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Our friends’ campsite wedding and barbeque reception went really well yesterday. It was a fun idea and I was able to pace myself thankfully, although I have to admit that I spent the majority of the evening in a camping chair by the fire, wrapped up in a blanket that I sneaked out of the hotel – of course, I returned it later!  0:)

We had originally meant to stay on the campsite in a ‘pod’ (basically a wooden tent), but were double booked and so changed to a nearby hotel instead.  I think this was probably fate.  I was sooo glad to be able to go back to a nice warm bed and a cup of tea afterwards, especially as it was raining quite hard as well as being freezing cold.  Don’t think my poor bones would have appreciated waking up on a wooden floor this morning either; in fact, it doesn’t bear thinking about!

The full does of Tramadol helped the first day I took it, but for some reason it now doesn’t feel any different to taking half as I was before.  It takes the edge of some joint pain but my left arm is still extremely painful, especially during the night. I’ll keep up with it until I see my GP again though.

I’m absolutely shattered, so I shall leave it short and sweet.

Hope everyone had a good weekend,


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I didn’t want to waffle on too much about myself again, but since we made some progress at the GPs yesterday I thought I should give an update.  The GP wasn’t surprised about the way I’d been treated at the local hospital and even admitted that he had seen some horrendous treatment there himself. He fully supported my decision to discharge myself and said we needed a plan that would help me to feel better without going back. 

First off, he would arrange for an outpatient CT Scan just to make sure I have no blood clot, although he agreed with me that my symptoms were more flare related.  As for the anaemia, he feels certain that it is Anaemia of Chronic Disease and that we can afford just to keep an eye on it for now. If my haemoglobin does drop any lower than it’s current 8.0, I am to mention to it to my rheumatologist and get the transfusion with him.

Finally, since the main thing that is bothering me right now is pain, we discussed my painkillers.  I currently take Tramadol and have refused anything stronger in the past because I worry about masking my symptoms too much and also about becoming reliant on/resistant to pain medication.  I don’t even take the full dose that I am allowed, even with the amount of pain I’ve got at the moment.  Anyway, my GP made me agree to take the full dose every day this week to see if it did take the edge off and, if not, said he would prescribe something stronger when I see him in a week’s time.  He also prescribed Naproxen, which is something I took way back in the early days of my diagnoses and never bothered with since; but I’m willing to give anything a go right now, even if just for a little more relief and mobility.

So there we are, it felt like progress to me and I at least have an appointment with him again next week (without having to phone days in a row).  It should be enough to tide me over until my next infusion on the 25th August, when I will see my rheumy again – he’s currently on holiday.  I’ve put my Prednisolone up again, which takes me back to the worries I had previously, but I need relief.

My next ‘worry’ is that we are going to Oxford for the weekend later today, as our friends are getting married tomorrow.  It seems crazy in a way to even contemplate it, but I guess it’s just one of those things you have to try and get through as best you can; plus, I’m really looking forward to it! I’ve never been to Oxford before, so that in itself will be nice. The Ceremony is quite early in the morning and then they are having a campsite barbeque reception – which will be a new experience too! Hopefully, I’ll be able to fit in some rests back at the hotel and will just have to pace myself the rest of the time, but at least I know I will be looked after.

Of course I wish I didn’t have all this to worry about, but you have to make the most of what you’ve got and, besides, I hate having to put my life on hold.  So, here’s to the happy couple – and to enjoying our lives despite this horrible illness, just doing so at our own pace.


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