Tag Archives: Arthritis

The end of the Tramadol tale – I hope!

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I have had no Tramadol for 9 days. Last time I was splitting one capsule into two and taking one half in the afternoon and one half at night. It wasn’t pleasant but I knew by now what the alternative was, and I couldn’t face it again just then. I knew I had to get through a working week. On Friday 6th I took 1/2 capsule before seeing an afternoon client. However, at bedtime I decided it was all or nothing now. I had a weekend with my husband around, so if I was ill then so be it. I couldn’t reduce the individual doses any more. 

Typically I didn’t sleep well on the Friday night, but it seems that was something I know just have to get used to anyway. Saturday and Sunday I spent under blankets on the sofa, chilled and shivering but sweating – I wish I’d remembered heat packs before now because regular top ups of heat into my back made a big difference to my comfort. I ached everywhere. I can honestly say the pain of withdrawal was worse than the pain I was taking the Tramadol for in the first place. I was more used to that pain and it was more predictable and less wearing than the aches. However, I have since discovered aches and pains the Tramadol was masking, even if it was apparently doing nothing for the sharp pain in my lower back and left hip that is stopping me walking far. I had diarrhoea again, very bloated and gassy, nausea and acidic.

Gradually over the week I have felt better. I have found I am exhausted by 4:00pm, but this may have absolutely nothing to do with it. I am not sleeping well because, other than Natrasleep with valerian, I have nothing to make me sleep now and I am sore and hurting, so can’t get comfortable. I’m getting roughly a 1 hour cycle (should be 90 minutes) of dozing between waking and needing to move. I can relax – that is well practised – but unfortunately as soon as I do I start to hurt in my upper back and muscles start to become agitated. The feeling of agitation generally has been frustrating and I spent a good part of Wednesday in tears. 

Things have picked up since though and I think we’re there now. I no longer take Tramadol. I can go and see a new doctor on Tuesday and say I only take Ibuprofen and Paracetamol and this is where I am with pain and movement – not something hidden by Tramadol. I have been swimming as usual and keeping up my yoga and Pilates with my physio exercises. I am personally shocked at how weak I have become over the past 18 months. My muscles and tendons, despite regular exercise, are tight and guarding and exercise stretches that used to be easy for me are now worryingly difficult. However, you get nothing without trying and I’ll carry on. It has occurred to me though that, while surgeons say it is ok to have so many joints replaced so close together, the reality is that you feel as though you have been in a car crash. And in many ways, you might as well have been!

I am still having problems sleeping, but I am waking in the morning feeling brighter than I did regardless of that. My joints and muscles are getting stronger again – I can lift my left leg against gravity 10 x 3 times (with just some pain and effort!) – a few weeks ago I couldn’t do it at all. I am in pain, but I am looking for a different way of managing it. I will not be going back onto Tramadol.

Onwards and Upwards 🙂

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Tramadol – the ongoing saga

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When I wrote a couple of days ago, I received some really helpful advice from a person who read the post. It seems from this, and other things I’ve picked up online, that coming off Tramadol is neither straightforward nor easy. 

Certainly it is unpleasant. Yesterday I chickened out. I set myself 3 days for each decrease and it was going to be by a whole capsule. I did feel much better yesterday I must say. I was quite chipper all day until about 4:30 – 7 hours after my previous dose. I’d slept quite well with only one episode of discomfort and agitation – although admittedly it was about 2 hours that I was awake trying to get back to sleep. Again, it was roughly the time my body had metabolised the drug and was asking for more. By 7:30pm I was very pleased to be able to take another and could’t face going all evening and night without.

The person who responded to my last post suggested halving and then quartering the dose. Good advice! Unfortunately not so easy with capsules. I did consider asking the GP for tablets, but decided against it – hoping I’d be off these before the script was even signed and ready. I had a reasonable night last night and this morning also felt ok and not so desperate for Tramadol. I am in quite a lot of pain, but possibly no more than usual. I came down to breakfast – usually I have to take the Tramadol 1/2 hour before getting up just to get out of bed. It was hard work but fine. I felt sufficiently ok to cut the caps in half and give a half dose a go. The rest of the powder is sitting in a spoon for later (possibly for taking with a bit of jam!!) – hopefully this evening and not this afternoon. 

I have got through the morning, and I had client work. It kept me occupied although I confess to being a bit distracted. It feels as though all my nerves are back on the outside of my body and I’m freezing cold and shivery. I also notice, as I did previously, that when I need (!!) a dose of Tramadol my temperature seems to go up and I feel flu like symptoms. However, balanced with the constant tiredness of living on Tramadol, perhaps that’s not so bad, and I know now what to expect and that it will eventually go away. 

So – 2 1/2 doses today, tomorrow and Sunday – maybe Monday too – and then we’ll try reducing again.

The best thing the person who wrote to me said though was a very helpful reminder. The difference between addiction and physical dependency is the addition of psychology. Remembering this is a physical dependency over which I have control makes a lot of difference.

Tramadol Withdrawal

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It’s been some time since I wrote. The new joints are brilliant and I’m so pleased I had them done. The only thing I think is that I hoped I would be able to kneel again, but while the bend is good, I cannot get my left knee sufficiently bent to do that. I’ll keep trying – and I’ll keep working on the sitting crossed legged too 🙂

I had felt my left hip wasn’t improved as much as I’d like, but discovered later it was not pain from my hip but from my spine. It would seem I’m bent in two different directions – scoliosis and retrolisthesis, have osteoarthritis on a variety of discs (well I am getting on a bit) and that I have some vertebral displacement as a result which may be irritating the nerve sheath (otherwise known as slipped discs and trapped nerves – which are not really trapped at all). It has caused some issues with mobility and pain. I’ve seen a specialist doctor but surgery is not the way forward (thank goodness!) and also a physiotherapist. He has referred me on to a more specialist pain physio and he has referred on a gain to a Dr Brown. Turns out he is the same Dr. Brown who wrote a book that I happen to have as he is also a Human Givens Therapist, in addition to his many other skills. I look forward to meeting him in a couple of weeks.

Since I had the surgery, and ongoing as a result of all this, I have been taking Tramadol. It seemed, especially as I am sensitive to Codeine, that Tramadol was the wonder drug. What I now feel it is, is nasty and insidious. I was at one time taking up to 7 a day and got that settled around 4 (sometimes 5). Occasionally I would try to drop it to 3 and feel so unwell and everything so painful that I’d take it back up to the 4. A couple of weeks ago talking to my physio, we got to the point of things being difficult for me because of the pain – hence the referral on. What I went home thinking though was – I’m taking a strong analgesic, a morphine replacement and controlled drug – why can I still not do things because of the pain? Perhaps actually it is not doing anything for the pain at all. On seeing the specialist physio, it suddenly dawned on me when telling him about what Tramadol was like and what it was like when I didn’t have enough – I wasn’t talking about my arthritis, I was talking about drug withdrawal symptoms. That was when I decided I really didn’t want this in my system any longer. Being addicted to pain killers for the rest of my life is not appealing.

The next day – Friday – I dropped to 3 and stuck to it. It wasn’t nice. The Saturday was worse. I felt as though I had flu. My bones and muscles ached and I felt exhausted. However at the weekend I had my family around to distract me. Worse was to come. Sunday I felt shivery and cold. My abdomen was bloated and tender. That night I lay awake agitated for a couple of hours – as though I had drunk too much alcohol and it had metabolised. I felt very nauseous. I was sweating and my skin and pjs were damp, but I was freezing cold.

On Monday I had a stomach upset. Numerous trips to the loo. I was now sweating during the day too – baking hot one minute and freezing cold the next. Icy fingers ran over my skin. I didn’t want to eat – I felt too sick, but made myself have carbohydrates and salt and fruit, and a LOT of water. I wasn’t sure how I would manage, but I’d done a lot of reading online about withdrawing from Tramadol. The symptoms were all typical but the post I most noticed was the one that said the longer I was still on Tramadol the longer the withdrawal symptoms would last. Obviously stopping altogether was not a good plan. Thank goodness my body was only used to 4 a day and not still used to 7 – 8! I decided I was going to try to only have 2 – the one I’d taken in the morning to get me out of bed, and 1 at night. I couldn’t have coped until bedtime. At 6pm I had to take it or supper would not have been made, but I didn’t take another at bedtime. I slept on a 1hour 20 minute cycle through the night waking from vivid dreams in REM sleep each time and agitated. I had to go to the toilet. I was wet with sweat and shivering with cold, but I got through until morning. At 7:30 am I took my next tablet.

Tuesday was not quite so bad. I phoned my GP surgery and explained to the doctor what I was doing. He was quite happy with my decision and my gradual reduction approach. I didn’t feel so sick, but had a lot of pain. What I felt was interesting though was the pain for which I was taking the Tramadol – in my back and hip – was no different to what it had been before. Certainly no worse. Was it actually making any difference to me in the first place? Admittedly I was taking full dosages of Ibuprofen and Paracetamol, but then I’d been taking those all along too. It may have been masked by the withdrawal symptoms, but I’m suspecting not. The pain – the nagging ache in my hands and shoulders and back was bad. I had a splitting headache and the icy fingers started again about 5 hours after my tablet. I’d had a reasonable morning – my body had had its fix! – but by 2:30 I couldn’t function and found the only thing that came close to relieving it all was curling up and staying warm under a blanket. I made myself get through until after supper when came the decision. Better evening or better night. I opted for better evening and took Tramadol 12 hours after the previous one.

I slept better. There was another period of sleeplessness and I woke regularly but it didn’t feel as bad as the previous 2 nights. I woke fully at 6:45 am and counted the minutes until I could have my next tablet at 7:30. I gave in at 7:20 when I didn’t feel I could stand it any longer. The nausea has gone. The stomach issue has settled. It is now 6 hours since my last Tramadol. Only 6 hours to go!! – and it’s just going to get worse from here.

I’m undecided. Do I stay on 2 a day until everything settles down and then reduce to 1, or do I go down to 1 tomorrow for 3 days, following my pattern so far. I’m not sure. It depends how long I can put up with this and my resolve holds. My husband says I am doing well and being quite phlegmatic about this. I think that’s because it’s my choice. I have the power and the control. I can take the drug if I want to – but equally I can choose not to. My body is trying to dictate because it is the easy option and it has become lazy – not producing it’s own innate pain relief. It needs to re learn!

I’ll post again in a few days. We’ll see how I get on and how things change. I suspect going down to 1 and then none might mean continually going backwards for a few days, but we’ll see. Just have to try to find plenty of distractions and relieve the pain as much as possible. Then I can see whether it was ever really helping me and start afresh with a new coping strategy for pain relief.

The Bends

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My knee replacement was 5 weeks ago today and I haven’t been nearly as good at posting about it as I was with my hip replacements. Some of this is because I have been very busy with work, but much of it feels as though it has all been said before. Having said that, I have looked back at 5 weeks post op on both my other ops and I am much further forward in many ways.

There are some things that I keep meaning to mention – more for my own memory later. My scar is about 8 inches long vertically down my left leg over my knee. It is really quite neat considering the 34 clips that came out of it 3 weeks ago. That stung! It is incredibly sensitive and feels as though all nerve endings are there. I am living in cut down jeans as I can’t bear a skirt or trousers touching it and lying in bed at night is hard trying to keep the sheet from touching it, but also keeping warm. The physio suggested massaging with cream to habituate it, but while firm pressure is not too bad, the light touch of fabric, a stroke, even a breeze, is very painful – not just in my knee but through my leg and right back into my spine.

It is also not my only scar. I noticed post op that I had a blister or two beside it and I think I may have been burned by a laser knife – those scars are still there. In addition one of the pads on my chest where the ECG machine was attached burned and blistered. I have an oval of burn scars that are now pink on my skin and look as though I’ve been bitten! No marks at all from the other ECG pads. Very strange!

My knee does hurt – it is much worse I think than the hips, although noticing how far I have come in comparison to those ops it may be that I am both doing and expecting too much. I am taking 6 Tramadol in 24 hours to combat the pain in my knee and my spine, which is much worse again. On the other hand, I am doing everything for myself. While I have’t been walking because my knee still swells quickly and painfully, I was told last week I could go swimming and have been 4 times since. It is wonderful! The exercises are much easier, though still sore, in the water but my back barely hurts at all. I hate having to get out.

I moved from a crutch last week to just my stick a couple of days ago and also have driven the automatic car a couple of times for short distances (down to town and the doctors). It is sore, but my back is probably worse. Otherwise it is the constant sticking prickle from the scar that bothers me.

The bends though – I’m very happy. I haven’t done my exercises quite as recommended by physio., but they are happy. I exercise more in line with a yoga technique of bend then relax into it and push just a little bit more. Last week at physio I had again a 0 extension and a 95degree bend. This week I’m aiming for 110 degrees and I think with the help of the swimming I will get there and also he will be happy with the strength that is building up. It is sore but much less so that previously and the stiffness through the day gets better. It is really only morning and later at night when I am tired that are worst.

Although night time can be a bit rough. I can no longer lie on either side again for long – my spine pain rather than anything else, but neither can I stay on  y back for long. There is no consistent way to relieve the pain or sleep so it all depends very much on the day. We are getting 2 reasonable nights (though this is still waking every hour) out of 3 – but 2 nights ago we gave up and got up at 5am.

I have seen a spinal specialist now, although I’m still waiting to hear about a weight bearing x ray. I see him again end of October – assuming I’ve had that x ray! I would really like to see him before given how much worse it is becoming, but I’m not sure that is going to work out. 

We go on holiday in 10 days now – to nice flat accessible Devon!! Great choice when I – and my mother – can’t walk. I suspect I am going to have to move my mind set from the young adventurer to the old cream tea mentality from now on.

Pottering On

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Having written about unexpected loss a couple of days ago, I’d quite like my life back, and I am now a step closer to that on the mobility front anyway. The knee is extraordinarily painful. It is swollen to half the size of the other leg again from thigh to foot and bruised all over in purples and yellows – Cadbury purple and Coleman’s mustard yellow! From last year’s experience of the hips that will gradually change to Kermit green 😀 I was told a knee was more painful than hip replacements and it is true for the exercises certainly. Very much a cruel to be kind few minutes every hour where I work on pushing my new metal kneecap as far back as possible ( if I’d done this with my old arthritic knee it would have locked!) and try lifting my leg from my knee, which I have finally been able to do since yesterday, and also push and push painfully a centimetre at a time to get a 90 degree bend each time. I’m taking a massive amount of pain relief, even more than pre op, so I just want to sleep all the time |-) On the positive side though, I don’t know if it is because I have already been through this with the 2 hip replacements so recently, or whether I am just used to compensating for a rubbish knee, my ability to move around and manage things is much better than with the hips. There I had so many restrictions on movement because they could dislocate. This time the aim is to sit with my feet up with ice packs to get the swelling down so I am able to get the knee through the hourly exercise regime. It’ s a tough life lying here watching others work 😉 

Work wise I haven’t done a thing. I did feel guilty when I got home but have to try to remember I had major surgery less than a week ago. The major thing I learned last year, going back to work at 6 days post op each time, is online – just because you can, doesn’t mean you should. I’m planning to get back into things gently from tomorrow.

I’m getting into a routine with my husband home just now to help me – I certainly would be struggling to manage alone while still on 2 crutches. We get up and I do some exercises for my knee while he and my sone make breakfast. We go and rest it up with ice packs until coffee time when he leaves it to brew while he helps me in and out of the shower. My mother in law sent down the plastic covering she used for showering when she broke her leg, but actually it stops me washing the rest of my leg and it is only the dressing I need to keep dry, so cling film works just as well with a quick shower. I managed to wash my hair yesterday too.

I’m so exhausted by 6:00pm though I can hardly eat or keep my eyes open. I realised this afternoon I’m going to have to have an afternoon nap and, while I didn’t want to get up from it yesterday, I did feel a lot better and managed to stay awake long enough to watch a film with my husband before bed. I also find that the relaxation eases my back, which in turn eases my knee.

My dressing is yucky, but the hospital prefer you not to change it. It is not oozing anything like it was, but from the outside it looks a pretty disgusting colour. I also think it is contributing to me not being able to bend my knee as much as I need to.

However, the weather is lovely and I’ve been able to spend time outside this weekend lying on a lounger with my book – though mostly in the shade because it is so hot in the sun. I think the increasing tan on my legs may also be a bit of a giveaway that I haven’t been wearing my stockings when I go for my post op check! Summer

 

Unexpected Loss

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I no longer have severe arthritis in my new metal joints! Having got used to something it has gone. 30 years of increasingly having my knee as an issue, in an hour and a half – and after a few months of recovery – it is a new knee. What a very strange feeling.

I wrote recently about the feeling of loss when you find you have a chronic condition – the life that you thought you would have is suddenly taken away. The future looks bleaker and you think of all the things you wish you had done while you still had the chance.

For years I have struggled, or groaned, or cut trips short and my husband and family have said ‘is your knee a problem?’. We decided we couldn’t go to Italy because we didn’t know if I could walk to visit anywhere.

… and it’s gone. I no longer have severe arthritis in either of my hips or my left knee. Ok – I still have arthritis – in my right knee, my spine, my shoulders and elbows, my feet and hands – but the bony spurs in my knee and hips have been cleaned out, the space where once just a short time ago bone was rubbing on bone is now filled with metal and new fluid. 

Admittedly it’s a bit tricky to consider just now while I am still sore and struggling with mobility post op. I have to say though, for all those people who say that having a knee done is worse than a hip, I’m not entirely sure I agree – it is just different and there are different pros and cons to each. Initially it was much more painful than my second hip, but probably not my first – I remember crying with pain then too in exactly the same time frame. While with my hips I had lots of restrictions to prevent me dislocating, I can’t dislocate this so mobility is considerably easier. It may be because I am used to compensating for my rubbish knee but I can bend and twist and reach for things, making managing afterwards much better. 

I’m afraid the stockings are off. It is so warm and they are full length and incredibly uncomfortable. I do feel incredibly guilty. I am exercises and wiggling my ankles like mad. It’s unlikely I would get a DVT. I’m taking my anti coagulants and I only have to take them for 2 weeks as opposed to the 6 weeks expected for a hip – does the say that the knee is not so bad or difficult perhaps? I’m probably moving more than I would on a normal work day. Besides, there is no evidence that the things actually make a difference and I truly believe that insisting on them day and night over a summer for 6 weeks constitutes a form of torture. So they’re abandoned and sitting dolefully on my bedroom floor only to be put back on for physio and my post op appointment and my husband has strict instructions not to give me away. The exercises start again every time I get the slightest twinge in my left calf!

I also have a tummy upset. This is NOT fun.

I’m managing the pain with Tramadol and Diclofenac and ice packs and getting out and enjoying the sunshine. Just looking forward now to our holiday in a few weeks in, as my brother in law puts it – nice flat accessible Devon! – and great choice for someone with arthritis and a new joint 😀 climbing-128

 

 

Home again, Home again, Jiggidy Jig

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I can go home.

I got myself comfortable last night. The physio doesn’t like it much. I found I could adjust the bed to lift my legs and produce the sort of astronaut position I use regularly at home to ease my spine. The last thing the physios want really is for me to be sitting or lying with knees bent because I have to be able to straighten my knee, but they appreciate the knee is not the only issue and I have promised to concentrate especially on the knee flattening exercises. I adjusted the bed to lie flat with my knees bent, took my pain relief and didn’t call the staff again all night – taking myself to the loo once. One of the most tricky bits of getting in and out of bed is doing it with a leg that doesn’t want to bend. The best way I have found to take control of this for myself is to hook my right toes under my left ankle. Then I have complete control over how far my knee moves and the speed at which I do it.

I spent the morning knitting and reading. I still feel pretty nauseous, but I’m not risking my chances of going home. The exercises went well and I reached – just about – the elusive 90 degree bend with some effort. I’m taking the yoga principle of move a bit, relax into the stretch then go a bit further. It takes some time to get the bend, but I guess it will come with time.

I knew I was going to be able to leave about 2:00 and my husband and son were off grocery shopping this morning. I gradually moved around packing my bag and getting myself washed and dressed, ate some lunch (and wished I hadn’t), saw occupational health, had my dressing changed again – the huge amount of bleeding and weeping I have forgotten to mention over the past couple of days is gradually reducing – and went through discharge with Alison, the nurse of particular note this year.

Nurses have not changed over the years. Just in these few days I have met the one who talks about her own stuff to another nurse over you as though you are not there while they make the bed around you, those who talk about themselves anyway and pay little heed to you, those who are bright and chirpy and call you ‘love’ and ‘sweetheart’ with condescension and ooze insincerity – and are usually considerably younger and as yet learned nothing about really being with and listening to their patients. There was one I took to actively avoiding, I was so uncomfortable with him! Nurses really should be made to do counselling and listening skills courses as part of their training. And those like Alison who are older, professional, know what they are doing, listen, understand and do what they can to solve the problems – what nurses should be but are few and far between.

Anyway, 2:00pm and time to go – I couldn’t get out of there fast enough. I had been really well looked after but there is no place like home! house_small