Category Archives: Chronic Pain

I’m on my way ….

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At the end of April, exactly a year since my hip was removed completely, we moved our bedroom back upstairs. The week before, buoyed by being able to get over the front doorstep on my own, I decided to try the stairs. Now, with help from my husband, a crutch and the bannister, I get up the stairs and down again a couple of times a day. I can get into my own shower – bliss! – albeit with a shower stool and a bit of help.

The study, where we slept for the past year, on the other hand, is a tip – full of boxes of a year of – well we’ll pack it away and sort it sometime – stuff.

Now I’m back at the gym too. We went a couple of weeks ago just to see if it was possible. I take myself into the changing rooms and to the pool side for a swim in my wheelchair (Short story – I fell a couple of weeks ago while using crutches at home on wet ground. Typically there was no one around and I didn’t have my phone). I can get down the ladder into the pool and swim. Front crawl and back crawl only now. It was odd at first having one float leg that did nothing, but I’ve got the hang of tensing muscles to hold it in place now. Breast stroke isn’t possible with only one leg – I get nowhere!

In the gym itself we had an MOT. Outcome – couldn’t get much more unfit. We also had a PT session to show us the machines and build a programme. Treadmills, cross-trainers, bikes (even recumbent) and rowing machines are out, so my warm up is bouncing on a swiss ball with a pair of 1Kg weights in my hands. It’s hard work! This is followed by shoulder press and arm exercise machines and an abs trainer. 3 x 15 repeats. I did think I should be doing some leg exercise, but by the time I’ve been up and down my own stairs twice, then up and down the stairs at the gym, I reckon I’ve done more that enough of that!

I come home tired but happy. A man at the gym today said to me that it was good to see someone in my position doing something to keep fit. It’s more like getting fit again – and I miss not being able to do the bending and stretching of yoga and Pilates, but I reckon getting whatever parts of me I can fit again is a bonus. 1498494821_fitnes

 

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Two years down the line.

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It’s been some time since I posted and thought it about time I considered my progress here. 

I successfully got myself off the Tramadol completely. It was an awful month and I felt unwell for another month after that. Not helped of course because when you come off something it needs to be replaced by something else – and that wasn’t there. The effects of the Tramadol made me feel still as though I had a bad flu.

Help was at hand eventually. As nothing surgically could or would be done about my spine (and I don’t much want yet more surgery anyway) I was sent by my GP to Physio. After a few sessions I was referred on to Dr Graeme Brown, who wrote a book I already had on my counselling shelf http://www.amazon.co.uk/How-Liberate-Yourself-Pain-Practical/dp/1899398171/ref=sr_1_fkmr1_1?s=books&ie=UTF8&qid=1439909927&sr=8-1-fkmr1&keywords=graham+brown+pain

and then to his physio team who put me on a functional restoration course. I was sure if this meant I was going to be stuffed, upholstered and auctioned off, but I was happy to give anything a go. It was an assessment, twice a week for 3 weeks and then a final assessment to see what progress was made. Five of us started in week 1. By session 2 there were 2 of us. Not a great start! At one session there was only me. So much for the group experience. The course was a system of exercises to show whether we were responding in a boom or bust fashion and to learn how to pace ourselves to increase activity, in addition to building flexibility and strength. There were talks on realistic goal setting and it was all very much CBT based. However, for me it worked. It gave me permission to not give up and decide I couldn’t do things because if I worked at it then – just perhaps – I could.

I could walk about 500m with sticks and swim 1km. If only I could swim everywhere! I built up little by little with walks with my family, swimming weekly and doing a mixture of the physio exercises with Pilates to make a programme of my own.

Cutting a long story short then.

I do seem to have reached a plateau where I get to 2 – 2.5km and don’t seem to be able to improve. However, I just did 2.3km this afternoon without any sticks. Admittedly I was limping by the time I got home, and this is not necessarily a good thing, but I still did it. I find after about 800m I can feel my left hip swelling. My left side continues to be noticeably weaker than my right and I don’t seem to be able to progress this strength with exercise. That is also the side affected by the nerve pain from my spine and had both a hip and knee replaced.

We took our holiday on our boat. Only a week out of the two, but I walked between locks and managed lock paddles and gates too – often twice each when they were not set in our direction. The worst day was the mistake of walking 2/3 km – a big misjudgement on the map – which wouldn’t have been too bad had it not been in the middle of working through 9 locks.

I can climb the stairs without much thought – usually without holding the banister, unless I am tired. 

I have been doing some gardening, albeit much more restricted than a few years ago but considerably better than more recent years.

Pain is not bad – certainly not worse than it was on Tramadol. It was replaced with Naproxen which I take with Paracetamol. The Paracetamol seems to enhance the effect. I take 2 Amatryptaline (I know that spelling is wrong!) at night to help with the nerve pain. It does seem to be better, unless I overdo things.

There are down sides – I can feel arthritis pain in other parts of my body – further up my spine aches badly and wants to bend me forwards when I walk, my left shoulder and down my left arm, and more recently my hands and feet – especially hands, have become acutely painful and I have take care of them now. Sometimes I watch them pull into spasms I have to gradually ease out of them again.

But what would it be like if I hadn’t had the replacements? It has been hard, especially having them so close together. It made me very weak and unfit and it is a lot to pull back from. But two years down the line I can do these things. They might not be much more than before the surgery – but it’s certainly not worse, and the experience of my upper body tells me by now they would have been much much worse. Two years ago I was in a wheelchair much of the time if I got out of the house at all. Now I’m walking to the river and back with my son.

It was worth it!

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 🙂

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