Tag Archives: chronic pain

Two years down the line.

Standard

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!

Standard

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

Standard

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

Standard

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.

Arthur the Elephant

Standard

I have an elephant in the room. Well I have a couple actually, and I don’t usually disclose either at work, because they don’t affect my work usually. But it’s been difference and diversity discussion time both on the course I teach and the course I’m taking. 

One of my elephants is called Arthur. (Arthur Ritus – get it?!) elephant

 

 

 

 

This is a story about a cow. It could be an elephant just as well – but this time it’s a cow. It was shared by a friend of mine in a teaching session about chronic illness, and it is just so apt I want to share it here too. It’s part of a story I haven’t read but I’ve put the reference at the end. 

“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it. When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.”
Alison Lurie – ‘The Last Resort’.

cow

It’s the last line especially that always gets me – they pretend the cow (or the elephant!) isn’t there and they prefer it if we go along with the pretence. I wonder how many of us that applies to?! It’s easier on everyone to ignore the elephant, even to push past it, than to acknowledge it and accept it – and especially to have to feel it is imposed on someone else.

Doing the best I can.

Standard

I read a blog today by a lady called Toni Bernhard. I’m not intending to copy as we all have our own stories, but her headings made such a lot of sense – and so I hope she  won’t mind if I use them. Chronic pain, chronic illness – there are hundreds and hundreds – and many more people who suffer day and year in and out. Mine is specifically arthritis – and a severe and chronic mobility and pain issue that seems to have crept up on me so fast I still can’t quite believe it.

We mostly all have people who do a lot for us – my amazing people are my husband and my son, and also people I have met through forums or friends on Facebook, who know what is happening and always comment positively to lift my spirits, and to those people I am endlessly grateful.

However, Toni is right – there are things you really wish you could say, but don’t.

1. The grief I feel over the life I’ve lost.

It is one of those major life stressors, like death, loss, separation, moving away – endings of  all kinds.

There is a lot to grieve over, yet I didn’t really know that until now. My parents had many chronic health issues between them. I thought I’d avoided them all. And I certainly never considered grief. Surely getting to retire early is a bonus!

Now I know that there is a lot to grieve over — I’m pleased I trained to work online, because if I’d still been a teacher, for example, I would have had to leave work altogether. There is the loss of income, not being able to go out alone, the loss of independence, saying goodbye to any real activity – I’ll probably never get back up a mountain, manage the boat, join in runs or hikes or activities that others write or speak about and take for granted, and it’s lonely. My life is changed forever. There is a big dark hole where ‘I’ used to be.

Mostly I’m fine. It’s not like losing a partner or a child to death. At least I have a life and I intend to make the best I can of it. Most days are good and I can laugh and joke and be upbeat about this. If someone asks how I am of course “I’m fine” – the most widely told lie. But sometimes it just comes out of the blue. Something is said, or read, or seen, or thought and suddenly there are tears – where did they come from?! And it can be terribly intense.

It’s the whole process – and we’ll go with the Kubler-Ross 5-stage model here.

Denial – this isn’t happening to me. It’s a mistake. The scans are wrong. It’s not as bad for me as for others. Anything to shut out the magnitude of what has just been dropped on us.

Anger – “why me?”, “This just isn’t fair!”. Why not? It has to be someone – ok that doesn’t help, but that’s what I’ve been telling myself. I don’t know who I’m angry with. Actually there’s only me – there isn’t anyone else I can be angry with.

Bargaining – anything to extend things. Having replacements can fall into this category – I have new hips and am about to have a new knee – but whenever I have something replaced something else seems to be wrong.

Depression – “What’s the point?” I can’t do things, why bother trying? This is when I start to avoid people and things.

Acceptance – looking forward to this one!

And there is always someone worse of isn’t there? Well of course there is – but it really doesn’t make you feel any better. 

2. I feel as if I’m letting you down.

My husband is great. However, I do wonder why he would want to be with me – especially now. I’m more trouble than I’m worth like this. My son – I try to do what I can with him but I feel guilty when he needs attention, wants to go out and do things – it’s so rare! – that I feel terrible if I just can’t do the things I used to not so very long ago.

I feel I need to apologise for not being able to join in, for being in pain, for being too tired (and arthritis and pain make you unbelievably tired!) 

I feel as though my pain and limited mobility, and that it is getting worse, has ended their lives too. I was there for them, and now the tables have turned.

I can no longer even pretend my prospects for contributing to the household income are going to get any better. Sometimes it feels as though hope has gone too.

As my mum says, well you just have to get on with it don’t you – you have no choice – everyone else needs looking after – I had to do it – I can do anything I put my mind to …. yes – that’s guaranteed to make me feel worse. Especially as she never asks how I am (because I’m just like her apparently so should just accept it as she does!), but will ask about my family (great 🙂 ) or tell me about my brothers whose lives are falling apart as a result of their own behaviour and attitudes (not so great 😦 )

3. A chronic condition can be embarrassing.

I  always set unrealistically high expectations for myself and then judge myself negatively when I can’t meet those standards. I’m a perfectionist. But I’m trying to get better 🙂 

We live in a culture that repeatedly tells us we need not be sick or in pain. Also, we have this British stiff upper lip – we pull ourselves up and just get on with things and don’t complain. 

Guilt creeps in too – as though I did this to myself and it’s my fault I can no longer be the person others expect me to be. Do they expect it? – or is that another unrealistic expectation of my own?

When I am asked to do something I have to now think about whether I can. I have always wanted to go to Italy, among other places. I’ve never been abroad beyond 4 days in Paris where i was pregnant and ill, and 4 days in Disneyland Paris where my son was ill. The opportunity was finally raised and I’m having to say no. There are all sorts of places I would like to go and see, but I can’t walk there or around them. To do it my husband would have to take me in a wheelchair – not fair on him. We’d be in the way of others – not fair on them. I’d slow everyone down.

And in a future where we try to keep our private lives private, I’d have to declare to the world my most inner secrets of my health – that I am in pain, I am stiff and sore and can’t move or stand or walk. It’s like saying I’m old, fat, unhealthy – but it’s my own fault – I should be young, slim, fit and up for anything.

Now I feel guilty because I have someone else to clean my house, touching my things, being in my space – because I can’t do it myself, but in telling others I feel it makes me sound snobby – as though cleaning my own house is beneath me. I can’t go out to work any more. Online work is limited and I will never earn a great deal of money. The pressure is on my husband to work, look after us, look after me! – and also earn enough somehow to get us a home of our own and keep the household going. I feel helpless in the pressure he has on him because of me. However, if I had a choice, I would certainly be independent. Being dependent is not something I would wish on anyone – that feeling of not being entitled and having to ask for things when you don’t earn or have the ability to do it for yourself.

So to my husband and son – I love you – I don’t want to be like this and I am grateful for all you do for me. But it sad, and embarrassing and lonely here. I feel I should be better for you – and I’m doing the best I can.