My Pain Story Part 4

​This is the latest update on my chronic joint pain and on my efforts to lesson that pain.  In my last update I saw a delay in the local pain clinic services due to lockdown last spring.  They got back in touch with me last May with a letter informing me of an appointment with the pain clinic doctor I saw previously.  This was to be a phone appointment due to still being in lockdown.  I was not expecting to hear from her, but was pleased they still had me on their list.  The appointment was really just a check up to see how things were going and to make sure I still wanted to be on their list when services resumed again.  It was reassuring to be told that I could pick up where I left off after lockdown.  

The next communication from the pain clinic came in September.  I had a month to get back in touch and book an appointment with a pain specialist physiotherapist or they would assume I no longer wanted their services.  I got back in touch almost instantly.  Later that month I had my phone appointment with the physiotherapist.  She explained they were still unable to offer services in person, but were doing some things online.  She asked about my pain in detail and together we decided that the tai chi would still be something I could benefit from.  As suggested I had a go at some of the tai chi videos on the pain clinic website.  From the first try I felt it was something I would enjoy doing.  It seems to be about mindfulness with exercise which builds on things I have done previously both as a drama student and in laughter yoga classes that used mindfulness as a wind down at the end.  

Meanwhile as I was waiting for the first tai chi class, I started using Wii Fit.  I got a second hand Wii for my birthday with Wii Fit.  Having previously tried a Wii some years before and have seen Wii Fit I thought it might be a good way for me to motivate myself to get fitter.  Since mid September I have been trying to use Wii Fit for at least fifteen minutes most days, often longer.  I have found it extremely helpful to get me stronger and fitter.  It uses yoga, muscle exercises, aerobics and balance games.  It lets you work at your own pace and teaches the exercises one at a time, helping me to gain confidence in my abilities gradually.  Some exercise classes throw you in at the deep end and expect you to already be reasonable at things, with the Wii it lets you start at whatever level you are at even if that is absolute beginner.  I like how you score points and get feedback so you can see the progress you are making and what you need to work on more.  At the end of each training session you can take a body fit test and it will see how you are doing fitness wise overall.  My overall fitness scores have definitely been improving over the months. 

Then in October and November I had two video appointments online with the physiotherapist from the pain clinic.  She introduced me to tai chi with the basic stances and a few of the easier moves.  I practised between appointments and felt like I was getting the hang of it well.  Since I seemed to be enjoying it and benefiting from it, the physiotherapist put me forward for the group course.  Over eight weekly sessions it teaches tai chi adapted for pain management.

I had some technical issues at first trying to find a device that would work the application they use for the classes, since my tablet refuses to work with a rival companys video chat.  (They do assume you have the right technology and for some people this could be a serious issue.)  However I figured out a way to do it on my phone, although rather a small screen it did work well enough.  

The classes lasted about an hour each and gradually taught us the moves of tai chi building each week a longer routine of movements.  There are a few kinds of tai chi and the pain clinic use Shibashi Qigong which has eighteen moves in total.  Some of the moves combine with others making it easier to remember them all.  The classes also focused on body awareness and being present in the moment in a mindful way.  We shared at the end of each class together with how we were getting on with the tai chi during the week and how it was helping us.  There were about six of us in the class and we all agreed that tai chi was of some benefit to chronic joint pain.  

Tai chi is more of a work out than you may think.  Despite being fairly slow paced it stretches out muscles, helps posture, and improves breathing technique which eventually can improve lung capacity.  I find tai chi mentally beneficial as well.  The mindfulness is relaxing which is turn helps my muscles to relax; this is especially helpful for my tense shoulders.  

My shoulders are one of my most painful areas, especially the right one.  The physiotherapist says this comes from years of having had a limp that caused me to walk more on my right side.  Also previously having used walking aids such as crutches and a stick have probably not helped my shoulders.  Whilst doing tai chi I can actually feel my shoulders lowering and they feel as if they are less heavy.

Now that I have completed the tai chi course I need to keep up the practise of it so that I continue to benefit from it.  I use the videos on the pain clinic website fairly regularly and try to practise some of the stances and moves at home when I can.  Music can be helpful to a practise, especially calm classical music.  I am still using Wii Fit regularly and plan to buy the extension pack to this soon once I have reached a point I need to advance my workouts.  I feel fitter now than I probably have been for most of my life.  I can walk faster and further than I used to and feel less out of breath walking up hill than I once did.  I still get frequent joint pain, but less debilitating levels than it was most of the time.  I have managed to reduce the number of pain killers I take a fair amount, although I still take more than some people do.  Cold weather and having a period can cause my joint pain to flare up again sometimes and I still have to be careful not to over do the exercise and walking or I can suffer for it the next day.  

I will write another post on this one day if and when something interesting occurs with my pain.  I welcome questions and comments on my posts. 

Tai chi pain clinic videos: 

You can find more relevant posts about my usual blog topics on my Facebook page Artificallyhip.


My pain Story- Part Two

I said I would be coming back to this topic and so here we are.  I last wrote about this in October so that is where I will pick things up from.

I got a referral to the Social Prescriber at my GP surgery.  This is a role I had not heard of before.  According to the NHS website a social prescriber looks at non-clinical ways to help with chorionic conditions.  So I thought I might get some advice on fitness classes or free swimming sessions or something along those lines as the online description seemed to suggest.  However, although she was a nice enough person, my local social prescriber left me thinking of the phrase ‘as useful as a chocolate teapot’.  She had no medical training at all and was basically there to suggest ways to distract me from my pain and to get out more.  She asked me about my hobbies and as soon as craft came up she suggested I join a local craft workshop.  Had I heard of this local arts and craft place?  Seeing as I had already told her I volunteer in a craft shop and show an active interest in craft, funnily enough I had come across it before.  Some of her suggestions, whilst I can see they were not all totally stupid ideas, did not take account for my limited budget, which she had already asked about.  When she resorted to looking up things online to get ideas, I knew the session was not going to benefit me.  It is also not going to benefit many others if there is no help with the costs, most of these suggestions were not free and certainly not free to travel to.  I hope most social prescribers are more useful, otherwise what a waste of an NHS budget when it is already struggling finically. 

I made a follow up physiotherapy appointment as I was supposed to do.  This time the appointment came a lot quicker than before.  I managed to see the same physiotherapist as last time which helped.  I felt able to say my wrist and hand exercises are helping a tiny bit, but not a vast improvement.  I was told to keep up the exercises till the pain has totally gone, which it still hasn’t.  I mentioned that I now have almost constant shoulder pain, but still no help with that despite making it clear that it was probably the worst part of my pain issues at the time.  He did feel annoyed on my behalf that my pain clinic appointment had still not come and said he would contact them for me.

I managed to get another GP appointment, this time with only a two-day wait, much better than last time which was nearly a month.  I saw a different doctor this time and was given a new painkiller to try along with the codeine, Amitriptyline.  Often used as an antidepressant it also is used for neuropathic pain and tension headaches.  The idea was to take them mainly at night to help me sleep, since the pain is making getting to sleep harder.  However after taking the entire packet for about a month decided not to order any more as they seemed to prove ineffective.    

I finally found my TENS machine again, which I used to use before my hip replacement.  It sometimes helps to slightly relax my neck and shoulders.  It is most helpful at night right before bed so I can lie down more comfortably.  Its affects do not last that long and it does not totally get rid of the pain, but it does help to relax my muscles somewhat.   Another slightly helpful thing I have found is muscle rub gel.  A gel you rub in to the sore muscles.  Again the relief is only temporary and only mildly helpful, but better than nothing.

Then I noticed a new issue, pain in my toes, they seemed to get overly cold, red and very sensitive.  The pressure of walking sometimes hurt my toes.  One night my left toes got super cold and tingly and then hurt a lot, two toes went purple.  Despite socks and being under the bed covers it took nearly an hour to fall asleep due to the pain.  I mentioned this to the doctor who suggested it could be Raynaud’s Syndrome. 

According to SRUK, a charity that supports those with Raynaud’s, ‘Raynaud’s is where the small blood vessels in the extremities such as hands and feet, fingers or toes are over-sensitive to even the slightest changes in temperature, the cold and sometimes stress’, (

A couple of weeks later my fingers started to also get painful and sensitive in cold weather.  My fingers sometimes go totally white and become more difficult to use.  Sometimes a flare up can last a good twenty minutes or so in my fingers.  My toes got worse becoming so sensitive that even the slightest knock to them can hurt way more than it should.  The tips of my toes have pealing skin and some have developed a hard white crust on them at times. 

I then had another doctor’s appointment, this time with my own GP.  This time she actually looked at my fingers and toes.  She put pressure on them and noticed they stayed white after for longer than normal.  She confirmed I do have Raynaud’s Syndrome.  She said that although not initially caused by it, Raynaud’s can be made significantly worse by joint issues such as the ones I have.  She also took me off a medication I was on for anxiety as it can also make Raynaud’s worse.  Whilst the anxiety pills were not amazingly helpful, they were somewhat useful, so that is a bit annoying. 

The main cause of a Raynuard’s flare up is cold weather, but stress, emotional changes and hormones can also be a factor. So being the middle of winter my fingers and toes have hurt rather a lot recently, in fact my toes have hurt almost non-stop for nearly a week now, although the severity to which they hurt can be less at times. So I am trying to keep my fingers and toes warm and avoid being outside in the cold for very long.

Raynauard’s in the fingers

Finally the pain clinic has sent me an appointment.  It is at the end of January, so that took five months from making the initial referral!   I suspect the only reason I even got this appointment was both my GP and physiotherapist contacting them again on my behalf.

Again I will be coming back to this topic when I have an update on how things are progressing with my pain issues.  This has been a slow process so far and certainly not yet done trying to figure out what exactly is going on with my body.

My Pain Story- Part One

I have had a very slight worry in the back of my mind for years that one day my posture issues would get a lot worse.  Having had previous issues with my posture in various ways I knew that it was only a matter of time before they would flare up again.  So I kept up my physiotherapy exercises for it even after my previous shoulder and back issues had died down.

Previously in my mid-twenties I had a frozen left shoulder that caused me some real problems for a couple of months or so.  Weekly physiotherapy including the use of an ultrasound machine used for massage helped a great deal, alongside doing daily exercises.  Since then I have been back to physiotherapy for shoulder and neck pain that I wanted to prevent from getting worse. 

However, the exercises only keep the problem at bay for so long before they flare up again.  Now I have major pain down most of my left side.  I have had minor twinges and aches most of my life, but last June was when I noticed things getting significantly worse again.  I was having more than my usual amount of sore hip muscle issues and the pain was a little different to just muscle weakness.   Then when my back became agonisingly painful on my usual walk home from town I knew that something was not right.    

So I booked an appointment with my GP.  She thought it could be the curve in my spine pushing on a nerve sending pain across my left side.  I was told to book with physiotherapy and to come back in if I felt I needed stronger pain medication than over the counter stuff.  Even booking with physiotherapy was easier said than done, with the self-referral system we have in our area, and when I did get an appointment they were so busy it was a wait of almost a month to actually see them.

Meanwhile my pain issues were getting worse.  Not only did my lower back and hip area hurt, but the pain was spreading.  Firstly down my leg to the ankle, then to my shoulder and neck and then my arm and even my left hand started to hurt.  The last straw was when my left hand became so weak I could no longer fully use it without pain.  This was the point I decided I needed stronger pain medication and went back to the doctor.  I was given Gabapentin tablets, which are specifically for nerve pain. 

I eventually had my physiotherapy appointment.  The physio agreed my posture is bad, but was unsure that I actually had scoliosis and was not sure that it was a nerve issue.  She referred me to orthopaedics since I had never actually seen them about my back and posture specifically before.  That meant more waiting for another appointment. 

I knew Gabapentin tablets take a few days to have much effect, but after nearly two weeks I still had no relief from them.  I decided the physiotherapist was probably right and it might not actually be a nerve issue, as the pills do not work on other types of pain.  I managed to get a phone appointment with a GP for different pain killers.  I ended up with prescription strength codeine based medication, which is helping my pain, although not as effectively as I would like.  I also worry slightly about being on them too long as they are an opioid and opioids are seen as quite dangerous to be left on long term. 

By the time I had my orthopaedic appointment it was September.  The orthopaedic specialist confirmed it is definitely not nerve pain and not scoliosis.  He suggested one of my issues could be tennis elbow, which to me sounded a bit odd as my elbow is one of the few places I do not have pain.  He seemed to think I have a series of different things which may be triggering each other.  He told me I have over reactive reflexes, but never told what, if anything, this could mean.  So after a thorough examination from both a physiotherapist and an orthopaedic specialist I was left with tennis elbow and over reacting reflexes, not really all that helpful.   

I was advised to attend the pain clinic.  However to do that I needed a GP referral, which meant waiting two and a half weeks.  What was even more frustrating was when I finally did hear from the pain clinic I had to ring them just to confirm I still wanted an appointment and to pick the hospital I wanted it at, then I was finally put on what I gather is a rather long waiting list to see them.  So I still do not have my appointment with them yet!

Then my right shoulder started to hurt.  I put this down to either sleeping on it badly or over compensating for the left, but the pain did not go away.  When it spread down the arm and to my right hand, with pain exactly like my left side I knew my pain was no longer isolated just to my left.  As frustrating as having a painful and weak left side was, now both sides are bad it makes daily functioning really tricky.  So far my right leg is pain free, and hopefully it will stay that way as my left leg has always been worse due to my hip issue and tends to be more sensitive.

Most recently I went back to physiotherapy as advised by the orthopaedic specialist.  I have been given some wrist and hand exercises to do to try to tackle my possible tennis elbow or whatever it is causing me pain in that area.  So now I do three lots of exercises that I have been given over the years for posture, leg strengthening and now hand and wrist.  If nothing else it could help to keep me functioning somewhat even if the pain is not lessoned.

I am pretty sure my posture issues stem from my hip issue causing me to walk with a limp and rather turned out gait for years and having spent a long time using walking aids in the past.  Perthes Disease might be described by experts as a childhood hip issue, but it has definitely affected more than just my hip and has left me with life-long issues.-

I am still waiting on my pain clinic appointment and will see my GP again next week.  It is all rather a tedious lot of waiting for appointments and so far not much progress, but we will see.  I will be coming back to this topic again when I have more to tell you.