Nurse who suffers chronic tailbone pain

My photo
I am a Registered Nurse who has suffered with tailbone pain for over 8 years. Like all chronic pain, it is essential that sufferers get the correct support, diagnosis and treatment appropriate for them as an individual. This blog follows my journey with chronic pain, it expresses my personal opinions and thoughts. It is not intended as a replacement for advice or treatment from your normal Healthcare Provider.

Tuesday, 5 June 2018

Chairs!

Sorry, but I need to moan about chairs again!

Why can't anywhere get chairs right?!

Sat in my doctors waiting room earlier and I just could not believe how uncomfortable the chairs were. It's a 'waiting room' for goodness sake....for patients.


They are too high for starters, but mostly it is that ridiculous angle of the chair back which makes one have to sit almost semi-recumbent, right on that poor old tailbone.

My last blog I said how I could cope with my coccydynia, daily I can more or less try and live with it, forget it almost. then a simple situation like sitting in my doctors surgery reminds me that 'hey, guess what I have a sore tailbone!'

It is not fair. People should be given comfortable seats, or a choice of seats. I don't care if the colour is matching, or they are lined in nice neat rows, or they are all the same height! People with back problems, joint problems, coccyx problems need a choice of seat! It's not rocket science.

Rant over.....for today, anyway.

Saturday, 2 June 2018

How being physically active has helped my coccyx pain

Coccyx pain still affects my daily life, however generally I am able to live and function in a manner that allows me to not let it take control of me. I know I am fortunate now as it is no way as bad as it once was, or many people have.

Once I would have said it ruined my life- I was in pain pretty much all of the time; unable to sit, searching wherever I went to find some suitable surface to sit on; because even if it hurts you want to sit, you still want to chill out and relax somehow. I remember one Christmas in particular when I could not sit on the sofa, any chair or even the floor. I had to be semi-recumbent on either side/hip to find any degree of comfort, which had a knock on effect on my back. Most of that Christmas was spent in pain and tears.

I could not sit in a hairdressers chair for any length of time, once I had to leave 'half done' as I was just so sore.

Travelling anywhere was a nightmare. I had to either just not go anywhere, or plan ahead. If it was a particularly long journey I saved up (sometimes for a couple of years), just to be able to afford extra legroom or Business Class so that I was not sat the whole journey.

I have never found coccyx cushions to be of much help. Sometimes pain killers helped, sometimes they didn't. Sometimes a concoction of painkillers helped, sometimes they didn't; and the side effects of being heavily dosed up are not nice, as many of you reading this will know. Sometimes alcohol helped, but it's not something I'd recommend. I have a heat pad- that's about the only thing that gave some relief.

Steroid injections didn't help.

Manipulation under anaesthetic didn't help.

....And the embarrassment of the whole situation; it's ok to say you have a bad back.....but trying to explain you have a bad coccyx, well that's an entirely different thing. I got to the point of being past caring, and I would say. I used to then be amazed at how many other people suffer with this condition in silence, or know someone who does.

I was determined not to have my coccyx removed, which had been recommended. No! I wanted to manage this myself.

Over the years I took time off work both because of the pain, and the stress the whole situation caused. It put a strain on friendships, family....pretty much everything.

But now, well, I 'manage'. I am doing a more active job as a Personal Trainer, so I'm off my coccyx more. I am keeping much more active, and gym and/or walk every single day (with maybe a rest day once a week).

At the gym I do alot of weights. I choose weights that don't hurt my coccyx. This means avoiding many of the Resistance Machines that seem to make you sit down at an odd angle and place pressure on your coccyx. When I do Free weights (which I mostly do), on a bench, I do these lying down. The lying down part, involves my own technique of clenching my buttocks and kind of rolling on one butt cheek to protect my coccyx and to not roll directly on it- (this I still cannot do). I have to avoid things like Pilates, 'roll ups', 'sit ups', anything where you are meant to roll as you sit up, even the thought of it makes my eyes water!

Perhaps doing leg and glutes work has also helped by strengthening muscles all around my coccyx as well as my pelvic floor. This is bound to help support the area in a positive way. In fact, since doing weight training my posture overall is alot better and I feel I stand and walk taller.

I also do alot of cardio work as this is obviously off your coccyx. I avoid bikes and rowing as these are no good for me and my coccyx.

I taper everything I do at home, out and about and at the gym around my coccyx pain. It's mostly a subconscious thing. It's really only at the gym now that I have to think about what I'm doing and protect myself from causing pain. I also still need to think ahead with travel, as I still can't sit for any length of time.

I do manage now though. Pain does not rule my life. Yes, it's something that I am aware of, but I would rather manage it with exercise and lifestyle, than medication and/or surgery.

I think perhaps having a more positive attitude has helped, losing a bit of weight, and those natural painkillers that are released when you exercise.

I appreciate that everyone is different, some cannot exercise for different reasons, some have unrelenting unbearable pain like mine once was- to you my heart goes out. I wish you well, and I wish that your pain improves and/or you find a way to manage it.

Don't ever give up trying. You should not have to live with pain. Please see a healthcare provider or someone you trust who may be able to help, and do not give up until they do! You deserve a good and pain free life.










Thursday, 3 May 2018

Update

Trying to blog whilst studying is proving quite a challenge. All the sitting around is also not of much help to my coccyx. I have now passed my 'Adapting Exercise for Older Adults' and am on the way to achieving my 'Exercise referral Qualification' which will enable me to help all those with medical conditions- including lower back pain.

Interestingly one of the other people on this course suffers with coccydynia, although it presents differently to mine- his is worse on standing, whereas mine improves. He feels his came on after significant weight loss, mine was after spin cycling. It has not stopped him staying physically active though.

The effect activity has on coccydynia is due in part to the endorphins it releases. Endorphins are released when you exercise and help reduce ones perception of pain, acting as an analgesic. Endorphins also have a 'feel good effect' and help lift your mood, which can also help in our perception of pain. Additionally they can keep stress at bay, and help us sleep better as they act as a mild sedative. In fact, physical activity is often 'prescribed' for people with depression, stress and/or anxiety, as well as for back pain. Endorphins

So if you are suffering with any type of back pain, depression, or medical condition see your healthcare provider and get some advise on becoming more physically active. It has a whole heap of benefits!  Benefits of Physical Activity.






Saturday, 17 March 2018

Now, and then

Well I haven't blogged again for a little while. I have been trying to get things ready for my new business 'JillsWellness' JillsWellness on Facebook and JillsWellness Blog 

My flyers and business cards are ready to go out and I plan to have a good long walk at the end of March posting these through letterboxes. I am going to start with doctors surgeries and see if any will let me leave some with them. I have had some interest locally already, but there are a few things happening next week which means I cannot really start properly until April time.

I have purchased some equipment such as dumbbells and resistance bands. My aim is to focus on the housebound, the older adult, those with long-term health conditions' and those who want to get fitter, stronger, and maintain their independence, in fact anyone who just would rather exercise in the comfort of their own home. It's very early days obviously, so I will just need to wait and see how things go.

'Sit to stand'

I'm really passionate about helping older adults maintain their independence for as long as possible.

All this increased gym activity and exercise has dramatically improved my coccyx pain. I guess this is due to a combination of losing some weight, endorphins being released, mood improvement and just generally keeping off my backside and being a lot more active.

It has been so difficult in the past, as when my coccydynia was at it's worst all I wanted to do was curl up in bed with strong pain killers and a heat pad, to cry and hopefully sleep. 

How that has changed! Days are completely different- all I want to do now is get down to the gym and lift some weights, have a walk outside or do some cardiovascular training. All I want to do now is be active, and if anything prevents me doing this (like waiting in for a delivery) I go stir-crazy!

Activity has definitely helped me.

According to review by the Cochrane Library "According to the available evidence (only 25% of included studies reported on possible harm or injury from the intervention), physical activity did not cause harm. Muscle soreness that sometimes occurs with starting a new exercise subsided as the participants adapted to the new activities. This is important as it shows physical activity in general is acceptable and unlikely to cause harm in people with chronic pain, many of whom may have previously feared it would increase their pain further."


However, they do acknowledge the sample size was small.

I would recommend getting advice from your Health Care Provider and seeing what they will allow you to do. There is normally an activity for everyone....you just need to find what's right for you. Get a Personal Trainer to help you with your journey.


“Good things don’t happen by coincidence. Every dream carries with it certain risks, especially the risk of failure. But I am not stopped by risks. Supposed a great person takes the risk and fails. Then the person must try again. You cannot fail forever. If you try ten times, you have a better chance of making it on the eleventh try than if you didn’t try at all.” Arnold Schwarzenegger (age 70).

*ALWAYS SEEK ADVICE FROM YOUR HEALTHCARE PROVIDER BEFORE UNDERTAKING ANY NEW EXERCISE, OR IF YOU ARE UNSURE ABOUT PARTAKING IN PHYSICAL ACTIVITY.

This is me and my gym buddy (my husband and my best friend). Having someone to train with also really helps keep you stay motivated and focussed on why you are being physically active and what you are trying to achieve. 








Saturday, 3 February 2018

Finally time to blog again!

Well, my coursework for my Level 3 Personal training Diploma is now all in. The practical stuff is all passed. So, I am now a Registered Gym Instructor (Level 2), but waiting to get my results for the Level 3 coursework. I am a Registered Exercise Professional and very excited!


In addition to this I undertook a mandatory Update Day for Nurses, so I can keep this Registration going as well. As long as I can prove I do a certain amount of Nurse related procedures and assessments I can stay registered. The NMC have confirmed this for me.


 My aim is to empower people to lead fuller lives through personalised programmes that restore function & vitality. I want to improve individual overall fitness, wellness & health in a responsible safe & professional manner. Motivation is key. Particular interests for me will be fallers, the elderly, those with long-term health conditions, in fact- anyone just daunted by the whole ‘gym thing’! I would like to go on and do The Exercise Referral Course, and also specialise in backs later on.

Exercise has helped dramatically with my lower back and coccyx pain. My mandatory update day was a full 9-5 not including travel time. Every aspect was sitting, apart from Basic life Support. I simply could not sit all day. I had genuinely forgotten what coccyx pain was like. Imagine that! I HAD FORGOTTEN WHAT COCCYX PAIN WAS LIKE.....until that day. 

I am over being embarrassed about it now, I had to stand for most of it, and I explained why I was having to stand. I am still baffled that you get weird looks when you try and explain about coccyx pain, and how awful it is; even other healthcare professionals looked at me like I was talking in some foreign language about something they had never heard about....or shock, horror I was openly discussing my backside.

I simply don't get it.

Anyway, it was a long and painful day, improved by standing. The next day- straight to the gym. What a relief. I am so fortunate the pain did not linger. For me staying active is so important. It is not just because it helps with my pain, it keeps me cheerful, it gets me out the house (now that I have lost my job), it's helping me loose weight, it's introducing me to new people, it's keeping my joints supple, my body strong and flexible and my heart and lungs healthy- you get the picture!

I feel for those who are unable to exercise for whatever reason. I have had those times, but always been fortunate to be able to get back to it at some point.


Providing that I'm careful I can even sit on my bum, but NEVER directly on my coccyx, I don't think I'll ever to be able to do this. So sitting and getting on and off equipment is done in my own individual and unique way, a kind of weird, subtle little roll onto a buttock!


Friday, 5 January 2018

Bloggers Recognition Award

I have received my first Bloggers Recognition Award nomination from notebooksandglasses so a massive thankyou for this. After blogging for so long, about such a random topic it is good to have recognition from a fellow blogger. It is an award designed by bloggers to recognise others in the blogging community.

The award simply requests that you blog about your award, and a little bit about how and why you started your blog and a few tips for other bloggers, or aspiring bloggers.

How my blog started

I was inspired to start blogging by the boxer Audley Harrison. I had been suffering with coccydynia for many years and undergone several types of treatment. No-one understood how awful this condition was, and how completely and utterly it impacted on my life. Dr's seemed to have little sympathy, co-workers and friends tried to understand, but just didn't 'get it'. It was an 'invisible illness'. I felt so totally and utterly alone and isolated in my pain and misery.

Then, one night, I took to Twitter and saw that Audley had coincidentally tweeted about tailbone pain. Sadly he got the predictable idiot trolls responding, but he also got genuine heartfelt sympathy from many.





I replied to him, telling him about my story, and amazingly he replied.

He inspired me to start telling my story, and perhaps, hopefully to help others in the same situation.



I have been totally amazed at how many people suffer with this condition, and how it seems to be so poorly understood and treated. I have had so many people approach me regarding this that I have been utterly dumbfounded much of the time. All have similar stories of lack of understanding and sympathy from Health Care Professionals. Assessment, treatment, follow up's.....knowledge in general seems very lacking for such a common and debilitating condition. I can only think this is partly due to the stigma attached to the area involved. People just don't want to talk about their bums at the end of the day!

So I started this blog to reach out to other sufferers, to encourage them to get help and support and to realise they are far from alone.

It has also helped me. Documenting my progress, and how I have dealt with coccydynia over the years has been very therapeutic. If I have a helped just a handful of people it has been worth it.

I have always tried to be in charge of my pain, and not let my pain be in charge of me. This has been hard at times when every area of my life is affected- sitting for any length of time, for example at the cinema, hairdressers, travel, a meal, even just trying to 'chill' at home, all have been a challenge and reduced me to a heap of tears, many, many times. But, I am winning, I am conquering this.

Tips to new bloggers

I would say, just believe in yourself and what you want to blog about. If it interests you, it will interest other people, however random and obscure it seems. Just have fun with it, and learn as you go. This blog is very basic now compared to many, and sadly I can't update it to a newer version as my phone won't support it. So, don't worry- however simple you want your blog to be, make it so. It is your blog, your journey. Enjoy it.

My Nominations

Assuming this old blog will allow the links!

Travisandthebrain.wordpress.com http://travisandthebrain.wordpress.com/

A Strange old Tail http://astrangeoldtail.blogspot.co.uk/



Monday, 18 December 2017

The sacrotuberous ligament....innocent until proven guilty!

Golly, the anatomy and physiology (a&p) part of my level 3 Personal training was incredibly difficult. I like to think that I have a reasonable amount of knowledge about a&p, what with my Nursing and MSc, but this has been a challenge let me tell you!

I am glad to say that I have (provisionally) passed this now, along with my Practical Assessment. I still have two case studies to complete as well as the nutritional element, so the qualification is still a way off.

I thought I would share with you, a new thing I have learnt doing my a&p coursework, and that is the relevance of the sacrotuberous ligament to us coccydynia sufferers.


These ligaments play a vital role with our stability, and are involved in standing, walking and running. When we transfer our weight from one foot to the other this ligament is involved. What is more, these strong, broad ligaments are strong enough to support the sacrum, and bear weight when we stand upright. It is a ligament of the sacro iliac joint which is connected to the sacrum, and connects the spine to the pelvis, and the bottom of this ligament connects to the leg muscles. Apparently those with hypermobility often get laxity of this ligament.

It is claimed to often be involved in coccyx pain, as it attaches to, and stabilises our little friend!   In fact the Sacrotuberous can cause a whole host of lower back problems,  including sciatica and piriformis syndrome.

Some cited causes of dysfunction with this ligament are that one ligament may be shorter than the other, or one leg shorter. Alternatively the ligament may have been damaged or injured such as by a fall onto the buttocks. This ligament can also get stressed by excessive or vigorous activity, and may consequently become ossified (bony), and potentially compress nerves and blood vessels. There are other causes of dysfunction- take a look at the link above.

If you suspect this may be the guilty suspect for your coccydynia, get some proper medical advice and an assessment, treatments such as massage may be enough to help you.

So, anyway, just thought I would share that with you. It was a new one for me, and I thought I had exhausted the causes of coccydynia! It kind of ties in with me being told that I had potentially damaged my coccyx through excessive spin cycling. This was placing strain on all the ligaments of my lower back, as the required cycling positions put them at a very unusual angle, for an hour, at least three times a week (a repetitive strain injury). On top of this I have hypermobility syndrome, so the time in the saddle also did not help my mobile coccyx.

This may be my last blog before Christmas, so I wish you all a very merry Christmas and a happy New year. I hope it is as pain free as is possible. Remember don't suffer in silence, talk to someone, get some well deserved sympathy, and if you haven't done so already please seek professional medical help....there may be something that can ease your pain.