By no way do I want this to be a pity post.  I am not after sympathy, and recognise greatly that others have far worse than me to deal with.  However, I will happily take a hug, hugs are good 😙.

I want to use this blog to explain a little more about my ‘bad back’.  I feel I’m mentioning it so much in my day-to-day life, people must think “ah we all get backache, take a pill and get over it”.

My back pain started not long after having Alfie, so near on 5 years now.  It’s a low back pain radiating into my hips.  What is different with my back pain is, it comes on mainly in the early hours of the morning.  For 2 years I put up with it.  I took a hot water bottle to bed, then took painkillers around 4am.  At the same time I then ‘re filled my water bottle and had a very broken pained sleep until 7am.  I realised this cycle of pain wasn’t getting any better, so a visit to the doctors was made.

I was passed from specialist to specialist over the coming year.  They all had many ideas of what was wrong.  Some said it was because my core tummy muscles were so weak, so a bout of physiotherapy was given.  One specialist noticed the dip/curve in my spine and felt this was the root of the cause.  This was because of my unusually heavy 17lb triplet pregnancy, but wasn’t the reason for the pain.

This guessing game went on for some time.  Mid investigation bloods were being regularly taken, and the same set of immune disease related bloods kept coming back positive.  A referral early last year across to Rheumatology helped to give the answers I was so desperate to get.  The consultant I now see every 3 months is ace.  It’s so lovely when you have faith in a medial professional, I really hope she doesn’t leave, or I will find her 😅.

She insisted I had an MRI done, now they are quite an experience.  I went in feet 1st (defo better than head first) I’m really not good in confined spaces so my heart was racing.  The cd they put on stopped working after 3 songs, so that 45 minutes felt more like 3 hours 🙈.

Results were in and it confirmed I had Osteoarthritis in my lower back, hips and therasics (osteoarthritis).  It is the wear and tear type, and because of my crazy pregnancy she felt this was probably the reason behind this.  I was given some high dose anti-inflammatory drugs, and thing’s got better.

These drugs, sadly have lots of side effects and one of them was to increase anxiety.  It did just that.  My intention was to not look at the side effect list, because if I look at those you can guarantee I will have every side effect within the hour 😂.  These pill’s nearly drove me nuts with the worst level of anxiety.  It was the doctor who suggested the link, and I’m so glad he did.

New meds, from the same group have helped, and this batch of pills hasn’t given me the increased anxiety, so that’s a bonus 👌.

Apparently I have a gene called HLA-B27.  This has been detected by my regular blood tests.  This gene, along with my crazy tiredness (fatigue), which I normally put down to my mad life.  As well as the continued bouts of pain, they have now linked and diagnosed me with a condition called ‘Spondyloarthritis’.

“Spondyloarthritis is an autoimmune disease It is a severe form of chronic inflammatory arthritis, in which patients’ “adaptive” immune cells can attack the body’s joints, producing inflammation and structural changes.”

So there it is.  I kinda knew something not that great was going on.  Reading all about it, it all made perfect sense.  I’ve lived a very busy full life these past 4 years with this pain.  And in no way do I want this diagnosis to define who I am, but man it’s so hard on the tough day’s to not sink into a dark place.  I’ve had some real bouts of ‘flare up’s’ they call them.

These are basically crap day’s.  It’s when every joint aches, my legs feel like lead, and I just want to go to bed.  Obviously this is totally not an option, so I grit my teeth and push through it, these are hard day’s 😓.

Medication wise I’m going on something new in September.  Some self administration injections that I’m told are more of a long-term option.  It’s a bit scary, but possibly the answer to lessen these ‘flare up’s’.  I simply need to have less pain, with my busy day’s.

I hate the thought of becoming the ‘ill woman with all the kids’.  I’m scared of this diagnosis I can’t lie.  I want to wake up and it all be gone.  I’m sure any person living with a chronic condition feels just the same though.  When someone sits you down and says “this is a life long condition that won’t go away and may get worse” it really throws your world upside down.

I’ve got plans lot’s of them.  It can’t and won’t define me.  It’s crazy, I’ve seen it with my Mom living with lupus, another awful immune system related disease.  She has bad days, sadly lots of them, but on her good days, man she’s so much more alive, so much more appreciative of good health.

It’s those good health day’s we all take for granted.  When you can live a day with no pain you really are a winner, like everything in life “you don’t know how good it is until it’s gone”.

My bad pain days are not the best, but there are so many things I can do to help.  Some days I completely forget I’ve got this condition, other days it comes back to remind me.  Part of the journey is accepting what’s going on, and that isn’t the easiest but I am trying.

So there it is a little explanation to the ‘bad back’.  I have added a little more info in on this condition, as knowledge is power 👌~.

To those fighting the daily pain battle, stay strong and live those good health day’s to the max 💟.

Ankylosing Spondylitis

The symptoms of AS can vary, but usually involve:

  • back pain and stiffness
  • pain and swelling in other parts of the body – caused by inflammation of the joints (arthritis) and inflammation where a tendon joins a bone (enthesitis)
  • extreme tiredness (fatigue)

pain

 

 

 

 

 

 

2 Replies to “Pain you won’t define me 💟”

  1. Stel you have explained your illness so clearly and I am so proud of your attitude towards how you try to deal with it. This condition will not define who you are love, as you’re a fabulous, daughter, wife and Mom and we adore you. Here’s to more pain free days sweetheart X

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