Anklosing Spondylitis – Tips to Manage the Pain

I moved to London about five years ago and in my first week there, I had to hobble my sorry-arse to the hospital. Wasn’t quite what I had in mind for the beginning of my new exciting life.

It happened one afternoon when I felt this incredibly deep ache in my butt cheek that radiated down my leg. I’d never felt anything like it and was terrified it was the early stages of some kind of paralysis.

The doctor in Hammersmith Emergency said it was probably the long flight from Sydney or lifting my pack the wrong way. He said he could tell by the way I was sitting that it wasn’t anything serious. He said to me that at 24, no pain is serious (brilliant doc right?). 

So the old wise doc gave me some hardcore painkillers and whaddayaknow? The pain completely disappeared after a few days. Thank fuck that’s all over, I thought to myself. 

Nope! You guessed it. It wasn’t over. For the next two years the same debilitating pain would appear out of nowhere and then disappear into thin-air again. It reoccurred monthly. Sometimes fortnightly. Eventually it was accompanied with severe stiffness between my shoulder blades too. It got so bad I couldn’t roll over in bed at night without crying from the pain.

My friend recommended a guy. A Mr. Not a Dr. After a home deposit in cash was wasted on Mr. Charlaton (chiropractor) three times a week for almost a year, multiple X-rays and CT scans, I finally insisted on an MRI. I was so lucky that the radiologist told me they could see bone marrow odema leaking in my SI joints because the dodgy chiro couldn’t see shit. I gave up on him after that and began the search for a decent rheumatologist.
It takes a while to find a specialist who will listen to you and until you do, you may not get a proper diagnosis. Eventually I found a rheumatologist who knew exactly what to look for. 

  • Family members with inflammatory diseases such as crohns or psoriasis. TICK
  • Positive result to HLA B27 marker in blood test. TICK.
  • Sacroilitis. Inflamed and deteriorated SI joints. TICK.
  • Stiffness that goes away the more you move. TICK.

Anklosing Spondylitis. I finally had a name I still can’t pronounce after years of not knowing. I could finally read forums and manage my disease with drugs and exercise. Wooohooooo problem solved right? Not entirely.

This last week I have had some new pain. It’s partly my fault because I got a bit lax with my drugs and exercise. It’s in my chest and I’m about 95% sure it’s costochondritis (linked to AS). It is really fucking unpleasant, kind of feels like I imagine angina would. Ibuprofen isn’t helping very much. 

I am currently in a very hot bath drinking a beer and writing this blog because nothing else seems to be working. Reading other people’s stories has helped me so much over the years and despite my current mood, I know that I manage my pain quite well usually. 

I want to share with others what has worked for me in managing the arsehole-mother-fucker-beast-of-a-disease, Anklosing Spondylitis.

  • Find a doctor you like and who gives a shit. If you’re doubting your doctor then it’s time to find someone else. Ask a GP you trust to refer you to a good rheumatologist. It takes time to find the right doc. Ditch your dodgy chiro.
  • SWIMMING. Oh my god. If you can be fucked, swimming is the absolute best medicine. I am currently lacking motivation but for a while there I was religious about freestyle and breaststroke and I was seriously pain free. I was going almost every day. It moves your whole body and there is no impact. Please try swimming before you give up all hope. Even if you get in a heated pool and stretch your whole body and do a half-arsed doggy paddle for 20 minutes, I guarantee it will help. Try using flippers too.
  • MOVE. I know it’s the last thing you feel like doing but if you dance like a freak, stretch your body and wiggle about in weird ways while you have a hot shower, you will feel better. Not ideal when you’re trying to sleep but sometimes it’s a good time filler while you wait for the pain-killers to kick in.
  • Heat. Hot water bottles, wheat bags, hot bath, hot shower… Get those stiff joints warm!
  • Tiger balm, deep heat, Chinese oils… I love those burny ointments. Get someone to rub them into your sore spots. The smell also relaxes me.
  • Voltaren gel. This has helped me sometimes. Get the expensive one that has anti-inflammatory stuff that absorbs through skin.
  • Epsom salts. These bath salts are really cheap at supermarkets and chemists and they contain magnesium. Pour it in a hot bath or soak your feet in some. It relaxes your muscles when they get all spasmy.
  • Tumeric. Mix with some milk and knock it back because it’s a brilliant anti-inflammatory. Or just start eating curries if that’s your thing.
  • Ibuprofen with codeine (nurofen plus) just don’t get addicted and try other stuff too. Don’t just sleep and take drugs like these because you’ll get other health problems. *Cough* depression *cough* obesity.
  • Enbrel. If you’re like me and your diagnosis is on the worse end of the scale AND you have an amazing rheumy who wants to help you, then you might be a candidate for these amazing bio drugs. The Australian gov helps some patients to pay for them. Ask your rheumatologist. I am supposed to inject myself in the leg with these once a week but sometimes I forget because I often forget I have the disease these days. They change your blood to stop inflammation. THEY ARE AMAZING.
  • Avoid cold and damp. Every time I go somewhere cold or it’s rainy and wet, I end up feeling the arthy all over again. If you can, try live where it’s warm and sunny.
  • Stretch your butt. There is an amazing stretch I do to ease that horrible ache in the SI joints. Lie on your back and cross one leg so the side of your foot is resting just above your knee. Pull that knee into your chest as far as you can and hold. Switch sides. Favourite stretch.
  • Lastly, try to stay positive. I know, easier said than done. I spent a lot of time being depressed. I remember breaking down to my GP who asked how I was sleeping. He asked if I couldn’t sleep because of the pain or because I was depressed and I sobbed like a maniac. BOTH! I cried hysterically. You will have days that feel like your 29 going on 96 and life is nothing but agony. But there are other days you will be ok. You will be able to feel gratitude for the things in your body that work properly. You’ll be grateful that it’s not cancer and keep moving. You will keep trying new things to feel better.

I hope reading my story helps someone on their AS journey. The dodgy chiro did say one thing to me that I haven’t forgotten. He said no one will ever be able to FEEL your pain. Only you will know what it feels like so it’s up to you to try make it feel better. 

I hope you start to feel better soon. X