How Long Is A Piece Of String?

P_measuring1_0113There are a few different ways to measure AS, X-rays and MRI scans can measure fusion, blood tests can measure the results of inflammation. A range of measurements can check the impairment of functionality on things like turning and bending.

But there’s not always a correlation between them and the effects of AS on the individual. Sometimes people will have a flare even though their inflammation markers are well within the normal range. And vice versa, some people can go through a very active phase of inflammation without experiencing much pain. Fatigue is another one that’s difficult to measure. Are you feeling tired because you’re doing too much, or is it that your AS is more active? What’s your base level of tiredness and sleep patterns?

RNHRDAs I’ve mentioned time and again, everyone’s experience is different. The Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath is a world leader in AS, both treatment and research. They also created the internationally recognised self-measuring scale called the BASDAI (Bath Ankylosing Spondylitis Disease Activity Index). If you’re diagnosed as an Ankylosaur then you’ll become *very* aware of this and its sister questionnaire, the BASFI (Bath Ankylosing Spondylitis Functionality Index).

It’s a 6 question, 1-10 scale where the patient scores their experience of pain, stiffness and fatigue. It’s usually marked on a 10cm line and the scores are totalled before being divided by 5 to give a final score. (The last two questions about stiffness are averaged together before going into the main score, so it’s a 5 question average.) A score below 4 is considered a good indicator that treatment is working.

  • How would you describe the overall level of fatigue/tiredness you have experienced?
  • How would you describe the overall level of AS neck, back or hip pain you have had?
  • How would you describe the overall level of pain/swelling in joints other than neck, back or hips you have had?
  • How would you describe the overall level of discomfort you have had from any areas tender to touch or pressure?
  • How would you describe the overall level of discomfort you have had from the time you wake up?
  • How long does your morning stiffness last from the time you wake up? (The scale for this is 0-2+ hours, with 1 hour at the midpoint.)

My Rheumatologist and specialist nurse don’t just use the BASDAI by itself, they also attach something called the BASFI, the Bath Ankylosing Spondylitis Functional Index. It’s another test that uses a line with a score from 0-10, but it uses ten questions:

Please indicate your level of ability with each of the following activities during the past week. (0 = easy – 10 = impossible.)

  • 12RRouwPutting on your socks or tights without help or aids (e.g. sock aids)?
  • Bending forward from the waist to pick up a pen from the floor without an aid
  • Reaching up to a high shelf without help or aids (e.g. helping hand)?
  • Getting up out of an armless dining room chair without using your hands or any other help?
  • Getting up off the floor without any help from lying on your back?
  • Standing unsupported for 10 minutes without discomfort?
  • Climbing 12-15 steps without using a handrail or walking aid (one foot on each step)?
  • Looking over your shoulder without turning your body?
  • Doing physically demanding activities (e.g. physiotherapy exercises, gardening or sports)?
  • Doing a full day activities whether it be at home or work?

Unfortunately, because I’m Bent, some of these definitely fall into the “impossible” category (bending forward from the waist, reaching a high shelf, looking over your shoulder). Although there was one that I thought would be impossible for anyone, until my partner proved me wrong. (It turns out that normal people can get out of a chair without using their hands!)

It’s the BASFI that saddens me, as it’s a biannual reminder of all the things that I can’t do. I usually concentrate on the things that I can (and do) do. (Yes, I just said doo doo!)

Dog and pupBut this is the sort of thing that I was writing about when I tried to write about Defining Disability. Left untreated and undiagnosed, AS can lead to disabilities, permanent changes to your ability to live a normal life without making adjustments.

So, remember to keep your eyes open for the signs, in yourself and others. If you’re concerned, speak to your doctor. Your spine is kinda important and you only have one of them, so even if it’s not AS (and I truly hope it isn’t), getting tested and seeking advice can only be of benefit to you.

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2 thoughts on “How Long Is A Piece Of String?

  1. My specialist last week just wanted to give me Alendronic Acid, Sulphasuladine or a steroid injection. I refused all. I wish they would look at the diet and lifestyle as well as drugs!! 😕

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    1. I’m sorry that you’re not having a great time with your Rheumatologist Allotmental. Have you asked about the diet and lifestyle changes that you’re considering? I’ve found that my Rheumatology team are really open to giving me genuine feedback on my suggestions. They tell me what they’ve seen work for people and what doesn’t. They also start with Physio as the front line treatment before moving on to the medication.

      I’d also suggest not just writing off the very idea of medication – there’s a reason that the NHS is prepared to pay for these treatments, they’re scientifically proven to work. And if you get the right treatment early enough, hopefully you’ll be able to avoid things like immunosuppressants and further fusion (if you’ve already started to fuse). But it doesn’t work by itself – and that’s why the Physiotherapies are so important – I particularly like Hydrotherapy (the physio version).

      Good luck in finding the right treatment for you though – Hopefully you’ll keep us up to date with how it goes!

      Liked by 1 person

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