A long sleep and no pain – I call that a win!
Original post:I must have slept for about 12 hours today. After several nights of extra short sleeps, this long one felt good.
To my utter delight, I did not wake up in pain as I often do when I long sleep. Furthermore, I woke up with minimal stiffness altogether. That’s a massive win when living with axSpA.
Today is a good day to be productive with the few hours that are left.
#AxSpA #goodDay #longSleepEin weiterer Meilenstein ist erreicht! Ich habe einen Arzt gefunden, der erstmals die Puzzlesteine an Diagnosen, Befunden und Beschwerden zu einem Gesamtbild zusammenfügen konnte. Damit ergibt sich ein Bild, das ziemlich stimmig und plausibel erklärt, warum passiert, was passiert und vor allem, welche Behandlungsansätze vielversprechend sind. Ich bin erleichtert!
#Steißbein
#Coccygodynie
#morbusbechterew
#axSPA
#schmerzpatient
#chronischeschmerzen
Diabetes and AxSpA
I was browsing some scientific papers (as one does) and found a study linking AxSpA and diabetes.
The meta-analysis and narrative review including more than 65 000 participants reporting around 4500 cases of diabetes from 23 observational studies presents an overall picture on the high prevalence of diabetes in people with axSpA. We also found that people with axSpA compared to those without have an increased risk of developing diabetes.
Make of that what you will.
Charting my condition
Today, I added a new Google chart to my blog where I track stiffness, pain, and other health indicators of AxSpA. Today’s charting is Stiffness Over Time (both max and average).
Thank you, Dr Ben Davies
Dr Ben Davies taught me a few movement things that fight against the worst aspect of a flare – neck tension that induces migraine, which can bring vomiting and other complications.
I have always treated it with pills and patience, but I am already in the process of downgrading a bad day into an okay day.
An AxSpA paper (link)
Filed in AxSpA
On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden We conducted six semi-structured focus groups with 26 axSpA patients ...
AxSpA: What is a flair (up)?
AxSpA flares, it turns out, are not well understood. It is widely recognised that AxSpA sufferers have periods where symptoms are worse. However, how and when the flair is expressed seems to vary from one person to another.
That’s not to say no work has been done on this topic. A lot of study and investigation has been going on but it is proving tricky to pin down. Here’s the NASS guide to flairs.
A flare can be defined as the acute worsening of symptoms. Flares are generally thought to be due to increased activity of the underlying disease although this cannot always be demonstrated objectively. In rheumatoid arthritis and systemic lupus erythematosus flares are accompanied by joint swelling, rashes, or lab abnormalities. Patients with peripheral spondyloarthritis may similarly develop swollen joints during a flare. On the other hand, the major symptoms of axial inflammation in spondyloarthritis (back pain, stiffness, fatigue) are experienced and cannot be assessed by physical examination. Inflammatory markers in the blood may be normal. This can make it difficult to clearly attribute a temporary worsening of symptoms to increased inflammatory activity. Magnetic resonance imaging (MRI) can demonstrate inflammation in the joints or spine. However, there are issues with access, cost and sensitivity that make it impractical to perform MRI scans on every spondyloarthritis patient with worsening of symptoms.
Examining Flares in Spondyloarthritis, Joerg Ermann, MD, Spondylistis Assosiation of America
In a paper titled “Understanding flare in axial spondyloarthritis: novel insights from daily self-reported flare experience” (available as a PDF here), Rosemarie Barnett, Stanley Ng, and Raj Sengupta reported “two clusters of participants were identified with distinct flare experiences but similar baseline clinical characteristics”. If I understood the paper correctly, people either had shorter but more severe flares or longer but relatively milder flares.
The study found that flares lasted a mean average of 4.3 days (about 4 days, 7ish hours), taking place every 35 days or so.
The longer flare sufferers had more smokers, and the short but more intense sufferers had fewer.
Due to the sample size, the authors of the paper recommend not attaching too much significance to the data.
TL;DR: Flares happen; we’re not sure why.
Managing flares
I’m no expert (aside from living with AxSpA flares), so you may want to grab the free booklet about flares from NASS.
Due to the variety of ways flares can manifest, there is no one-size-fits-all solution to flare management.
Most advice suggests the following:
A note on heat and cold: Dr Ben Davies says that real heat or cold is generally better than chemical (creams and sprays) if you can get it. (Ben was our lead physio at the RUH program I was recently enrolled on).
I found a mix of anti-inflammatories, pain medication, heat/cold (depending on location and symptom), and CBD helps for me. There’s no strong evidence that CBD is (or is not) useful in this regard. I cannot tell you if CBD is right for anyone else other than me. That’s because I am not a doctor.
I also find that a nice cup of tea and a sit-down with some low-intensity activity can be a good way to get through it. I doubt it does much other than take my mind off of things for a bit. Still, that’s not a bad thing.
I can confirm that stretches help with some symptoms – mostly muscle stiffness, aches, and general tension. I’m pretty sure I saw off two or three flares while doing physio. I have a newfound respect for the power of therapeutic movement and stretching.
As for fatigue and other symptoms, I find that pills followed by chilling out is what I need to do. Maybe with a nice cuppa. I’m biased here as I think Tea Is Brill.
The best advice I can offer is to talk with your doctor or rheumatology team for advice tailored to your needs.
Talk with friends and family about your flare – do not isolate yourself
I found a paper – “The incidence of depression and anxiety in patients with ankylosing spondylitis: a systematic review and meta-analysis” – which suggests a link between flares (and general AxSpA) and increased chances of depression. As someone who fights depression on the regular, I can tell you that a flare makes it that much harder.
It also seems that AxSpA causes increased stress and issues for those in work, while being unemployed with AxSpA adds mental pressure that could lead to depression.
Results show significant differences between employed and unemployed patients with axSpA. Employed patients with axSpA endure many problems at work related to their condition, whereas unemployed patients present worse disease outcomes associated with greater psychological distress.
Sleep can be a problem when fighting of depression. This can be a problem as AxSpA can make getting good sleep harder. A paper – “Sleep behaviour differs in women and men with psoriatic arthritis and axial spondyloarthritis with impact on quality of life and depressive symptoms” – found that AxSpA can cause “abnormal sleep behaviour with symptoms of insomnia and a reduced quality of life with significant differences between male and female patients”.
If depression is kicking your arse (especially during a flare), please reach out and seek help. You are not alone. I know it sucks, which is why support is so important.
Over to you
If you are an AxSpA sufferer, I’d love to hear how you handle flare-ups. Do you have a flare-up plan? Do you medicate or do you use other techniques? What do you do during a flair? How bad are your flares? Do you find stretches help?
Do you think I missed anything?
Anything else to add?
General thoughts, feelings, or reactions. Whatever you have to say, I’d like to hear it.
National Axial Spondyloarthritis Society (link)
The National Axial Spondyloarthritis Society is a great resource for those with AxSpA and related conditions (like me).
I had two weeks of AxSpA physio on the NHS
I arrived home from two weeks of AxSpA physio last night. The course is run by the NHS. Which means, for those without universal health care, it was free at the point of use. (We pay NI as a mild tax (if you earn enough) that funds the NHS.)
The program was fantastic. It improved all of my AxSpA symptoms and gave me the stretching, exercise, and knowledge tools to keep improving them.
The head of the program is Professor Raj Sengupta, a well-regarded and leading expert in the field. Our physio for many of our sessions was Dr Ben Davies. Ben is an absolute legend – he taught me a lot.
Without the NHS, this powerful program and these fine teachers would have been forever out of my reach. I am eternally grateful for teams running and supporting the program, the program itself, and the NHS which enabled me to partake in this life-changing fortnight.
Reblog: I had two weeks of AxSpA physio on the NHS
This post was first published on my social node.
I arrived home from two weeks of AxSpA physio last night. The course is run by the NHS. Which means, for those without universal health care, it was free at the point of use. (We pay NI as a mild tax (if you earn enough) that funds the NHS.)
The program was fantastic. It improved all of my AxSpA symptoms and gave me the stretching, exercise, and knowledge tools to keep improving them.
The head of the program is Professor Raj Sengupta, a well-regarded and leading expert in the field. Our physio for many of our sessions was Dr Ben Davies. Ben is an absolute legend – he taught me a lot.
Without the NHS, this powerful program and these fine teachers would have been forever out of my reach. I am eternally grateful for teams running and supporting the program, the program itself, and the NHS which enabled me to partake in this life-changing fortnight.
Physio note: I started my day off with some shoulder and spinal stretches.
Matt
die Waldatmende
Matt
My Big Fat Arse