April 1, 2021
I’m a newbie to the AxSpA family. As much as I wouldn’t wish this on others, I embrace being in this family.
My discussion topic is pain. Really, the question is how does everyone deal with the day to day pain and the flares?
April 10, 2021
Pain medicine messes up my stomach. Have IBS. Smoke MJ! It is debilitating. Had it since my childhood. Getting really bad again. Stress is really bad on me. Cannot help it. It finds me.
April 12, 2021
April 19, 2021
Rebecca Cappello Moderator
April 9, 2021
Hi David M. -- I really understand your day to day pain and flares, and I sympathize. Struggling with peripheral and axial spondyloarthritis, I have had so much full body pain on a daily basis that it is really hard to manage. It has stopped me in my tracks and acutely affected my life course. It takes quite a toll on my physical and mental faculties. I do not go to Pain Management. But, I've had spine and joint surgery, joint injections, and nerve ablations that have helped some. Over a period of about 5 years, I have trialed 4 biologics - 2 injections and 2 infusion - and DMARDs. The 4th biologic is currently working on reducing symptoms. I found this infusion helps ease the pain intensity and fatigue by about 50-80%, where pain is then manageable with other oral medication. When I have an exceptionally hard time and can't get to the other side of a SpA flare, I use 2-3 different prescriptions (Meloxicam - muscle relaxer, diclofenac - anti-inflammatory, and rarely corticosteroids and Ultram) from my rheumatologist to manage, but I find I rarely use them. My therapeutic tools also help immensely. I have a massager, heating pad, Polar Ice Machine/ice packs, capsaicin cream (Capzasin), TENS unit, pain patches, etc. under my bed in a plastic storage box for easy access. The thing with spondyloarthritis is that we are all different and at different stages in our disease that one thing that helps one person may have no effect on another. In sharing, my hope is that one of these treatments will be effective for you. Be well. Rebecca ( AxialSpondyloarthritis.com community moderator and contributor)
Julie Vallortigara Moderator
April 9, 2021
This is an interesting question.
I have learnt to manage my pain by attending self management programmes for people with AxSpa and also for other chronic diseases. I think having the opportunity to discuss this topic with a group of people living with chronic pain, was very useful to hear how others are living with pain and coping. Whilst we all live with some degree of pain, we experience it differently and so we cope in different ways.
During these programmes we discussed with healthcare professionals, either a clinical team with expertise won AxSpa, or at another occasion we approached the pain management with a psychologist and a physiotherapist. The bottom line is the management of my pain is a combination of approaches based on my discussions with rheumatologists, nurses, therapists and what I learnt in these programmes.
In terms of medication, I take paracetamol every day for the pain and honestly it works. It's the safest drug to take, and taking it regularly helps me to control my pain level. At night, I take a medication for nerve pain, it helps with my sleep so I get better rest and I feel less in pain the next day. The more tired I am, the more in pain I am, so I have made changes to get good quality sleep.
Them regular exercise and looking after my mental health are key to keep my level of daily pain down. That means I exercise every day, and I make sure I don't get stressed or anxious, and I have enough relaxing time / fun / happy time with laughs and entertainment. I believe in the holistic approach to manage my condition, it works for me and I feel empowered by being able to help myself.
I hope it helps. I think finding a place where you can talk about your pain is important.
So maybe going to a pain clinic if you could have the chance to discuss this with the clinical team could still be useful?
April 5, 2021
The response I got when asking my Rheumatologist, was to refer me to Pain Management.
For me, this is not an option as I need intermittent pain medication. I’ve never heard of a pain clinic that didn’t require you to need pain medication on a daily basis.
For me, dealing with AxSpA is enough without adding a potential narcotic addition too.
There has to be a better answer. -David