Melinda lives in the South of England, UK. It was 5 years before they received their ‘official’ ankylosing spondylitis diagnosis. They use a low starch diet to manage their AS and most days they are 95% pain free. ⚙️ See Melinda’s Wellness Plan here
“I’m able to live a normal, active life again with no broken sleep. I can keep up with my children and enjoy eating fresh, healthy food.”
When did you first start experiencing AS symptoms and what were they?
The pursuit for medical help started with hip pain in one joint about 3 ½ years ago, I thought I had a running injury that I could not shift.
Looking back I had other symptoms going back a few years before that.
I would have bouts of intense fatigue that my doctor put down to having children which was frustrating. I had bowel problems that came up with nothing when investigated. I had skin rashes that got shrugged off by dermatologists as nothing.
When did you receive your ‘official’ AS diagnosis?
Just over a year ago.
Did you test positive for the HLA B-27 gene variant?
Did you have any blood inflammatory markers tested during your diagnosis journey?
I had the tests but my markers were always very low. I presume this was down to the high level of exercise I was doing.
What was your experience getting a diagnosis?
I feel I was very lucky as I had a great physiotherapist who understood that there was more to my hip pain than she could help with.
She referred me to a rheumatologist after about a year or so of trying different exercises. I was not expecting anything from the rheumatologist and was floored by the diagnosis.
It was a double edged sword, on the one side I had confirmation that is was not going mad and could now put a name on what was happening to my body. On the other hand I had a fairly serious diagnosis that was lifelong.
How long did your road to diagnosis take once you were ‘in the system’?
A year and a half.
What has your experience with rheumatologists been like?
Some positives for me are the access, I can ring any time, get seen as often as I feel the need. I have access to physios that specialise in AS.
The negatives are their lack of diversity, I’m alone in my diet journey in terms of medical professionals. They are medicine focused and offer no nutritional help.
I use CBD oil very occasionally when I am having a bad day and have asked if I can get it on prescription but am met with a blank stare and a “no we don’t prescribe that here”. Consultants in the NHS are allowed to prescribe CBD oil for chronic pain but my rheumatologist refuses.
What medications have you tried prior to trying the diet and how effective were they?
I was given Etoracoxib 90mg at diagnosis which worked really well for me until I started getting side effects about a month in. I got severe abdominal pain and started having heart palpitations.
They added omeprazole to my prescription but that did not help, it just made the effects of the Etoracoxib less.
Before you started managing your ankylosing spondylitis, typically how many times a year would you go in flare and how long did they tend to last?
For the year building up to me changing my diet I was fairly constantly in flare, everything was extremely difficult, playing with my kids, dressing them (and myself). Going to work was hard as I do a physical job.
What was your darkest point with your AS?
Not being able to pick my youngest child up from his bed in the morning.
Now that you are following your own AS wellness plan, typically how many times a year do you go and flare and how long do they tend to last?
I feel I’m still at the beginning of my journey but I would say my flares are now self inflicted and happen when I try a new food or eat something I shouldn’t.
They have not been intense and I’m able to carry on with normal daily activities including exercise.
As long as I remove the food that was the trigger I find the flares very short lived and last a couple of days at most. I do tend to sleep more in that time and eat very simply and may take some CBD oil if I need to.
“This is something I could not have done a year ago”
What are your five top Wellness protocols for managing your AS?
⚙️ Low starch diet – This is the most effective treatment I’ve tried so far.
⚙️ Exercise – It really helps even on a bad day.
⚙️ Keeping active – This is for my mental health, my life has to be full of activities.
⚙️ Good sleep – I try to give myself the best environment for sleep, this includes all above to aid sleep.
⚙️ Intermittent fasting – I fast every now and then and love it. It helps me loads with energy and pain. I just drink water and try to fast from 8pm until lunch the next day. I do that 1 – 2 times a week and more if in flare. I take 0 calories in that time.
Also looking forward and knowing that AS has a high possibility of being treated and maybe even cured one day in my lifetime.
How long did it take before the diet started having an effect?
I noticed improvement within a few days and had a really good overall response within a couple of weeks
What were your biggest challenges with the diet?
The biggest challenge was being in a space for long enough where I could have food to hand that was safe for me to eat.
I had to make sure I was going to start the diet and have a good length of time to get it established before I had to deal with being away from home for the weekend for example.
What do you think your loved ones found most challenging about your diagnosis? How did they feel about your diagnosis?
My family don’t really understand the diagnosis and it’s implications. They have seen me at my worst and can see the change my diet has made to my life.
I think it’s very hard for anyone to understand someone else’s pain especially chronic pain.
What did they find most challenging about your diet and wellness protocol?
Knowing what I can and can’t eat.
What helped them?
I think time help.
What would you tell others thinking about trying the diet that you wish you knew now?
It’s not as difficult or as expensive as you think and there are loads of food options.
Most useful resources you’ve come across online
Anything else you’d like to share with your fellow AStronauts?
There is no harm in trying a low starch diet.
You can find Melinda’s Wellness Plan here: ⚙️ See Melinda’s Wellness Plan here