{"id":4724,"date":"2023-04-18T23:31:29","date_gmt":"2023-04-18T23:31:29","guid":{"rendered":"https:\/\/gutheroes.com\/?p=4724"},"modified":"2023-04-26T12:13:04","modified_gmt":"2023-04-26T12:13:04","slug":"melindas-ankylosing-spondylitis-success-story","status":"publish","type":"post","link":"https:\/\/gutheroes.com\/success-stories\/melindas-ankylosing-spondylitis-success-story\/","title":{"rendered":"Melinda\u2019s AS Success Story"},"content":{"rendered":"\r\n
Melinda lives in the South of England, UK. It was 5 years before they received their \u2018official\u2019 ankylosing spondylitis diagnosis. They use a low starch diet to manage their AS and most days they are 95% pain free. \u2699\ufe0f<\/strong> See Melinda’s Wellness Plan here<\/a><\/strong><\/p>\r\n\r\n\r\n\r\n <\/p>\r\n\r\n <\/p>\r\n When did you first start experiencing AS symptoms and what were they?<\/strong><\/p>\r\n\r\n\r\n\r\n\r\n\r\n The pursuit for medical help started with hip pain in one joint about 3 \u00bd years ago, I thought I had a running injury that I could not shift.<\/p>\r\n Looking back I had other symptoms going back a few years before that.<\/p>\r\n 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.<\/p>\r\n\r\n\r\n\r\n\r\n\r\n When did you receive your ‘official’ AS diagnosis?<\/strong><\/p>\r\n\r\n\r\n\r\n Just over a year ago.<\/p>\r\n\r\n Did you test positive for the HLA B-27 gene variant?<\/strong><\/p>\r\n\r\n No, negative.<\/p>\r\n Did you have any blood inflammatory markers tested during your diagnosis journey?<\/strong><\/p>\r\n 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.<\/p>\r\n What was your experience getting a diagnosis?<\/strong><\/p>\r\n 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.<\/p>\r\n 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.<\/p>\r\n 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.<\/p>\r\n How long did your road to diagnosis take once you were \u2018in the system\u2019?<\/strong><\/p>\r\n A year and a half.<\/p>\r\n What has your experience with rheumatologists been like?<\/strong><\/p>\r\n 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.<\/p>\r\n 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.<\/p>\r\n 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.<\/p>\r\n What medications have you tried prior to trying the diet and how effective were they?<\/strong><\/p>\r\n 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.<\/p>\r\n They added omeprazole to my prescription but that did not help, it just made the effects of the Etoracoxib less.<\/p>\r\n 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?<\/strong><\/p>\r\n 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.<\/p>\r\n What was your darkest point with your AS?<\/strong><\/p>\r\n Not being able to pick my youngest child up from his bed in the morning.<\/p>\r\n 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?<\/strong><\/p>\r\n 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.<\/p>\r\n They have not been intense and I’m able to carry on with normal daily activities including exercise.<\/p>\r\n 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.<\/p>\r\n <\/p>\r\n “This is something I could not have done a year ago”<\/em><\/p>\r\n What are your five top Wellness protocols for managing your AS?<\/strong><\/p>\r\n \u2699\ufe0f Low starch diet<\/span><\/strong> – This is the most effective treatment I’ve tried so far.<\/p>\r\n \u2699\ufe0f Exercise<\/span><\/strong> – It really helps even on a bad day.<\/p>\r\n \u2699\ufe0f Keeping active<\/span><\/strong> – This is for my mental health, my life has to be full of activities.<\/p>\r\n \u2699\ufe0f Good sleep<\/span><\/strong> – I try to give myself the best environment for sleep, this includes all above to aid sleep.<\/p>\r\n \u2699\ufe0f Intermittent fasting<\/span><\/strong> – 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.<\/p>\r\n Also looking forward and knowing that AS has a high possibility of being treated and maybe even cured one day in my lifetime.<\/p>\r\n How long did it take before the diet started having an effect?<\/strong><\/p>\r\n I noticed improvement within a few days and had a really good overall response within a couple of weeks<\/p>\r\n What were your biggest challenges with the diet?<\/strong><\/p>\r\n 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.<\/p>\r\n 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.<\/p>\r\n What do you think your loved ones found most challenging about your diagnosis? How did they feel about your diagnosis?<\/strong><\/p>\r\n 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.<\/p>\r\n I think it’s very hard for anyone to understand someone else’s pain especially chronic pain.<\/p>\r\n What did they find most challenging about your diet and wellness protocol?<\/strong><\/p>\r\n Knowing what I can and can’t eat.<\/p>\r\n What helped them?<\/strong><\/p>\r\n I think time help.<\/p>\r\n What would you tell others thinking about trying the diet that you wish you knew now?<\/strong><\/p>\r\n It’s not as difficult or as expensive as you think and there are loads of food options.<\/p>\r\n Most useful resources you\u2019ve come across online<\/strong><\/p>\r\n \ud83d\udd17 The Low\/No Starch group<\/strong><\/a> and \ud83d\udd17 <\/strong>Starch Free Feasting<\/strong><\/a><\/p>\r\n“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.”<\/h2>\r\n\r\n\r\n\r\n\r\n\r\n