My little brother has ankylosing spondylitis. Can you help me and my Mum understand how to help him?
Hi everyone,
I found your wonderful forum today. It’s wonderful to read how supportive and helpful you are to each other.
My little brother has recently been diagnosed with AS. He’s 24 and has had a tough time in recent years with illness. About 5 years ago now he was in hospital for months will ulcerative colitis, and has been in and out occasionally since then. Apparently bowel issues and AS are linked, although that’s just something I’ve heard through my Mum who heard it at the hospital.
He’s fairly active and enjoys going for a walk everyday and playing football. But AS is giving him severe pain to the point where he feels like he can’t exercise some days. It gets him depressed, he’s told me as much and I can also see it in his eyes, which is the most upsetting thing.
He’s only recently been in the hospital again for more problems with his bowel that were being caused by painkillers he had been given to help with the pain from his AS (Naproxen). He’s back home again now but he’s in so much pain. It is breaking my heart to see him this way.
So I’n writing to you all in the hope that you can impart some advice or knowledge to help me, my Mum, and above all my brother navigate this condition.
What helps you? What makes things worse? Do you notice any patterns in your life that cause you flare ups? What things do you do to cope when you’re in pain? What kind of painkillers do you use? How can family members best help someone with AS?
There are probably a million more questions. But any help would be deeply appreciated.
I have fused vertebrae in the centre of my spine. I was diagnosed with AS at age 17. I'm now 43. I've always wondered to myself what may have triggered it. Looking back at my early childhood: Was it swimming around in polluted rivers and creeks diving for golf balls from age 7 to 17? Was it the drinking from small pools of water on my way up to the local garbage tip when I was 9? Was it due to the smoking of cigarettes when I was 10? Was it all the fish and chips that I ate along with all that toxic, inflammatory seed oil when I was 11? Was it due to my severe sunburnt back when I was 12? Was it the landing on my head when my bike flipped over when I was 13? Or was it because I did a backflip on a trampoline and landed on my back on the metal springs?
In my teenage years, I was always getting drunk and stoned. I would smoke 12 cigarettes a day. I had a lot of neck and back pain. I always had to lie on the floor to try and crack my back due to the pain being so intense. I made an appointment to see the rheumatologist hoping he would cure me. He virtually said, "here, take these pills for the rest of your life, now cya." Pfft.
My intuition kicked in. Something didn't seem right about this so-called professional. Because I couldn't see myself relying on pills for the rest of my life that did absolutely nothing to curb the pain, that's when I decided enough is enough but take my health into my own hands. From that day onward, I slowly began removing all the toxins from my diet. I quit smoking. I quit drinking. I stopped drinking the fluoro/chlorinated tap water. I stopped eating GMO junk food and I began doing yoga, etc.
Zoom to 2022. My diet now wholly consists of 1 meal a day of whole raw organic fruit and vegetables from the local farmer's market. Twice a week I will eat a can of Wild Alaskan Sockeye Salmon. I have totally cut out all sugar, bread, dairy and seed oils. I refuse to eat anything that comes in a can or package, knowing just how toxic all that processed food is.
Having implemented all these changes to my diet, my back feels so much better. I no longer require the cracking of my back. The pain in my neck, and the pain that was in the centre of my spine has now disappeared. Spending three hours each day cutting up and preparing my food is no problem. Falling asleep and waking up is no problem. My digestion and bowel movements are running at 100%.
I still do receive much pain in my back if I'm standing up or walking around for extended periods of time. Nowadays, it usually takes a good 5 straight hours on my feet before I begin experiencing any real pain. Weirdly, the pain in my back seems to have shifted away from the spine. The pain is now mainly centred around the hip / kidney area, and upper sides of my back. The pain always disappears once I sit down in my rocking chair, or lay down in bed. If I need painkillers, then I rely on turmeric, black pepper and ginger. I eat it raw every day in a big fat vegetable salad dish.
I find that keeping flexible via yoga is key: For over 20 years, I've been practicing all the yoga techniques from 1 book, called: Essence of Yoga by Michael Volin and Nancy Phelan. I truly believe these yoga techniques have not only improved my AS but has also slowed down the aging process.
In 2018, this seborrheic dermatitis, this rash on my face and neck suddenly hit me from out of nowhere. My body also feels like it's burning up. I'm not sure if this rash and burning sensation is related to AS or Wi-Fi from the cell tower down the road. This thing is persistent. It doesn't want to go away no matter what health food I throw at it. I'm forever researching alternative treatments. I'm forever experimenting with my body and trying different foods, herbs and spices to see what works and what doesn't. Having gotten fed up with this rash flaring up, then healing up, then flaring up again, I decided to fast for 20 days. 75% of the rash had disappeared, but then it came back with a vengeance three weeks later once I began eating again. I'm about to begin another fast for 7 or 14 days followed by a lengthy elimination diet. It's quite possible that one of the fruits or vegetables that I'm eating could be in disagreement with my body. I was thinking of breaking the fast and eating nothing but avocados for a week, then eating nothing but broccoli for week 2, followed by each and every other fruit and vegetable that I consume. I'm hoping that by eating nothing but 1 type of food for a whole week may reveal clues to solving this riddle of the Sphinx. They say there's no cure for seborrheic dermatitis. That's bullcrap! I don't believe that!! I will never quit experimenting with my body until I find a cure!!!Hi nightwaver,
I have read you email and it is great that you want to support your brother, it is important that you do not worry too much, I was diagnosed with Anklosing Spondilitis age 21, after having 5 years of pain in my hips and lower back, when I was first diagnosed I had a few months of wondering how I was going to deal with this illness, as I did not know what was ahead of me, eventually I decided I was going to carry on with my life as normal, I would get flare ups from time to time, which interrupted my plans, but I can tell you that I played football both saturday and sundays, and I was age 44 when I stopped playing football, I only gave up then because unfortunately I had a heart attack. I also maintained a good social live going on holiday at least twice a year up until I was sixty five,now with my Anklosing spondilitis effecting my shoulders and neck I have had to give the holidays a miss( I am now 71), I take Humira for the Anklosing Spondilitis
now and for the last nine years, I still manage to go for a 45 minute walk in the local park 3/4 a week.
I have given you my story, and of course people will have different degrees of the ailment, what I am trying to say to your brother keep as active as you can, and try to be positive, as a fellow sufferer I know
it is not easy, but if you can be positive and keep active you can have a good live.
Good luck-Mike
I was diagnosed last year, I'm 38 now, I remember days which would come and go which I dismissed to not having good exercise habits or scoliosis which I have a very mild amount of.
The pain started when I was in my late teens at university, I remember limping around university because of a pain in what I now know is my Sacroiliac joint. It would begin in the centre, spread to the left, go to the right then settle down, this would take approximately 2 weeks or so. I also remember waking up in bed from mid back pain so I would stretch it out by bringing my knees to my chest and leaning forward while in bed then sleep again. It affected my sleep quality but I just got on with things, but if I knew why and tried to do something about it sooner, I think my spine would be in better shape.
Currently my hip and spine at the Sacroiliac joint are fused and my lowest ribs have fused too.
It's good he has been diagnosed early.
Warm showers helped me more in the past than they do now.
I have taken amjevita injections in Cyprus last year and they helped more than anything has in the past but I still had shoulder blade pain near my spine. I was significantly more able to move around with it though.
I'm currently doing mobility training from www.calimove.com to keep strong, mobile and prevent further problems which I think it's helping long term, I'm hoping to find the best way to train so I'm going to see hopefully an instructor about this.
I'm optimistic about my situation so I think that helps, I have always had loving people around me to keep me in a good mood.
Let me know if I can help.It's so nice that you want to help him, my brother's never ever ask how I am. I'm 38 and have AS,been in pain since I was 15. I use a mini trainer to exercise, it's bike pedals you can out in front of a chair and bike while I game or watch a show with a timer for thirty minutes,I do this three times a week. I normally need a cane to walk where my si joints and spine are half fused. Honestly my wife and I vent to about my pain daily and they're amazing. Just listen like you are and keep asking daily if you can help him. You're a very caring person,that's great. My family minus my mom mock me as weak and a wimp. Also, I'm sure he does this but I sleep with ice on both hips nightly. I,also struggle with IBS and other diseases.
