The nerve-cells that guide the danger impulse to the brain get oversensitive: that is called sensitation. That just means that those cells give more “warning signs” than normal when “danger” is seen. The brain interprets that as “very tired” and “always tired”. Alarms go off: “rest, rest, rest!!!” BUT rest doesn't help here and now anymore!!

Damping the danger stimuli: endorphines.

Our body is capable to produce its own painkiller: endorphin. It damps the signal lines betwee danger (pain) and brain. They are also called happy-hormones, or body made morphine. The problem is that the effect wears off after about 40 minutes. Inflammation speeds up the decline of

endorphins. Lately it has become clear that endorphins have a significant influence on activation or suppression of immune-cells.

Doing exercises doubles the blood-values of endorphine. In Fybromyalgy patients they saw a much higher level in people who did work-outs compared to those who rested.

Yoga and meditation had similar results.

Get out of the vicious circle; go detox.

Bad news: there is NO miracle pill nor cure against fatigue in AS. Maybe you have discovered yourself that certain meds, massage, sauna, food... etc.. have some effect. Be glad it does, but it will be short term, sorry for that bad news. That doesn't mean you have to stop, no way! They are not obsolete, but supportive in a way. But it does mean we need a long-term plan.

We need to de-sensitise, meaning we have to make the nerve-cells less responsive for “danger”.

One way is gradual movement therapy.

Professor DR. Jo Nijs is a world pioneer for this concept. See his site: WWW.PAININMOTION.BE

By means of very good coaching from a physical therapist, who is familiar with this method it is possible to get out of the fatigue spiral.... by moving. But success doesn't come easy! The therapy has to be well dosed, and built up gradually.

It can be done in 6 steps:

step1: determine your present base level, the start position. See a qualified therapist.

Step 2: set your target, and be realistic. Don't set as target to climb mount Everest.

Step 3: draw up an exercise plan, make sure it is a personalized one, drawn up with the help of a professional therapist. Also set a time to reach your goals, and start at a low level.

Step 4: Work by that clock, not by the fatigue. That calls for a great dose of discipline and motivation. The physical therapist should not react when you start puffing, moaning or complaining. Are you feeling dead tired? Ignore it until the clock says: stop. This has to be done daily, without interruption. After a few days you'll notice the exercises are done with less effort. And that you can do more than thought at first. It's not just the body you're working on, but also giving yourself a mental boost. That's how top athletes work: they also use the clock, and not how they feel to train.

Step 5: evaluation of the obtained level. Feedback time with the therapist to see what improvements you have made in those weeks. Whether or not you've reached the set goals, the target is not a priority. It is important what you, and the therapist have learned the past weeks. It's not a competition! Not a battle, not a fight against your body. Do not get disappointed or discouraged if that first attempt was not very successful.

Step 6: redefine your target. When your first goal is accomplished, you can aim higher.

Writing this was very easy, compared to doing it! It will ask lots of efforts, pain, and perseverance.

But in the end you'll be rewarded. BUT, the fatigue will not vanish completely, and never will. Sorry for that, but it just is part of our lives, want it or not. But it will make life better, more bearable. You get a hold on fatigue, can control it better, deal with it. But doing these exercises is hard, difficult, tiresome?

And of course, a sudden flare-up will happen, and it will hurt you. It will kick you in the guts and leave you KO. Back to square one? No!! By now you've built up a reserve, and have maybe reached step 6 of the first stage. Yes.. there are many stages. It's a never ending story.

My conclusion:

-Fatigue often comes hand in hand with AS. In a serious life altering way, and on and off; You never know when it will hit you.

-There is too little awareness for this symptom, not only by the general public, but also by caretakers, doctors, therapists.

-It is something that strongly affects the quality of our life. Depression is often a result.

-pseudo diagnosis and saying it is not so bad don't help us.

-staying in motion, moving is has been the corner stone for treating AS. Therefor VVSA has made up a fantastic exercise booklet. You can exercise individually or even better: in group, so you can stimulate each other, have fun, socialize.

-Treating chronic fatigue with medication? Sorry folks... a patch on a wooden leg. Drinking lots of coffee, red bull, … sorry won't help either. Sensitation, personalized gradual moving-technique? Will help to improve your general condition. But it's not a miracle.

As I've written in part 1: it is indeed between the ears.... but literally between the ears: it's our brain-damage.

I do hope this will be of any help. I do hope others will read this too, share it. I hope our friends, relatives, co-workers, loved ones.... will read this! Fatigue is not something we make up to be able to rest, or hang in the couch. It kills us, it hurts us, we hate it! Please accept this: AS is with us, for the rest of our lives, or until they find a cure. Fatigue and AS go together side-by-side. Instead of looking down on us, people with fatigue... help us! Understanding and accepting that this fatigue is part of our life would be a great help! We don't yawn because we're bored (well, not always) but because... yep. We don't walk around like zombies because we love it, but... yep. We don't isolate ourselves because we love to be alone... we're just tired of being sick and tired. We've said “no” to many invitations to dinner parties, get togethers... with pain in our heart... Not because we hate you, or hate being happy... No, just because... yep AS. We need understanding, hugs, warmth, most of all by those the closest to us. It is hard, very hard, impossible almost for a healthy person to understand how we feel.... Please don't ever , ever, never say: “I know how it feels, I've had a hangover, and felt tired all day”.;; And don't dare to say “why don't you do some effort, the fatigue will go away by itself if you try harder”. NO

Years ago I got this kind of advice. My Response? Go F***k your advice! Moving, exercises??? Are you outta ya mind?? This thing hurts like hell, and I should move more, walk more? No way José! Instead I took it easy, so the pain would not get worse. Too bad though.. the pain was always present. Sometimes so hard that I just wanted to give in. Not that I wanted to die, I just didn't want to live anymore. At least not this life. Am I better? Well... sometimes.. you know what I mean.

Do I move, or exercise? Yes. I walk the dog daily, work in the garden, paint the house, do all chores myself, mob, clean, just stay active.

And do you want to hear a secret? On days that I don't do anything at all, or just sit and read... I'm in more pain, and feel tired, and fall asleep every time. When I go to work (I work part-time) I never feel tired, when I work in the garden, or clean the house or car... I feel tired at the beginning, and have pain... But both feelings go away when doing that stuff. Do they stay away? No, alas not. But I know I can beat the fatigue, by getting over that threshold. Sometimes it's too high, and I simply need to rest. But, what the heck, I won't feel guilty anymore. It just how it is. Accept it!

Hey, when I first read this article, before I translated it … My reaction was.. No, not that advise once again!! But folks, friends, fellow AS gang members... It IS a contradiction: AS causes pain that immobilizes you, and to beat that you have to get mobile! It's like though saying to a diabetic: eat more sugar! Or to someone with a painful toe: hit it with a hammer, and the pain will go away.

To be less in pain, to be lesser tired... We need to do what causes pain and some fatigue. Weird?

But.. I will survive this. My garden is my therapy. It doesn't look as nice as other gardens, but I love it. So is my daughter also my therapist, and my car.

And writing? Just love to keep busy, I was even extremely active before AS. And flexible... Sigh?? I could put my legs in my neck, not that there's much demand for people who can do so on the market..

%d comments
  • Thank you!!! These are good articles! I was diagnosed first with MS...but it turned out it was AS. My drs, I know, were never aware of the connection.

  • It was kinda new to me too... AS and MS. But nothing surprises me anymore concerning AS.

  • They thought I had MS as well. Even after the AS diagnosis the rheumatologist was still testing me for MS.

  • Interesting. I've been having MS like symptoms after starting tnf blockers for AS. I think there's a real connection!

  • We all have to start somewhere, great reading and I just might get off the couch today. Thank you

  • I can share another aspect of the question: "Does the brain get damaged due to AS?" And the answer is yes.

    Pain itself can cause damage to the nerves of the brain and the rest of the nervous system. In my case, I have Intractable Pain and Intractable Migraine from the damage that my AS related pain has done to my nervous system. The result is basically having constant, untreatable pain that most often is dialed out to 10/10 and can't variate between the difference between a stubbled toe and a completely shattered foot. That stress to the body is damaging to organs and vessels after having constant spikes of high blood pressure. It damages the heart and causes a multitude of other issues.

    When my brain MRI from 2 years ago was taken through an image processor, you could literally see the areas of my brain that were inflamed and scarred, but it was impossible to see without the render.

    Sometimes the pain we feel? It's not our fault. No matter how many years of PT and physical fitness I fought for - there is zero that can be done to counter this pain because it's the result of permanent damage FROM pain.

  • Oh I'm just too tired to read it all in one sitting

  • Thanks for translating. I've read there are a few ways to raise endorphins. Chocolate. Acupuncture. Sex. Exercise. LDN.

  • Hope many others read this, also those who are not sick, and think we fake this.

  • Oh.. just imagine how tired I was just writing this

  • I hope so too. If they wish to argue it, they can take it up with a University of Michigan neurologist of 40+ years experience. He was the one who diagnosed me and explained how my pain actually damaged my brain permanently.

  • Love chocolate, don't like needles, can't remember, do exercises, have no idea what LDN is.....

  • Not too many rheumatologists see the whole picture. They just focus on what they know... joints and such. I bet many would say AS can't hurt the brain. Goes to show you, we, really need a good doctor to follow us. Or people like you, and others who gather info and share it. Though I was hesitant to post this.... what if the info I used was "fake news"? BTW, if you live in Michigan... isn't it bedtime? Don't forget the good night rest to recuperate

  • Thank you Tony.

    This is very helpful.

    Sending you cheer from South Australia.

  • LDN is low dose naltrexone. I'm taking it for AS and is used in autoimmune conditions

  • Chocolate can trigger flares in those of us with gut inflammation.

  • For some reason is never caused me an issue and I'm sensitive. I stick to 80% cacao and only have small amounts though.

  • Small amounts is a good idea

  • It puts me in a lot of pain.

  • I started cycling this year and I feel so much better

  • I need to learn more about gut inflammation. Please upload any advice and knowledge you have. Thank you!

  • Good job! I am about to buy myself a bike with electric support.

  • You will love it I started doing 3 miles slowly I increased to 30 sometimes 40 I feel good about myself

  • Last year I did something really stupid. Our town is linked to a town in France. So to celebrate this, town council went to that town by bus. We went along, and as asked took our bikes with us. We did a 50 km bicycle tour there! Uphill, downhill... without any preporation and on my old bike with faulty gears. I was a wreck! But glad I did it.... but never again.

  • That's impressive

  • Or stupid? My legs were hurting like hell, not to mention the part of the body where the back changes it's name into... and my bike has a female sadle. .. not good for some male parts to be caught there for 50 km.