I am 38M with AS diagnosis for the last 10 years. I am extremely thankful that most of the time I am in remission and take no meds for the disease, though I'll get flare ups of arthritis, lasting anywhere from a day to a few months at a time, sometimes with iritis too. I also have mild UC, asthma, Raynauds but again mostly in remission. I get my ESR, CRP, etc. checked twice annually and it usually looks fine, and I have very little sign of bone growth on my spine.

I do wonder though if I have underlying disease activity that isn't marked by any arthritis or inflammation, but that comes out in other ways mentally.

Periodically throughout the year I have days where I wake up with mild arthritis and feeling extremely exhausted and anxious. There is no obvious reason for feeling exhausted. I haven't exercised or worked excessively. But no amount of coffee can fix me. I work in executive leadership and whereas most days I feel very confident, get a lot done, love interacting with people - on these days I am none of those things, I am just crippled with exhaustion and panic attacks.

This happens often from October-March probably linked to seasonal affective disorder we have in Canada, but it also happens even during our beautifully warm and sunny summers. Almost like bipolar as the experience is so different on a good day vs. a bad day. While I am so grateful to be highly functional most of the time, it is so nerve wracking to have these unpredictable days throughout each month where I feel like death has warmed over me, but with no significant physical pain to speak of, just a bit enough that I know it's there.

I think traditionally it was assumed that AS sufferers would have a certain amount of mental illness from the constant pain and debilitation in their lives. But increasingly I am reading studies that the link is due to gut health, vitamin D and inflammation, rather than a direct cause of psychological stress from arthritis pain. ,

NSD didn't do anything for me and I tried quite religiously for a year. Having really really strong amounts of coffee seems to help somewhat.

I'm wondering - anyone have a similar experience to what I am describing? And what do you do to solve it?

What you're describing sounds a lot like disconnection, which is a common way to experience periodic anxiety. Feels like you're not quite in your body and that the world is a bit 'unreal'. The body gets tense from an underlying but unrecognized sense of fear, which builds up and bursts out in a serious bout of anxiety that typically feels out of the blue.

It's very common in people who experience chronic pain. It's because we often try to tune out the fluctuations in pain so we can get on with things. But the price of that is we are less in tune with our bodies and our feelings. And with the pain usually comes fear...fear that we might worsen, never improve, etc. But because we're busy ignoring the pain so we can get on with things, we often don't notice the fear, and as it builds we get really tense without realizing it, and our bodies tighten and "squeeze" out our sense of embodiment, leading to feelings of panic and anxiety.

The fix is pretty straightforward - do a body scan. It's a step by step method of reconnecting to the parts of your body. This is the first step of a meditation, and all you really need (though coming to grips with underlying fear is also a good idea). Read about it online or find a meditation app that includes a guided body scan. It can take a few tries to get the hang of it, but once you do you'll feel much better. (Ever notice you feel better after exercise? It has the same effect, helping us reconnect to our physical selves....But exercise isn't always practical for people with painful arthritis). There's also a ton of writing and research about mindfulness meditation and chronic pain, but i've never found the need for more than a simple body scan.

Next time this happens and you make it through to the other side, think back to how you were feeling in the day or two before it hit. Very likely you will have felt vaguely uneasy and uncomfortable. If you can learn to spot these early signs, ypu can body scan sooner and possibly avoid the full blown anxiety altogether.

Good luck! I hope you are able to find some relief.

Thank you! I have done a lot of body scan and mindfulness practice with the help of a psychologist, and indeed I would find things like mild pain, fatigue, tension, anxious thoughts, etc. in the days leading up to a panic attack and more often than not it would correlate with AS pain and fatigue as well. What I found challenging though is what to do with that. Like, the first step is certainly having more awareness of your thoughts and the sensations in your body, but ultimately if you need to carry on anyway, what good is recognizing those things? I found the value of mindfulness, CBT and so forth to ultimately be marginal unless you're in a position to actively make changes to your lifestyle. Especially relative to the time you need to put into it...

Lol, I'm with you...who has the time? I've tried the full mindfulness practice and couldn't stick to it and frankly, didn't find it necessary. (My two cents: people who make money teaching these things like to make it all A Very Big Deal, much bigger than it needs to be.)

That's why I specifically recommended body scanning - it's easy and very effective, and really is all that's needed. Takes 5 minutes, 7 if I use an app, 10 if I'm feeling especially tense. I only do it when I feel the unease starting, then 2x a day when it's bad. Stops the anxiety dead in its tracks, or at least greatly abates it. Not a big time commitment, and certainly not a lifestyle change.

But if that still isn't for you, there's always benzodiazepines. Highly effective, though they make you sleepy and are potentially habit-forming.

OK thank you for the clarification! I appreciate it and very glad you have found a formula that works. And I agree with the mindfulness being overblown by its promoters.

Though I've found body scans to be somewhat helpful at times, I can't say that even daily body scans have ever stopped my anxiety in its tracks especially in the winter. I can do them and then still have a panic attack minutes later if presented in an anxiety provoking situation, or even sometimes if not. My next step is benzodiazepines but I suspect due to the side effects they may inhibit my ability to work just as much as the anxiety does.

Mumbo Jumbo and wichcraft I would call it.

To be clear, the ability to stop anxiety in its tracks took a lot of practice! Body scanning is like any other exercise - took me awhile to get good at it.

Benzos do make you sleepy, so there is that, but they work really well. Used sparingly and in small amounts (e.g. half doses) they can really help, even when you need to stay alert. (There's a trend among docs to prescribe anti-depressants like Wellbutrin and Paxil instead of benzos for anxiety....I have known several people who have done this, all without any success)

One last thing I forgot to mention: halfway between exercise and a body scan is the body squeeze. If I am feeling particularly anxious but don't have time or space for a body scan (e.g. I'm at work) I will do 3-4 full body "squeezes" - basically tense up every muscle from head to toe tight as I can for a few seconds. It is surprisingly useful for getting me back 'in' and takes almost no time.

Hi Didier, there is a medically accepted connection between the gut and the brain, called the gut-brain axis. It is very likely that the symptoms you describe are originating in your gut. This is especially likely because you describe some gut symptoms, and also because you're not in constant pain (if you were, that could naturally account for certain mental symptoms.) I suffered severe depression, as well as bouts of anxiety, before I got the gut thing under some degree of control. Your symptoms may be related to gut inflammation, a food intolerance or some sort of dysbiosis, for example a candida infection, and there are probably numerous other possibilities.

A good place to start would be to take notes and see if you can make any connections between what you eat and these symptoms, or even to see whether any other physical symptoms get worse while the mental ones flare. Good supplements to take are a good multivitamin including lots of Bs, and omega 3 (good for both gut and brain health).

I'm glad it's not all the time, but it sounds awful when it occurs. Good luck getting to the bottom of it!

I ended up quitting my job with no backup plan because I found it to be overwhelming for a number of reasons (not a good fit for my skills, company having financial troubles, etc.) But one of the main reasons is because I was routinely having constant fatigue and anxiety that I was having to medicate with strong coffee and alcohol to feel like myself and get through the day, and didn't want to perpetuate that unhealthy cycle.

I assumed the fatigue and anxiety were due to the job as well as my seasonal affective disorder, but I wonder how much of that fatigue and anxiety are actually due to ankylosing spondylitis? It had not really occurred to me originally because I don't have much arthritis pain, but even now that I am off work and the weather is getting better, I still have the same fatigue, anxiety, clouded thinking, feeling uncharacteristically emotional, etc.

As of this morning I decided to start up celebrex again. Celebrex is something I associate with arthritis pain and since I have only minor physical pain I never take celebrex, but this time I'm taking it to see if it might help my mental state. Perhaps even a biologic could help?

So far no one on this forum seems to have a similar experience to me so it continues to be a bit of a mystery what is at the root of my health troubles, and doctors don't seem to know. GP says he's stumped, rheumatologist says bc I have minimal physical pain my BASDI score is low and therefore I'm in remission, and psychologist suggests doing yoga and getting a low-stress job. They mean well but not that helpful!

I did come across this study about how most AS folks that have work interruption or go on disability do so because of the fatigue, not the arthritis or lack of mobility as is commonly assumed:
https://ankylosingspondylitisnews.com/20...ty-study-shows/

Hello Didier,

Nice to meet you.. starting to check in again here.

What is the similar experience you mention... the fatigue? Fatigue is something very common with AS and I have seen mentioned often here over the years I was more active posting here.

My father would complain of it, and I experienced it as well at times. Even when I did not necessarily experience much pain. My assumption is body was busy battling the disease that it zapped my energy... almost like flu/fever fatigue feeling.

I have not had the heavy fatigue feeling for some time now as my AS is much better.

On a similar note... I have very little AS pain, but began to experience numbness/tingling/coldness in my extremities. I became alarmed had it checked out and doctor confirmed the disease had got in my nervous system. An injection and some NSAIDs for some time calmed down the symptoms and they never returned (now over 15 years ago).

Best to you on finding answers.

Tim

We must always be wary of any such symptoms as it could mean permanent nerve damage (Neuropathy) or Cauda Equina Syndrome. It is something that must be checked out by an experienced doctor as late treatment is seldom of much use. Nerve damage whether caused by Cauda Equina Syndrome or by any other cause is rare but need urgent treatment. Check out Cauda Equina Syndrome on Google.

Fatigue yes and along with it heavy anxiety (shaky voice, shortness of breath, some trembling, easily upset/irritable). It sounds like the fatigue is a very common experience, the anxiety not so much.

My anxiety cleared up a great deal the last week since taking celebrex (NSAID) although the fatigue remains.

Glad to hear your AS and the relate fatigue have been better for some time Tim. If I recall when I used to post here more frequently a few years ago you had had success with NSD so I suppose that was the main driver behind it?

Hello Didier,

Yes for some time now NSD is backbone of my treatment. But I also eat a lot of probiotic food and typically do a fast most Fridays and do not eat until dinner at night (and only salad and some fruit) to give my GI a day off from food. In my case I believe my AS is very much tied to my GI health.

Prior to NSD I had a lot of success with azulfadine for 7 years... but had to discontinue due to side effects.

Best to you.

Tim

I had another bout of inflammation. SI joint pain for a few hours that made it painful to walk, but then the pain went away on its own with no meds, leaving only a heavy inflammation feeling with fatigue and anxiety that was lasting for days. Very tired, anxious, and my thinking patterns changed pretty dramatically from positive to negative. The last two days for example, though I had little pain, I was very tired and just mentally blocked, unable to think clearly or 'activate' physically. I laid down for 48 hours, tired, sad and anxious.

Finally I decided to take 2 celebrex and quite suddenly my energy came back, so much so that I found it hard to even go to sleep because I was feeling so positive with lots of energy.

This morning when I got up I had a lot of the celebrex side effects - dizziness, tinnitus, cold hands, bit of blood in the stool. Yet I didn't care that much because I also had this energy and almost euphoria. Logically I need to lay off the celebrex now to avoid any more side effects but wow what a difference.

Both my rheum and GP say celebrex is intended for managing pain symptoms, and that taking it primarily for energy and mood is unusual and not advised. Perhaps it's a placebo, but the effects are pretty consistent and dramatic.

Maybe this was also related to the weather getting better today - here in Canada it's been very cold and dark for May and today seems to have warmed up.

Hi Didier,
Stress and A.S are directly linked for me.
Worry, anxiety or stress and depression bring on A.S (with a two month delay).
With management it goes away. CBT, meditation, reading and youtube to find out whats going on all help.
I have not found a way to get rid of fatigue, I just live with it. This alone gives me sadness as it limits my life and have to live around it.
I tried NSD for over a year without any result.
So now I refuse to accept stress as it makes my life not worth living.