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#519553 - 03/29/19 12:22 PM AS/autoimmune link to mental illness?
Didier Offline
Second_Degree_AS_Kicker

Registered: 01/12/12
Posts: 206
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?


Edited by Didier (03/29/19 12:27 PM)

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#519555 - 03/30/19 04:27 PM Re: AS/autoimmune link to mental illness? [Re: Didier]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 168
Loc: Canada
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.


Edited by Kellybells (03/30/19 04:29 PM)
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#519556 - 03/31/19 07:57 AM Re: AS/autoimmune link to mental illness? [Re: Kellybells]
Didier Offline
Second_Degree_AS_Kicker

Registered: 01/12/12
Posts: 206
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...


Edited by Didier (03/31/19 08:00 AM)

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#519557 - 03/31/19 10:24 AM Re: AS/autoimmune link to mental illness? [Re: Didier]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 168
Loc: Canada
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.
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#519558 - 03/31/19 11:10 AM Re: AS/autoimmune link to mental illness? [Re: Kellybells]
Didier Offline
Second_Degree_AS_Kicker

Registered: 01/12/12
Posts: 206
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.

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#519561 - 04/01/19 04:28 AM Re: AS/autoimmune link to mental illness? [Re: Didier]
Cymro Offline
Active_Member

Registered: 11/01/18
Posts: 55
Originally Posted By Didier


And I agree with the mindfulness being overblown by its promoters.



Mumbo Jumbo and wichcraft I would call it.

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#519563 - 04/02/19 10:02 PM Re: AS/autoimmune link to mental illness? [Re: Didier]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 168
Loc: Canada
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.


Edited by Kellybells (04/02/19 10:29 PM)
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#519564 - 04/03/19 01:36 AM Re: AS/autoimmune link to mental illness? [Re: Didier]
Janclebro Online   content
Member

Registered: 09/26/16
Posts: 46
Loc: Cape Town, South Africa
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!
_________________________
Spondyloarthropathy with symptoms of AS, Sjögrens and fibro. Previously took Celebrex, Methotrexate, Trepiline, Prednisone which seemed to trigger a flare and my illness became much worse. Symptoms now kept mostly under control with NSD, as well as cutting sugar, dairy and yeast and food intolerances. Mostly pain free now and all symptoms massively improved.

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#519613 - 05/03/19 07:50 AM Re: AS/autoimmune link to mental illness? [Re: Janclebro]
Didier Offline
Second_Degree_AS_Kicker

Registered: 01/12/12
Posts: 206
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/


Edited by Didier (05/03/19 07:59 AM)

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#519623 - 05/08/19 02:34 PM Re: AS/autoimmune link to mental illness? [Re: Didier]
Dotyisle Offline


Registered: 03/07/02
Posts: 9431
Loc: Rosario, Argentina
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
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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