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#520160 - 05/06/20 11:59 AM AS Flare I think, maybe Covid?
sBrian Offline
Second_Degree_AS_Kicker

Registered: 12/05/05
Posts: 214
Hi I have not posted here in a long while.

I have not had much in the way of flares for many years. My Sacroiliac gets very painful a few times a year for a day or two....very hard to sit down and hard to get up, but always gets better on its own. My back flares also, often tied to activity (often golf). Stretching and Naproxen and not golfing usually heals me up within a week. I go to a great physical therapist who always seems to find the right stretches and exercises to get me back to 100%.

I realize that my AS is nothing compared to many people on here. When I had my first flare I was literally incapacitated for a few months. My wife was bathing, dressing and bringing food to me for a month or two. Since that time I have not experienced anything close to that, but I do realize how bad it can be.

Recently I was sick March/April for 3 weeks. For a few days it was like a flu with body aches, high fever, one single incidence of diarrhea, headache, weak and tired. I experienced a loss of taste and appetite and lost 15 pounds very quickly. (according to a nasal swab test it was not Covid, and it was not influenza). I am not sure I believe that. For one it was 10 days after the severe symptoms and for all I know the virus could have been gone by then. I don't know. I was only very sick for about 3 days. The rest of the time it was a low grade fever, chest pain, weak/tired and headaches.

I have never had a fever for more than 4 days in my life and this was 22 days of fever, with chest pain.

I have my doubts as to the negative Covid swab being accurate.

That said I was eating extremely healthy with things that boost the immune system. I was taking 3-4 grams of Vit C daily (500 mg about every 2-3 hours). If I was not sick that amount of Vit C would just give me loose bowels and very yellow urine, but it did neither. I ate garlic, drank fresh ginger tea. Took Vit D plus went outside for mid day sun (in Texas) 5-10 minutes a day. Took Magnesium, B-complex, Zinc, Lysine and Turmeric. While I was sickest I also took BHT and Berberine.

I ate kimchi daily. Pastured eggs and quality sardines where/are my main source of protein. I ate every color vegetable daily. Flax oil on fresh greens when I could get them, otherwise made salad of whatever produce was available. I did twice daily 15 minute deep breathing exercise with steam from a vaporizer.

I got over being sick. Perhaps some of the immune boosting of my diet helped.

As I was getting better I started to get back pain. My AS has been very in control for a long time and I thought perhaps my breathing exercises aggravated it. I was on a couch twisting to my left to a vaporizer on the end table, while taking a very deep breath with very hard forced exhales (like yoga breathing exhales) that lasted 20-30 seconds per exhale.

Oh by the way if anyone finds they are having lung symptoms and want to breathe steam, I took a water bottle and cut the bottom off of it which made a very useful "steam funnel" to inhale the steam much more easily.

It is my lower right back that is in pain and I spent about 2 weeks trying to simply stretch and take daily walks. It has gotten far worse to the point of struggling to move around, especially dressing showering, etc.

I started to take Naproxen which I was trying to avoid because of the immune dampening properties. So now I am about 5 days into Naproxen. The pain was cut in half by the NSAID but it just is seeming to stay at this level and not improve. For obvious reasons I would really like to be off the NSAID at this time.

I have a few things I am wondering.

Does anyone believe that my immune boosting diet/supplements fired up my immune system and led to a flare?

Could the sickness have also led to a flare? There have been a few instances over the last 20 years where it seems that an illness has led to a flare.

Does it sound like my right sacroiliac is the root of this pain?
I get sacro flares regularly but they feel different than this. They tend to be in the hip and buttocks mostly. usually only one side goes at a time. Now the pain is deep in my lower back on the right side maybe about L-1 or L-2.

My back flares are usually in the middle, thoracic area. When I get lumbar pain it usually is short duration (a day or two) and gets better quickly with stretching and ice packs. It is often a diffuse pain of the entire lower back

I apologize for the long post but would welcome any thoughts or ideas that anyone has either about what this is, how i got it, and most importantly how best to get out of it.

Thanks, Brian


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#520161 - 05/06/20 03:05 PM Re: AS Flare I think, maybe Covid? [Re: sBrian]
Dotyisle Offline


Registered: 03/07/02
Posts: 9511
Loc: Rosario, Argentina
Hell Brian,

Wow.. 22 days with fever, that is a bit alarming, I guess I would have my suspicions as well for Covid-19 as well even if tested negative.

Hopefully you have fully recovered.

Regarding your questions.

Quote:
Does anyone believe that my immune boosting diet/supplements fired up my immune system and led to a flare?


Possibly.. I have read from posters in the past that have experienced issues due to boosting immune system. Cannot say if that is your case.

Quote:
Could the sickness have also led to a flare?


I am no expert in Covid-19 and what is possible.. but again from years of posting here recall posts from individuals that believe their AS symptoms started with some sort of bug (intestinal variety) or sickness.

Covid-19 is respiratory from my understanding... so would not appear to be tied. But if having the virus kicked the immune system into high gear... maybe it is having some difficulty turning off again and staying active yet. I have read that traces of virus stay in system even after feeling better for some time... so maybe immune system still active because of that.

Quote:
Does it sound like my right sacroiliac is the root of this pain?


Your description of the SI pain is right on with what I experienced... hip and buttocks and one side at a time. In my case it was left first with major flare... and then years afterwards always the right side and since very rare the left side.

When I was originally diagnosed with AS way back in mid 90s and I had all the right hip AS pain... there was fusion in left hip, but not much present yet in the right hip.

Hopefully you can come back out of the flare.

When I have flares... I become more strict with diet again and will take anti-inflammatory to try and get back out. But I rarely have flares now that last more than a day as I have found treatment protocol that works for me.

Best to you Brian

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#520162 - 05/06/20 03:27 PM Re: AS Flare I think, maybe Covid? [Re: sBrian]
sBrian Offline
Second_Degree_AS_Kicker

Registered: 12/05/05
Posts: 214
Thanks Tim. Yes my initial diagnosis was a very severe uveitis 20 years ago which in a week caused me to need lens replacement surgery (although I had plantar fasciitis in the late 1980's). However the severe onset of my arthritis was in 2004 which I later found to be caused by an amoeba I picked up on a missionary trip to Honduras way out in the jungle.

About the Sacro pain. The current pain I have is more like going to the right from near L1 in the lumbar spine. Do you think that could still involve the sacro, or is it likely just the spine?

I realize this is a questions for a rheumy but seeing a Doc now is not very doable.


Edited by sBrian (05/06/20 04:20 PM)

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#520165 - 05/08/20 10:14 AM Re: AS Flare I think, maybe Covid? [Re: sBrian]
Dotyisle Offline


Registered: 03/07/02
Posts: 9511
Loc: Rosario, Argentina
Hello Brian,

Cannot say if SI or low back as not experiencing the pain.

In my case for the SI pain.. I could not sleep on that side at night. First with my left SI pain, had to sleep all night on my right hip. Slept against the wall with pillow in front of me so would not go on to my back or stomach... if I did, hip would be very inflamed in morning and I had difficulty getting out of bed and walking until a hot extended shower.

Couple of years later got to my right hip and was reversed.. could only sleep on my left side all night. Very uncomfortable and would have to get up some during night not being able to change positions in bed without great deal of pain in morning.

With my right hip even during day wrong movement could be very painful, for me my right hip pain was much more worse than my left hip and think had to do with old basketball injury I had many years prior.

My low back pain was a lot of stiffness in mornings typically or from overdoing it and then having pain.. the pain would feel like someone hit me in back with a bat. After many years the pain could be in middle back as well.

I have x-ray evidence in the SIs and low back... that helped with my diagnosis.

Actually I was finally diagnosed when I had my right hip pain. At that time they saw the left SI with fusion and some in low back but none in the right hip yet. But at that time my left hip felt good so I was surprised.

So if your question is if you may have some fusion in SI joints with feeling OK now.. maybe you have if experienced such pain prior.

Best,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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