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#516504 01/26/17 11:06 PM
Joined: Jan 2017
Posts: 1
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Kiisu Offline OP
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Hello wise members of Kickas.

I'm a 38 year old man and have had intermittent joint pain for about 18 months. At the moment none of the doctors I have seen are sure what it is (AS, reactive arthritis, something else?) so I wondered if the symptoms match anything anyone has experienced.

Basically, I get a sore spine (lower back and neck) and the joint between the upper and lower part of the sternum. The strange thing is that the symptoms come and go but with no relationship to timer of day but rather depending on the transit of food through my intestines. Put bluntly, defaecating makes the pain get better. My intestines haven't worked properly for years which I have now learned was due to fructose malabsorption and regular bouts of SIBO. I had three rounds of antibiotics to clear the SIBO and around that time the joint pain started. I have googled and googled but I can't find any reported of honey pain that is directly connected to the passage of food!

Along the way way, I've tried NSAIDS including cerecoxib, but after alleviating the pain for an hour or so, the pain comes back but much, much worse than before. Indeed when I was talking NSAIDS I also had finger joint pain, heel pain and it wrecks my digestion which is ropey at the best of times. In fact, there is often an inverse relationship between the speed of transit through my guts and joint pain. Have diarrhoea? No joint pain. Have joint pain? No diarrhoea. .

I've many, many tests. I am HLA-B27 negative, RF factor negative, have normal parathyroid function, normal CSR, no radiological signs (i've had X-ray, CT, MRI and UK ultrasound scans of my joints), capsule endoscopy, colonoscopy etc. All tests are normal. Because of these negative tests the doctors does not consider it that likely to be AS despite the similarity of the joints involved.

So the doctor just says wait and see, and that he doesn't knows what it is. He argues against starting any long term treatment because the symptoms are not constant and he is hopeful that talking probiotics will help in the long term. As he and I both think that after taking there antibiotics to treat the SIBO about 2years, I knackered my microbiome. Perhaps a bacteria like klebsiella for the chance to take hold or perhaps the altered biome is messing up my intestinal barrier. Taking 3 Japanese probiotics (I'm in Japan) seemed to holder the symptoms down to a level where I can get on with my life more or less and has got ride of the brain fog and excessive tiredness. Every now and then for unknown reasons I have a flare up.

Does anything of this seem familiar to anyone? I've read that tests are often negative in AS and that diagnosis is often delayed. Is this what early stage AS is like?

Help!

Kiisu #516507 01/27/17 01:20 PM
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Frederick
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Frederick
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Some of your symptoms do suggest early stage A.S. but then A.S. is such a strange erratic complaint that varies over time and from patient to patient.
You seem to have had all the usual examinations and the M.R.I. scan is better than the usual X Ray as X Rays don't usually show signs of A.S. till it is well advanced.
I think the doctor's suggestion that to wait and see is the best thing to do at present.
Sorry that the above advice is of little use to you but that is the way of things with A.S. and there seems to be little evidence at present of what exactly it is that you are suffering from.

Kiisu #517162 05/27/17 05:00 AM
Joined: Sep 2015
Posts: 305
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Fourth_Degree_AS_Kicker
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Hello Kiisu!

Joint complaints, brain fog, tendon problems, back pain, mild burning all over and gut complaints were all my complaints 25 years ago. It took 20 years from that time on to develop clear AS symptoms. But as of two years ago I still have no ankylosing (time for another check). Gut abuse seemed to be the primary trigger in my symptoms all my life without me realizing -- NSAID use, unrecognized food sensitivities, prolonged stress, anything that can disrupt the gut... binge drinking (I've read one case where one night of binge drinking triggered AS)!!

NSAIDs seem bad. The doctor gave you good advice... avoid medicines as much as possible because the side effects are practical guarantees. And as you discovered, avoid NSAIDs in my passionate opinion as they set you up with so many, possibly permanent problems down the road.

Probitoics are good. When I was in remission I was getting high doses with many strains totaling 50 billion live CFUs. How many cfu's do you take a day and what are the major strains?

Malabsorbtion issues are likely since you've described gut issues. Take nutritional supplements (lots of good advice on this website regarding that already.)

L-Glutamine to give the gut its preferred energy to do its job and help it heal might be a benifit.

Digestive enzymes since your gut dysfunction likely is causing unrecognized, low-grade malabsorption and giving microbes extra food since you many not be getting it.

Exercises often!! Nuff said. Tooooo many benefits to list. The thread "How exercise saved my life" is one my bucket list.

Low or No starch diet probably will help. You should swear off alcohol if you haven't already.

Your statement, "Have diarrhea? No joint pain. Have joint pain? No diarrhea" is interesting! I'll see what my observations are of myself. I wouldn't really say I have diarrhea. My stools have the consistency of sticky toothpaste and are full of fecal fat, high in cholesterol (don't know about elastin), and at one time a lot of mucous when there was an obvious infection when using lots of NSAIDs. It has hardly changed in three years. The bad poop preceded the onset of well defined and long-term AS symptoms.

Are you a native to Japan or a new resident? Perhaps your body has been exposed to a large number of new microbes that hopefully your body will make friends with. Eating raw food like Sushi is probably asking for trouble. On the other hand you probably have good access to kimchi and natto which are also good probiotics. In my opinion, using store bought yogurt for therapeutic purposes is not a good idea. It is fine for already healthy people. Perhaps homemade or unprocessed, fresh yogurts are good for therapeutic uses.

Having AS is a lesson in self discipline! Perhaps you were undisciplined in the past and now it is haunting you. Just some dark humour there.

Keep on trucking!

Kevin


HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal

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