Sore joints can be caused by other things too...

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Keren
Keren Member Posts: 29
edited 9. Jun 2014, 23:55 in Living with Arthritis archive
Hi guys,

I posted on here a very long time ago, and thought I'd give you an update on where I'm at - this might prove helpful for somebody else who has struggled with painful joints and can't get a satisfying diagnosis.

I was diagnosed with OA by a rheumatologist in 2010 due to symmetrical finger and thumb arthritis. OA seems to be the default diagnosis if there is no swelling and no inflammatory markers/seropositive markers in blood tests. My 'OA' continued progressing pretty swiftly, with both wrists and all of my toes joining in the pain party.

At the beginning of 2013, I had a massive flare-up of all of my tendon insertion points all over my body (called enthesitis), as well as terrible tendonitis and bursitis in knees, hips, achilles, accompanied with a debilitating neck/low back/SI joint pain which was miserable. I was popping naproxen at the maximum dosage just to get through the day. Again, blood tests came back clear. I had a completely fruitless referral to a rheumatologist where she declared me 'healthy'(!), and my poor GP was tearing his hair out as it was very obvious I wasn't!

After he got really desperate, he started box-ticking on blood tests - testing me for anything and everything. He's since told me that that's against protocol - they're supposed to come up with possible diagnoses and then test, but I'm very grateful he did what he did as one blood test came back positive for an antibody against my liver. It turns out I have an autoimmune disease called Primary Billiary Cirrhosis which is what's causing my small joint pain and is very typical of liver related arthritis. This was a pretty bad shock - PBC is incurable at the moment, and all you can hope for is the milder type that doesn't progress as quickly. If it's the bad kind, I may need a liver transplant. Hohum. Time will tell.

It still didn't explain my widespread enthesitis, tendonitis and neck/low back/SI joint pain, but I'd done a great deal of research online since then and had my own working hypothesis that I had some kind of spondyloarthritis. Interestingly, I'm also in the process of a referral to a dermatologist for suspected psoriasis which may put in place another piece of the puzzle.

I've spent a lot of time on the kickas.org forum and there are many other people out there with a similar story to mine. Unfortunately - even though plenty of leading rheumatologists warn otherwise - many rheumatology departments diagnose purely on blood test results and as spondyloarthritis sometimes presents as a disease of avascular (bloodless) structures, inflammation often doesn't show up in blood tests.

On the kickas forum, there are many people with AS and other related types of spondyloarthritis using a low starch diet with considerable success. I'd previously dismissed it as placebo effect/woowoo, but out of desperation, and because I didn't want to inflict NSAIDs on my liver any longer (it's already having to cope with enough), I decided to try it. My low back pain died off within a few days, my tendonitis and enthesitis slowly healed, and a year later, I'm in brilliant shape. I've had to resign myself to a lifetime free of cake/bread/potatoes/most processed food, which hasn't been easy, but as soon as I cheat and eat something I shouldn't, I immediately flare up. It's a strong incentive to stick with it. I'm absolutely convinced that diet is incredibly important for whatever undiagnosed inflammatory thing it is I have, and I'm also very grateful that I had a strong incentive to give it a go - it really has given me my life back.

Anyway, that's me.

Keren

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  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Hello again keren. Crikey, you've been through the mill!

    I hadn't heard of PBC and had to look it up. It seems it's rare and can often go undiagnosed until something else is being checked out. Well done to your GP for being so thorough.

    That's great news about the low starch diet being so helpful. It can't be easy (I'd miss my bread and potatoes) but I think we'd all be better off without processed 'food'. The ingredients of most bear little resemblance to anything nutritious. Congratulations on your perseverance. I hope you continue to reap the benefits.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jen9432
    jen9432 Bots Posts: 37
    edited 30. Nov -1, 00:00
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    Keren,
    I've heard your story a lot. I think it is lazy to just assume it is OA, because it kinda looks like it. I had a similar experience to you only my symptoms were brought on by a pesticide poisoning. My joints swelled and even briused and were exremely painful. It started in my toes and gradually moved up my ankes, knees, hips and lower back. My GP also kept ordering tests and more tests, but couldn't find anything wrong. She kind of gave up and told me to stay on my nsaids and pain meds for 6 more weeks and then come back and they would test again. Meanwhile, I could barely walk and I couldn't work. While I was waiting and freaking out I saw a Naturopath. She changed my diet (no dairy, no carbs, no meat) and gave me some detoxifying tablets. Within 3 weeks I was back to my normal self. No pain, no swelling and no briusing. She was the one who figured out it was some kind of poison going through my blood stream and sat in my joints. My GP didn't believe it and told me she didn't believe in Naturopathy. Our medical system is not perfect, I am glad I have a choice on who I wish to see, although much more expensive to see a Naturopath than a free visit to the GP or to a specialists. It's been 8 years since and I have not had any recurring symptoms and I feel great.
  • Keren
    Keren Member Posts: 29
    edited 30. Nov -1, 00:00
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    Hi Jen, what kind of arthritis do you have? The diet your naturopath put you on sounds kinda like a low starch diet to me! Are you still on it?

    I'm actually pretty wary of alternative medicine, though I'm willing to accept that naturopaths are probably better than doctors at treating holistically and actually listening to their patients. I'm just a bit of a skeptic about most things and it takes evidence to convince me.

    That's one reason why I was so dubious about this diet (aside from being extremely attached to potato crisps!!). But there have been several studies on the diet conducted by Prof. Alan Ebringer, and there is a LOT of anecdotal evidence FWIW that it works.
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Karen this is very good of you to share this, after 4 years of oa I am beginning to see how complex all this can be,,and how other things can cause joint pain.
    Love
    Barbara
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    How interesting xx I have swelling and bruising in joints, is this normal. ?? Xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Swelling and bruising? It is common for me, the swelling is excess fluid and the easy bruising is caused by the sulph. Are your swollen joints also hot to the touch? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    Yes they are DD ??? But not heat all the time ?
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Hi Keren,

    I suppose, as the saying goes; "When you hear hoofbeats, think of horses not zebras" is not always true, sometimes it it zebras.

    I wish you the best of luck with the diet and pleased it's working for you.
  • mzjones
    mzjones Bots Posts: 38
    edited 30. Nov -1, 00:00
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    I have also heard that a low carb diet can help with inflammation, but I hardly ever heard it recommended for OA. When I've seen it, it has been for autommune diseases. I personally do a low carb diet to deal with digestion issues and headaches. It is definitely interesting to read that it *may* have helped with some inflammation of the joints. Have you checked to make sure you don't have other issues going on making your arthritis worse? Just a thought...