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  1. #1
    The Black Knight Domino's Avatar
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    Question Chronic Pain and Inflammation Management

    I have a condition called ankylosing spondylitis. It's auto-immune, genetically inherited (in my case), and I carry a rare blood marker called HLA-B27 that is connected to my diagnosis. I've always had problems, but the full-press onset was around age 19 or 20.

    In short, I deal with a great amount of body pain, anemia, weight loss, poor sleep and problems with my nervous system, all of which can erupt suddenly with little warning. My pain is at its worst when I'm dealing with hormone shifts during the month.

    I'm vegan, take vitamins (D, C, magnesium, probiotics, etc), eat gluten-free, and try to stay physically active to strengthen my core and circulation (reducing painful muscle and vein spasms). I take NSAIDs only when I absolutely can't do without them. I've cut out almost all omega 6 oils and other inflammatory agents from my diet, and am omega 3 and 9 intensive. I take anti-spasmodics and a medication to shut down the extra pain receptors that my body overmanufactures.

    I do a lot for myself, but I'm still miserable. Has anyone tried anything like MSM or DHEA, or magnets? Does anyone else have problems with pain or an inflammatory illness? I need some suggestions.
    eNFJ 4w3 sx/so 468 tritype
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  2. #2
    As Long As It Takes.... Redbone's Avatar
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    I'm sorry. That sucks Domino. Most of the cases of AS I have seen are with men. Do you have any other autoimmune conditions?

    Anyway, I have rheumatoid arthritis. I've been dx'd for 2 years now and it's really starting to take a toll. I've dealt with chronic pain before because I also have early-onset osteoarthritis (from joint laxity with Ehlers-Danlos syndrome) but it was just more of an annoyance. I wasn't prepared for the kick-ass pain of RA. And pretty much all the other stuff you listed as well. Since autoimmune conditions often get lonely, I also have Grave's disease and vitiligo.

    I take it you are reluctant to try any DMARDs or TNF inhibitors? I took MTX before I lost my insurance. No way can I afford the TNF-inhibitors (though I did try taking Wellbutrin as a "substitute" one). I don't want to add to the coffers of the greedy pharmaceutical industry anyway.

    Diet wise sounds good for you. What about fatty acids? Do you get flax seed or flax seed oil? Would you be open to eating fish for the fatty acids?

    PM if you want to really get in depth. I used to work in laboratory medicine and I'll be going back to school for epidemiology. I love to talk about this subject--from a scientific and patient/human POV.

    Edit: Duh...I just re-read your post. I saw the omega-3. There's some evidence that only eating the fish is effective with omega-3. The studies came from babies who had been breastfeed with Mamas taking supplements versus eating fish. Only the babies with the fish-flavored breastmilk showed clear benefits of omega-3. I'll have to dig it up and post a link.

  3. #3
    Senior Member ceecee's Avatar
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    I have isthmic spondylolisthesis. In a nutshell, my L5 vertebrae has two small fractures on each side. This causes the vertebra to slip forward and in my case, press on the sciatic nerve root. I can say this pain is excruciating, it radiates down my thigh to my knee then straight down to my foot on the right side. Once I had an MRI and found out what I had, my doctors and I decided not to go the surgery route. It isn't always a helpful procedure and it can make it worse. What did help was PT, regular, weight bearing exercise and abdominal strengthening. Even when I am in pain, after 5 minutes of exercise I feel better and remain feeling better. I take meds only when I need to, maybe a couple times a week now. I have also noticed the pain getting worse with monthly hormone shifts. This is the only time I really have to suck it up and exercise and use more pain meds. It sounds like you are doing the right things, I hope you find something that helps. Chronic pain has the ability to make all of your life suck in no time.
    I like to rock n' roll all night and *part* of every day. I usually have errands... I can only rock from like 1-3.

  4. #4
    The Black Knight Domino's Avatar
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    Red, I'll send you a PM. I've only heard of TNF inhibitors once, and I know nothing about them. NEVER heard of DMARDs. I've also been diagnosed with Reynaud's and Sjogren's syndrome. My father has sleep disruptions as does my mother, and my father shows signs of spondylitis as well.

    Ceecee, what sort of PT and abdominal exercises do you do? My body reacts to exercise either very well or very badly. I have 3 pound weights to help build me up by degrees, and I walk/do isolation exercises.
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  5. #5
    Anew Leaf
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    I am going to ask my nutritionist friend for some ideas on food for you. See if there are some foods naturally in anti-inflammatories that could help a bit.

    I wish I had more information to give you. If I lived close enough I would be baking you pies and cupcakes and knitting you flannel shirts. (They may or may not look like actual shirts... since i cannot knit... but you could perhaps wrap the knitted item around you like a sarong.)

    Some brief spices I know of that help with inflammation:

    Ginger
    Garlic
    Tumeric


  6. #6
    The Black Knight Domino's Avatar
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    Ginger has been a lifesaver. Without it, I would be on anti-nausea medication constantly. I get a little garlic in my diet, but turmeric is absolutely on my list of things to try.
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  7. #7
    Lay the coin on my tongue SilkRoad's Avatar
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    I shouldn't really be butting in as I don't know much on this subject, but would some sort of exercise like Pilates possibly be helpful? What about acupuncture? Just throwing those out there.

    I have a friend who went GF-vegan and it helped her a great deal (she's a few years younger than me, I've known her six years, and she looks younger now than she did five years ago...) but she has a somewhat different set of health issues, I think.

    I hope things will improve soon.
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  8. #8
    Anew Leaf
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    I also found this while doing a little bit of research:

    Foods That Fight Inflammation
    Now, for the fun part: foods to eat more of!
    Foods high in antioxidants are powerful inflammation fighters. Fruits and vegetables are the best source of dietary antioxidants. As a rule of thumb, the more brilliantly colored the produce, the higher the antioxidant content. Berries, melons, citrus fruits, peppers, carrots, winter squash, sweet potatoes, and all the leafy greens are great choices. Go for as much variety as you can to maximize your antioxidant repertoire.
    Eating more fruits and vegetables will also up your fiber intake, which works out perfectly because people who eat more fiber also tend to have less inflammation in their bodies. Beans, legumes, bran, and whole grains are other good fiber sources. That reminds me of an email I got this week from Jackson. He says there’s an old saying in the Philippines, where he lives, that eating legumes makes arthritis worse and wonders whether there’s any truth to this. Jackson, I’ve never seen anything to support this. If anything, arthritis seems to be less common in people who eat a lot of fruits, vegetables, and legumes.
    I talked earlier about cutting back on fried foods and saturated fats. Instead, eat foods that contain healthy monounsaturated fats and omega-3 fatty acids, both of which reduce inflammation in your body. You’ll find these healthy fats in olives, olive oil, avocados, almonds, walnuts, and oily fish, especially salmon, herring, mackerel, and anchovies.
    To answer a question that Andrew recently sent me, taking fish oil in capsule form is an excellent way to get more omega-3 fats into your diet if you don’t care for fish.
    For fresh veggies and fiber, I have a great veggie chili recipe that doesn't use any fat to cook with.


  9. #9
    Senior Member prplchknz's Avatar
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    Quote Originally Posted by Domino View Post
    Ginger has been a lifesaver. Without it, I would be on anti-nausea medication constantly. I get a little garlic in my diet, but turmeric is absolutely on my list of things to try.
    I read in a vegetarian magazine that cayenne is an anti inflammatory as well, and they had a recipe for vegan chilean corn chowder that was amazing
    In no likes experiment.

    that is all

    i dunno what else to say so

  10. #10

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    Hi Domino

    I know you already know I have rheumatoid arthritis so I won't go on about that.

    As far as diet goes (I'm not sure if listing off all my medications would be of any use to you, since they're all prescription meds) I notice I feel the absolute BEST when I cut out sugar from my diet. That means, white, brown, raw, honey, syrup, nectar...you name it. Fructose in fruits and carbohydrates are ok, though.

    I notice an almost immediate inflammatory response when I eat sugar. And I don't know how much of a part of your diet it is now, but maybe this information is at least a little helpful.


    (p.s. mine also gets worse with my monthly hormonal changes...I find it interesting that no formal studies have been done on this correlation).

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