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Chronic Pain and Inflammation Management

Domino

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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.
 

Redbone

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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.
 

ceecee

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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.
 

Domino

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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.
 
A

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

:hug:
 

Domino

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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.
 

SilkRoad

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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. :hug:
 
A

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.

:heart:
 

prplchknz

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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.

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
 

funkadelik

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Hi Domino :hug:

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).
 

ceecee

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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.

Laying on my back is the worst position. Because of that, my PT found some that I could do standing. I started with 5 lb dumbells in each hand and worked up to 10 lbs.

http://s3.amazonaws.com/data.tumblr...622941&Signature=5Agx7B73fVC6mgbVygngsL6KZXg=

After a couple months I added the traditional ab moves on my back. I use the elliptical every other day and walking plus some Pilates stretching on my hamstrings.
 

Redbone

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^I've noted the same affect. I don't know if I can really give up all sweets but I do know that I absolutely cannot overindulge without paying a price. I've had some raging inflammation from that. My friend sent me some information about the connection between insulin regulation and sweets (apparently humans were not made to consume large amounts of sweets without overloading the system).

Other people have noticed that they cannot consume chocolate, foods in the nightshade family, and legumes without triggering flares.

I have noticed flares associated with monthly hormonal changes. It was much worse when I was younger and took BCPs. They seem to have eased up a lot more since I switched to progesterone only.

P.S. Let's see those recipes! I'm always game to experimenting with food.
 

Domino

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Yes, please do share recipes if you have them!

I *strongly* limit my sugar intake. I don't handle it well, and what "sweet" I do get is unprocessed sugar cane or fruit/vegetable sugar, like dates. I eat potato and tomato, and haven't eliminated them from my diet because I seem to handle them okay right now. If they truly pose a problem, I *will* cut them out. My diet can get limited quickly and I have to keep certain doors open if they don't immediately or drastically floor me.

I don't eat chocolate. It gives me pounding migraines. *grumble*
 

Lily flower

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magnets are useless

have you tried not eating sugar and high fructose corn syrup? those cause serious problems with some people.
 

Tallulah

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Domino, have you explored macrobiotics? I ask because I've just gone vegan, but I've also been reading about macrobiotics, which Redbone reminded me of when she mentioned the nightshade veggies. It's believed that those trigger or later cause arthritis. Another idea is eating only things that are in season and locally grown--in other words, things that aren't meant for that season or your climate can stress the body. Don't know if there's anything to that, but it might be worth exploring.
 

INA

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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.

Ha. I came here to recommend ginger.
Pineapple, with high amounts of bromelain, is also anti-inflammatory.

If you need more reasons, ginger + pineapple = deliciousness.
 

gromit

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Aw boo I don't know anything about what you have, but I'm happy to share any good/yummy vegetarian or vegan recipes with you. I get a lot of them from that cookbook I was telling you about, but some I just adapt from online or combine or make up as I go. I use lots of butter, but usually that can be replaced with olive oil no problem. :)
 

Stanton Moore

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I take turmeric in capsules most mornings and nights. There is also a commercial supplement called Zyflamend that is a very stong anti-inflammatory. It's available most places supplements are sold. Other than that,I try to eat lots of fruit and vegetables, and get aerobic exercise.
 

Stanton Moore

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[MENTION=1456]Domino[/MENTION]
I was diagnosed with MS in 2000. I started taking turmeric daily in 2004. Since that time, I have had no flair-ups and no progression. I no longer take any meds at all, just turmeric and a few other supplements. So I know it works. I don't know if it will help you with pain, but it can't hurt. If I get nerve pain, I take some, and within 15 minutes, no pain. Works better than anything else I've tried, except exercise. That is really the best.
I run & ride my bike a lot, and I try to go as hard as I can at least once per ride. something about the extra oxygen makes me feel dramatically better. So look into that too.
 
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