What others have said about fibromyalgia and low oxalate

[Guest guest]

Listmates,

A connection of oxalates to fibromyalgia has been suggested by many other

people before I heard about it and also many years before I started our

autism oxalate project. It has been a little awkward scrambling for help

for my daughter while areas that I've been researching for other reasons

seem to have been helping people with fibromyalgia for years.

I have known for many years a gastroenterologist who was really into eating

high oxalate foods, and advocating that people with celiac should eat a lot

of foods that he thought were healthy but they were also high in

oxalate. When I began our autism oxalate project, I called him because I

wanted his commercial laboratory to start offering some testing for us.

(That hasn't happened yet.) but, from this comment referenced on his

website, I see his mind has changed about what people with celiac should

eat. I didn't realize that he also has fibromyalgia and has found the low

oxalate diet helped him tremendously. Please look at the last paragraph on

the slide page immediately below that also says that he found that at least

one other oxalate site was talking about this connection with fibromyalgia.

>http://www.finerhealth.com/Lecture/sld006.html

The Vulvar Pain Foundation is the first place I heard about the low oxalate

diet helping with fibromyalgia, and it has a site here:

http://www.vulvarpainfoundation.org/

Some people with fibromyalgia I've gotten to know from my own internet

group made these comments about how the diet helped their

fibromyalgia: " Going LOD " is shorthand for going on the Low Oxalate Diet.

>I saw your request on the oxalate list for suggestions from people with

>FM who improved on LOD regarding specific experiences to help motivate

>your daughter to go LOD. Sorry, I was very busy at the time and could not

>respond then and will respond here.

>

>Basically, I was diagnosed with CFS and FM around the same time. I

>think it was about 20 years ago. The pain and stiffness in my legs were

>so bad that I was having difficulty walking. I figured out that I had a

>problem with oxalates and removed all high and medium high oxalate foods

>from my diet as per published lists available at the time. I also

>eliminated foods that I had a question about eg pepper. Did they mean

>the spice pepper or bell pepper or hot pepper. I eliminated all. I

>also took 2 to 3 grams of calcium. I assumed the oxalates were causing

>symptoms of tetany that I was experiencing, but I had no idea they were

>causing the pain and stiffness. I stayed on this diet, with no

>infractions at all (I was terrified and desparate), and on the calcium

>for six weeks. Astonishingly, the pain and stiffness disappeared as did

>other symptoms. When I met with my neurologist at six weeks and told

>him about the above, he suggested eating a lot of spinach and see what ha

>ppens to test the hypothesis that oxalates were causing the symptoms.

>So I ate a bowl full of spinach, and within 24 to 48 hours the pain and

>stiffness (as well as other symptoms) returned and cleared up again when

>I went back on the diet.

>

>Once you experience this kind of result, there is no going back to

>oxalates. You don't really need further motivation since it is such a

>vivid demonstration of the effect of oxalates. ... I did try to see early

> on if I could eat just one bite

>of chocolate with huge amounts of calcium at the same time. What I

>learned is that there is no amount of calcium which will counteract the

>negative effects of oxalates in chocolate. What did happen is that

>after a period of time (months? a year?), I stopped experiencing an urge

>for chocolate. The memory of what it tasted like receded until it no

>longer held any power. ...

>It is very painful to me to hear about your daughter's symptoms since I have

>struggled with a lot of the same symptoms, and I know from experience

>that LOD will lead to most of them improving or disappearing altogether.

> I have had further improvements since I joined TLO and went really low

>LOD as per the list. The most significant for me is the return of

>consistently good, deep sleep. That in itself makes any dietary

>sacrifices on LOD well worth the effort. It has changed the quality of

>my life! I did one time try a few mouthfuls of potato at a restaurant,

>and that was enough to make my symptoms worse.

From someone else:

>I recently joined and started LOD in an effort to heal Fibromyalgia. I

>know I introduced myself before, but I wanted to expand on the

>absolutely incredible results I have been getting and the patterns I

>have been noticing in an effort to get the word out to FM sufferers

>that there is an alternative to pain, misery, and more medications.

>When I was diagnosed, the doctor told me that they don't know what

>causes it, it won't kill me, but some days I will feel like I wish it

>would. I have had a miserable thirty years with it, and I am now 46

>years old and feel like I am FINALLY getting a life back. I had

>tonsils removed at 14 that were " encrusted " with tissue, endometriosis

>inside and outside the uterus-hysterectomy at 33, ovarian cysts,

>fibrocystic breast disease since teens, cataracts at 45, chronic

>iritis/uveitis, severe gluten intolerance, casein intolerance, hard

>painful cysts all over my body, rashes, hard little millia (sp?) on

>the skin of my face, hair loss, thin breaking nails, chronic

>diarrhea--miserable list, I know. HOWEVER!!! The first thing to go

>after going on LOD was the fibrocystic breast lumps and hardened chest

>wall--the area became very painful for about three days and then

>gone-lumps all over began disappearing, skin rashes and conditions

>cleared up, nails are getting stronger, dry eyes improving, and I get

>up each morning and walk without feeling like I am walking on glass!!

And another:

>I don't dare go off the diet... I am not sure if the pain I had

> >before was Fibromyalgia or what it was, but I had been hurting almost

> >all over and especially in my feet, heels, hips and hands. When I got

> >up in the morning it felt like I was walking on bloody stumps rather

> >than feet. I actually felt much worse for the first 3 - 4 weeks of

> >the diet and then I turned the tide and each day since then, my pain

> >has been lessening. Now, my heels just barely hurt in the morning

> >(and no pain the rest of the day). The rest of my pain is so far

> >below " normal " for me that I feel like a totally different person. I

> >also have far more energy. I am so happy!!!

Has anyone hear heard about this before? Has it worked for you?

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