fibromyalgia

[veggirl]

I am wondering if there is anyone else out there with Fibromyalgia. I have had it since I was a little kid, and it has been pretty bad for the past couple of years. I was also diagnosed with Trigeminal Neuralgia a year and a half ago, and was really sick for about a year. Luckily it is in remission now.

Does anyone have any advice on the two diseases? I am a vegan, eat very healthy food, and try to exercise on a regular basis (mostly walking).

Thanks!

[veggiebek]

Hi veggirl,
I too have fibromyalgia - it took ages to be diagnosed. have you tried Bowen Therapy - it is really gentle and has helped me heaps
I find too that having magnesium and zinc supplements helps too. Maybe a naturopath could be of help too?
hope you are looking after yourself

[m.t.ness]

Hi veggirl and veggiebek:

I don't have fibromyalgia, but I have Chronic Fatigue Syndrome, which as I'm sure you know is a very similar disease. I was diagnosed about seven years ago, and have been quite ill since. I'm now pretty much disabled - often can't get very far from bed, can't work a regular job, etc. I've tried naturopathy to some degree with little success, although I haven't done as much as I would like as it's proven prohibitively expensive. I also have IBS (possible celiac disease), CVID, interstitital cystitis, and hypothyroidism. A veritable buffet of illness!

What I've always been told about my CFS is that graded, progressive and gentle exercise is the only thing that has been proven to improve symptoms. It's a challenge, though, since for me getting out of bed is usually what passes for exercise for me! When I am feeling relatively well, I do honestly try and walk and work with some light hand weights - I do think it helps, but it is so difficult to sustain. I guess with fibro as well you have to be very cautious not to overdo it with exertion or you pay dearly for your trouble! Yoga makes me feel quite good when I can manage it, but it's not often that I can and I have to be VERY careful as it's very easy for me to overdo it with yoga - which is a lot more strenuous than it looks!

I've been vegetarian the entire time I've been ill, so it's tough for me to say if that's making any difference, i.e. would I be sicker if I ate meat? I did cut all animal products from my diet about three years ago, and I didn't notice that it made me feel any better (physically at least - spiritually, that's another matter)!

What are your symptoms from the fibro?

[vegma]

Originally posted by m.t.ness
I have Chronic Fatigue Syndrome..... I also have IBS (possible celiac disease), CVID, interstitital cystitis, and hypothyroidism.

Welcome to the boards m.t.ness! I have found the gluten file, http://brain.hastypastry.net/forums/...ad.php?t=2132, to be extremely helpful to me. I would really encourage you to read it if you suspect gluten sensitivity (and are not already following a gluten-free diet). Many of your symptoms are common in celiac/gluten sensitivity. My fatigue has improved with a gluten-free diet and mega doses of B12. I'm not 100% yet, but I'm improving!

[m.t.ness]

Hi vegma:

I've been on a GF diet for over three weeks now, and so far no improvement. My gastroenterologist is hoping to rule it out as a possible cause of my GI symptoms. The complicating factor is that CVID can cause all the GI symptoms I'm having, as can IBS, which I was dx with several years ago. CVID can even damage the intestines, causing the same vilious atrophy seen in celiac disease, with the exception that those people don't respond to a GF diet since the cause is not gluten sensitivity. So hard to tease apart what's causing what when you have several autoimmune disorders, all of which can produce similar symptomologies!

I'm on several of the celiac/gluten-free boards and have been feeling discouraged since it seems many people with celiac have seen some improvement after reaching the point in the diet that I'm at. As I am NOT seeing any improvement, I'm wondering how long I should give it before I conclude that I'm probably not suffering from celiac or gluten allergy. My gastro said several weeks at least - I'm going back to see her in August.

[vegma]

That is discouraging, but I do know that it can take a few weeks to find all the "hidden" gluten. Then there's the issue of cross-contamination (toasters, cutting boards, cast iron skillets, shared condiments - you probably already know all this!). If you eat out at all, there's a good chance you're getting some gluten that way. I do know of people that have had very slow improvement, so don't give up yet!

[Minibean]

Hi everyone -

Have any of you heard of Dr. Joel Fuhrman? He treats fibro, CFS, IBS, etc. with nutrition and has excellent results, usually complete recovery from what I have read on his website. http://www.drfuhrman.com/default.aspx

m.t.ness -

I have IC too, but luckily none of the others that frequently seem to "go along with it" (fibro, IBS, etc.) I am planning on doing a phone consulation with Dr. Fuhrman to see if he can help me. He has mentioned on his forum that he has had success treating IC, although I don't know if that means complete recovery or just improvement. Mind you, either would be good! He said that for IC he recommends his basic plan but with no baked carbohydrates and a special juice mixture. I have not started his dietary plan yet partly due to the dietary limitations of IC - my diet is already so restricted, to have to cut out even more foods will be hard. But I'm sure I'll manage eventually. Also, do you mind my asking what CVID is?

I'm so impressed with Dr. Fuhrman just from what I've read about him - wouldn't it be great if he could help all of us? I know if he can help my IC I'll be shouting from the rooftops.

[m.t.ness]

Originally posted by vegma
That is discouraging, but I do know that it can take a few weeks to find all the "hidden" gluten. Then there's the issue of cross-contamination (toasters, cutting boards, cast iron skillets, shared condiments - you probably already know all this!). If you eat out at all, there's a good chance you're getting some gluten that way. I do know of people that have had very slow improvement, so don't give up yet!

Hi vegma:

Yep, I think I've accounted for all that as much as possible. My husband and I spent a week before going on the diet preparing our kitchen - cleaning, scrubbing, getting rid of all food with gluten, replacing all our porous containers and utensils, replacing our sponges and towels, etc. He is doing the diet with me, so once the kitchen was made GF, nothing non-GF has come in the house. I haven't eaten any prepared food since starting the diet, nor have I eaten out. I bought all new GF soap, shampoo, toothpaste, vitamins, and supplements, and made sure all my meds were GF. I'm on a pretty basic whole foods diet - essentially just eating some brown rice and fresh veggies and fruits. That way I feel pretty sure I'm not getting any hidden gluten. We grind our own spices, so I'm sure those are GF. Time will tell, I guess - but I have made every effort to make sure no gluten is going in.

Originally posted by minibean
I have IC too, but luckily none of the others that frequently seem to "go along with it" (fibro, IBS, etc.) I am planning on doing a phone consulation with Dr. Fuhrman to see if he can help me. He has mentioned on his forum that he has had success treating IC, although I don't know if that means complete recovery or just improvement. Mind you, either would be good! He said that for IC he recommends his basic plan but with no baked carbohydrates and a special juice mixture. I have not started his dietary plan yet partly due to the dietary limitations of IC - my diet is already so restricted, to have to cut out even more foods will be hard. But I'm sure I'll manage eventually. Also, do you mind my asking what CVID is?

Hi minibean:

I've not heard of Dr. Fuhrman, I'll check it out. I have had great success in controlling my IC with Elmiron - I am virtually symptom-free. It's a conventional med, though, so you may or may not be into that.

CVID is common variable immunodeficiency, a genetic disease of the immune system in which your body's ability to produce immunoglobulin is impaired. I have a pretty severe case - I'm making virtually no Ig of my own. It can be treated, but not cured, with Ig replacement therapy. It's commonly co-morbid wiht CFS/CFIDS, IBS, IC, etc, and can leave you dangerously vulnerable to infection as well as causing a whole host of autoimmune type symptoms. It also raises your risk of certain types of cancers.

[Minibean]

m.t.ness -

I went on Elmiron when I was first diagnosed (about 8 years ago). I can't remember how long I was on it but it was quite awhile. I think it may have been helping somewhat, but not enough that I felt it was worth staying on it.

Wow, CVID sucks!

[vegma]

Wow m.t.ness! You are definitely thorough! Good luck!