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love2travel

Diagnosed With Fibromyalgia Today!

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My physiotherapist and massage therapist have suspected fibromyalgia for some time. My chiropractor did a bunch of testing today and confirmed it. My back was injured three years ago (badly) so I was attributing my back problems to that (I still have disc herniation, degenerative disc disease and so on). I know there is a strong link between celiac disease and fibro. It is frustrating to have yet something else to deal with but at the same time at least I can proceed.

My chiro recommended FibroSense by WomenSense as it helps some of his patients greatly. The box says it contains no corn, dairy, soy, wheat or yeast. I know - pretty sketchy. My naturopath guy called the company who said there definitely is no gluten in the product but cannot label it gluten-free because they would have to check each batch and they are unwilling to do that. So, has anyone tried this product? I want so badly to try it. It contains:

Malic Acid

Magnesium citrate

Celadrin

Non-GMO soy lecithin oil, gelatin, glycerin, carob powder, olive oil, Microcrystalline cellulose and L-Leucine are its non-medicinal ingredients.

My chiro also told me to avoid aspartame and MSG. Has anyone had any success with treating/coping with fibromyalgia? It is so debilitating. It forces me to lie down a lot each day which in turn is bad for my back. It is difficult to get comfortable at night due to pain then the cycle begins again. I often must get up at night to walk around just because I cannot lie or sit very long.

For back pain I currently go for physiotherapy, acupuncture and massage weekly. After three years this has become a bit expensive. I do see a chronic pain specialist in the city Friday - perhaps he'll have some suggestions as well. :)

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Ahhhh. I have two herniated discs, and was just diagnosed with fibromyalgia myself. I haven't tried any medications yet as I'm waiting to see my doc later this week. I can sympathize though, with the exhaustion and lying around. It's all I do.

I'm also wondering if I'm having a flare up because anything I eat seems to give me nasty belly cramps, almost like I've been glutened, but I haven't.

Good luck with the specialist!

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Ahhhh. I have two herniated discs, and was just diagnosed with fibromyalgia myself. I haven't tried any medications yet as I'm waiting to see my doc later this week. I can sympathize though, with the exhaustion and lying around. It's all I do.

I'm also wondering if I'm having a flare up because anything I eat seems to give me nasty belly cramps, almost like I've been glutened, but I haven't.

Good luck with the specialist!

Oh, how awful! :angry: Yes, lying around is really HARD! There is only so much you can read, play on the laptop, etc. Then the more you lie around the more wasted muscles become producing more pain, sleep difficulty and on and on. It just does not stop! The tricky thing is my husband and I have booked flights to Italy and Croatia for less than three weeks' time and whilst I am thrilled, I am terrified. I've flown long-haul flights before with pain and it is absolutely horrible. When you're in a plane there is absolutely nothing you can do. But at the same time you have to live, too!

I hope you can find out more info, too, at your appointment. I feel for you and your cramps that mimic being glutened. :( To think that three years ago I felt so healthy and only went to the doctor for annual checkups. Now my pharmacist knows me by name. Not a good sign...

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Hi, I have Fibro too and am lucky to say that I don't have any problems with disks as of yet. I've tried FibroSence and I'm sorry to say it hasn't worked for me. That's not to say it might not work for you. I would give it a shot. You never know.

The only thing that keeps my Fibro down to a dull roar is avoiding gluten, dairy, soy, msg, caffene, aspartame and the nightshade vegetables. Try to avoid as much stress as you can because it will cause your Fibro to flare. And I have found that when I do too much it flares, so try not to do anything too strenuous. When you do, it can knock you out for a day or two. For sleeping at night I take 10 mgs of Melatonin and 200 mgs of 5-HTP. I also take 1000 mgs of Magnesium and 600 mgs of

white willow bark for pain and 200 mgs of Cucurmin for an anti inflamatory.

I've gone down from a pain level of 8 and a half to a 4 but my fatigue level has only come down from an 8 and a half to about a 5 and a half to 6. It's taken me 2 years to get here. But then again I've had all this crap from the age of 8. So hopefully i'll be even better in a couple of more years, that is if I can avoid alot of stress which dosen't look likely anytime soon.

Anyway, enough rambling. I hope you get to feeling better.

Txplowgirl

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Stay away from nightshade vegetables as they induce inflamation.

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Hi,

It sounds like you are doing a lot of good things. I can understand however how all those treatments can really add up. I personally spent a fortune on all kinds of healers and massage etc. The thing to do is to try and get at the bottom of what it is that is going wrong. The problem with fibro however is that the causes for it are diverse and difficult to pin down.

Nevertheless, I also want to add its important to remember that you probably haven't been completely off the gluten that long, if the signature info you have is correct. Many here have fibro symptoms, but experience them lessening or going away after a while from being completely gluten-free.

Make sure you are getting enough vitamins and minerals and things like omega 3's balanced with the other needed oils.

Maybe take nattokinase to reduce swelling and scar tissue--important for aiding the damaged villi as well as helpful for fibro symptoms. Some find taking pancreatin with meals (esp. with protein) helps at first. Bromelain/papain are also helpful for reducing inflammation and digesting your food better unless you are like me and are allergic to them. Dandelion root tea can also help reduce inflammation and toxicity. Magnesium can be important too, esp. if you have constipation.

Taking co-enzyme B complex has helped me enormously. The body tends not to absorb B vitamins very well esp. at first while you are still healing your damaged villi. B's are essential for many functions of the body, including the nervous system. The co-enzyme B's go directly into the blood stream if taken on an empty stomach.

I have found silica drops to be of enormous help. It helps build collagen, essential for healthy joint function.

I also am sensitive to salicylic acid (SA)--found not only in aspirin but also in many fruits and vegetables and herbs--especially the skins. Reducing the SA load has greatly reduced joint/muscle/nerve problems I have had chronically for years. If your problem is severe, consider SA or some other sources of possible sensitivity.

Exercise and meditation (usually not at the same time unless its hatha yoga) are also really important. They both change your body chemistry, usually for the better. I personally like walking a lot. Just go at it slowly, and gradually work your way up...

Good luck!

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I have Fibromyalgia but not Celiac. My Fibro. was waaaay worse when my thyroid was out of whack.

I take MSM. That really seems to help with the pain. Currently taking 500 mg each morning and night. Was taking double that when the symptoms were bad.

I use Aspartame in the form of Diet Coke. Doesn't seem to affect me.

I find the best way to keep the pain down is not to overdo it. Daughter and I were doing Spring cleaning last week and that is a task I am just not up to doing. But I pushed myself and I paid for it. I spent one very sleepless night because my feet and legs kept cramping. Then I also had weird cramps in my sides. I just could not find a comfortable position at all!

I also find I can not stay in any one position for long. Actually staying in bed seems to be the best thing for me and that's when I am the most comfortable. But I disovered that I need a bunch of pillows. Because I have GERD I have to sleep on a wedge. And because I have bad veins in my legs, I am supposed to sleep with my feet elevated above my heart. I often do start out this way but find I must change positions. When I lie on my side, I put a pillow between my knees. And I lean back against a Sobakawa pillow. Sometimes I use a body pillow. I also find that Pillow Pets are great if I can manage to sneak one from my daughter.

If I am at the computer I have to get up every so often and walk around a bit.

If I am walking, I can't do much of it at all. When shopping I need to use a shopping cart for support. Unless I go to a really small store and am not doing much walking.

Standing in one spot is the worst. I really stiffen up. And it can take a long time to recover.

Exercise is tough. The worst thing for me is stretching. This causes almost immediate muscle cramps. Yoga is bad. So is Pilates. I seem to be able to do weights okay.

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Thank you all so much for your encouragement and information. It has been helpful. As a follow-up note - I saw the chronic pain specialist this week and was definitively diagnosed with FM by him as well (obviously no surprise there!). He was so very kind, took his time (an hour!) and was thorough. So much now makes sense! In addition to other things I'm doing (i.e. walking, stretching, having PT, massage, acu, etc.) he recommends:

B complex

Magnesium Glycinate (other forms of Mag do not absorb nearly as readily) - he said to NEVER take it with Calcium when you have chronic pain

Vit D3 5000 per day

Omega 3 (only from fish source)

Zinc

I am already on muscle relaxants. He also started me on Tramadol to help dull the pain to enable me to do more. Once I've been on that for awhile he wants to add a nerve pain med (Lyrica or Neurontin). One thing I neglected to ask him was how long it would take to notice a difference with taking the above. I'm also very hopeful that after being gluten-free for longer (yes, I have been gluten-free for only 10 weeks) at least some symptoms will subside (i.e. insomnia, forgetfulness and pain, of course).

He also gave me the option of attending a clinic where I would see a P.T., O.T., doctor (himself), exercise therapist, psychologist and a nurse (some of them daily). It would be for six weeks (I live three hours away so would need to find a place to stay). Will definitely consider that as well.

All in all a very satisfactory visit. :)

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