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Jnkmnky

I Need A Crash Course In Fibromyalgia.....

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I've been chatty with an elderly lady who lives near me. She's shown a real interest in my son's Celiac and has numerous health issues of her own that prompted this interest.

Here's what I understand: She has Reflex Sympathetic Dystrophy and says it's like fibromyalgia. I know nothing of either. I tried to do a crash course on the internet and searched the boards here for info to see if going gluten free might be considered helpful. About a month ago, I told her I'd poke around on line and see what I could find because she doesn't have her own access to the internet.

I've seen some comments about Fibromyalgia here. From what I saw on the internet, RSD is not really like Fibromyalgia. Am I right? Is RSD another auto immune related disease????? I didn't get that sense from what I read.

Can anyone tell me if Gluten Free would help a person with RSD? She also has rhumetoid arthritis.

Also, is it true that Celiac Disease is the ONLY auto immune disease with a known trigger and the ONLY auto immune disease that is controllable? I read that a few years ago. I figure it's time to confirm that bit of info.


I believe in God.

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Fibromyalgia Syndrome (FMS) also requires a trigger. For us it was a bout with Epstein Barr but it can be any significant stressor to the system. FMS is a form of arthritis that occurs in the muscles and connective tissue instead of the joints. It is diagnosed by symptoms and a tender point check. It is characterized by fatigue, foggiheadedness, and widespread pain and can vary from being a nuisance to being disabling. It can definitely be a "side problem" resulting from celiac disease. Some doctors are now encouraging all patients diagnosed with FMS to be checked for celiac disease.

Some of the best information I have found is on the Arthritis Foundation site www.arthritis.org. Fibromyalgia Network is also good. Find them at www.fmnetnews.com. There are several others such as WebMD and About.com.


Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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I don't know about RSD, but I am another with fibromyalgia... My experience has been chronic muscle soreness all over, with specific spots of tenderness--spots that feel like deep stinging bruises when poked...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Guest barbara3675

I, too, have fibromyalgia with a gluten intolerance. My fibro is somewhat under control with massive amounts of magsium with malic acid and Mobic (a strong anti-inflammitory--prescription) daily. Occasionally I have flare-ups if I completely overdo it, but I feel that the fibro is pretty much under control and I am appreciative that it is as good as it is. I still have pains here and there daily, but compared to what I hear from other fibro sufferers, I will just settle for this. At 60 years old, I still have to work pretty hard and I know if I were able to retire, the fibro might be better. White sugar is not good for you if you have fibro.

Barbara

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Barbara-

So you've had some success with the magnesium/malic acid combo? I haven't been diligent enough myself to really know I guess...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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The magnesium is a life-saver. I have to have it by injection because of the malabsorption issues, but it is worth it. If your doc agrees to this, just be sure you mix xylocaine in it and push really slowly (a 70 unit shot should take about two minutes) then massage the area. I also use a medium level pain killer called Ultram (available gluten-free in generic), "tylenol", and soma periodically for a muscle relaxer. Exercise is a great help as well. My doc wrote a script for a therapy tub and I use it a lot, especially in the middle of the night when the pain won't let me sleep. My husband knows it is a bad night when he wakes up to find both Jenn and I out there at 3 in the morning.

That tender point pain...I describe it to others like this:

Have you ever bumped your hip on the side of a dresser as you went by? Remember that moment of overwhelming, stop breathing pain you felt? That is what a tender point can feel like most of the time. Please just don't bump me or touch me there!

As for the other symptoms, I describe them like this:

Have you ever had the flu? Remember how your muscles hurt and your brain just did not want to focus on anything else? That is how fibromyalgia feels most of the time.

My friends and family have learned to "read my eyes". They tell me they can know how much pain I am in just by looking there. Interesting that those most able to assess this are women. I think it is a mommy-sense kind of thing. I have one friend who can tell how good/bad a day is as soon as she hears me say hello on the phone!


Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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Donna-

I have described EXACTLY my pain as you have in the past--walking into the side of a dresser... or sometimes, when I'm laying on my side on the couch, my cat will walk across my hip and it kills! It is a different pain than I had before fibro when I would get poked. Even the backs and sides of my legs, and my chest, my back of course, my butt...pretty much all over hurt. I think the top of my head doesn't hurt yet ! Overall it is still getting worse I think. Going to get massages has gotten painful. I guess I keep hoping it will go away after being gluten-free... But mostly I try and tune it out, not touch my muscles (sounds crazy maybe !), and I use a heating pad 5 out of 7 nights.... and epsom salt baths....

I will start taking the mag/malic acid combo again. I wonder if I am absorbing it... My anemia is corrected for now and I just had a b12 deficiency test that came back normal. (But I can't help wonder what my body is picking up when my food doesn't always get digested!) Did your dr recommend the shots. How often do you get them? Ever tried any "herbal" muscle relaxers or pain killers? I do exercise about 5 nites a week, except for times when I get really run down, like the past few.

That's really cool how some of your women friends are that attuned to you. I think my best friend is like that too--we can read the state of the others' "heart." Good friends are a life saver.


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Also, Donna or Barbara--

Have either of you received a "cause" for Fibro? Something more specific? I've heard so many things, like "who knows" or "malnorishment of muscles over an extended period of time" or "build-up of toxins in body." Just wondering... I guess if we ever had a definitive answer, we could get a "cure" too perhaps... Hmmm


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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For those with fibromyalgia what are the symptoms? Are extreme fatigue, joint pain, muscle pain, lack of energy, and specific point pain (like in the eye or wrist) all common symptoms?

I'm asking for my mom who is having all these symtoms. Her blood tests for celiac have came bach negative but I know that celiac runs in her family and I believe fibromyalgia is an auto-immune disorder linked/related to celiac?


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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Lots of return answers--read through for yours.

Carriefaith: Yes, yes, and yes. I also have the eye and wrist pain as well. Some of the other things she may write off to just getting older. Not necessarily so. Check out the arthritis.org site and take a look at the tender point chart. It won't take you long to assess whether FMS might be the problem. If you are not sure of the exact points, just press around the area and she will let you know if you hit one. (Just be sure you are in a position to dodge the rapidly arriving fist!) Also, yes, FMS is another auto-immune kind of thing. Those of us with FMS often have other disorders as well.

Other Misc:

In the beginning, I had to have the mag sulfate shots at least twice daily. After going gluten-free, I was able to drop to once a day and then eventually just a couple of times a week as needed. I still have to have the B shots at least twice a week to keep up the energy.

About that heating pad use... I use my heated throw nightly and even in 90 degree weather have to wrap my knees and hips because of the pain. The family laughs at me sleeping with a blanket wrapped around my knees and my hips when they are all stripped down to as little as they can. My daughter understands. She received her first personal heated throw for Christmas because she kept swiping mine. And I thought when our 20 yr old cat died I would no longer have to fight anyone for the heating pad!

I tried all kinds of things over a several year period. Most of them had some form of soy in them and I react to that. The one thing that has made the most difference is going gluten-free. I still require daily pain medication and several times weekly muscle relaxers, but that is a far better situation than the 8-10 daily pain killers and about that many muscle relaxers I was on for a while. Stretching exercises help especially when I am able to do them in warm water. The cat walking across me thing is still painful. I almost cried this afternoon when one climbed up my chest wanting to get petted.

Last I heard, they had not determined a specific cause of the fibromyalgia. They know what causes individual symptoms (such as depletion of magnesium causing spasticity). They can also many time pinpoint the trigger for it such as a stressor or viral infection. I will try to do a little bit more research to see if there is some current thesis on the matter.

Whew. That is enough for now. Ask away if you want more.


Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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Donna-

Do you get knots in your muscles at all too? That is something else I have with the pain--my muscles are full of knots and trigger points...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Yes, I get the knots and tiny jerks as well. My muscles will sometimes spasm tightly and it is difficult to do things like open my hand or release the arm or leg when it happens. My endocrinologist says the jerks, knots, and spasms happen initially, using magnesium each time. Then they do it so much that they deplete the available magnesium required by the muscles to function properly. The longer they are without the proper amount of magnesium, the worse the spasms, etc. will become. Providing them with a quick hit via injection will often release them.

I do not try to give the shot in the offending muscle, but select a spot elsewhere such as the back of the arm, belly, or thigh. Often by the time I have finished the shot the muscles are beginning to settle down some. I use a regular insulin needle, mix 5 units of xylocaine into a 2ml bottle of mag sulfate, rock to mix, then pull 70-80 units of the mixture. I will often tip the shot with a little more (approx 5 units) xylocaine. I inject it and push s-l-o-w-l-y...I taught the kids to time them when they give the shots by pushing 1-2 units then counting to five before pushing the next 1-2.

Hope this helps. It has sure helped me.


Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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How are you able to give the shots in your home? Does your doctor order you the mag/equipment? I wanted to give my allergy shots to myself, but my doctor wouldn't let me...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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My doctor gave me an Rx for:

2ml vials of mag sulfate 50%, 1 gram/2ml (the pharmacist orders a box of them)

American Regent brand if gluten-free NDC 0517-2602-25

20 mg of 2% xylocaine

Astra Zeneca brand is gluten-free NDC 0186-0120-01

1cc regular insulin needles (box of 100)

alcohol swabs

The mag sulfate bottles are single use vials but I was told to reuse them anyway since there are only two or three doses in each one and I am the sole user. The one box looks as though it is only a one month supply but actually lasts longer.

The b vitamins are tougher to come by at the pharmacist so the doctor orders them and I pay for them through his office. I get B-12, b-complex, and folic acid. I use the same xylocaine bottle for both types of shots. I onlyuse one syringe and pull all four medsbeginning with the folic acid and ending with the xylocaine.

let me know if you need any further info.


Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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:( I just don't know anymore.... the rheumatologist I saw on Friday said I have FMS but I am a little discouraged. I don't have pain in all of the trigger points. I have the pain on my hips and one knee that is it. It is my joints that hurt the most. My hip joints and my legs ache like crazy. The bottom of my feet and lower back. I am so tired and hurt so much but he told me to go off of the Celebrex and said there was no painkillers that help FMS. I am so frustrated with the doctors because my family doctor says he doesnt feel I have FMS but cant give me a reason as to what is wrong with me..... Since I have gone off the medication, the pain is becoming excrutiating again..... :(

Dont know what to do next..........

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Guest barbara3675

After following the exchange between cdford and jenvan, I am feeling like I really have a handle on my fibromyalgia which I think may be associated with the gluten intolerance, but no doctor will acknowlege. The two of them showed up around the same time in my life and no doubt were stress related. As I said in my former offering early in this thread, I control with magnesium/malic acid pills which I take twice a day/2 each time. I buy them at the health food store where the owner has celiac disease. I also take Mobic which is an anti-inflammitory/a prescribed medication and I buy it online from 4cornerspharmacy.com in New Zealand where you need no prescription at all.....all you have to do is go online and order it up. However I would never buy medicine there unless it had been prescribed to me first by my doctor. I buy two of my medications there because I save $1000/year by doing so. The other one is Topomax which I take to ward off migraines...which, by the way, my neurologist says, is probably helping with my fibromyalgia too. It is anti-seizure medication that they are using frequently for migraine people with great results. However, one of the side effects is memory problems and I think I could be experiencing some of that. If it gets any worse, I will have to see the doctor about it. I still hurt all over at times, but it is manageable and compared to how other people feel, I know this is as good as it will get. VERY occasionally I do get flare-ups where I can barely move. They last a couple of days and are a real reminder of where I started and how far I have come. My explaination to people as to how fibro feels is like when you have the rotten flu and you hurt all over.....well, that is how fibro feels all the time. Best wishes to those that haven't quite gotten all the anwers they need yet. I hope you do soon. Barbara

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Thanks Barbara for the info....

I am off to see my doctor again so maybe he will do some more testing...I do feel that I have been run over buy a truck... I hurt all day long. Two weeks ago was really bad and it was diffucult just to move. I spent my days living in my recliner on a heating pad. I have been off work and I am supposed to go back tomorrow but not sure if I can. My job requires me to be on my feet all day long for eight hours straight. I don't know that I can do it. I will go to the health food store and buy some magnesium/malic acid pills. Hopefully those will help. My family doc will most likely tell me to go back on the anti-inflammitories but it does worry me the side effects that can come from taking them. But I guess the positive side of taking them would be if I can at least just live somewhat normal of a life. If that is possible..... I keep getting dizzy spells again. Does that happen to anyone else????

I also read that white sugar is bad for people with FMS...is that true??? Tried omitting the tomatoes and potatoes but it didnt seem to make any difference.

Anyways thanks for letting me complain......and thanks for the support... :D

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I too suffer from fibromyalgia (and frankly a whole host of other stuff too!). I am a little discouraged after reading these post, I have only been gluten free for a month but was hoping that the diet would help to restore me and eventually reverse the fibro symptoms. I have heard of other people getting better (honestly :rolleyes: )

So, those who have fibro and are not feeling improvement *(pain, fog etc.) how long have you been gluten free? Has any body here resolved any of the fibro symptoms or improved after being diagnosed celiac and going gluten-free?

I read some post on the brain talk forum, and 1 post talked about completey healing the fibro, chronic fatigue after he was diagonsed with celiac. He said it took about 1 year, on the diet, but slowly and surely he regained his health.

Bette

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Barbara - How long did you take the mag/malic supplement before you noticed improvement? I to take a supplement with both. Have just started taking 2 pills 3x daily for about a week now....

Bette - I have only been gluten-free since Feb.


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Okay, let's consider the longer term here. Please take the time to read through this entire post.

Your FMS should get better over time with a gluten free diet. I am so much better that I could dance for joy...if I could move much, that is. Consider where you are right now. If you make small amounts of progress each month for the next two years, you will be significantly better. You may not notice it as much as those around you do. Have you ever seen someone after a long period of time and they had lost 30 pounds? If you saw them daily, you might not have noticed the gradual change as being as significant as when you saw the before/after. It is that way with FMS.

I can sit up and feed myself. My daughter no longer has to wash my hair and shave my legs. I am sitting at the computer typing. I took my daughter to the doctor yesterday without having to ask someone else to drive us. I bought a shirt with a button on it last week. No one has had to assist me to get to the bathroom in months now. These are all GOOD THINGS.

Yes, I still hurt. Yes, I still require a wheelchair to go very far. Yes, I still struggle to complete tasks. Yes, I still have to knit a row and rest a row when I knit. Yes, yes, yes...you get the picture. But I am getting better!

One of the things FMS does to us is to cause us to feel so bummed out that we cannot seem to see the big picture. It overwhelms our senses to the point where we have a hard time seeing the future as bright. Once you know that the root of your particular case is in the celiac disease, you have hope. Claim that hope and celebrate with every small step towards getting better. With time, those small victories will add up...just like that 2 lbs a month become 30 over time when losing weight.

Periodically, take the time to reassess what you can and cannot do. Look at ways to adjust to do some things better or more easily. I did this with a regular journal (I could not keep it anywhere near daily, but I tried to make sure I journaled at least monthly) and printing off one of the FMS assessment forms available on the internet. What I found was fascinating. My abilities varied widely by the season of the year and the weather. They varied widely by my activity levels. The amount of medications I required also varied. Over time, there was little progress until I was fully gluten-free, then wow what a change two years has made.

I adjusted my lifestyle to more closely work with my new found information. I planned simpler activities during the winter. I did more teaching and learning during the winter when my brain worked better even though my body did not. I worked with the weather instead of against it. When summer rolled around, I planned more physical activities and less of those that required thinking skills (my brain goes to mush in the summer heat). I even adjusted my grocery lists to work with my abilities to cook at various times.

Work with your body and give it time to heal. Don't become too discouraged at any given time because your abilities will change. Find medications for pain that work for you. Do stretching exercises...more when you can, less when you struggle. I am going to post some pain med info in another post because this one is so long.

Keys:

-Find a doc who will work with you and has a clue about FMS.

-Find medications to help with the pain and brain disfunction.

-Journal or keep regularly completed assessment forms

-Exercise as you can. Remember to start very slowly and gradually add to the program. It should take you six months or more to get up to a decent routine. Take your time but be consistent

-When you feel that sense of discouragement, go back over your journals and reports. Look for areas of progress. Mark them in red and congratulate yourself.

-Look for patterns in your abilities. Does your pain level begin to rise two days before a storm front is coming through? Listen to it and don't schedule important or taxing events then. Do you struggle more to think in the summer? Don't schedule yourself for a seminar on some detailed project during that time.

Most of all, do all you can do. Keep your long term goals in mind. When dieting, you can't let one stumble into an ice cream binge destroy months of effort. Don't let it here either.


Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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Now that you have had your daily dose of encouragement and a good fanny kicking, here is the info on pain meds.

Yes, there are medications to help with the pain. I do not have pain in all tender points at the same time unless I have really overdone it or have been glutened. My hips and knees are the absolute worst no matter what.

For pain, discuss using Ultram or Ultracet. It is a moderate severity medication that is not very habit forming. Ultram is available generically from a source that is gluten-free. I use the generic Ultram and my own "tylenol" since that is all Ultracet is--Ultram with the Acetamenophen already in it. I can take a varying amount of the medication without impact. That means that I can take one a day if needed or ten a day if needed. If this drug were very habit forming that would not be possible.

Also good are the Lidoderm patches. They can be cut to fit areas like the inside of the knees, the hips, or across the clavicle. They contain xylocaine and seem to work best if used consistently. You remove the back cover and place them over the tender point. They stay on for 12 hours and then off for 12 hours. I use them at night especially in the winter.

You can use xylocaine injections around the tender points by inserting the needle, pushing a little of the med, then moving the needle to another point around the tender spot until you have encircled it. This is much more painful than the lidoderm patches!

If you have trouble sleeping, ask your doc if Nortryptiline (sp) will help. A small dosage that is not efficacious for depression will often assist with sleep.

If your muscles spasm, ask about Soma (gluten-free generic available) or Gabitril. These are more powerful and are specific use meds so use them wisely. A less powerful option is the mag sulfate suggestions from earlier.

I think that is all for now. Whew...I need a rest.


Donna

South Georgia

9 yrs gluten-free

...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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Thanks Donna for your words of encouragement....

I never really thought about evaluating my problems like you have.... I went to the doc today and he put me on Amitriptyline to help me sleep better at night... hopefully it will help.... I would have to say that your persective on this whole health issue we suffer from is much more positive than what I have been lately.....thanks for your positive response and words of encouragement. :D

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Donna-

Good encouragement from a veteran with wise words :) Thanks !


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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