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Need A " Pep Talk"; Very Discouraged And In Pain


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#31 IrishHeart

 
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Posted 19 March 2011 - 06:20 AM

Aww Irish!

You have been through so much! I'm so sorry you are having to continue in pain. They told me I had fibromyalgia too, and that it doesn't get any better and I would just have to live that way. Oh my God. I am so admiring of you for not giving up! And you are always so positive and pleasant with others, it is hard to believe you do all that while living with such chronic pain. You really are amazing.

I don't have any good advice. I just want to send you a cosmic hug. And to let you know you are appreciated here. You just keep fighting the good fight. Time is on your side and every gluten free bite of food you put in your mouth is going to counteract all the years of inflammation from the "gluten years"! I wish I could take it away and that no one would ever have to feel so bad. I hated not being able to function or do the things I wanted/needed to do. You are not alone. It is obvious that every fiber of your being wants to be well. You can do this and just try to focus on what has improved and gone away...hopefully never to come back.

You are an inspiration me. I wasn't quite so pleasant or positive about it when I was seriously ill and not believed. I still have bad days and wonder if I am going backward, but then I have a good day and realize that it just takes time and positive supportive people in your life. I wasn't one of the lucky ones whose husband stayed. Mine sided with the Dr.'s that I was hypochondriac and he cut his losses. So for me, this place is my primary support. That makes people like you...VERY important and very special. Please know that you are helping other's every time you share what you are going through. And when you need support, you have it here my friend.

Wishing you an easier day than the last one.



Meat, my sweet friend!!
You and I have talked many times and you have shared your story with me and I admire YOUR strength and determination to climb out of what I call "the rabbit hole" of gluten. You 'da woman!!! ;)
Thanks for being so compassionate and caring. ;)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#32 IrishHeart

 
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Posted 19 March 2011 - 06:32 AM

Irish Heart, I know exactly how you feel. There were days I hurt so badly I thought a few times of just ending it. But I had my dad as an example of someone who put one foot in front of the other and kept going. My favorite saying that he had that we also put on his gravestone when he passed was "I'm in pretty good shape for the shape i'm in".
When he was 13 he was working as a cowboy in the early '40's on a ranch out in west Texas. He was chasin a cow that went over a 50 ft cliff, he and the horse that he was on went over to. They landed on the cow. Killed the cow and horse, broke his pelvis in 3 places, one arm in 2 and well, whiplash you could say. Then he joined the army in the last year of WW2 and was stabbed in the back with a japanese bayonette. Took out 2 ribs and his spleen. Then, in '57 he was in a car wreck, drunk he tried taking a 30 mile an hour curve at 100. Police was chasing him. Rolled his car 9 times. Broke his back in 5 places, rebroke his pelvis in 4 places, broke 5 ribs, his neck in three, right shoulder, left shin, right femur. Left arm. He was seriously messed up. Dr's told him he'd never walk again. My grandmother told me he looked at that dr and said. "Wanna Bet"? He walked out of that hospital a year later but not without pain for the rest of his life. Then in '94 he had a girlfriend go nuts on him and shot him with a .410 rifle at close range 4 times. We nearly lost him on that one for sure. Had a bullet lodge next to his spine that the dr's couldn't remove without paralyzing him. Needless to say that left him in a great deal of pain. While they had him in surgery cleaning his insides out they discovered he had colon cancer. On top of that he had congestive heart failure. The dr's gave him a yr to live and again he said "wanna bet"? He lived another 8 yrs but the last 6 months were really bad. He finally passed from a heart attack.
So, as bad as i've hurt I have him to give me inspiration.
I take 10 mgs of Melatonin and 200 mgs of 5-HTP to help me sleep. I also take 100 mgs of Curcumin twice a day. That is an anti inflamatory. I take 1200 mgs of White Willow Bark twice a day for pain. 500 mgs of Magnesium twice a day for pain. Then diet wise. First it was the gluten, then the dairy, then the saoy, then I had to eliminate anything with Aspertame in it because that created a lot of pain, so no more diet drinks, arrhhhhh! Then the nightshade vegetables which created a lot of pain.
I've been like this since I was 8. Didn't find out what was wrong with me until I was 44. I have a lot of years to make up for. It's been 2 years now and i'm just now getting to where I can go up to 4 hours without hurting. There are still days when I barely have the strength to open a jar of something but I push through it. I have to because the bills go on. I'm still dealing with fatigue but I have learned not to push myself and deal with it a little at a time. Not easy when you drive a truck cross country. But when those days get bad I think of my daddy and remember there were days he could barely walk himself but yet he pushed himself. He gives me the push I need to keep going.
I feel myself getting better a little at a time but i'm not there yet. Hang in there Irish, you can do it. Sending ((((HUGS)))) your way.


TEXAS!!
Many times, your posts have kept me going!! You are a real fighter and what we call up here "a tough cookie" (meant with respect!!).
Believe me, in 3 years, I have tried melatonin, 5HTP, valerian, passionflower, white willow bark, curcumin, turmeric....nothing seems to help me. No drugs or supplements have helped; I suspect they just aren't absorbed enough to do any good. THOUSANDS of $$$ we spent on such things...sigh...the naturopath and functional med doctor cannot believe it either. :blink: I tried all kinds of drugs, too...just made me sick. So, I tough it out.
I admit, I too have had those thoughts of "I'd rather be dead than live like this!" and then, I think of my husband and I say "Hell no, I've got things I want to do!" and I know I could never devastate him that way. I think of my Dad and say, I can do this!
Like you, I had an amazing Daddy. He was my very best friend. He fought long and hard the last 8 years of his life to be healthy and he never complained and always kept his sense of humor somehow. We now believe he had THIS!!!!! and no one could get to the bottom of his anemia, his stomach troubles, his need for MANY blood transfusions, his fatigue, his heart trouble, and ultimately, his kidney failure. Ironically, around the time of his death (Feb, '08) is when this thing really roared inside of me for good, although I have had a lifetime of health problems I now know are connected to celiac. I have looked to him for guidance and courage and somehow, I feel he is still looking out for me and keeps me going, fighting to reclaim my health.
I appreciate you sharing your Dad's story with me and I appreciate your encouragement! You're quite an inspiration yourself!
You go , girl!!! ;)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#33 IrishHeart

 
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Posted 19 March 2011 - 06:45 AM

Awwwwwwww, sweetie! You DID just give someone this pep talk...ME :) I wish I had more of a pep talk for you, but I think I'm still all gluten-y LOL But these people have displayed some amazing support and encouragement that hopefully has helped you a bit...it helped me a bit, too. I wish the relief was more immediate, but I guess it's true that the damage has accumulated over years and years, so it makes sense that it will take time to undo, I suppose.

And it IS tough, thankful as I am to finally have some sort of an answer, it is tough to know what is wrong and to do everything you are supposed to do to resolve it, and STILL feel like CRAP! I keep trying to believe that it will get better. All these people wouldn't be lying to us, right? :P

Hang in there, IRISHHEART, you are amazingly strong to not only go through this, but to be able to support others and maintain a sense of humor while you're at it.



HONEY,
I do not know where the humor comes from---some of this has not been very funny at all, has it?? and yet...we go on!
You and I are going to get there together---one day at a time, one little victory at a time....hang tough...I'm right here for ya!! ;)
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#34 Fire Fairy

 
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Posted 19 March 2011 - 08:37 AM

It's going to get better! You are on the right path! I'm pretty new on this path too so I can't offer much advice but I can send hugs to you my friend. :)
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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#35 IrishHeart

 
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Posted 19 March 2011 - 09:33 AM

It's going to get better! You are on the right path! I'm pretty new on this path too so I can't offer much advice but I can send hugs to you my friend. :)



well, thank you for the cyber hugs, sweet fairy!! right back atcha!! ;)

I am feeling the lovins from all these wonderful women and I have renewed confidence as a result....that "DARK side of celiac" wants to bring us down the hole...but I just AIN'T goin....(nice grammar from a former English Prof... :lol:

I cannot thank you all enough for the good healing cry and the emotional boost I felt this morning while reading your compassionate responses...I'll hang tough. There is more empathy to be found on this forum than I think many of us get from family and friends.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#36 love2travel

 
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Posted 20 March 2011 - 08:36 AM

Thanks, everyone! You are all so sweet and uplifting!

I appreciate all your suggestions, and I thought they would all help too, however...I should explain. For 3 years, I have tried MANY sessions of acupuncture, PT, MT, myofascial release, even rolfing. I spent 2.5 years with a naturopath, functional med. doc, supplements, physiatrists, saunas, the gym ....trust me when I tell you THOUSANDS and THOUSANDS of DOLLARS on therapies of all kinds...stress reduction classes, biofeedback, yoga (which I love!). I tried everything!.The yoga and tai chi is not easy as I have a dislocated coccyx and SI joints and numbness, burning, tingling and joint and bone pain and my legs don't hold me up for long. Every person said the same thing after working with me for months..." this should be working...I think something is keeping you ill" (yeah, we know what it is now)

I have severe pelvic floor issues and see a specialist PT for it. I researched for months to figure that part out as no doctor could help me ( I was told to get a scooter or a wheelchair--HUH!!?? no way!)and now, I am finally getting some relief. I have had to diagnose myself in every aspect. (good thing I can read, although with the spacey head, it was not easy :P )

I could not sit comfortably at all for 3 years! Sitting in a tub is not possible, otherwise I would soak for hours. The PT says an injury of this nature takes maybe a year to resolve. yikes...anyway...I always look forward; I am no quitter!!

I just needed a boost from you all, I think. And you have provided it. :D Thanks a million!



Mornin', IrishHeart!

Your symptoms are so darned close to mine it's not even funny. Although mine stem from an accident I have to wonder whether celiac is making things worse. It's been three grueling years of physiotherapy, acupuncture, chiropractic, laser therapy, all sorts of muscle relaxants and painkillers that have done nothing, massage and so on, about $50,000 just to control pain. These things don't help HEAL me, they just help me manage and live. I've been told by various surgeons that there is nothing that can be done except cope and manage. That's rough. So, we're in the same boat, you and I. But at least I do not have the typical celiac GI symptoms and for that I am thankful.

It's weird but I finally got over the hurt versus harm thing. I was so scared to live normally that my muscles atrophied from lack of movement and I have those dreadful myofascial knots all over my back, shoulders, legs, buttocks, ribs and so on. Tight calves can be a killer, too! My massage therapist says she has never seen anything like it. My acupuncturist last week said she had a very hard time getting needles into my right side because there was so much resistance. Oh, yeah. I've had lots of painful cortisone injections into my thighs, buttocks, back and so on but didn't help.

But the last while I no longer fear doing things. I've been told not to sit more than 10 minutes at a time (must often stand to eat) but yet am planning a trip to Croatia in 6 weeks from tomorrow which means 3 hours to the airport, four hour flight, two hour layover, ten hour flight, two hour layover, three hour flight and three hour drive to our house there. That's a lot and I dread that. A lot. There and back. And I never, ever can sleep on planes. But I MUST live my life. Distractions really help. Once I am there it will be alright. Would I rather be in pain here or in Europe????

My health care team all tell me that these things won't INJURE OR HARM ME - just hurt me. Of course there are many, many days that I need help to get to my feet or get dressed but I refuse to get worse (I'm relatively young, in my mind!).

Fear avoidance really did me in a few times. Chronic pain is excruciating to bear and affects all aspects of your life. It is hugely mental. My husband is so good and pushes me to do things even when I hurt (which is about 90% of the time). In fact, this weekend we went away and did all sorts of fun stuff even with my back pain at 7-8/10 constantly. Sure, I have to lie down in our vehicle and get up many times throughout meals to stretch but I did it! And feel darned good about it.

It sucks not being able to have a bath, doesn't it? The little things many take for granted. I want so badly to have long soaks but it is not possible to get up and out of the tub due to muscle wasting and pain.

I force myself to do something I love each day. When things finally begin to melt (hopefully soon!) I cannot wait to plan things in my raised beds (DH built them for me as I cannot bend or kneel and plant) and smell the soil. The robins should be back in 5-6 weeks - their song is so uplifting! Then at the end of May our tulips start blooming. (We have very long winters in northern Alberta.) As I love to cook I make sure to make something lovely each day, even if it is just roasting whole spices, pounding them out in my mortar and pestle, or making pesto. And I dearly love to read. However, as you know, pain can become too much for that, too.

So, please hang in there. Just remember that tomorrow can be a better day and perhaps the day after that can be even better! Before we know it, it will be Spring and the thought of that makes me rejoice. Banish all the negative thoughts as soon as you think them if you can but at the same time realize they are also natural for us humans.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#37 IrishHeart

 
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Posted 20 March 2011 - 09:02 AM

Mornin', IrishHeart!

Your symptoms are so darned close to mine it's not even funny. Although mine stem from an accident I have to wonder whether celiac is making things worse. It's been three grueling years of physiotherapy, acupuncture, chiropractic, laser therapy, all sorts of muscle relaxants and painkillers that have done nothing, massage and so on, about $50,000 just to control pain. These things don't help HEAL me, they just help me manage and live. I've been told by various surgeons that there is nothing that can be done except cope and manage. That's rough. So, we're in the same boat, you and I. But at least I do not have the typical celiac GI symptoms and for that I am thankful.

It's weird but I finally got over the hurt versus harm thing. I was so scared to live normally that my muscles atrophied from lack of movement and I have those dreadful myofascial knots all over my back, shoulders, legs, buttocks, ribs and so on. Tight calves can be a killer, too! My massage therapist says she has never seen anything like it. My acupuncturist last week said she had a very hard time getting needles into my right side because there was so much resistance. Oh, yeah. I've had lots of painful cortisone injections into my thighs, buttocks, back and so on but didn't help.

But the last while I no longer fear doing things. I've been told not to sit more than 10 minutes at a time (must often stand to eat) but yet am planning a trip to Croatia in 6 weeks from tomorrow which means 3 hours to the airport, four hour flight, two hour layover, ten hour flight, two hour layover, three hour flight and three hour drive to our house there. That's a lot and I dread that. A lot. There and back. And I never, ever can sleep on planes. But I MUST live my life. Distractions really help. Once I am there it will be alright. Would I rather be in pain here or in Europe????

My health care team all tell me that these things won't INJURE OR HARM ME - just hurt me. Of course there are many, many days that I need help to get to my feet or get dressed but I refuse to get worse (I'm relatively young, in my mind!).

Fear avoidance really did me in a few times. Chronic pain is excruciating to bear and affects all aspects of your life. It is hugely mental. My husband is so good and pushes me to do things even when I hurt (which is about 90% of the time). In fact, this weekend we went away and did all sorts of fun stuff even with my back pain at 7-8/10 constantly. Sure, I have to lie down in our vehicle and get up many times throughout meals to stretch but I did it! And feel darned good about it.

It sucks not being able to have a bath, doesn't it? The little things many take for granted. I want so badly to have long soaks but it is not possible to get up and out of the tub due to muscle wasting and pain.

I force myself to do something I love each day. When things finally begin to melt (hopefully soon!) I cannot wait to plan things in my raised beds (DH built them for me as I cannot bend or kneel and plant) and smell the soil. The robins should be back in 5-6 weeks - their song is so uplifting! Then at the end of May our tulips start blooming. (We have very long winters in northern Alberta.) As I love to cook I make sure to make something lovely each day, even if it is just roasting whole spices, pounding them out in my mortar and pestle, or making pesto. And I dearly love to read. However, as you know, pain can become too much for that, too.

So, please hang in there. Just remember that tomorrow can be a better day and perhaps the day after that can be even better! Before we know it, it will be Spring and the thought of that makes me rejoice. Banish all the negative thoughts as soon as you think them if you can but at the same time realize they are also natural for us humans.



Love2...

You have moved me to tears. Thanks for sharing your story. I am so sorry you have such chronic pain. People tell me I have courage? No, YOU have courage!! I cannot imagine traveling extensively right now as even car rides are so difficult, but I have made myself go places and I do things all the time. I do try to keep a positive outlook at all times; it is not easy as the celiac has "messed with my head" :blink: Having my husband has made things bearable. He's beyond loving and supportive. I think the fact that I am too stubborn to give up or give in also helps :)

Yes, I have heard the same thing--"you have the worst case of trigger points I have ever seen."..um, Gee, thanks!?

Our pain level seems to be similar, just of different origin. I have pushed myself every day to keep living, such as it is. I had to stop some things though as the pain is just too much. I cannot take any medications. Gosh, I wish I could. The BURNING pain is maddening.

I do know what you mean---over $40K in "therapies" testing, etc...just to keep me on my feet. No relief.

I will just keep going!! I never quit. You and I will celebrate the coming of Spring...we still have snow here in in upstate NY..Perhaps we will both see a reduction in pain as the inflammation in the gut--and the whole body--subsides. That would be something! :)

Thanks again for sharing your thoughts with me. You're an inspiration. :) I will talk with you soon...about food and flowers, no doubt!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#38 TSA

 
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Posted 21 March 2011 - 06:04 AM

It sounds like you just have a lot of inflammation and that does respond to the gluten-free diet....over time. Every Celiac has loads of inflammation in their bodies when initially diagnosed so that is normal for this disease.

Do you think there is the possibility that you may have fibromyalgia? Your symptoms sound like that and it's another one of those autoimmune problems, like Celiac.

I also wonder if hypnosis could possibly help you with the pain aspect of things? Would it be possible to be hypnotized and have them make the suggestion that you would not feel the pain on such a great level? Hang in there.....we'll make a human guinea pig out of you yet, if you don't already feel like one! :P


I found your comment about loads of inflammation after being diagnosed interesting. I was diagnosed back in Nov. 2010 with celiac and all the weight I lost (30lbs) has come back (and then some). Every morning I wake up with sore joints. Can you develope fibromyalgia from celiac?
Thnk you! Tammy
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Tammy

Celiac since Nov. 2010

#39 IrishHeart

 
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Posted 21 March 2011 - 08:55 AM

I found your comment about loads of inflammation after being diagnosed interesting. I was diagnosed back in Nov. 2010 with celiac and all the weight I lost (30lbs) has come back (and then some). Every morning I wake up with sore joints. Can you develope fibromyalgia from celiac?
Thnk you! Tammy


Tammy,

Gosh, I would think being gluten-free would help diminish those sore joints, not make them worse. :blink: Most people report lessening of symptoms, unless there is also an undiagnosed condition going on.

My understanding (and believe me, I have read everything I could for 3 years and talked with numerous people with FM, my dear friend included) is that fibromyalgia is often associated with celiac, as is rheumatoid arthritis and lupus and other painful autoimmune diseases. Many people are told they have fibro, when in fact, they have celiac. Some people have BOTH. Sore JOINTS and BONE pain are not the same as fibromyalgia; however, sore joints and muscles are common in celiac. That probably sounded as clear as mud... :lol:

Several people on here were told they had fibro, but now, gluten-free..... they don't...go figure.

The best resource for info on FM is Devon Starlanyl. Everyone else is often ill-informed and lumps all pain conditions under fibro. This leads to misdiagnoses. Like me.

Many people with fibro (but not celiac)have less pain with a gluten-free diet.

Unfortunately, the muscles are considered the "orphan organs" (Dr. Janet Travell called them that and she wrote the book on myofascial pain and trigger points) because they are not anyone's "specialty". There is no "muscle doctor" :unsure: so people tend to go to rheumatologists for their pain. I had 3 rhuemies look at me like I was nuts as I described my burning pain and where it was in me when I burst into flames in Feb. 2008....and one physiatrist told me "fibro doesn't exist". 6 million Americans would disagree with him. Another physiatrist pushed on my neck and without taking any other info from me declared "You probably have fibromyalgia. Go back to your rheumatologist."... Rheumy (whom I had seen for 6 years) declares "Really? How did I miss that?" He never believed that was my problem. "just osteoarthritis"... His idea? Load me with NSAIDs, neurontin, antidepressants (HUH??!) :blink: --result? leaky gut...and more "irritable bowel"....get the picture??? I just stopped taking all that junk as it did nothing for me and made me feel sick and gain weight.

All of my tests for any autoimmune diseases came back NEG. Yet, here I am.

I started to feel achy in my joints back in 1998, right around the time I was diagnosed with "Irritable bowel"...what a bunch of malarkey that diagnosis is...nothing ever resolves with that diagnosis---you just take drugs they throw at you to "symptom resolve." I never got any relief because I had this disease all along! After the joints, the rest of me kicked in gradually.

It's difficult to distinguish between all of these painful conditions. You may want to consult your doctor. 3 rheumatologists, 2 neurologists and 2 physiatrists (and a whole slew of other people who work with pain conditions) could not come to any firm conclusions about me, only saying I have the worst case of muscular trigger points they have ever seen. :blink: (NOT the same as fibro "tender points" they use for diagnosis of that syndrome. There are no blood tests for fibro.)

It hurts to sit and to lay down, even my cheek on the pillow. Jaw & head pain is ugly. This is a central nervous system in overdrive--often a symptom of celiac.

My guess (and one gluten-savvy PT I met) is I have all this head to toe muscle/ligament/tissue/joint/bone pain from inflammation and as the gut heals, I will have to see what resolves and what doesn't. Either way, I have a year of intensive PT ahead of me for severe pelvic floor/butt/leg pain and burning neuropathy due to pudendal nerve entrapment (yes, it is as painful as it sounds)... and how did I develop that one wonders? Chronic inflammation of the bowel from diarrhea/constipation, constant stress from wondering WHY was I was so ill and out of it all the time and no doctor could help me...and a hysterectomy at an early age. I am a mess.

This disease has multiple ramifications if it is not diagnosed properly.

BUTT :) I remain hopeful! I have to!!

Read up on fibro; see if it describes your pain. Hope your pain resolves for you! I wish you well.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#40 TSA

 
TSA

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Posted 21 March 2011 - 09:29 AM

Tammy,

Gosh, I would think being gluten-free would help diminish those sore joints, not make them worse. :blink: Most people report lessening of symptoms, unless there is also an undiagnosed condition going on.

My understanding (and believe me, I have read everything I could for 3 years and talked with numerous people with FM, my dear friend included) is that fibromyalgia is often associated with celiac, as is rheumatoid arthritis and lupus and other painful autoimmune diseases. Many people are told they have fibro, when in fact, they have celiac. Some people have BOTH. Sore JOINTS and BONE pain are not the same as fibromyalgia; however, sore joints and muscles are common in celiac. That probably sounded as clear as mud... :lol:

Several people on here were told they had fibro, but now, gluten-free..... they don't...go figure.

The best resource for info on FM is Devon Starlanyl. Everyone else is often ill-informed and lumps all pain conditions under fibro. This leads to misdiagnoses. Like me.

Many people with fibro (but not celiac)have less pain with a gluten-free diet.

Unfortunately, the muscles are considered the "orphan organs" (Dr. Janet Travell called them that and she wrote the book on myofascial pain and trigger points) because they are not anyone's "specialty". There is no "muscle doctor" :unsure: so people tend to go to rheumatologists for their pain. I had 3 rhuemies look at me like I was nuts as I described my burning pain and where it was in me when I burst into flames in Feb. 2008....and one physiatrist told me "fibro doesn't exist". 6 million Americans would disagree with him. Another physiatrist pushed on my neck and without taking any other info from me declared "You probably have fibromyalgia. Go back to your rheumatologist."... Rheumy (whom I had seen for 6 years) declares "Really? How did I miss that?" He never believed that was my problem. "just osteoarthritis"... His idea? Load me with NSAIDs, neurontin, antidepressants (HUH??!) :blink: --result? leaky gut...and more "irritable bowel"....get the picture??? I just stopped taking all that junk as it did nothing for me and made me feel sick and gain weight.

All of my tests for any autoimmune diseases came back NEG. Yet, here I am.

I started to feel achy in my joints back in 1998, right around the time I was diagnosed with "Irritable bowel"...what a bunch of malarkey that diagnosis is...nothing ever resolves with that diagnosis---you just take drugs they throw at you to "symptom resolve." I never got any relief because I had this disease all along! After the joints, the rest of me kicked in gradually.

It's difficult to distinguish between all of these painful conditions. You may want to consult your doctor. 3 rheumatologists, 2 neurologists and 2 physiatrists (and a whole slew of other people who work with pain conditions) could not come to any firm conclusions about me, only saying I have the worst case of muscular trigger points they have ever seen. :blink: (NOT the same as fibro "tender points" they use for diagnosis of that syndrome. There are no blood tests for fibro.)

It hurts to sit and to lay down, even my cheek on the pillow. Jaw & head pain is ugly. This is a central nervous system in overdrive--often a symptom of celiac.

My guess (and one gluten-savvy PT I met) is I have all this head to toe muscle/ligament/tissue/joint/bone pain from inflammation and as the gut heals, I will have to see what resolves and what doesn't. Either way, I have a year of intensive PT ahead of me for severe pelvic floor/butt/leg pain and burning neuropathy due to pudendal nerve entrapment (yes, it is as painful as it sounds)... and how did I develop that one wonders? Chronic inflammation of the bowel from diarrhea/constipation, constant stress from wondering WHY was I was so ill and out of it all the time and no doctor could help me...and a hysterectomy at an early age. I am a mess.

This disease has multiple ramifications if it is not diagnosed properly.

BUTT :) I remain hopeful! I have to!!

Read up on fibro; see if it describes your pain. Hope your pain resolves for you! I wish you well.

IrishHeart!

Thank you so much for your message. I did have more blood work done last Friday and see my DR. this week to discuss my numbers. I've been gluten-free since Nov. 2010 (not 100% because of mistakes and mishaps), I want to see where my numbers are now. I will keep you in my prayers and I love your spirit! I bet you've helped "many" people with your experiences!

I will read up on fibro and RA and see.

Tammy
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Tammy

Celiac since Nov. 2010




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