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


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#1 IrishHeart

 
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Posted 18 March 2011 - 06:22 AM

I was hesitant to even post this because I don't mean to whine, but all of you have probably felt this way at some point in the beginning of your healing, too and I know you will understand. I am almost 3 months gluten-free. Some of you know my long story, so I will not repeat it here.

I am having a hard time right now. I am fighting to remain positive. My GI issues are slowly resolving (yaay!) and that awful, scary spaciness is disappearing. I know the gluten-free diet is working and I know I will heal in time.
The really hard part is I am in grueling PT for chronic pain in my neck, back, legs, pelvic floor...and burning neuropathy. I cannot take any medications. They all make me ill.

I am not complaining, honest!

I just want to hear that I am going to heal in time and feel better.

I have been told by the PTs that this chronic pain can resolve! (some doctors told me otherwise, but I do not listen to them anymore. They have been wrong about me all along and I went undiagnosed for years)

It is possible to restore lost muscle mass and function, but that it takes about a year. The muscles that are impaired by tight knots and facsia are really weak and painful. We believe the toxins from a leaky gut and inflammation from gluten are key factors. It hurts to sit, lie down, walk...even my cheek against the pillow hurts because of jaw & facial pain. I can't do any of the things I love, no dancing, swimming,gardening, cooking, even reading. I can only stay on here for an hour or so....
but I will not give up hope!! :) I have things I want to do!!

I have been ill for so long and I know it takes months maybe a year to heal the gut. I accept that and I am actually HAPPY to know it is celiac (yes, I said HAPPY because it is an ANSWER after years of no answers) and willingly do this gluten-free diet because all I want is to get well!! I look at all of this as going forward!! :)

I am just very tired from lack of quality sleep. I am up and dressed every single day not matter how little sleep I get and trying to "live normally" every day.
I am blessed because my husband has been my rock--supportive and loving. My whole life came to a stand-still 3 years ago and I have been trying to reclaim it ever since.


I am soooo grateful for all of you on here. I guess I just need to hear that it is normal to feel a bit discouraged early in the healing process and that things will improve in the coming months. Geesh, I think I just gave this pep talk to someone else---why can't I see it myself? I have no doubt I will get well, I am just sagging today....

Guess I am looking for a pep talk. :) I have tried to be so strong for years but I am running out of gas.

Anyone have one handy??? Thanks for listening. This forum has been a lifeline for me!! :) Bless you guys!!
  • 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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#2 jerseyangel

 
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Posted 18 March 2011 - 06:37 AM

Oh IrishHeart, I understand and want you to know that--yes! you will continue to improve. It may be in "fits and starts" at first, especially since you were so sick for so long.

I think it's amazing how you jumped in here with so much encouragement and support for others--let us do the same for you now ;)

It's normal to think about all the time already spent on being ill and the long road to figuring it all out--it's hard but we need to look forward and know that there is light at the end of the tunnel! You are doing great and days like this are inevitable. Take the time to feel what you need to and then forge on--it's all going to be ok :D
  • 2
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#3 ndw3363

 
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Posted 18 March 2011 - 06:52 AM

Finding out what the problem is is a very important first step. Especially after being ill for so long. It's only normal to become a bit impatient to feel better once you actually KNOW what caused the problem in the first place. It took years for your system to get so messed up - but hopefully (for all of us), it won't take nearly that long to heal the damage. I'm so sorry to hear you are having such trouble. Have you seen a naturopathic physician? They might be able to recommend something for the pain that won't make you sick. Not cheap, but I've had great results in the past. Maybe acupunture? I really hope you feel better soon. That "I can't get comfortable" feeling is the worst - physically and emotionally.
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#4 ciavyn

 
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Posted 18 March 2011 - 06:53 AM

You aren't complaining -- that is the least amount of complaining I've ever heard! ;) But you are tired. Tired of struggling, of being in pain, of not sleeping. I wasn't able to sleep for about two months recently, and I was miserable. But you'll get through it, and you will feel better. It sounds like you are focused and finally have a concrete answer. Hang in there, and know that you are an inspiration to many.
  • 2
Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#5 ravenwoodglass

 
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Posted 18 March 2011 - 07:01 AM

I sure do wish we could just flip some switch and be instantly healed. Glad to hear you are making some progress and it will continue. Not being able to sleep is hard and while I admire your determination to get up and moving, and we do need to do that, if you can sleep do sleep. Sleep helps the body heal and if it means getting up a bit later for a bit there is nothing wrong with that. We just went through a time change so if you can avoid what is effectively getting up an hour early you may want to do so. If you can nap, nap. Have you ever done any yoga? Sometimes the more gentle stretches may help. I also found long hot soaks in the tub or even frequent hot showers to help relieve some of the muscle tightness.
I do hope you are dancing and doing everything you enjoy without pain soon.
(((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))
  • 2
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 ravenwoodglass

 
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Posted 18 March 2011 - 07:06 AM

Maybe acupunture?

Great thought. If you have an acupuncturist near you and you haven't tried it you may want to try a couple of sessions. I found them to be very helpful even before I went gluten free. I don't know why it worked but it did. My guy used a combo of the needles and heat lamps. I have livedo reticularis and was purple before diagnosis. I would lay down on the table purple and be a normal color when the session was finished. Of course as soon as I went home and ate my whole wheat bread I was purple again. :blink:
It may help a great deal.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 IrishHeart

 
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Posted 18 March 2011 - 07:36 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!
  • 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


#8 lynnelise

 
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Posted 18 March 2011 - 07:53 AM

Are you taking B12 suppliments? I had a lot of pain with numbness and tingling when I was low on B12. I got injections for awhile and they really helped!

I don't know how much mobility you can handle but Netflix has quite a few Yoga workouts for aches and pains on demand.

I think as you continue to heal you will find a lot of your issues going away and you will be feeling tons better! :) Try to pamper yourself where you can in the meantime to keep your spirits up! Maybe a manicure or pedicure? Rest as much as you can. Treat yourself to gluten free goodies now and then!
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#9 IrishHeart

 
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Posted 18 March 2011 - 08:03 AM

Are you taking B12 suppliments? I had a lot of pain with numbness and tingling when I was low on B12. I got injections for awhile and they really helped!

I don't know how much mobility you can handle but Netflix has quite a few Yoga workouts for aches and pains on demand.

I think as you continue to heal you will find a lot of your issues going away and you will be feeling tons better! :) Try to pamper yourself where you can in the meantime to keep your spirits up! Maybe a manicure or pedicure? Rest as much as you can. Treat yourself to gluten free goodies now and then!



Thanks, hon!! yes, all my vitamins are on board and I have great levels! I supplemented for years...my D, Bs, B-12 etc....all good.

I see a PT for severe pelvic pain, so some yoga is off limits for me....but I do what I can and I do love it!


I agree---I think when the inflammation in the gut goes down and the muscles & tissues clear of the gluten, I should see more healing. Right now, it is just so painful....I'll get there.
  • 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


#10 Takala

 
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Posted 18 March 2011 - 08:13 AM

Yes, you can heal. You may never get to where you can completely get rid of the discomfort, but you are capable of getting to where you can ignore it. Most of the neuropathy should go away if you stick to the gluten free diet.

Try altering your sleeping position. I hardly ever sleep in a "conventional" position anymore, except for naps or short periods of time. Instead, I use pillows and/or bedwedges to prop myself up into a semi reclined position, and I am really careful about my neck. Sometimes I will prop one or both knees up with another pillow. I also have a lot of pillows on the couch for this. The difference between sleeping flat and slightly upright is stunning, it's the difference between being able to walk normally in the morning and having to take several hours to loosen up in my hips and lower back.

If I am going to have to be loose the next day, I may deliberately go short on sleep, because 8- 9 hours in a bed will just make me stiffer.

I also will sleep when I need to, and stay awake when I want to. I respect my biological cycles, which may be different than other people's. If I'm awake, I try to use the time to do what needs done, and if I need a nap before dinner, I take it. It's really, really hot here in the summers sometime, I've been known to go down to the barn and clean stalls at 2am to beat the heat, the horses are the same way, they will be up and awake and eating hay or grazing when it's cool, and sleeping when it's warm and quiet. They might sleep between 10pm and 3 am, and then take a nap in the mid morning when it first starts to warm up, and then be active in the early evening again. I also know that if I want to be able to sleep, I need to get some exercise. There is nothing like a little late afternoon exercise to make one sleep like a rock. :)
  • 2

#11 Gemini

 
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Posted 18 March 2011 - 08:26 AM

I was hesitant to even post this because I don't mean to whine, but all of you have probably felt this way at some point in the beginning of your healing, too and I know you will understand. I am almost 3 months gluten-free. Some of you know my long story, so I will not repeat it here.

I am having a hard time right now. I am fighting to remain positive. My GI issues are slowly resolving (yaay!) and that awful, scary spaciness is disappearing. I know the gluten-free diet is working and I know I will heal in time.
The really hard part is I am in grueling PT for chronic pain in my neck, back, legs, pelvic floor...and burning neuropathy. I cannot take any medications. They all make me ill.

I am not complaining, honest!

I just want to hear that I am going to heal in time and feel better.

I have been told by the PTs that this chronic pain can resolve! (some doctors told me otherwise, but I do not listen to them anymore. They have been wrong about me all along and I went undiagnosed for years)

It is possible to restore lost muscle mass and function, but that it takes about a year. The muscles that are impaired by tight knots and facsia are really weak and painful. We believe the toxins from a leaky gut and inflammation from gluten are key factors. It hurts to sit, lie down, walk...even my cheek against the pillow hurts because of jaw & facial pain. I can't do any of the things I love, no dancing, swimming,gardening, cooking, even reading. I can only stay on here for an hour or so....
but I will not give up hope!! :) I have things I want to do!!

I have been ill for so long and I know it takes months maybe a year to heal the gut. I accept that and I am actually HAPPY to know it is celiac (yes, I said HAPPY because it is an ANSWER after years of no answers) and willingly do this gluten-free diet because all I want is to get well!! I look at all of this as going forward!! :)

I am just very tired from lack of quality sleep. I am up and dressed every single day not matter how little sleep I get and trying to "live normally" every day.
I am blessed because my husband has been my rock--supportive and loving. My whole life came to a stand-still 3 years ago and I have been trying to reclaim it ever since.


I am soooo grateful for all of you on here. I guess I just need to hear that it is normal to feel a bit discouraged early in the healing process and that things will improve in the coming months. Geesh, I think I just gave this pep talk to someone else---why can't I see it myself? I have no doubt I will get well, I am just sagging today....

Guess I am looking for a pep talk. :) I have tried to be so strong for years but I am running out of gas.

Anyone have one handy??? Thanks for listening. This forum has been a lifeline for me!! :) Bless you guys!!


Hon....sounds like you need a pan of gluten-free brownies, along with a good acupuncturist!
I am not being snarky but for this type of chronic problem, western medicine is very bad and eastern medicine is very good. I would strongly recommend trying to contact one and have a consult with them. They do very good things.

And yes, you will get better....I promise. Your attitude is good for someone in such remarkable pain and that goes a long way in getting you there. It took me a grand total of 3 years before the vast majority of symptoms all went away but go away they did and haven't returned. It may not take you that long so please do not worry about that number. Having a husband like yours will guarantee a recovery. I know because my husband is the same....he took his marriage vows very seriously and has never deserted me emotionally in those 3 years of recovery.

Maybe a Celiac support group may help you to cope and stay sane? Aside from your on-line one? :)
  • 1

#12 dhd2000

 
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Posted 18 March 2011 - 09:24 AM

Have you thought about something like accupuncture? That has worked miracles for me in the past. Good luck and hang in there, you will continue to improve!!

Dee in NC
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#13 IrishHeart

 
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Posted 18 March 2011 - 10:09 AM

Thanks, all you sweet people... :) I just needed to hear it will get better.

YES, I had over 40 sessions of acupuncture. No change. Over 100 sessions of myofascial release. 57 chiropractic visits. 6 months of PT. A rolfer. We even traveled to a pain clinic in another state for trigger point therapy!

It hurts to lay down. to sit. to stand. to walk. I just keep changing what I am doing all day long because too long at one thing hurts. Have you ever had a pulled muscle? That's what I feel like--from head to toe.... but also on fire!! If you have never read about trigger points, that's what I am filled with. (NOT FIBRO TENDER POINTS--those are different)..It's insane really and I do not know how I stay sane, reasonably humorous and haven't jumped off a bridge by now. It's been really bad.

okay, I am going with the thought that TIME is the key.

Thanks. Consider yourselves hugged!
  • 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


#14 Gemini

 
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Posted 18 March 2011 - 10:44 AM

Thanks, all you sweet people... :) I just needed to hear it will get better.

YES, I had over 40 sessions of acupuncture. No change. Over 100 sessions of myofascial release. 57 chiropractic visits. 6 months of PT. A rolfer. We even traveled to a pain clinic in another state for trigger point therapy!

It hurts to lay down. to sit. to stand. to walk. I just keep changing what I am doing all day long because too long at one thing hurts. Have you ever had a pulled muscle? That's what I feel like--from head to toe.... but also on fire!! If you have never read about trigger points, that's what I am filled with. (NOT FIBRO TENDER POINTS--those are different)..It's insane really and I do not know how I stay sane, reasonably humorous and haven't jumped off a bridge by now. It's been really bad.

okay, I am going with the thought that TIME is the key.

Thanks. Consider yourselves hugged!



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
  • 1

#15 IrishHeart

 
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Posted 18 March 2011 - 10:55 AM

well,gemini, hypnosis is about the ONLY thing left I haven't tried... :lol: I may give it a go.

I meditate and try to use all I learned in biofeedback.

The rheumatologists (3 of them) and 2 physiatrists said I do not "present with typical FM" (and my best friend with FM says she doesn't feel like I do)...and I never thought I had that either. Widespread inflammation and trigger points are different from tender points of FM from all I have read. They refer pain to distant places and are knots in taut bands in the muscle. Plus, I do not mind being touched during massage (except for those knots) and oddly, I have remarkable flexibility. I can do the yoga, just not for long due to weakness.

I think the bone pain is def. a gluten thing....as I have no rheumatoid factors either...been tested repeatedly.....strange huh?? :blink:
  • 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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