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Muscle Weakness And Pain


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31 replies to this topic

#1 answerseeker

 
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Posted 22 October 2013 - 07:39 AM

I've been gluten free since July but still getting new or increased symptoms. GI symptoms are pretty much gone but I am experiencing bad muscle pain and weakness. I'm finding it hard to even open a package of crackers and can barely hold my blow dryer up to dry my hair. My finger tips feel cold and tingle sometimes.

I'm having a hard time sleeping with this. My pillow feels more like a brick on my neck then a soft pillow because of the neck pain. I toss and turn throughout the night trying to find a comfortable position

My legs feel like they are going to give out on me. You know how your legs feel after a long bike ride wobbly and "spaghetti legs" that's how they feel, walking up the stairs is a chore.

There's also the red rash I get. They are red dots not bumps and don't itch. I think from pictures it's petachie but of course doc says "blood work looks normal".

I'm feeling like going to the dr will be useless, is this just something that will pass with time?
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


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#2 flowerqueen

 
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Posted 22 October 2013 - 08:00 AM

I've been gluten free since July but still getting new or increased symptoms. GI symptoms are pretty much gone but I am experiencing bad muscle pain and weakness. I'm finding it hard to even open a package of crackers and can barely hold my blow dryer up to dry my hair. My finger tips feel cold and tingle sometimes.

I'm having a hard time sleeping with this. My pillow feels more like a brick on my neck then a soft pillow because of the neck pain. I toss and turn throughout the night trying to find a comfortable position

My legs feel like they are going to give out on me. You know how your legs feel after a long bike ride wobbly and "spaghetti legs" that's how they feel, walking up the stairs is a chore.

There's also the red rash I get. They are red dots not bumps and don't itch. I think from pictures it's petachie but of course doc says "blood work looks normal".

I'm feeling like going to the dr will be useless, is this just something that will pass with time?

 

I know exactly what you mean!  Before I was diagnosed with Celiac disease I was so scared, I too was very weak.  I needed a walking stick just to walk very short distances.  I would describe it as being like a bag of jelly (Jello?), even when resting I felt like I had an inner shaking, not visible on the outside, my hair was falling out too.  Do you know what bloods you had done?  I was found to have extremely low ferritin levels at the time and other vitamin/mineral deficiencies.
 
It took a little while to get things back to 'normal' and just when I had got to reasonable health - bearing in mind my other illnesses, when it started all over again.  I finally (by a lot of research) found that if you have low magnesium levels it can cause problems with muscles and I now take a supplement daily, along with zinc,  which helps it work better and also Vitamin B complex.  Now, I can't say definitely that yours will be the same, but it is worth looking into.  Also, don't expect an over-night result, as I was taking it for a few weeks before I started to notice the difference, but I hope my experience helps you and gives you some hope.
 
I'm sorry I don't know much about the rashes etc., I hope someone on here is able to help you with this.

  • 2
Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#3 captaincrab55

 
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Posted 22 October 2013 - 08:06 AM

I've been gluten free since July but still getting new or increased symptoms. GI symptoms are pretty much gone but I am experiencing bad muscle pain and weakness. I'm finding it hard to even open a package of crackers and can barely hold my blow dryer up to dry my hair. My finger tips feel cold and tingle sometimes.

I'm having a hard time sleeping with this. My pillow feels more like a brick on my neck then a soft pillow because of the neck pain. I toss and turn throughout the night trying to find a comfortable position

My legs feel like they are going to give out on me. You know how your legs feel after a long bike ride wobbly and "spaghetti legs" that's how they feel, walking up the stairs is a chore.

There's also the red rash I get. They are red dots not bumps and don't itch. I think from pictures it's petachie but of course doc says "blood work looks normal".

I'm feeling like going to the dr will be useless, is this just something that will pass with time?

answerseeker,    Two things come to mind,

 

1, See a Dermatologist

 

2,  Have your Vitamin levels checked.

 

My Vitamin D was dangerously low and it took 9 months of Prescription strength VITAMIN D to bring it up within a normal level.   As it came up, my neck, shoulder, arms, hands, fingers, back, and other joint pain found relief.    


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I'm a New Man Without GLUTEN!

#4 answerseeker

 
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Posted 22 October 2013 - 08:19 AM

answerseeker, Two things come to mind,

1, See a Dermatologist

2, Have your Vitamin levels checked.

My Vitamin D was dangerously low and it took 9 months of Prescription strength VITAMIN D to bring it up within a normal level. As it came up, my neck, shoulder, arms, hands, fingers, back, and other joint pain found relief.


Vit D was at 38 in July doc says normal
B12 was at 482
Ferritin 31 just this month
Magnesium was 1.9

Kaiser doctors say all normal. The only abnormal was very low alkaline phosphate and they said its not a concern :-/
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#5 nvsmom

 
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Posted 22 October 2013 - 08:38 AM

This has a list of causes of petechia (tiney red dots). I had those when I had ITP (very low platelet count) so I know it can be serious, but simple causes like coughing fits can cause it too.

 

I hope you find answers.,


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#6 shadowicewolf

 
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Posted 22 October 2013 - 09:02 AM

Two things:

 

What are you doing for exercise?

 

Do you have any intolerences?


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#7 GF Lover

 
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Posted 22 October 2013 - 09:09 AM

I get the red dots too.  Have for years.  I see a dermatologist every 3 months and they don't seem to be a concern since my blood work and vitamins hover in the normal range.  I have no working theory about these dots so I am interested in what you guys think too.

 

Colleen


  • 0

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#8 answerseeker

 
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Posted 22 October 2013 - 09:18 AM

Colleen, look at my blog post picture, does yours look like that? That's the rash I get (red dots all over) not raised just flat

I *think* it comes after being glutened but still keeping track to see if it is indeed from gluten
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#9 frieze

 
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Posted 22 October 2013 - 09:18 AM

Vit D was at 38 in July doc says normal
B12 was at 482
Ferritin 31 just this month
Magnesium was 1.9

Kaiser doctors say all normal. The only abnormal was very low alkaline phosphate and they said its not a concern :-/

Vitamin D should be over 50, b12 over 500 (that one is close) ferritin I am not sure.. and magnesium should be in upper range of normal , ie closer to 2.5.  good luck

and if the little red dots are petechial, perhaps some K2?


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#10 answerseeker

 
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Posted 22 October 2013 - 09:20 AM

Two things:

What are you doing for exercise?

Do you have any intolerences?


Yoga but I've missed the last 2 weeks due to this. My asthma has been bad too because of fall allergies.

Just lactose but I drink lactose free milk. Don't think I have any others but I will keep an eye out for a link between food and how I'm feeling
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#11 GF Lover

 
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Posted 22 October 2013 - 09:26 AM

Colleen, look at my blog post picture, does yours look like that? That's the rash I get (red dots all over) not raised just flat

Nope.  Mine are different.  They look like someone took a red ball point pen and made dots.  Yours definitely looks like a reaction to something.  Do you have any known allergies?  Changes in detergents or anything? 

 

Colleen


  • 0

HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

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#12 answerseeker

 
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Posted 22 October 2013 - 09:31 AM

Vitamin D should be over 50, b12 over 500 (that one is close) ferritin I am not sure.. and magnesium should be in upper range of normal , ie closer to 2.5. good luck
and if the little red dots are petechial, perhaps some K2?


Wow! I guess that's Kaiser for you. I've read Ferritin should be at least 50 but not sure either. My GI dr suspects either K or C because I get bruises that come from nowhere but of course Kaiser doesn't test for those :-/

It's really difficult to get any help from my Dr when every Kaiser Dr I've seen says my blood work looks "great"
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#13 answerseeker

 
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Posted 22 October 2013 - 09:34 AM

Nope. Mine are different. They look like someone took a red ball point pen and made dots. Yours definitely looks like a reaction to something. Do you have any known allergies? Changes in detergents or anything?

Colleen


Ok guess its derm time then. It came on hours after getting glutened (I had fried rice from Panda Express) but it comes and gos so I've just been taking pictures and hoping the derm can go off them
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#14 GF Lover

 
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Posted 22 October 2013 - 09:58 AM

yup.  Derm Time.  Let us know how it goes :)

 

Colleen


  • 0

HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

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#15 NoGlutenCooties

 
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Posted 22 October 2013 - 10:02 AM

Vit D was at 38 in July doc says normal
B12 was at 482
Ferritin 31 just this month
Magnesium was 1.9

Kaiser doctors say all normal. The only abnormal was very low alkaline phosphate and they said its not a concern :-/

 

Vit. D should be closer to 50.

With muscle pain, magnesium and potassium come to mind.

With general weakness, B vitamins such as a good B-complex comes to mind.

 

Your "spaghetti legs" comment reminds me of how I felt when I had low blood sugar.  Try making sure you get enough protein, in small amounts throughout the day - rather than trying to just eat 3 meals per day.


  • 1

Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013





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