Getting frustrated and need advice

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Red_34
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Date Joined Apr 2004
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   Posted 1/12/2010 11:03 AM (GMT -7)   
I used to post on the forum frequently a couple years ago because the docs were telling me that I have Fibro.  But I never felt that I quite fit into the Fibro category.  Well I am going thru the same scenario again.  I have been having a lot of joint pain but nothing has ever shown up on my blood work, MRI's, CAT Scans, Ultrasounds...you name it, I've had it done.  The only thing that has shown some sort of delay was an EMG.  And because nothing is showing up on the tests, they are labeling it Fibro again.  But the thing is, is that I have NO muscle pain.  So can fibro affect ONLY the joints?  And yes it is the joints themselves and not the muscles surrounding them. 
 
I feel as if the doctors are just labeling it as Fibro because they don't know what else to do with me and can't offer an explanation.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis
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Sherrine
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Date Joined Apr 2005
Total Posts : 17094
   Posted 1/12/2010 11:23 AM (GMT -7)   
Sherry, I think you ARE having muscle pain!  Muscle pain with fibro also includes tendons and ligaments.  These help move your body parts.  If they are hurting, it can feel like it's your joints but it actually is caused by sore tendons and ligaments!  If you had arthritis, that would show on an x-ray.  Nothing showed.  Muscle pain doesn't show and that's why they are calling it fibro, I think.
 
I have pain in my hips.  It feels like the joint but I know it's the tendons and ligaments because it comes and goes for me.  I have had bad pain in my toes and fingers too.  My doctor thought I had gout for a while but it was fibro.   It really feels like it's the joints...really! 
 
I had really bad pain in one of my thumbs a few years ago.  Even the bone on the inside of my wrist got puffy and extremely tender.  I could barely use a pen and was practicing how to write with my left hand!  Even fabric touching that wrist would really hurt.  I babied that area because I kind of had to.  I was unable to open jars, too.  I just "knew" it was arthritis!  But it wasn't.  It gradually got better and now I have absolutely no pain in that thumb or the wrist.  I haven't had any pain in that area for about four years  now.  But, Sherry, I could have sworn it was my joint. 
 
So, it's my opinion that is what is really going on with you.  Let us know what you do find out.  We really do care about you.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


RedDiane
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Date Joined Jun 2007
Total Posts : 906
   Posted 1/12/2010 11:35 AM (GMT -7)   
Sherry, when I first got fibro, 25 years ago, I only had occasional pain in my joints. They thought it was lupus for a while, but my organs never got bad. I now feel pain in joints, ligaments, tendons and it seems like my muscles. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


Red_34
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Date Joined Apr 2004
Total Posts : 23413
   Posted 1/12/2010 11:54 AM (GMT -7)   
Thanks, I didn't think about the ligaments and tendons. Would that have shown up on a MRI? I do know I have one area on my left hip that may be arthritis shown on a CAT scan but that one little spot is not enough to cause the issues I am having or so my doc tells me. I do however, have osteo arthritis in my hands - that has been proven and kind of hard to disregard the misshapen finger joints. But I just feel like I'm falling apart and I'm in pain 24/7. I am also going in for a full Lupus work up soon because of rashes and just recently they found blood in my urine (it's gone now though).

Thanks for your input! :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Sherrine
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Date Joined Apr 2005
Total Posts : 17094
   Posted 1/12/2010 12:55 PM (GMT -7)   
Sherry, I don't think anything muscular shows on x-rays and MRI's but I'm not positive about that.  But, what they are doing is ruling out other things that have the same symptoms as fibro.  They need to do that in order to give a definitive diagnosis of fibrl.
 
If you haven't already, check out the Fibro 101 thread...the second thread on the forum.  There are links to all sorts of good info about fibro, including a list of symptoms and a link to What Else Could It Be.  These might help you see what is going on with you. 
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


porkysgal
Regular Member


Date Joined Jan 2008
Total Posts : 94
   Posted 1/12/2010 7:15 PM (GMT -7)   
I thought for sure I had arthritis as like Sherrine my thumb has been very sore at the joint , my hips , knees etc.  But after going the Rhemy having a full set of xrays they say all looked good and it is Fibro. He said it can feel like joint pain but then did the pressure point test and about fell off the table, did not even realize i hurt so bad in all those places
 Deb
Crohns, Fibro


spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 1/12/2010 10:37 PM (GMT -7)   
A PET scan can show fibro in the brain but nobody would want to pay for that.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008

current Rx: MScontin 30mgs 2x, dilaudid 8mgs 4x p.r.n., soma 3x, Arthotec 75mgs\200mcgs 2x, neurontin 300mg HS, vistaril 25mg 3x prn, wellbutrin 150mg 2x(ADHD),Adderall 20mgs 2x(ADHD)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/13/2010 1:55 AM (GMT -7)   
Sherry, I think that tendon and ligament inflammation *might* be able to show up on an MRI. I just had one done and they said that it showed (amongst other things) that I had tendonopathy (?) or something like that, which I *think* is basically inflammation of the tendons...

My gastro has told me (quietly) that fibro can be a bit of an umbrella diagnosis to cover the fact that doctors really don't know what's going on with your body. I'd like to think that good doctors would be a bit more discriminating in giving a patient such a diagnosis, if there really was some doubt about their symptoms, but who knows if that happens.

What other symptoms do you have? Do you have the pressure points, for instance?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/13/2010 1:56 AM (GMT -7)   
ps. Is it possible that you are getting referred pain from your discs?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/13/2010 1:58 AM (GMT -7)   
Oh! Also, remember that fibromyalgia is likely to magnify any pain that you already have, so if you have a little bit of joint pain / inflammation in association with your UC, fibro might make it feel 10, 20 or even 100 times worse. Maybe that's why you're feeling it in your joints?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Red_34
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Date Joined Apr 2004
Total Posts : 23413
   Posted 1/13/2010 5:08 AM (GMT -7)   
I have 3 of the pressure points - 2 in my shoulders blades and 1 on the inside of my right elbow. As for rest of the fibro symptoms that are in the Fibro 101...........well I have just about every one of them! LOL Just kidding, actually I do have many of the symptoms.

I had that thumb pain too and my doc said it was tendonitis. I wore a thumb brace for about a month and a half and it slowly got better.

I went to the doc yesterday and she drew some blood to test my folic acid and B12 because on my last blood test showed that my levels were almost on the deficient side. Do you guys know if low folic acid or B12 can cause joint pains?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 1/13/2010 12:40 PM (GMT -7)   
have you been tested for lyme disease??


If your low in b12 it can cause pains. I take b12 shots. they help a lot and you can do them yourself,
Chronic Lyme Disease
Fibromyalgia

Chronic fatigue syndrome

Polycystic Ovarian Syndrome

Sleep Apnea

Hypothyroidism

Adrenal Fatigue

Type 2 Diabetes


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 1/13/2010 1:01 PM (GMT -7)   
I have been taking folic acid for years to help me absorb nutrients because of Crohn's and I never noticed more pain because of that.  But, if you are deficient in vitamin D, that can cause more pain.  I use Malic acid/magnesium supplements, too, and that has helped with pain and fatigue.
 
As far as muscles, tendons, or ligaments showing up on an MRI, I'm not sure...if you have fibro...because they say that fibro is not an inflammatory illness.  So if the muscles are just sore with no inflammation, it might not show.  I'm just guessing here.
 
Doctors used to use fibro as an "umbrella" illness but I think they are getting more specific now that they realize this really does exist!  There is a link in Fibro 101 called Doctors Respond to New York Times Article.  There you will see what the learned doctors are looking at.  You do need to have a doctor that truly believes this is an illness.  There are some out there that are still skeptical.  My doctor, an Internist, does believe that fibro is an illness.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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