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Old 01-31-2010, 05:33 PM   #1
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Can I have Fibro w/out Any trigger points?

Hi,

I hope someone can jump in here. Thank you in advance!

Last year out of NOWHERE I began having horrible muscle/joint pain. EVERY muscle! Calves, thighs, lower AND upper arms, shoulders, neck. ALL joints, Fingers, wrists, feet & ankles. If I poked myself on my body it hurt! Crossing my legs hurt! The pain lasted 3 months, Intensity changing but not going away until after 3 months.

Tired!

I had a bone marrow, CTs to check for Lymphoma, EMGS to check for muscle damage, MRI to check MS.

My Dr ran all bloodwork which was negative.

ANA
ESR
DNA
SSA
SSB
Western Blot
PT
PTT
Cardiolipins igg/igm
Aldolase
Ck
RF
Lyme
Mono
Cardio CRP
CBC w/ differential

I saw a Rhematologist ... said all the bloodwork was normal, did not suspect lupus or Fibro. Thought it was possibly from being on Crestor. I had stopped the Crestor at the onset of this muscle/joint pain 3 months earlier. My Cardiologist at the time said he DID NOT think it was Crestor because after I stopped it, I still had pain for 3 months (A long time in his opinion to be as bad as I was w/ the pain). Besides, the pain did not diminish daily. It just changed intensity. One day AWFUL, One day tolerable, the next not so bad, then HORRIBLE, ect....

The Musclepain got so bad I went to the City to be checked for ALS.


(After 5 months, when I was 2 months Pain free, I went back on Crestor) It is for choloesterol.

Ive been back on it for 9 mo's. January 10th (Nine months after starting the medicine again) I AM back with HORRIBLE Muscle/joint pain! Same exact thing.
My cardiologist, again DOES NOT think its the Crestor. IN FACT he said its IMPOSSIBLE. Says Crestor is out of your system in 2 weeks, 4 MAX!!
After all 9 months, I was fine & AGAIN, Ive been off it 3 weeks already..I have stopped it & went to a Rhematologist here in NY who does research for Lupus & spent an extensive amount of time w/ me.
She repeated the EXACT same bloodwork & feels its not Lupus or Fibro.


I AM IN SOOO MUCH PAIN!!! I FEEL LIKE MY BODY HAS BEEN BEATEN UP SOO BAD! As if Im ALL bruised and if you hug/poke me, IT HURTS!!!!! When I lie down to go to sleep, My body hurts from the pressure of being against the bed! :-((( Is this Fibro? My joints hurt too.


HELP! Please! Your thoughts are priceless!


Bless you all! Thank you for taking the time to read!
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Last edited by confused725; 01-31-2010 at 05:33 PM.

 
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Old 01-31-2010, 11:35 PM   #2
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

HI Confused - I would go straight back to the rheumotologist and ask her what it is then - I'd also want to know on what basis she says it's not fibro. What you describe sounds very like fibro (and of course may not be, I'm not a doctor!). For a fibro diagnosis you have to have had widespread pain for 3 months, pain at 11 of the 18 tender points and pain in all 4 quadrants of the body - bloods/x rays etc etc are done to rule out anything else. Hope this helps
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Old 02-01-2010, 04:01 AM   #3
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

Does she even know how to check for fibro? did she do the trigger/tender point test on you? I'll tell you one thing. I was on fosomax for almost a year. That doubled the pain of the fibro PLUS was really doing a thing on my spine. You could hear me screaming from pain down the block. I asked the doctor if it could be the fosomax, answer was no, that was only after being on it for 3 months. At 6 months again, the answer was no, said it was just the fibro. At one year i did research, talked to numerous people on it, they experienced spine pain plus other pains they didnt have before and none of them had fibro.

I stopped the fosomax, within 2 months i was feeling better, well better because i didnt have the EXTRA muscle and spine pain on top of the fibro pain.

Well, now of course they say the fosomax can cause severe muscle pain, and my doc has taken some of her patients off of it due to their complaining. So you never know what it can be causing the pain. If i were you, id also your rheumotologist what else it could be, OR id get another opinion from another one. This is from just one site but almost all say the same : "If you develop severe bone, joint, and/or muscle pain at any time, contact your doctor. FOSAMAX AND FOSAMAX PLUS D may cause jawbone problems in some people. Jawbone problems may include infection, and delayed healing after teeth are pulled."

So you never know if it can be a med youre taking or something else. Back then, some docs simply refused to believe fosomax could cause severe bone, joint and or muscle pain. So they learn something new all the time.
So sorry youre hurting so much

Last edited by Jenetti; 02-01-2010 at 04:02 AM. Reason: to add spaces

 
Old 02-01-2010, 07:58 AM   #4
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

confused725,

Do you have any weakness in your arms and/or legs? Is it hard for you to walk?
You pretty much described what my wife was going through last year.
She had all those same tests you had and then some.
It ended up being a compressed spinal cord in her neck.

I noticed you had an MRI of your brain, did you get one of your cervical spine?

 
Old 02-01-2010, 03:06 PM   #5
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

My Rheumatologist said you did not have to have trigger point pain to have fibro. Anyone else told that?

 
Old 02-01-2010, 03:33 PM   #6
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

HI Sophie - my understanding is that there is a difference between tender and trigger points. There are 18 tender points on our bodies and everything I've read about fibro says that in order for fibro to be diagnosed 11 or more of them need to cause you pain. We can have lots and lots of trigger points (knots in our muscles that in themselves are sooo painful and then they refer pain to other parts of our bodies) These are what therapists work on with trigger point therapy/massage - unsure whether everyone has these with fibro - I have what feels like millions of them! Hope this helps
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Old 02-01-2010, 05:26 PM   #7
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

Hi Jerden,

Believe it or not, I did have the MRI of the cervical spine. Go Figure! Thx for thinking & replying. You just never know!

I hope your wife is doing better & Bless her for having someone as compassionate as yourself. We should all be that lucky!


Quote:
Originally Posted by jerdan View Post
confused725,

Do you have any weakness in your arms and/or legs? Is it hard for you to walk?
You pretty much described what my wife was going through last year.
She had all those same tests you had and then some.
It ended up being a compressed spinal cord in her neck.

I noticed you had an MRI of your brain, did you get one of your cervical spine?
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Old 02-01-2010, 05:33 PM   #8
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

Ya Know sweetlife, I took your advise! I called the rhemy today & straightout said, If I dont have lupus or Fibro, what the hell is wrong with me?

Im sooooooooo discouraged & have been crying all day in Pain! My joints & Muscles hurt so bad!

She said There IS NOTHING that points to inflamation, no swelling, all bloodwork clear & RIGHT now she says its not Lupus. No Fibro points, not Fibro! She doesnt know!

I personally have got a bad feeling, that its lupus 7 its just an amount of time before the bloodwork shows a positive.

Pray for me that im wrong.

Thx for your support!







Quote:
Originally Posted by thesweetlife View Post
HI Confused - I would go straight back to the rheumotologist and ask her what it is then - I'd also want to know on what basis she says it's not fibro. What you describe sounds very like fibro (and of course may not be, I'm not a doctor!). For a fibro diagnosis you have to have had widespread pain for 3 months, pain at 11 of the 18 tender points and pain in all 4 quadrants of the body - bloods/x rays etc etc are done to rule out anything else. Hope this helps
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Old 02-01-2010, 05:35 PM   #9
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

Hi Jenetta,

Is that so? I wish I knew........My rhemy says no but who knows?



Quote:
Originally Posted by sophie56 View Post
My Rheumatologist said you did not have to have trigger point pain to have fibro. Anyone else told that?
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Old 02-02-2010, 08:46 AM   #10
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

Yes, a book I have says that trigger point pain (and trigger points) is more common in chronic myofascial pain. Personally I'm having trouble figuring out the difference between FMS pain and CMP, since the book is about both and gets fairly technical. I guess it would help if I could concentrate long enough to read more than a couple of pages.

 
Old 02-02-2010, 09:35 AM   #11
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

Hi Cwooten,

Thx....Maybe I should have been more specific. I dont have trigger OR Tender points...........OR are they the same?

THX
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Old 02-02-2010, 10:02 AM   #12
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

No confused, FMS tender points are 18 specific spots on the body; if you exhibit tenderness in at least 11 of them, it normally points to one having FMS. Trigger points are hyper-sensitive lumps or lumpy areas in varying spots in muscles. I myself have several in my arms and thighs, and one big one in my right buttock.

 
Old 02-02-2010, 10:56 AM   #13
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

HI Confused - you're doing absolutley the right thing by keeping on at them - I'm sorry you are in so much pain and I know not knowing what is wrong makes all of us more anxious which then increases the pain.
How about going to a physical therapist and asking them to give you a VERY light massage so they can figure out what trigger points you have (not the tender points - very confusing) - he/she will be able to feel them very easily - I go once or twice per week to have them worked on with either a light massage or trigger point release
I have no inflammation or swelling (so the doctors tell me but it certainly feels like I have some days)
How about gettig a second opinion from another rheumotologist x
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Old 02-02-2010, 11:36 AM   #14
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

Cwooten & Sweetlife,

Thx again!

So they are different! Interesting! I dont have any...I dont think. Dr says she didnt note any.

Ive been to 2 Different Rhemys here in NY. Both Top of the line (If that even exists anymore).
Both say, All bloodwork is good & believe me, they did an extensive panel. I think i posted that somewhere around here.

So they ruled out Lupus for you two as well?

Basically, I have no answers..........

Last year I had the same thing. Horrible Muscle/joint pain & tenderness that lasted 3 mo's. After 10 Dr's from my primary to Neurologists, to rhemys, Nothing was found.

It dissapeared until 1 year later (Now) & so until now, the Drs thought maybe I had some weird virus. Well, low & behold, here it is again...........Its a flare BUT a Flare of what? Lupus, Fibro? Ughhhhh.....Im disgusted!

TY Kindly for listening & sharing!
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Old 02-02-2010, 12:22 PM   #15
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Re: Can I have Fibro w/out Any trigger points? PLEASE PLEASE READ!! I NEED help!

I wish I could help more - my blood work/x rays etc all came back perfect......a bit of a puzzle for you. Im relatively new to fibro - just diagnosed 12 months ago and joined this forum 6 months ago - there are some people who have been here a long while who may have some other thoughts for you x
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