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Old 08-05-2012, 05:23 PM   #1
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Bone pain and fibromyalgia... a bit lost

Hello everyone.

I'm on the medical hamster wheel , a little lost and a whole lot scared.

Do any of you have radiating bone pain with fibromyalgia. I ask because I have pain in my shins, ankles, feet, forearms, wrists hands that comes and goes, moves and alters all the time. I do have the odd moment when I don't have any pain, I spend that time mostly thanking God for it!

I've gone from the Sclero clinic to waiting for 3 months for an appt with the endocrin metabolist.

Bone pain...scary thing. Your head goes to bone cancer or myeloma...well mine does.

So...does anyone here get bone pain and how did you go about seeing what doctor to help you. I keep getting pushed from pillar to post and feel like I'm wasting a lot of good life, and living in fear. I hate this.

 
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Old 08-05-2012, 06:08 PM   #2
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Re: Bone pain and fibromyalgia...a bit lost

I think a LOT of people get put into a fibromyalgia basket that don't belong there. Some of those might have a more specific diagnosis if one looked below the surface. Deep aching pain as well as joint pain can be a symptom of a number of things, most falling into the autoimmune category. If you have not had a thorough work up for autoimmune diseases, I would start there with a rheumatologist. Vit D deficiency seems to cause bone pain as well, and can be measured in the blood and supplemented easily. Myeloma typically causes long bone pain but not joint pain. It is usually in people over 50-60.

 
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Old 08-06-2012, 08:44 AM   #3
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Re: Bone pain and fibromyalgia... a bit lost

I do.

But it does get more complicated. I also have MCTD. I cannot tell by the pain which it is. I have to have bloodwork.
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Old 08-06-2012, 09:00 AM   #4
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Re: Bone pain and fibromyalgia... a bit lost

Just a suggestion-when you get bloodwork this time ask Dr to check your muscle enzymes. That often gets overlooked, and myositis (muscle inflammation) can occur in MCTD and feels deep and aching like bone pain.

 
Old 08-06-2012, 03:05 PM   #5
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Re: Bone pain and fibromyalgia... a bit lost

Look into vitamins and mineral, including but not exclusively Vit D, Cal/mag, B12.

 
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Old 08-11-2012, 10:50 AM   #6
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Re: Bone pain and fibromyalgia... a bit lost

i have severe bone pain and stabbing feeling, like someone is pushing a skewer in me.
started with ankles, then wrists then elbows then shoulders now everyplace!

I was dxed with fibro in Fb but now i am looking into Lyme.

feels like my bones are fragle and all my tests look good even bone scan just a little loss, age 50,

i am on the lyme hamster wheel. please get a lyme test. i am waiting on my 3rd as they are very in accurate and the longer one has it the harder it is to detect.

i saw some videos of people in pain on you tube who have lyme for sure and they look luke me. so ..
just a thought.

hot bath helps..
Vit D!

 
Old 08-11-2012, 10:52 AM   #7
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Re: Bone pain and fibromyalgia... a bit lost

i have severe bone pain and stabbing feeling, like someone is pushing a skewer in me.
started with ankles, then wrists then elbows then shoulders now everyplace!

I was dxed with fibro in Feb but now i am looking into Lyme.

feels like my bones are fragle and all my tests look good even bone scan just a little loss, age 50,

i am on the lyme hamster wheel. please get a lyme test. i am waiting on my 3rd as they are very in accurate and the longer one has it the harder it is to detect.

i saw some videos of people in pain on you tube who have lyme for sure and they look luke me. so ..
just a thought.

hot bath helps..
Vit D!

 
Old 08-11-2012, 12:43 PM   #8
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Re: Bone pain and fibromyalgia... a bit lost

I have bone pain which started earlier this year. Had arthritis labs done and came up negative but yet MRI shows arthritis in my right knee which has been extremely painful for me. I want my labs drawn again. Hope you get answers soon on why you are having bone pain. Hugs!!!

 
Old 08-12-2012, 03:12 PM   #9
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Re: Bone pain and fibromyalgia... a bit lost

Thank you everyone.

It's been a month since the pain really started and I've seen a rheumatologist. Actually I saw the Sclero doc at Northwestern in Chicago, who is a rheumatologist.

She saw all my labs, I've had 5 sets of labs in the last month. The only thing that shows is a high ANA 1:640 with centromere pattern.

She feels I don't have sclero, but she feels this is some sort of issue that I need to see an endocrinologist for. One who specializes in metabolism issues.

The pain is non existent for the most part, in the morning. Upon waking and getting up and around it kind of starts as a migrating ache. My muscles feel sore like I worked out like a fiend the day before and am paying for it today.

I also have to tell you this pain roves. From one leg, to the other, to the arms and wrists into my hands.

I'm still scared to death of multiple myeloma but my blood work showed no proteins. To calm my fears my doctor is running a urine collection (24 hours) to check for proteins there.

My sister (a nurse) also suggested a lyme test. I will ask about that this week. Do you remember h aving been being bitten by a tick? I don't remember that, but I do remember a sore on my leg that took forever to heal.

One other thing with this, if I sit for a while, it is like I am sore and stiff. If I move I feel better. Walking is no problem, in fact it somehow helps.

My Calcium was ok, altho I am regularly hypercalcemic. My parathyroids have been tested like crazy.

Doc just ran a CBC on Friday. But all the levels, except for VitD and ANA are well within the normal range so far.

This not knowing is rough. I'm just tired of being tired and hurty. Heat pads and baths are my best friends right now.

I have a TENS, maybe I'll start using that.

The doctor also said if it were myeloma, the protein levels would have shown somethng and my pain wouldn't be so transient???

I'm just bummed and tired.

 
Old 08-12-2012, 05:27 PM   #10
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Re: Bone pain and fibromyalgia... a bit lost

I'm in the same boat as you. I have pain like that, that has come and gone for years. I was recently diagnosed with fibro. I don't know if it is a fibro symptom or something else. My doctors have been no help at all. They just say "you have x,y,z" and then want to prescribe me a bunch of pills but give me no explanations at all.

I am stuck researching symptoms on my own and trying to figure out what's what.

 
Old 08-13-2012, 08:45 AM   #11
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Re: Bone pain and fibromyalgia... a bit lost

rjm,

So you have radiating pain that moves from limb to limb and feels like it is bone?

Did they do a bone scan? I have had a dexa of my trunk but not my limbs.

I am so sad and scared because I feel I'm being pushed from place to place with no real answers.

The doctor I am not such a fan of scripted me with Cymbalta after telling me it does not affect the liver (I have fatty liver and a family history of fatty liver that cirhosses). I did a quick google search that says it can cause cirhossising of those with liver disease.

I'm so lost. I can deal with the pain (I'll have to) if the bone pain and muscle pain is due to fibro, but I want an aggresssive dr. that will assure me he's ruled out anything else he can think of.

 
Old 08-14-2012, 10:10 AM   #12
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Re: Bone pain and fibromyalgia... a bit lost

hey all,
i have been on cymbalta for 7 months and want to get off. i have HEP C and do not want to keep taking it. my hep c dr. is not worried but then he does not know why i have such pain and fatique.
i think i have a lyme bug and am waiting for tests . particulary Bartonella causes bone pain.
i am taking antibiotics and had 10 really good days of NO pain. so.
my DX of Fibro must be wrong.

check for lyme and if it comes back negative test again because the tests show false negative all the time.

 
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