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Anyone with fibro have a high sedimentation rate?

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Posted 2/9/2009 8:02 PM (GMT 0)
My doctor refuses to believe that my high sed rate is from the fibro.  All articles I have read also say this is not an indicator of fibro.  I "think" I read previously on this site that there were people with fibro with a high or elevated sed rate.  Mine was 48 back in June and now it's 67.
Posted 2/9/2009 10:49 PM (GMT 0)
H LBL! And welcome to our family forum. This is a great place and I am glad you found us. You will be so thankful that you did :) Always feel free to ask any questions you have, we are here for you.

about the SED rate, I had my CBC and other blood work done every six months looking for, among other things, my SED rate and ANA numbers. The SED rate tests I took had positive result beyond 21. My last result was 27, which is extremely high for me, usually being around 17. So to answer your question, yes I have had high SED results along with FM. I am not convinced that inflammation isn't a part of FM; I am not convinced that it is, either. My wonky medical theories :) When I was first dealing with inflammation, I did alot of reading on what inflammation is and is not, and how it could be relative to FM. I need to do some reading again. Lets both do some research and share what we learn. Peace!
Posted 2/9/2009 11:01 PM (GMT 0)
Hi LBL and Sera!

 

I can help you with this question.  I sometimes have a high sed rate because of my lupus.  But with Fibro, you shouldn't have a high sed rate unless something systemically inflammatory is going on.  Fibro is not inflammatory. One way to know this for sure is to have a full body bone scan done.  If there is any inflammation it will show up on the scan. If there isn't any inflammation, the scan will be clean.

 

I had this done a year ago when my joint pain was so bad I thought I had RA or my Lupus was acting up. It felt different than my usual Fibro symptoms. The scan showed zero joint inflammation, and no inflammtion in my soft tissues.  The diagnosis was that my Fibro was flaring up badly.

Another way for me to know if my pain is Fibro or Lupus inflammation is to adjust my Prednisone.  If I feel better with an increase of prednisone, then it was my Lupus.  If I feel worse with an increase of prednisone, then it's my Fibro.  When Fibro is treated with anti-inflammatory drugs, it usually gets worse. Fibro and anti-inflammatories don't mix.

 

So LBL, your doctor is correct.  A high sed rate isn't correlated with Fibro. Something else is going on to make your sed rate go up. That is what I have learned from my vast number of doctors and specialists!  It will be interesting to read what others have to say about this.

 

 

 

Posted 2/9/2009 11:12 PM (GMT 0)
Forgive me, being a doctor's daughter and all, what is a "SED rate?"

Posted 2/9/2009 11:20 PM (GMT 0)
Hi Ginny and thanks for the post.  What does a full body bone scan entail?  My doctor thinks the high sed rate could be RA even though I have been tested before and did not have it.  She thinks it might be presenting itself.  What are the tests for Lupus?

Posted 2/9/2009 11:21 PM (GMT 0)

It is an indication marker of inflammation in your body.  Google it because I can't really describe how it is calculated.

tyno3 said...
Forgive me, being a doctor's daughter and all, what is a "SED rate?"


Posted 2/10/2009 12:13 AM (GMT 0)
The way my rheumatologist explains it to me, "inflammation" is a diagnosis in and of itself. He would not let me call my puffiness and swelling, "inflammation". He says he has lots of fibro patients with puffiness and swelling; that it is not uncommon.

I too have an elevated sed rate (as well as d-diner and C-reactive protein), but apparently not high enough for him to be concerned. I've tested negative for rhuematoid arthritis. I do have some osteoarthritis, so may the arthritis is settling in other places as well - but too early to be diagnosed.
Posted 2/10/2009 12:19 AM (GMT 0)
Hi LBL,

 

The bone scan is relatively simple, and the pictures that you get back are amazing! It's really cool to see your entire body in skeletal form!

 

You do get an injection of dye so the images show up. Any place that has inflammation happening will "light up", or show as black on the images. The scan also shows degeneration in bone, and can even pick up cancer tumors!  It's wild.  The entire test took about 4 hours.  After the injection you have to wait 2 hours for it to circulate through your body.  Then the images are taken.  You spend the test part lying on a flat table while the scanner moves overtop of you.

 

I was given the test because my rheumy was suspicious of RA as well. I came back clean!  You can have RA with negative blood work too. If a rheumatologist can do a physical exam of your joints, they can determine without blood tests if you have RA. 

 

For Lupus, it's called a Lupus blood panel.  I'm not certain of every test that is done, but here's what I do know... CBC, ANA, ESR(sed rate), Compliment levels, APS (antiphospholipid syndrome), Anticardiolipin antibody, urine.  I'm sure there are more.  But if you google Lupus blood panel, I think you come up with some hits.

 

Lupus and Fibro show up together more often than not.  They're like cousins.  Which is why it's so hard to tell which one is flaring.  The symptoms are near identical. But Lupus can kill ya and Fibro can't (although it feels like it could some days).

 

Let me know what you learn okay. I'm interested!

 

 

 

 

Posted 2/10/2009 12:46 AM (GMT 0)
Well I'm seeing a rheumatologyst specialist so hopefully she will schedule a bone scan.  As long as it's not a full body MRI I can do it.  Would a high sed rate indicate osteo or just RA?

Posted 2/10/2009 2:57 AM (GMT 0)
RA only affects the joints that have synovial fluid in them. RA is autoimmune. The immune system attacks the synovial fluid.  So on the bone scan, those joints will light up if there's RA present. For osteo, it can affect all the bones, or just some of them, or even just one arm!  Like my mom! Osteo won't show up on a bone scan. To detect osteo, you need a bone density test. They're different.  A bone scan is a piece of cake compared to an MRI.  If you're claustrophobic, you won't need to worry one bit about a bone scan. 

 

No. Osteo isn't inflammatory. It's bone depletion. Osteo and sed rates aren't linked at all.

 

Do you have any other health issues? Anything autoimmune that you are aware of?

 

 

Posted 2/10/2009 4:33 AM (GMT 0)
I had a high sed rate when I had Lyme disease. After treating the Lyme for a while, my sed rate went back to normal.
Posted 2/10/2009 5:40 AM (GMT 0)
Hi LBL, my SED rate was elevated but my Rhuemy said it was nothing to be concerned about. So I have taken her at her word & left it but I do want to go back in this Spring & have it tested again. Just to be on the safe side. I do know it has nothing to do with Fibro or CFS. Hugs, Denise
Posted 2/10/2009 12:16 PM (GMT 0)
My sed rate is moer than elevated.  In June it was 48 and now it's 67.  A normal sed rate is 0-20

Posted 2/10/2009 12:18 PM (GMT 0)
No, I have no other health issues or anything autoimmune that I am aware of

Ginny said...
RA only affects the joints that have synovial fluid in them. RA is autoimmune. The immune system attacks the synovial fluid.  So on the bone scan, those joints will light up if there's RA present. For osteo, it can affect all the bones, or just some of them, or even just one arm!  Like my mom! Osteo won't show up on a bone scan. To detect osteo, you need a bone density test. They're different.  A bone scan is a piece of cake compared to an MRI.  If you're claustrophobic, you won't need to worry one bit about a bone scan. 

 

No. Osteo isn't inflammatory. It's bone depletion. Osteo and sed rates aren't linked at all.

 

Do you have any other health issues? Anything autoimmune that you are aware of?

 

 

Posted 2/10/2009 1:39 PM (GMT 0)
Good morning and welcome to our group. I have a very low sed rate and thus far have been diagnosed with nothing but fibro. At times I feel as though my entire system is inflammed but no, low sed rate always. Now my doctor said this is very indicative of fibro but that's his opinion. Something else may be going on.

Hope we hear more from you,

Patsie
Posted 2/10/2009 1:52 PM (GMT 0)
my sed rate is normal.
Posted 2/10/2009 2:34 PM (GMT 0)
Hi LBL! My sed rate has always been normal.When my Mom does my bloodwork,we stand waiting expectantly that this time my sed rate will elevate just a touch! Sounds crazy,but when your looking for proof for these docs,you'll hope for anything.

Posted 2/10/2009 7:46 PM (GMT 0)
LBL, your sed rate isn't too high.  It is elevated, but doctors and rheumatologists don't start to get real worried until the number is closer to 100+.  It's definitely worth watching.  Try to check it every month if you can to chart a trend.  If you had RA. Active RA, your sed rate would definitely be closer to that 100 number.

 

Like Denise (jewelrylady) said, it has nothing to do with our Fibro or CFS.  Something else is causing it to elevate. I hope you get answers soon.  Ask your rheumy about a bone scan!

 

Blessings,

Ginny

Posted 2/10/2009 7:49 PM (GMT 0)
Well my doctor felt that 67 is very high and considering that a normal is 0-20 and it has gone up significantly I think it's pretty high and it's closer to 100 that not

Posted 2/21/2009 8:00 PM (GMT 0)
LBL,
I feel 67 is very high sed rate. I have RA and Fibro and my sed has never gotten to 100. What is your C-reactive protein. If you haven't found out please do. I feel it tells more then a sed rate. But I don't feel that I have RA. I think that I have lupus but who knows. RA and Lupus both run in my family.

ivy's mom
Becky
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