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Elevated sedimentation rate- fibro?
12 Replies
Katiekate - March 3

I just turned 29 and I have been dealing with extreme muscle pain since the birth of my son- about two years ago. I've been tested for lots of things, but everything has come back negative, except my sedimentation rate which has steadily risen since Oct 2010. It is now at a 31- which I was told isn't really that high. I've tried cymbalta and lyrica and can't function without frequent doses of muscle relaxers and anti-inflammatories. I've been seeing my doc for 2 years, did months of PT and even saw a rheumatologist (whom I was not impressed with). All signs points to fibromyalgia- but my elevated sedimentation rate has me wondering if something else might be going on. Thoughts?


Jocelyn - March 3


Yes, I have fibro and a sedimate rate of 47 at the moment. I started with muscle pains when I was in my 30's and had two children. I started searching for doctors that could figure out what was wrong with me. The first Rheumy tested me to see if I had fibro by putting me on prednisone for a short period of time to see if my muscle aches would go away, and they did. As soon as the prednisone was discontinued, the pain came back and she told me it was NOT fibro, but may or may not turn into something else down the road (my mother had Lupus). Anyway, I went to a major hospital in Boston after years of chasing doctors around where I live. During the time I went to Boston, I started with extremely painful dry eyes. In Boston, I was diagnosed with Sjogren's, Fibro, and CFS. I asked why I had an elevated sed rate and he believes it has to do with the Sjogren's not the Fibro. He explained that it was believed that Fibro did not respond to prednisone, but they are finding out that in some cases it does. So...even though I did respond to the prednisone a long time ago, I still had Fibro. I'm not sure which doctor is right because this disease is so difficult to get a handle on. I am still working at 56, but have a lot of bad days because I cannot take many medications because I need to be real clear minded and the meds make me sick. Although my sed rate has risen from when I was younger fro 34-47, my pains have become so unbearable at times I don't know what to do. I don't want to quit work, so I am working with a PT, but I have time to rest, unlike I did when the kids were small. That is my story, not sure it helps out. I'm still not sure they are not missing anything else, but if you are not sure about your doctors, get to a large medical hospital if you live near one. I am going to Mass General Hospital in Boston, MA. They seem to be on top of things and my doctor specializes in Fibro.

Keep me posted on how you are doing.


Jocelyn - March 3

Oh and by the way....I'm not sure about my sed rate reason either. I do believe I have Fibro and CFS and Sjogrens. But, the muscle pains came waaaaay before the dry eyes, that part never makes sense to me, but I will say this, he is probably right because I did have dry mouth at a young age, I went from swallowing pills with water, to using milk, to now using applesauce because the pills won't go down. Things were slowing changing and I really didin't realize it at the time.


Katiekate - March 3

Thanks for the response! Another thing I forgot to mention was mouth sores I get- most frequently at the tip of my tongue during a flare up. My doctor said it is a result from the stress my body is going through. This last flare up has lasted over 3 weeks- I am miserable! I am looking to travel to a hospital that specializes in fibromyalgia so I can get some help. May I ask who you see in Boston? Or someone you recommend elsewhere? I would like to continue growing our family and planned on getting pregnant this summer- but I'm scared. I've read pregnancy could make people with fibro feel better- or worse. I also realize I can't continue taking the meds I'm on while pregnant. Hoping I get some answers soon.


Jocelyn - March 4


My doctor's name is Dr. Mark Fischer,for some reason I thought he specialized in Fibro, but I have copied his Clinical Interests below. He was so good at finding my Fibro, but if you call, perhaps he will be able to help you or find someone who does. I do think he specializes in Fibro too, because he sure knows everything about it!

HisClinical Interests are:
Seronegative spondyloarthopathy
Rheumatoid arthritis
Psoriatic arthritis
Ankylosing spondylitis
Sjogrens syndrome
Retroperitoneal fibrosis

Any way, I have been getting mouth sores for many years. On many parts of the tongue and inside lower lips. A previous Rhuemy gave me a dental paste called Triamcinolone 0.1% made by a company called Taro. This paste stops the sores from enlarging and makes them disappear real quick. I used to have these sores for months, they would get huge and painful, I couldn't eat or talk. Ever since I have used this stuff, they are usually gone in 3 days or just about gone. The sooner your catch one coming on, and the faster you treat it, the faster it is gone. If you need a phone number for Massachusetts General Hospital. I will give you the ling so that you can find it. I'm not sure we can post phone numbers on this site due to privacy issues.


January - March 14


There is a doctor in Annapolis, Maryland who specializes in fibro. His name is Dr. Jacob Teitelbaum, and he wrote the book From Fatigued to Fantastic. He suffers from fibro himself, and this book was really valuable to me when I first started to get a handle on living with this problem. You can google him, he has a website, and I believe he will work with you over the internet (not totally sure about that though). Actually, there are a number of fibromyalgia doctors you can find on the internet, with varying approaches to treatment.

Also, mouth sores can sometimes indicate food allergies. I found considerable relief from muscle pain by going gluten free (very strictly).

Good luck on your journey.


Jocelyn - March 24

Hi January,

I meant to ask you out of curiosity, you do not have to answer if you do not want to, but do you have an elevated sediment rate? If so, how high is yours?


January - March 24

Hi Jocelyn - I don't ever recall seeing a problem with sed rate on my labs…

(And I always get a copy of my lab results and go over everything - because sometimes people "forget" to tell you.)


Jocelyn - March 25


Thank you so much for the information!


t3apps - April 19

Hi, Jocelyn - if you live on the east coast, I see Dr. Kristi Mizelle at Johns Hopkins Rheumatology department. In her Hopkins' bio it states, "Dr. Mizelle is currently a senior clinical fellow in rheumatology who is interested in bringing her focus on holistic approaches to medical care to bear upon the care of patients with rheumatic disease." She really listens to what you have to say, and tries to read between the lines if you can't seem to clearly state your concerns (I have fibro fog and this is a frequent occurrence for me). I really like her, although sometimes I get frustrated by her slow approach; I want a fix now, even if there isn't one :(

As for sedimentation rate - mine is on the extremely low side, but we are attributing it, for now, to my Anemia. When I did the iron absorption test, the sedimentation rate went up, right along with everything else.



t3apps - April 19

Sorry, I guess I should have directed my first response to both Katiekate and Jocelyn .... Lisa


Jocelyn - April 19


Thank you for sharing your Dr.'s information. I do not live in MD, I live in MA. However, I am sure there is a John Hopkins' Facility out this way. But, I think it is your doctor that you are pleased with and that is great.

The funny thing is I have Sjogren's on top of Fibro and the eye doctor in Boston has me taking Flaxseed Oil pills and it is working great. I saw him today and he told me my eyes looked fantastic. He wants to see me in the fall as the weather will be more drying and if the Flaxseed doesn't keep them as well, then he will add Primrose. I just love it! He is the first doctor that I have met that uses natural supplements to help medical problems and it does work.

My Rhuemy is very good, but he is more for pushing the pain and anti-depressant meds, that I refuse to take because, first and foremost, they don't help me, and just because he gives me a different one, makes no difference, except it keeps costing me money and I have a cabinet full of drugs. I just gave some of my meds to a lady I work with because she takes what I am no longer on. One drug down.

My only wish is to relieve my leg and lower back pain. That is all I wish for, otherwise I will end up in a wheel chair. I am working hard and hope to be in less pain by the end of summer. Then I have to work on how to keep things going through the winter months.

Stay well...and thanks to you all!


Jocelyn - April 19

Oh I forgot about the sed rate. I have to say that I have been anemic on and off all my life. My sed rate is elevated when I am anemic or not. Right now I am not anemic, I just make it in the normal range, however, my sed rate is still climbing :( so is my C-Reactive Protien test. Not sure what it all means, but I have lots of questions for the doctor when I go in June. It is funny how we are all different in wyas.



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