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High Sed Rate and CRP with Fibro?
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MrsOldDuck posted:
I was recently diagnosed with Fibro, last Friday to be exact. I have been suffering since June 2004 and was originally diagnosed with Polymyalgia by my Internist. I took Prednisone for about 9 months which made me sick in so many other ways I had to stop. It didn't take away the pain anyway which has been getting worse over time. I finally decided to see a Rheumatologist and she said that she believes it's normal for me to have a high ESR/SED rate and CRP which normally is a sign of Polymyalgia Rheumatica. She said that my doctors should stop testing me for them and to not take Prednisone again.

Do any of you show inflamation in your blood tests or have a high CRP? My SED rate is 60 and my CRP is 21. I feel like I have a really bad achy flu with a 104 temperature all the time, only without the temp. I ache all over and do have the tender spots, but my lower back/buttocks and down into my legs are where I hurt the worst. It's just a constant aching. I'm just as tired in the morning as I am at night (exhausted!). I take Norco and Percocet for pain but they only take the pain down to a level where I can concentrate at work and sleep at night. I thought the Rheumatologist was going to treat me but she just gave me a prescription for vitamin D (my level was at 18) to take for 12 weeks and told me to work with a pain management doctor and my internist for the pain. I was really suprised that she wasn't going to treat me (what's that all about?). My internist is out of the office for another week and her assistants aren't returning my calls (I was just wanting an appointment and let them know I was in constant pain). I think they are upset that I got another opinion. I couldn't go into work today, I was up all night. I couldn't lie down without pain enough to keep me awake, and I couldn't sit in a recliner without pain enough to keep me awake, even with the pain medication. I have a memory foam mattress topper on my bed and a very cushy recliner that I go back and forth between every night.

I worked with a couple of women a number of years ago who had Fibro but I really didn't understand it until now. I remember touching the shoulder of one (she's still a good friend) and she jumped. I was really suprised when my husband touched my shoulder a few weeks ago and it was so painful I jumped myself. My husband and family are understanding to a point but I think it's very difficult for them to understand how I feel. I also have Lumbar Spinal Stenosis, OA, hip bursitis and sciatica. I think the hip bursitis and sciatica are part of the Fibro as they tell me my Stenosis shouldn't be causing the problem.

Sorry this is so long, I've just had a really bad couple of days and needed to vent. I'm normally very positive. I thought I had PMR which is supposed to go away eventually. Now I know I have something that will be with me for the long term and need to re-adjust my thinking and figure out how to deal with it in the best way. I'm looking for an new Internist and Pain Management Doctor.

Thank you all for being here. It really helps to know that it's possible to find a balance of medications that can allow you to live again. I feel like I've just been going through the motions for a long time now.

Take care all,

Kathy
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chava113 responded:
Hi Kathy,

Sorry to hear you are in such pain. I don't know why the rheumatologist didn't treat you. I also have a high sed rate everytime it is tested. They just say it's because of inflamation. I don't know about having a CRP don't know that term. I haven't had much luck getting rid of all the pain some days are better than others though. Try a different doctor and see it that makes a difference.

Good Luck, Lisa
 
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gods_child1959 responded:
Hay Kathy sorry you are in pain.I do understand.Maybe the Rheum.thought they were just a second opinion.If so they might not want to right med.Your best bet is to see pain management.I wish I could my husbands insurance wont cover pain management.So I cant get any good med.

God Bless, Donna in Tenn.
 
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cattlebarroness responded:
Hi Kathy and welcome. Sorry you re joining us but you have found a great place for info and understanding. My blood tests are normal but we are all different. Sounds like you found one of the rheumy's that don't want to treat fibro but alot of people here use them, so maybe a different one if you can't find a pain management doctor. Hope you get some help soon.

Shar in Tx.
 
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yogamama7 responded:
Sorry you are having such a tough time.

The rheumy probably did not give you anything because of the meds you are on. I have found that pain meds that you might be prescribed after surgery, or for acute pain, do not work with chronic pain. It would be a good idea to see a pain management dr as they can ease you off what you are on, and find something more appropriate.

FM is so hard to treat, and not all Drs have the same attitude toward FM. Find a Dr that will treat you and respect you, and I believe you will have a better outcome. Have they tried tramadol or Ultram extended release for the pain?

Gentle Hugs,

Yogamama7
 
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MrsOldDuck responded:
Thank you all. I really appreciate your help.

I guess the problem is I was being treated for Polymyalgia and will have to find a doctor who is more familiar with Fibro.

I remember taking Ultracet (Tramadol) after a kidney problem. My urologist gave it to me to take during the day at work because I had a temporary stent in my ureter. and it worked very well.

Sometimes I think the doctors who treat this kind of illness really don't believe it's so bad. I spent over 3 years trying to get help before I could find anyone who even believed I was in pain.

Today was a pretty good day for me. I made it through with minimal pain meds and some ibuprofen. I have one more day of work at the office to go for the week. On Friday's I get to telecommute, so I love Fridays! I can go barefoot and wear sweats all day if I want to. The best part is I can sleep in longer. I have a long commute every day, about 45 miles one way. We have a shuttle bus that I use to save on gas but it makes my day much longer.

I hope you all have a wonderful weekend! My daughter made an appointment for us to have a makeover at the mall on Saturday. I haven't really wore much make up since I start feeling bad. I'm hoping I'll feel good enough to enjoy the time with her.

Thanks again, Kathy
 
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LindaHawley responded:
Hi Kathy, I have been diagnosed with polymyalgia rheumatica, fibromyalgia, osteo arthritis, and osteoporosis amongst other diagnosees. I have been told by my Rheumatoid Doctor that the high sed rate does not go with fibromyalgia. I too found a Rheumatoid Doctor that wouldn't treat me because he said I did not have poly... I just did some reading on the internet, then since my husband had rheumatoid arthritis I went to his doctor and now I am relatively pain free. Sure I hurt all the time because of one diagnoses or the other but I can live with it most of the time. The big thing is what you have been hearing all along...."Keep Moving". Don't give into the pain any more than you have to. Do you know the difference between Polymyalgia and fibromyalgia? From what I have been told, even the doctors sometimes can't tell, but if you have polymyalgia rheumatica it is an autoimmune disorder and a sister to rheumatoid arthritis. You have to make sure that it is the Polymyalgia pain that you are taking steroids for because they will not relieve the pain if you have Fibromyalgia. I have included the definition these doctors have and it is pretty close to what I have been told.

Polymyalgia rheumatica is a rare, inflammatory condition that causes pain or aching in the large muscle groups, especially around the shoulders and hips. Polymyalgia literally means "many muscle pains." Rheumatica means "changing" or "in flux."

What Are the Symptoms of Polymyalgia Rheumatica? The way I can tell which pain it is is that if it is poly when my shoulders and kneck hurt like the dickens for no reason and my blood tests show that my sed rate and crp rates are up. It is Fibro if it is one of the many pressure points they list that is hurting, or I get what they call "brain fog" or I have sleep deprivation because I can't get deep enough sleep.

This site is really helpful; you might want to check it out: fibromyalgia-cures.info/index.php?Query=2USvF8Avsl3%2BAhGyLbMzskexlGB%2BYDoxLbUvvb4Ym4f%2FfJAXlp6WnKmbmmdlZbYREZ%2B0kXVGwg4GlWSho3yA&oq=06oENya4ZGJbLUXW6oAQdByJ_SIUOLtjVv8egrrODMtvuGpAVf8NnFY_dsCx6EL20QeV-kVbkY50HOKEOND64eubeQMxejjCjW9BthWi1W7r3UTsWMFkdDU7SrJNNgXrOvQNS8anZWbcv48M79PX3OijFxDWTGPVwXUGeX8gr_JFS27djiG3iNzjKxfAGYEO0PU5LJR-7D90u9eulGaCmI6OwahUNQ,YT0z&sk=fibromyalgia+syndrome. I think you can copy and paste this link in your browser.

I hope this helps. It is really confusing I know. I am not a doctor but will answer your questions since we seem to have somewhat the same symptoms. My email is linda.hawley@ymail.com You can email me even if you just need to vent. Have a nice night.
 
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An_200144 responded:
oh wow hearing your story I feel like were twins...

I too have a high SED and CRP, also have had hip bursitis with steriod shots. Was told to loose weight so I have lost 60lbs of the 100lbs I was overweight, but I still have issues. Unlike you I have been fighting the Fibro diagnosis, until my husband and I wanted to become pregnant, now I think I am going to have to accept the fact thats what I have, but were still staying positive and going back to the Rheumatoligist for final reccomendations.

The coctail of meds that I take is Celebrix 200mg at dinner, helps keep the swelling from the SED and CRP under control and less painful so I can sleep at night. I also take Neurontin 300mg in the morning and again at bedtime 600mg. It has made a huge difference as I dont feel pain as much anymore. The only bad part with taking Neurontin is that you will be tired for about 3 months until your body gets used to it, but if your in a lot of pain its well worth the drowsiness for a little while. Also on occasion I will take a Flexeril for muscle cramps or an Ultram/Tramadol for pain (kinda like a nerve deafener it just quites it down to a managable level) but I try to avoid taking the narcotics as I felt I could easily become addicted to them, and for a while I was.

For me I try to keep a positive attitude, I do walk but not anything too strenoius as it hurts and I am afraid of another flare of the bursitis in my hip. If I do stay even somewhat active I have less bursitis attacks as the joints stay well lubricated even with a little movement. I also try to stay hydrated at all costs, as I tend to swell all over and sometimes I feel as though the water goes to my body swelling and I get dehydration cramps from not enough water in my system where it needs to be even when I am swollen with water.

I am happy to hear that you are taking a positive attitude and that you are being proactive about your diagnosis. I hope that sharing my story and meds will help you with new possibilities to ask your doctor about.

I hope you will find your answer. Best Wishes
Tara
 
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qtdoxie responded:
Dear Kathy, Hi! I see that you wrote this 5 years ago! I understand.. I am wondering how you are doing? I have suffered for over 2 years now and they didn't know what was wrong with me for almost 2 years! I am in so much pain! Hard to sleep because of the pain and when I try and turn or move in bed the pain is too much. I have a family doc,rheumy and a chronic pain dr. I thought the chronic pain dr. would give me some kind of stronger meds I can take when I flare up but he wants me to cut back on carbs and also he took tramadol away and gave me nortriptyline to take a night (doesn't seem to do a thing) I am also on 600 MG of Neurotin 4 times a day! I can barely go to work, I force myself too and they don't seem 2 care. I cry in the bathroom when I just cant take it. I limp around everyday. i know I can't go on like this! The weather is horrible for me cold and rainy or about to rain.. flare ups! I have a very high sed rate and a very low vit D which I understand is common. I hope to hear back from you to see how you are doing. i will pray for you Kathy. Blessings, Donna
 
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dsbreyes replied to qtdoxie's response:
Hi Donna...my name is Denise. I don't know why I'm writing to you...it is just something in your post that spoke to me I guess. In fact...I've never written to anyone before. I just feel so bad for you, I know how it feels to sit in the bathroom and cry because you are in so much pain. I was reading your post over and over and didn't see where you said what your diagnosis was. I was diagnosed with Psioratic Arthritis about a year ago. It is actually Psioratic Spondylitis...it's hallmarks are high sed and crp rates and low vitamin D levels. Along with severe muscle pain. Maybe you should go on the Ankylosing Spondylitis website and read about some of the related diseases. It is the Spondylitis Association of America. I hope you find some relief. All my best, Denise


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