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Inflammatory Arthritis With No Sed Rate

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I was initially diagnosed with reactive arthritis in 1999 and fibromyalgia in 2000. Had swollen red joints everywhere, pain, etc. Doctor thought it was ra or lupus, but blood work came back normal. Inflammation went into remission in 2001, but has recently come back (yay Sad my rheumatologist thinks something is going on, but again, all blood work came back normal (even some new test, c-reactive protein?). Yet I have visible inflammation and I am responding pretty well to the nsaid i'm on (which is so strong it's considered "highrisk" to be on it). All the signs point to ra but no blood work to back it up. Has anyone here ever been in this situation? What do I do from here?
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First Helper sookie1
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replied August 1st, 2004
Extremely eHealthy
Go to google.Com type in (each one separately) reactive arthritis, fibromylagia, lupus, ra & anything else you think of or that you come across in these searches also type in causes of...... (each)..... & alternative treatments for ......(each)........

Good luck & in the menatime try taking 100-1500mg twice daily of each of glucosamine & chondroitin & any other antiarthritis type natural supplements.
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replied August 21st, 2004
Hi,

yes, you can have ra, and serum blood levels can be absolutely, and frustratingly, normal... It's called nero-serum ra.

I have the same thing... It is rare to have, only a small percentage of ra patients have this. It took 3 years to get this diagnosis. I"m currently taking 25mg weekly of methotrexate along with 2400mg daily of ibuprofen. Currently, i'm in a flare, which is why such a high does of nsaid, but once I was diagnosed and properly medicated, I could actually have a life.

Hang in there, and check on the above under google and alta vista... You should be able to find some helpful links.

Michelle Smile
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replied October 26th, 2004
Inflamatory Arthritis With No Sed Rate
I was 22 and pregnant when I first started experiencing joint pain. It started with my knees and after the birth, the pain spread to my wrists, hands and elbows. The pain was accompanied by swelling and redness. I went to the doctor who said that the pain was from twisting bottle caps off and having another child that was just 18 months younger. So the double duty of bottles and all the baby and toddler care was wearing me down. I didn't accept his answer. I kept going back and talking to different doctors. They would do all the right tests and nothing ever showed up. So I would always get shuffled out the door and told it was nothing. After about 6 years of this, I decided to go to a well known ra doctor at a well known hospital. I drove back and forth, two hours each way, for 2 years. At the beginning of the visits, nothing showed up on the the tests. The doctor was not sure if it was lupus or ra. So he diagnosed me with "polyinflamatory arthritis"???? I didn't accept that either. I couldn't understand why all this pain and no answer, at over a thousand dollars a visit, somebody should be able to give me answers. I started getting angry and depressed. I was tired all the time and my immune system was shot, so I was getting sick alot. The only diagnosis they could give me was the poly arthritis, since the sed rate was normal. I finally quit going to that particular doctor and tried a different doctor in my town, he's the only rheumatologist in town. I went to him after arguing with my female doctor and she finally gave in and gave me a referral. During the first visit after viewing tests and xrays, he diagnosed me with ra. He said that small numbers of ra sufferers do not have an abnormal reading of sed rate. But because of the symptoms and the visuals, this is what I had. He promptly put me on methotrexate, 4-1.5 mg pills twice weekly and 800 mg naproxen twice daily. I do still have a problem with inflammation, but the tendernous and pain are considerably less. I still to this day, 14 years later, have a normal sed rate. Don't stop searching for a doctor that will finally listen to you and help you. Ra isn't anything to play around with. I have some mild deformation of my joints because it wasn't caught and treatment wasn't started early. Push and pull and get mad, but find your answer. These doctors get paid, make them help you!
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replied May 18th, 2012
confused and hurting
im 38 f and for the last year i have had alot of things going on. headaches with nausea, joint pain and tenderness , fatigue , numbness and tingling in shoulders back , arm and hands , low grade fever , ankles hurt in the morning like ive been on them all night , heavy shoulders like my arm is just hanging , and a light popping in the shoulders. i went to the dr. and they did tests for ra and lupus. they came back normal. they put me on prednisone and a wek later im feeling better. ive had to do this before but a month after i finished the prednisone symtoms started comimg back. they want me to see an ra doctor for further testing. is this normal . can u still have an auto-immune disorder and it not show on the basic tests. they pain is coming from somewhere . someone suggested that it could be nurological. please help , scared that it may be serious , and want the pain to end.
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replied October 28th, 2004
Well said pookie! Smile
i'm pretty new to this forum, but have taken the time to read some posts. I haven't seen any talk about diet. Doesn't diet play a significant role in our reactions? I have rheumatoid arthritis, which I guess is different from those who posted replies to "inflammatory arthritis with no sed rate." i've begun to do research about diet and its effects.
I was only diagnosed a couple of weeks ago, but have been dealing with my pain from an injury over a year ago. The swelling developed into carpal tunnel syndrome and I was put on bextra for that. I couldn't find out what was wrong with me. When I did find out I had ra, and after the whole vioxx being pulled thing, I decided I didn't want to be on any meds--i'm not saying no one should take arthritis meds. . . I know that I have fairly mild symptoms and it could be a choice for me--so, i've been playing around with my diet, cutting out inflammatory foods. I've also started to practice meditation and do my best not to stress since that's a big contributor to pain. I'm happy that while I do have some mild pain, I have not had a reaccurance of carpal tunnel syndrome (of course I had to quit my job and won't do secretarial work again), so I know the swelling is less than it was when I first started bextra (which I was on for about 5 weeks).
Perhaps i'm sharing info that's old news or not applicable to your situation--but I thought i'd bring up the diet consideration just in case it isn't something you haven considered. If you'd like to discuss it, let me know.
Either way, take care and I wish well,
marla
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replied July 20th, 2009
I find this all very helpful! I have been emotional for the last week. A year ago, my doctor diagnosed me with Arthritis. She was certain it was RA. Finally, after having to quit my job to get a less straining one, and having to take naps 1-2 times daily to try and cope with life dealing with fatigue, I went back to my doctor and she did my blood work and my sed rate came back NORMAL. Which I received results last week. I too experience the swelling and redness of joints all over my body. I have been left feeling very confused. Although my sed rate came back normal my doctor set up a referral to see a rheumatologist. After reading your comment pookie, it made me feel better about all this! Just because I am tired of dealing with the pain and not knowing WHY. I somewhat felt as though that if my sed rate came back normal, why would a rheumatologist see me? Depression started to sink in deep, I've never dealt with or had anyone close to me experience anything like this so I feel at times that I just do not know what to do or who to see. Now I feel a little more confident in visiting this doctor. I hope she can help. My suggestion is DO NOT wait and let this sickness consume you like I have done. Get it taken care of now, get blood work done! The sooner the better. Also find out what blood type you are. That will help with finding out what foods you can and cannot eat with your Arthritis.
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replied December 14th, 2009
I am positive for Rheumatoid Factor and ANA's (anti-dsDNA - the Lupus one), but I think I have only had one elevated sed rate (and that was well before my dx). I will have obvious signs of inflammation and still have a normal sed rate. My Rheumy said that sometimes the inflammation stays localized in the joint and doesn't become systemic. Made sense to me, but it's frustrating. Not that I want to have an elevated sed rate (I think at this point if I did, it would be REALLY bad - a "not being able to get out of bed" kind of day Wink)!
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replied March 15th, 2010
please i would love info neg sed rate, no redness in joints
i would like to ask if anyone has ever not had the redness to the joints? i am diagnosed after 2 years of fighting that i have joint pain which is horrible in my spine and elbows, but it has attacked my internal organs. they kept bouncing me around thinking i had a bowel condition. now i am told i have inflamatory arthritis. does anyone have just pain when you touch your skin? just touching my thighs or arms hurts. i have just started taking enbrel shots and also wonder if anyone knows how long before i will feel relief? i am also new at this but really seeking info as i too was told it was depresion and tried on antidepressant which they have now taken me off of. any answers would be so greatly appreciated.
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replied March 15th, 2010
I have had Reynauds Syndrome since a child, Geographic Tongue, pluracy in middle school, always had very loose ligaments (a lot of popping even when just bending wrist, ankles, ect.) I have had bakers cysts and bursitis in both knees, nodules on both my wrists, my hands and feet hurt so bad my husband has had to help me sit up from bed and walk around the house, and a lot of pain behind my right shoulder blade with constant swelling. I have taken Bextra, Celebrex, Vioxx and Arthrotec all at one time or another. I do not notice redness to my joints. I also have had VERY normal sed rate, and as far as my family Dr. found, no blood signs of arthritis, though he has recently sent me to a rheumatalogist. That rheumatologist is pretty positive I have RA, he took my blood to run some tests that are geared more towards RA, which my other Dr. did not do. I am 28, my brother has been diagnosed with RA at age 19, a male cousin during childhood, and my great grandmother and an aunt all had it. My nephew has geographic tongue as well and has complained of joint pain since he started walking and talking good (at 2 yrs old), his ankles are severely deformed at this point (he is 10) and his mother never takes him to the Dr because he doesn't want to go. I believe this IS hereditary.
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replied August 15th, 2010
I hope that my information can help one or all. I am a rhuematologist nurse and the first question I want to answer is that you can have RA and have a neg sed rate.This does not mean your pain is not there, many RA pt can go up to 30 years with a zero sed rate. Those who do have a high sed rate usually means their RA is not controlled. Question 2 Enbrel usually reguires 1 to 2 months before full benifits are seen.
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replied August 15th, 2010
Re: please i would love info neg sed rate, no redness in joints
sthiele65 wrote:
i would like to ask if anyone has ever not had the redness to the joints? i am diagnosed after 2 years of fighting that i have joint pain which is horrible in my spine and elbows, but it has attacked my internal organs. they kept bouncing me around thinking i had a bowel condition. now i am told i have inflamatory arthritis. does anyone have just pain when you touch your skin? just touching my thighs or arms hurts. i have just started taking enbrel shots and also wonder if anyone knows how long before i will feel relief? i am also new at this but really seeking info as i too was told it was depresion and tried on antidepressant which they have now taken me off of. any answers would be so greatly appreciated.
Hello just wanted to try and answer a couple guestions for you. Enbrel usually requires 1 to 2 mths before full benefits will be seen. With the pain in your spine have you ever been tested for AS anklospondlyis? You also sound like fibromayagia. I hope I have helped you aleast give some question to ask your doctor. Best of luck to you.
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