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DO I have RA or Fibromyalgia?
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tinkerbell5622 posted:
Okay, I am so confussed! I have had chronic pain in my joints for the last few years with increasing pain over the last few weeks. I had a ANA come back positive, speckled and diffuse, RF negative, SED rate negative but no CBC done to check for anemia, CRP negative. Bone scan showed increased symmetrical uptake in 12 joints consistent with Arthritis. Sjorens antibodies negative. Went to Rheumatologist and was told RA with possible Sjorens, ordered lip biopsy (pending) and screen of eyes to start taking Plaquinal. He also had me do a 5 day dose of steroids which did help. Decided to get second opinion, he reviewed the same material. He said Fibromyalgia, no RA. I only had tenderness in one of the pressure points that they check but because of the chronic pain and the occasional headaches he said Fibromyalgia, he ordered and anti-inflammatory medication. This doctor said he did not believe in Bone Scans, I dont know which doctor to go with! PLEASE help I am desperate at this point for answers. I also have a history of different joint that would hurt and was told bursitis, which I was given a cortison injection for and it always worked after a couple of days
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Joseph310 responded:
I went through the same thing. All my blood work was negative, but my Rheumy still thought it was RA. He told me there are several people in the medical record with negative blood tests and xrays and MRIs say yes. He started me on prednosome, then went to plaquinal. This did help some. Now I'm on Metheltrexate and Enbril and I feel beter than I have in years. It is very rare but possible to have RA without any markers in the lood. Good Luck!!! Joe,
 
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corlackan responded:
Approximately 20% of people with RA are seronegative, so it's not all THAT rare!!!! The OP doesn't stipulate if the second physician is a rheumatologist. . . frankly (at least for myself), I would be suspicious of any medical doctor who "does not believe" in bone scans, as they can provide a lot of useful information.
 
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2pnuts4us responded:
If steroids helped I would think RA. I don't think NSAIDs will help fibro but they can and do help RA. My 7 year old is RF and ANA negative but she sure has JRA and there is no denying it. It's totally possible to test negative at one point then to test positive later on.
 
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CinnamintStick responded:
If your second opinion was near the time you took steroids? That can mask your symptoms. My Rheumy almost missed my RA do to the masking. Did you have a CCP test?
 
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tinkerbell5622 responded:
Thanks for all the responses :) Yes my second opinion was only one week after taking the steriods. I did get a CRP done which was negative. My primary Care, who I trust, thinks that I may have had this for many years since it is in so many joints and I have had chronic pain for many many years. The thing is, I had seen 2 Rheumatologists, with 2 different opinions, both doctors have great reputations. I am confused as I dont want to start the RA drugs without a definitive diagnoses yet I dont want to not do treatment if I really need. Each of the doctors are standing firmly by their diagnoses, I do feel that the second doctor did not really listen to me. Thanks for the heads up on the steroids, as I did not even think about that. Also, any additional information you may have would be greatly appreciated! Do you know if you can have a normal SED rate if you have had inflammation over many years? Also when I had my SED rate drawn it was two days after I had surgery on my mouth, which had frank swelling but the SED rate did not indicate any inflammation, why is this?
 
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kelbstar responded:
I hear ya. I have not had many tests come back that show concrete evidence of RA, and i was very reluctant to start biologic injections, etc. However, the anti-inflammatory meds & the Enbrel combined do have me walking again and able to have sheets over my feet at night again. I am currently going through this same thing again with the neck pain that I am suffering. My rheumy says Osteoarthritis and sorry, but this is life you now, just take narcs day and night to get relief. When I speak with others in my support groups they all seem to think that I need some other opinions. It is frustrating that we provide different doctors all with the same information and they all take a different GUESS at it depending on THEIR previous experiences and not us as individuals. sorry i'm not much help, but i do Understand and wish you a speedy answer..
 
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lindapt2002 responded:
I am a newly diagnosed with RA. I am taking Leflidomid and Prednisone. Eventually going off Predisone and only taking Lefulidomide because it takes two months to fully get into the system. My SED rate was neg but i was taking naproxen at 1000mg a day prescribe by my family doctor. My RA factor was 63 and normal should be less than 13. I would go with the first doctor who you felt listened to you and looked at all the results. RA is in the lining of the joints. So far my medicine is helping but I will wait to see after the two months if I picked the right one. I had a choice of three different meds.
 
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steve93063 responded:
Hi TinkerBell, I do have both RA and Fibromyalgia. I have had it for over 2 years and I want to first say 99% of the people who replied to you all gave you good information. I have gone through what symptoms you and the other have. Ra is defined as stiffness in the joints, OA is damage already to some degree to some joints. Fibro is defined as a nerve disorder where all your body nerves are trying to fight against a low immunity. RA is generally caused by good white cells (anti bodies) trying to damage other needed good cells especially in the joints. Your joints have a synoval fluid sack that protect cartliage and bones. For an unknown reason your whites cells start to attack the good cells protecting the synoval sacks and is successful, will start to destroy cartilage and bone. Most of the time it is Gene related, someone in your family history. I also had two RA doctor opinions. Both said I have the Clinical signs of RA but not the labs..sed rate, etc as they are negative. Someone said in a reply 20% of people with RA have this, I heard 50%. Both of your doctors need to find that you are clinically diagnoised with RA if your labs are normal. If they can't agree, get a 3rd opinion. I also understand your Fibro problem as there really is no drug that is for it. Fibromaligia is a symptom, not a disease like RA. I too take Plaqunil which most RA patients take. I also have been put on Methotrexate after trying other meds. The Metho itself has side effects of stomach aches and sometimes severe fatigue or loss of energy a day or so after taking it. This is also the standard for most patients. The doctor will adjust the dose as needed to try to slow down and/or stop the arthritis from attacking the joints. I have been put on narcotics and opiates to relieve my pain especially from the Fibro. After awhile, they don't work as well and you don't want to become addicted to them. I have Flare-ups at times that are sooo bad, I want torip my skin off. The doctor gave me Prednisone 6 day pack to get through the flare up. Prednisone does help relieve pain and inflamation, but it can have severe side effects and you can not stop taking them unless weened off them. That is why I keep a Medose Pred 6 day pack only for flare ups. My skin pain is getting worse and my joints are getting stiff so the doctor wants to try the Biolgics next. Like in the replies, most people take Embral with Methotrexate. Hope you have good insurance. HMO starts with Remicade IV first, and if after awhile, the doctor can request Embral. If you don't have insurance, each shot or IV of Embral is somewhere around $1,000.00 plus per injection. I understand what you are going through and all my research on RA and Fibro say it is a lifetime problem and some of the drugs if caught early in the disease may stop or reverse the RA. I have lived with this pain and I have a support group and message boards online to talk about it. I found if you can share your problems and pain of RA and Fibro with others, many can offer good sugestions and even venting can help. The good thing about your'e RA is your labs are negative, so the blood is not moving the RA quickly. Keeping the white cell blood count is important. You have an Immune disease that puts you more at risk for colds and illness. So keep your health up. Find out what foods to eat and exercise to do. I hope you and everyone else gets better maybe with a new drug in the works. Sorry to all who had to read my Book reply, but I am compassionate for others who suffer with this pain problem and I hope to of helped Tinkerbell in someway. Take care to all. OH, regarding the Bone density scan, I would say it is a must. The dye shows the uptake of the areas getting damaged and the doctor will have a better idea what to do. Even helps if to get a cortisone shot into a joint that shows up severe on the bone scan. ...Steve
 
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pebbels2008 responded:
High, previous nurse who was diagnoissed myself about 8 years ago. Just a little help. You can have more than 1 autoimmune disease at one time. This is called Undifferentiated Connective Tissue Disease, where a person has more than one of the diseases flare at the same time and so they cannot pin down to one. Also can be called Mixed Connective Tissue Disease. Research it on the web. It will help you to understand better. It sounds like this could be whats going on with you. Also research NONI JUICE and MANGOSTEEN JUICE. These 2 items are a real fruit and natural. Specific brands to use are Noni from Tahiti or you can get it from Vitamin World (their brand) at a great price also MangoXan Juice, which can be purchased at Vitamin World. They were God sent to me! Mine hit me all at one time----- RA, Fibromyalgia,OA Polyarticular Arth. DDD/DDJ (disk degennerated disease/joint as well) my spine is eat up. I have already had 4 spine surgeries and 3 more to go. plus several more diseases. I was bed ridden for 2 years. My son had just turn 2. I had to give up my nursing. I was a mess, couldn't stand to be touch etc.. it hurt so much, couldn't sleep still I don't sleep very good but at least some. Any way I found these juices and I tried them and they were heaven sent!!! I am not back to work yet but I am out of bed and have been the end of 2004! Now I do have my good days and I do have bad days but I am having more good than bad! That's a big plus for me! There are also many vitiamins and supplements that I take everyday. But I do still have2 prescriptions I keep on hand for my flares. I credit GOD first and most and thank him for leding me to the 2 juices and supplements. But please do the research and give them a try. You take 1 ounce everyday of each and give at least 4-6 weeks to get in your system. Also research the other 2 diseases and see if this helps. You should find yourself a good Rheumatolgist Dr. this is there specialty and they know more than just the regulars. You don't always have to have a Sedrate to be high nor does everyone RF come back out. They can be normal and most patient do come back normal and that is one reason a Rheumatologist knows all the clinical symptoms and puts all this together to get to the Correct diagnosis. My e-mail is kllalmcc@yahoo.com your welcome to contact me there if you would like more on the supplements etc.. I have shared this with several others and they have found it to really help. My son who is 9 now heis being followed for JRA and I have him to take the juices and they make a big difference in him. I hope this helps. It's not that either Doctor is wrong it is just maybe you have more than 1 going on! There are many many Autoimmune diseases and they can all flare up at once. Good luck and God Bless, Bren :cool:
 
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bdazey responded:
Hi tinkerbelle.My name is Barbara. I am a Registered Medical Assistant and I work in a hospital. I too have had RA for about 10 years now. My husband has Severe Fibromyalgia and RA and my mom had Lupus. You can have RA and test negetative to the lab tests. I do and my RA is called sero-negative rheumatoid arthritis. My RF is negetative. My sed rate has never been abnormal and my CRP was only elevated once. One of the things that distinguishes RA from other similar illnesses is that the pain that is in the joints tends to be symetrical. This means if one wrist is hurting the other wrist is also probably hurting. With Fibromyalgia the pain is an achiness in the muscles, my husband likens it to the achiness that you have with a bad case of the flu but this achiness doesn't go away. Fatigue and Headaches are part of both illinesses and you could have both. However one of the diagnostic criteria for a fibromyalgia diagnosis is that the person has pain in 11 of 18 specific tender points on the body. You said you only had pain in 1 of the tender points. So my vote is on the first doctor. You didn't mention if Doctor # 2 was a Rheumatologists. I am not comfortable with his view of bone scans. And I am not comfortable with his diagnosis of fibromyalgia. With your symptoms you do need to be seeing a Rheumatologist. If you live in a large city you can check out other Rheumatologists and find one that you are comfortable with and someone you can trust. Because you will be seeing them for a long time and you have to be willing to work with them because not all treatments work for everyone. What I would also suggest is the you do some research into these illnesses and see which sounds more like what you have. Check out Lupus too because it is similar in symptoms and and positive ANA is almost specific for Lupus. ANA can be positive in RA too. Some good website I would suggest are: www.rheumatology.org which is the American College of Rheumatology - the doctors website-but it has a patient info section that is good. The Arthritis Foundation website is another good site:www.arthritis.org. They have an online chat room for people with RA. You can also check out some of the major medical centers such as the Cleveland Clinic which is one of the top five treatment centers for arthritis or the Mayo Clinic is another one I like too. Let us know how you do. Barbara
 
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bdazey responded:
Hi again. Yes you can have a negative SED rate with years of inflammation. I have had RA for over 10 years and my SED rate has never been abnormal. A Rheumatologist looks at the whole picture - the labs, your description of your symptoms, XRays CTs MRIs and Bone Scans as well as what they find on the clinical exam. You could have both illnesses going on at the same time. The treatment for both illnesses is similar. Each doctor had their preferred regimen of treatment. If a treatment doesn't seem to be helping talk to your doctor so they can try something else. There are a lot of options and not everyone responds to the same treatment. Because you have an immune system illness be vigilant about avoiding people who are sick. Wash your hands often and/or use hand sanitizer. Remember shopping carts at the grocery store or WalMart have lots of germs. Money is also one of the dirtiest things out there. Good hand washing goes a long way to preventing illness. I've got to close for now and go to work. If you want to contact me further, my email is billdazey@sbcglobal.net. Barbara
 
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qunita27 responded:
I am a 27 year woman with three kids.I have been from doctor to doctor.I have Ra and anemia.I have test after test.I have had problems with my joints and my muscles for years.I am taking steriods and pain medication.I have a shots for my blood and still have problems.What I am I to do.I am hurting all the time.I am tired and do get any sleep at night.I have hot flashes real bad too.
 
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Byroney_WebMD_Staff replied to qunita27's response:
Dear Quinta27,

Has your rheumatologist referred you to a Pain Management Center ? Some of our members in the RA community have reported good results with seeing experts for their pain control.

I'd encourage you to see a doctor about your Hot Flashes. Since menopause typically takes place around 51 years old, I think you'd want to get some tests done and find out why they're happening. Don't give up--the answers are out there.

Best wishes to you and your family,

Byroney


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