I was having some pain so I went to my Dr. I have tendinitis & bursitis in my shoulder. I asked my dr to test me for RA because my mom has it. She tested my RF and it was 14 so she sent me to a Rhuemy. this was in May. The 1st apt I could get wasn't until 7-18 so she sent me to a different one. He said fibromyalgia, which I believe I have. The rhuemy said he would call if anything abnormal showed up on the blood test and I called them to get the results and they would not tell me until my apt with him on 7-14. He canceled the appt and nothing was said about my test so I thought they were normal. I went to the other rheumy on Friday and at first she did not think I have RA by my exam then she got the test from the 1st rhuemy and it showed my
RF is 15 and the CCP is over 60.
She states she is 98% sure I am in early stages of RA. I don't have the symptom for RA but I do have them for FMS. I have had some pain in my hands about a mth ago but I have not had much pain since. I can turn the steering wheel and it doesnt hurt anymore. I can open a door and I don't get the sharp pains in my right hand. I can type with out the stiffness. Can anyone tell me if they have had blood test show RA but not have consistent symptoms? They seem to come and go.
I was taken by surprise by this diagnosis. I did not expect it. I thought everything was good. My mom has had RA for 25yrs and she is disable. She is 70 yrs old. She has not driven in over 2 yrs. she is in constant pain and her hand and feet are severely deformed. I have watched her deteriorate and is scares me. I don't have her tolerance for pain or her strong faith. I am having enough problems with the FMS. I don't know how I am going to handle it when the RA symptoms come back and don't go away. Any suggestions and encouragement would help. Thanks.
Hi Jan, I am kind of dealing with the same sort of thing as you. I went to my doc a while back for muscle pain in my legs and pain in my hips and she called me back and said my rheumatoid factor was 90 and my sed rate was 30 and she wanted me to see a rheumatoligist. Went to the rheumatoligist and she is not giving me any info, did xrays and said joints are fine (thank goodness) pulled blood found the same as doc but also slightly elevated ANA and she thinks it is probably nothing because I dont have swollen joints but still has me return every 6 weeks for god knows what (cause I dont know). I have been back 3 times and I am having a hard time understanding why when there is nothing to worry about I need to keep coming back so I am going to see a new rheumy on Aug 6 for a second opinion.
I think we seem to be kind of unusual in the fact that the blood tells them "possibly" but the symptoms are not telling them the same thing. It appears that most feel really horrible before the blood shows anything at all. But then it leaves us wondering do we or dont we. Do we want to be treated if they are not sure? Do we want to wait? I would just really like for a doc to put it together for me.
Did they put you on any meds for RA since they think you have it?
No she did not put me RA meds. I have bursitis in my hips so she gave me anti inflammatory Naproxen and gave me cortisone injections in my hips. I will not go on RA meds. They did nothing for my Mom. My sister is a Herbologist and is into healthy stuff. She is advising me what types of vitamins and herbs to take and to change my diet drastically. The only time I will go on RA meds is if I get worse and the natural way does not work. I go back in 3 mths to the Rheumy. She wants to keep an eye on me.
The same thing happened to my Mom. I am 42. When she was 42 she had a positive RF that was found by accident and she did not know what RA was so she ignored it. She did not have symptoms until she was around 45. That was 25 yrs ago. I must be following the same thing she did. I was just hoping this was wrong.
The sed rate shows you do have inflammation. Mine was only 17. It was the ccp test that convinced her I have RA. Have the Rheumy looked into Lupus? everything I have read states if you have a positive RF and positive ANA it could be Lupus. My ANA is negative. We must be different from everyone else and may eventually develop more symptoms. I hope not. It is hard when you just have to wait to see what is going to happen.
I am glad you are changing Rheumy's. We need to keep these Dr.'s straight. It is our health they are dealing with. There are Dr.'s out there that care we just have to keep looking. I do like this Rheumy. She was very thorough. The 1st Dr. was an idiot. Did more talking about everything else but what was wrong with me. I think he liked to hear himself talk. I am not going back to him. I could not believe he did not call me about my test results then cancels the appointment.
Take care and keep me posted on your results with the new Rheumy.
That is good info Jan. It is interesting that your mom had the same thing going on with her blood levels at the same time. Did she present with pain in her hips at that time or somewhere else? Kind of good for you so you knew what to watch for. In our family we dont have any RA but my grandmas sister had Lupus, but that is the only heridtary link I know of.
I know what you mean about the rheummys the first one that I have gone to told me that I was too tall, too fat (5'9" and 170, I wear a size 10) and too old to be running and playing soccer and that I needed to change my activities to swimming and walking. Very depressing since I have been doing these things for over 10 years without a single injury and my xrays show my joints and bones are in great condition. If they told me you have "this" and it would be best if you did this at this present time I would be all for that but it was basicaly "I have no idea and I want you to change your life". Not good enough for me and now I am on to a second opinion. If I walk in a this doc tells me I am fat and old I will be mortified. I just want to know what they suspect and then I can watch for symptoms. I would like them to tell me if you have this or that it is important and we want to see you.
She had excruciating pain in her whole body and felt like she had the flu but did not. She said she felt like she was dying. That was 3-4 yrs after the RA was found in her blood. I hope it makes a difference since I know much more than she did. I know I need to watch this and do something about it sooner than she did. On the other hand I have seen how much she has suffered and it is very scary that I could end up like that. It's the waiting that is driving me crazy. every pain I have I wonder if the severe pain starting.
RA can be in families but it not necessarily hereditary. It was explained to me that since I have several other autoimmune diseases(hypothyroidism, vitiligo, asthma, hormone imbalance) that I was susceptible to another autoimmune disorder. It could have been something else. I believe Lupus works the same way. You may be more susceptible since your great aunt had it but not necessarily develop it. I have a aunt who has it.
That is that is absolutely ridiculous that a Dr could say that to you. He should not be a dr. If he saw we he would be mortified. I am 5"3 and around 200 lbs, and have not been active since Jan of this yr. I had to stop doing aerobics because of severe pain in my legs and severe fatigue. I believe that is from the fibromylagia.
I say more power to you if you can still be that active!! That is unusual, a dr's biggest complaint is that people don't get enough exercise. I could see if player soccer would hurt you but obviously it hasn't. I know with most types of arthritis or joint problems it is better to be active. I am trying to work on that. The energy is getting better.
This doc was actualy a woman rheumy. Of course she was a tiny little thing that I wanted to hand a sandwich too each time I walked in the office. You know I went to the doc origonialy with pain down the back of my legs, hip pain and fatigue. Of all of those symptoms the fatigue was the worst to deal with. I thought the pain was from exercise. The doc origionaly though fibro. I am not sure if they have rulled that out. Right now I am going to physical therapy to make sure weak back muscles are not causing pain. I have never had a back ache in my life but I will go. The PT is interesting and has been informative but the pain is still there. I really dont think it is a back thing I have been active for so long and I dont think it is really a weight thing either because I have been active at this weight pretty much all my life. But I am atempting to shed a few pounds just in case she is right.
I work with a woman who has RA and she was diagnosed 2 years ago and was basicaly in deniel. I dont know how she could deny it her RF was 880 and she had some sort of crazy high sed rate and she had nodules on her hads, she is basicaly to the point now where she can barely walk. She kind of shuffles it is just awful, she is in so much pain. She has now found a rheumy that she trusts and she has started to take the meds. It has been tough to watch and vibrant woman deteriorate so quickly over 2 years. But I tell you she would take nothing for this and she believe 100% that it was all in her head and she was causing her own pain. It was sad and frustrating.
I too feel like the waiting is all consuming. Every pain I get I think "is this something". For the last 2 almost 3 weeks I have had pain along the tops of my feet. Is that something? I got a weird rash on my chest this summer, is that something? It is driving me crazy. So I know what you feel like with the waiting game.
Did you get the rash when you were out in the sun? Lupus cause some kind of rash from the sun. My aunt avoids the sun for that reason.
I understand about the fatigue. That has been the hardest part of this also. My pcp order b12 shots for me even though my b12 is low but it is considered in the normal range. I have been on them for 2mths or so and It has made a big difference in my life. I do not feel as good as I would like but I feel so much better. I can at least work and not feel like I ran a marathon.
I have a pain and I wonder what it is from. I think is this the start of the RA or is it fibro? Do I have fibro? I went to a water park yesterday and now both of my wrists are hurting. It only hurts when I use them. It does not feel like the joints. I got to keep using them and it will get better. It is frustrating.
I am sorry about your co worker. My mom is like that. She does not want to know what is wrong with her. She had precancerous cells in her stomach and she did not want to deal with it. She says she would rather pretend she doesn't have the problems she does. I think that is why she is so bad now. She wont take the medicines. I am different. I want to know about my diseases. That is why I found this site. I want to be informed. There are medicines that can help. The problem with them is they suppress the immune system and that's whats so bad about them. If I have to and dont' have a choice I will use them. I hope your co worker gets better. Why suffer if you don't have to.
You know it is a weird little rash. It is on the V part of my chest the worst. The first time I noticed it I had gone out for a small walk on my break at work. That afternoon I came down with this red rash that looked like little tiny water blisters. I lasted about a week and then kind of left my skin permentantly freckled. It showed up agian afet I had spent the day in the car driving to a little vacation. Same thing I can actualy see litle bumps still and it has been months since I have had the full blown rash. It also shows up in areas that are not exposed to the sun like the top of my back. Weird. My rheumy (the one that needs a sandwich) said hum, looks like it could be sun sensitivity. That was it so I figured there was nothing to worry about. I am kind of anxious to see what the next rheumy thinks of it.
I hope the new rheumy will be better than the "NEED A SANDWICH" Dr.
It's ashame what we have to go through to get a good dr. I hope you receive good news. keep me posted. I am here to listen. We can help each other because we are in similar situation.