Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hello all,
I've been dealing with on and off pain flares for a long time now. But I always found excuses for it: I slept on my shoulder wrong, I'm overweight of course I'm going to hurt, thyroid disease causes pain, or any number of stuff. It's of course been getting worse, to the point where lifting even small weights (think 15 lbs), will bring me almost to tears as my elbow feels like I have glass in it. Or I cant rotate my arm/shoulder back to support a barbell across my shoulders to d squats.
I might be in debilitating pain (yet), but I did go to the doctor on Tuesday and she drew blood to test for RA factor, sed rate, BMP, c reactive protein, ANA 9FANA), and CBC w/ diff. They called today and said my results were negative. I almost laughed but isntead asked for them to mail me copies of my results. I want to see my values and the lab range and compare the two.
Anyway, I asked what was next because my swollen hands and my continued pain tells me something is going on. My family history isn't going to let me just sleep on this and wait it out. My father is only 50 and has had 3 surgeries on his shoulders so far because of RA. My maternal great great Aunt had severe RA as well. I am getting my referral to a rheumy, but I need suggestions from y'all on how to handle my appt. I've been to one before a few years ago for some mild pain that would cycle. He pushed on a few spots on my back, checked my knee reaction with the little hammer, and told me maybe it was CFS secondary to my autoimmune thyroid disease.
Before she drew my blood to test, she told me many of their patients that get treated at the family practice didn't test positive for antibodies and such for RA but still have it. So how do I discuss this with the rheumy? I'm taking Meloxicam and Tylenol along with fish oils and glucosamine and it's not helping with the aches and stabbing pains at all. I don't sleep through the night. I've been tracking what hurts where this week since my appt with my primary doc so I'll have a running list of daily symptoms to take with me once my referral appt is made.
It took me almost 5 years or so to get a diagnosis and treatment for my thyroid issues. And I've been putting this off becfause I HATE doctors, they don't listen. The fact that I'm even feeling and acknowledging the pain is a milsetone. I'm hard headed and rather pain tolerant. I can function with migraines because I had to learn how to with how frequent they were (before chiropractic care saved me from them). I can't ignore it anymore.
Any advice, suggestions, and tips from you guys that have walked (or limped) down this road before me will be greatly appreciated and cherished. Thank you for reading!
I've been dealing with on and off pain flares for a long time now. But I always found excuses for it: I slept on my shoulder wrong, I'm overweight of course I'm going to hurt, thyroid disease causes pain, or any number of stuff. It's of course been getting worse, to the point where lifting even small weights (think 15 lbs), will bring me almost to tears as my elbow feels like I have glass in it. Or I cant rotate my arm/shoulder back to support a barbell across my shoulders to d squats.
I might be in debilitating pain (yet), but I did go to the doctor on Tuesday and she drew blood to test for RA factor, sed rate, BMP, c reactive protein, ANA 9FANA), and CBC w/ diff. They called today and said my results were negative. I almost laughed but isntead asked for them to mail me copies of my results. I want to see my values and the lab range and compare the two.
Anyway, I asked what was next because my swollen hands and my continued pain tells me something is going on. My family history isn't going to let me just sleep on this and wait it out. My father is only 50 and has had 3 surgeries on his shoulders so far because of RA. My maternal great great Aunt had severe RA as well. I am getting my referral to a rheumy, but I need suggestions from y'all on how to handle my appt. I've been to one before a few years ago for some mild pain that would cycle. He pushed on a few spots on my back, checked my knee reaction with the little hammer, and told me maybe it was CFS secondary to my autoimmune thyroid disease.
Before she drew my blood to test, she told me many of their patients that get treated at the family practice didn't test positive for antibodies and such for RA but still have it. So how do I discuss this with the rheumy? I'm taking Meloxicam and Tylenol along with fish oils and glucosamine and it's not helping with the aches and stabbing pains at all. I don't sleep through the night. I've been tracking what hurts where this week since my appt with my primary doc so I'll have a running list of daily symptoms to take with me once my referral appt is made.
It took me almost 5 years or so to get a diagnosis and treatment for my thyroid issues. And I've been putting this off becfause I HATE doctors, they don't listen. The fact that I'm even feeling and acknowledging the pain is a milsetone. I'm hard headed and rather pain tolerant. I can function with migraines because I had to learn how to with how frequent they were (before chiropractic care saved me from them). I can't ignore it anymore.
Any advice, suggestions, and tips from you guys that have walked (or limped) down this road before me will be greatly appreciated and cherished. Thank you for reading!
My bloodwork showed that I was healthy, nothing wrong. However, he listened to my symptoms, looked at my hands and feet He diagnosed me with seronegative RA. I have since 'graduated' to seropositive RA. After all the tests were done, I was immediately put on methotrexate. He suggested prednisone, I said no, That 'only' helps with symptoms, & Celebrex was working OK, I didn't like the side effects of prednisone, I didn't want a drug I would have to taper off. When methotrexate did not help, I was put on a biologic.
Hopefully, you can find some relief
And I really hope I get referred to a good doctor. So farmy interaction with the doctors in the family of practice I found in NC is world's above doctors I've interacted with in NY and VA where Ive lived. I have some hope, but at the same time I'm pretty anxious and nervous about it all.
And it is encouraging to hear you had a doctor that listened and didn't need blood results to treat you. It gets easy for me to blame my symptoms on something else or ignore them when they go away and I have "remission" from them, ya know? But they keep coming back. >_
So, you have relatives on both sides of the family with RA, your brother has psoriasis, and you have thyroid disease, most of which is autoimmune? Make sure you tell your rheumy about all these people. The tendency toward autoimmune disease does run in families, and you have it on both sides and in several generations.
Negative results on blood tests shouldn't get you thrown out of the office. As 2leftfeet points out, many people with confirmed RA start out seronegative. A large number eventually show positive bloodwork, but others never do. In psoriatic arthritis, which I have, negative labs is one of the criteria used for diagnosis. That said, some rheumys have a problem with this. Hope you get a good one.
I live in NC and have found that my rheumy is top notch. So, you may get very lucky.
I am also seronegative. Was diagnosed about 5 years ago after having symptoms for 5 years. I also have a strong family history of autoimmune issues. So, be sure to lay that out for your rheumy. You are doing the right thing by keeping a journal/log of your symptoms. Be organized in your approach, have a list of questions and concerns (prioritize these in case time is short) and a good rheumy will listen.
Sometimes you have to get a second opinion. Others have had to get many opinions before the right rheumy steps into their lives.
Don't be surprised if they repeat your blood tests (very common), do some x-rays, overall good exam of joints, etc. Also, don't be surprised if you walk out on the first visit knowing nothing more than you do now. They will wait for labs to come in. Sometimes RA has to "bloom" as mine did. Part of what sealed my diagnosis was my response to the meds they put me on. Be patient with the process!
Ask any questions - great group of people here willing to help each other out.
Keep us posted.
Linda
Hope this helps along with other's good advice here.
I have super severe RA, and never showed any positive blood results. I ended up with terrible deformities, and I can hardly walk. It your rheumatologist refuses to do anything, get a new one. What you are doing is not nearly enough, if you are still in pain.
Sorry to hear this, but be strong - you know you are sick, and you need to insist on acknowledgement of this fact!
Heck even my doctors NP was complaining about her doctor not taking any out of the ordinary symptoms serious enough. Ironically the conversation was about her thyroid.
Great advice. Pics, journaling......
Hard part can be finding that doc that will acknowledge the sero negative. Hopefully the first doctor you see will be the last & you will get the treatment you need.
RA & auto immune runs in my family also.
It's something any doctor would want to know & should consider.
Have a list of any questions,test results.......most want to run their own. Think they look for more then a PCP would.
Then there's Xrays usually ordered if RA is expected.
There are a lot of sero negatives that we've heard from.
Your not alone in any way.
Sammy
I am going to be calling my doctor back today and ask what's going o with my referral because the nurse never called me back Friday to tell me which rheumy I was referred to so I could make my appt with them. -__- I'm hoping I won't have to get 2nd and 3rd opinions from differen't rheumys, but I will if I have to. I just want to go back to not feeling pain every day
Linda
I pu the test name, then my result, the lab range inside the { }, and then the unit of measure. Am I chasing down the wrong rabbit hole looking to RA since I have family history of it with how my labs look? Or with the "seronegative" possibility cold I still be having issues without it showing in my blood at all? Which wouldn't surprise me - my thyroid issues took years and years to show in my blood. And now my thyroid is so far gone it looks like swiss cheese and my antibodies have dropped back down to what would be considered no AI disease now.
ANA (FANA): NEGATIVE ANTINUCLEAR ANTIBODIES, IFA
BASIC METABOLIC
GLU 88 {60-110} MG/DL
BUN 19 {6-19} MG/DL
CREA 0.8 {0.4-1.2} MG/DL
BUN/CREAT RATIO 23.8
CA 9.3 {8.4-10.2} MG/DL
NA 139 {133-145} MEQ/L
K 4.1 {3.3-5.1} MEQ/L
CL 102 {98-108} MEQ/L
CO2 25 {22-34} MMOL/L
AGAP CALC 17 {2-25}
EGFR 83.78 >59.99
COMPLETE BLOOD COUNT
WBC 7.1 {4.5-11.0} 10^3/UL
RBC 4.92 {4.20-5.40} 10^6/UL
HCT 43.1 {37.0-47.0} %
HGB 15.0 {12.0-15.0} G/DL
MCV 87.6 {82.0-101.0} FL
MCH 30.5 {26.0-33.0} PG
MCHC 34.8 {32.0-36.0} G/DL
RDW-CV 12.6 {11.0-14.0} %
PLT 286 {150-400} 10^3/UL
MPV 10.8 {7.8-11.0} FL
MO# 0.6 /MM3
MON% 7.8 {4.7-12.5} %
BA# 0.0 /MM3
BA% 0.4 {0.0-2.0} %
EOS# 0.2 /MM3
EO% 2.1 {0.0-7.0} %
LY# 2.0 /MM3
LY% 28.7 {20.5-51.1} %
NE# 4.3 /MM3
NE% 60.6 {42.2-75.2} %
*IG# 0.0 /MM3
*IG% 0.4 %
CRP
CRP