Question about Rheumatoid Factor?

Can anyone tell me what the rheumatoid factor has to do with Lupus? My doctor said mine was pretty elevated and I have swollen lymph nodes all over, a bad rash on  my face and chest, swollen belly (look pregnant), interstitial cystitis, purple spots on different areas of me, my hands and feet (or even arms and legs at times) go completely numb for no reason, have a prickly/tingling feeling in them at times, feel like cold water is running down my arms or legs at times, have some lumps now on top of my head that are oozing some kind of clear fluid (like a knot you might get if you hit your head real hard on something except that I have not had any kind of bump to my head and there are a few knots there), real dizzy at times, vomitting, and sometimes have a ringing in my ears. My toes often look purple and I am extremely tired all the time--I mean severely tired for no reason at all. I can sleep all night and still need to lay down after being up for an hour in the morning! I ache all over real bad in my bones too. My doctor is trying to determine if I have lupus or not but I am wondering if any of you who do have it could help me at all? It is taking so long for this to be diagnosed. He did bloodwork and said I had too high a rheumatoid factor. He did x-rays of all my joints and is seeing arthritic condition in there (I forget what word he used). He said my back is scoliosis. The ultrasounds of all my lymph nodes showed a lot of swollen nodes all around my neck and behind my ears area as well as linginal and groin area and they said there are some in my abdomen where there shouldn't be lymph nodes at all?!  He said it definitely looks like an autoimmune situation but wants to determine exactly what it is (which I am so grateful that he is trying to finally get a true diagnosis on the condition as I have been in extremely severe pain for a long time now), The pelvic pain that is the worst pain is from the interstitial cystitis and I am being treated for that--so although it could take a few months to get relief from that, they said I eventually will. But the other symptoms outside of the bladder symptoms (frequency, etc) that I am having they said are not from the IC and something else is going on. Anyways, he is going to send me to a rheumatologist and supposed to call me this afternoon with the appointment but warned me it could be a few months before I could get in!!!! (which by then I bet a lot of these symptoms will be gone because the last episode I had, by the time I got to the specialist that time they had gone and I felt stupid seeing the doctor and told him I was fine at that point!) But I did not know that I had an episodic condition at that point and just assumed whatever it was had gone away and that I didn't need to see the doctor anymore! But it keeps coming back worse and worse and I just can't deal with it too much longer. I need to know what is wrong so I can figure out what I can do about it. By the way, the only thing that has given me any true relief from the symptoms within just a few hours has been corticosteroids (as long as they were at a high enough dose). I don't know why and the doctors don't either.  Any thoughts anyone? I would be so grateful!!!!

Thank you Lynnwood! I did not realize that I couldn't ask about something in more than one thread--apologies--I am new to this. Is RA the same as a rheumatoid factor? My doctor said it was a nonspecific test that looks for any type of inflammation in the bloodwork which can be indicative of any autoimmune disease...?  Thank you for all your help and tips. I will keep track of it all and I am sure trying to get in to see a rheumatologist sooner if possible! I need some answers and trying to keep up with school and a 15 month old is not easy right now!

I have IC. I've had multiple organ prolapses that caused pressure, pain, hydronephrosis, stress incontinence, burning, frequency (extreme at times, try 30 to over 100 times a day), urgency, all that fun stuff. They blamed it on the IC but my bladder inflammation doesn't flare like that. Surgeries helped but now I am having neuropathic pain in my pelvic area so I have the pressure, frequency, when I lay down in bed, and incontinence from time to time. My bladder has taken an odd shape during filling. I think it might be neurogenic. I took elmiron and overactive bladder medications for a long time, I did not respond to them at all. Hopefully your medication will help you, but if you find after a while it doesn't do anything or the hydrodistension's don't seem to make a difference, I'd have the issue looked into further. The medication they injected me in the office gave me a little relief from the burning and irritation I've felt in the past, but that was as good as it got for me. Hydro's always gave me UTI's.

Lupus is diagnosed by having "4 of 11" symptoms. Unfortunately there is no definitive lab test or symptom that totally says YES or NO to to the SLE question. Check out more about lupus at tinyurl.com/HW-LUPUS.

You can have Lupus with a positive or a negative ANA. You can have a positive ANA and not lupus, but possibly another auto-immune disease of some type. Sounds like for now you just have to get your labs done & wait for the results.

Hope you feel better soon!

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Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 4/7/2011 4:50:37 PM (GMT-6)

Well... the fam doctor office called today and said the soonest I can see a rheumatologist is November! My insurance won't  cover some other group that could have seen me in July or Aug... either way--both are an eternity away as sick as I have been and I totally give up!!!  I don't know what to do anymore and just can't deal with this. I don't understand why the doctors cannot do more--why they keep sending me from one to another to another and NONE of them takes responsibility to relieve any of the severe symptoms I am having. I am in so much pain and in bed--and I have always been running around, building houses, climbing ladders, in college--extremely active--and I can't get out of bed the past couple days. THIS IS INSANE... I am sorry to be so negative and I don't blame you if you don't want to talk to me anymore... but I am ready to give up. I can't deal with this pain any more.

Thank you Lynnwood. I am on an insurance that runs through GA medicaid. So the doctor's office said the issue was that none of them take my insurance. During open enrollment a few weeks ago I changed to one of their other optional insurances through medicaid (there are 3 total to choose from) which more doctors participate in but it won't be useable until May 1st. So they said they are not even going to schedule anything until the insurance changes over because they need the new number for me to schedule it! They said no one will see me before then either way because they are too booked.... My husband said he will take me to another state if he has to if it will help. He has been SO supportive and the only thing keeping me going (and my children!) If it weren't for his belief in me and understanding I think I would go mad from these doctor's uncompassionate and uncaring manners.... I wonder what they would do if I were their sister, mother, wife, or daughter? I don't think doctors look at it that way! Thank you again Lynnwood!!!! You give me a lot of courage when I feel really down!

Thank you! I'll try that and let you know. I really appreciate  you!

Well, I really appreciate you (this is Nicki by the way)! You have been a tremendous help and comfort to me over the past couple days where I don't know what I would have done if I had not been able to turn to you for help. I know we have not "met" as such, yet I feel like you are a guardian angel out there just making sure that we don't give up hope! I hope you never feel like you are not noticed--because I can't tell you how much you have meant to me although I am very new to all this and to this forum. Thank you again!!!  Nicki