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Please help me understand what my results mean

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Posted 8/25/2009 1:12 PM (GMT 0)
hi. I went to my doctor over 2 months ago with severe joint pain in my right shoulder, and both fingers and wrists. I also have very bad fatique and recently my other shoulder has been feeling some pain. The doctor did some tests and I had a positive ana, an elevated c-reative protein and a positive anti-rnp result. I understand the ana and c-reative protein result but I am not sure about the anti-rnp. I know it is to do with connective tissue disaeses but I don't know if a positive result means that there is definitely something wrong or if you can get it even if there in no disease. I have to wait for another 2 months before I can see a rheumatologist and my GP is not helping. There are days that I can't lift anything as my wrists are so weak and I also get numbness in my fingers that make the tips go white and then pins and needles. I wish my GP would give me some pain relief for all this but Im scared of asking them now as they have not been very supportive. I can't wait 2 months to see a rheumaltologist without some form of relief as its affecting my whole life and my relationships as people seem to think that Im making it up. Please help.
Posted 8/25/2009 5:14 PM (GMT 0)
Why can't you call the rhuemy doc office. I'm sure they would help to answer your question. I always call if i need answers. this is not an easy thing to go through. I want answers, so i don't loose my mind in the process. turn

good luck, I wish i had the answer, but i too am in the begining stages of this testing too. Laura :-)
Posted 8/26/2009 1:03 AM (GMT 0)

Hi Lynny,

I had the exact same problems when I was first diagnosed about 4 years ago.  I couldn't even lift a gallon of milk.  It hurt so bad.  I was diagnosed with Mixed Connective Tissue disease.  The key to that was the anti-rnp.  I have a positive one also.

Anyway, I would push to see a rheumatologist sooner or go back to  your regular doctor.  I am taking plaquenil,methotrexate, vicodin and tramadol to help me get through my days.  It isn't a fun disease by any means but you can get to feeling better if you treat it.

Mary Ann

Posted 8/26/2009 9:26 AM (GMT 0)
Hi, thanks for your replies. I hope that I will get some answers soon. I have made an appointment to see my doctor next week as I can't wait for months to get something to help my hands and wrists. I get so frustrated not being able to do everything I want to and used to be abe to but I am now realising that until I get treatment I am going to have to slow down. It is a relief to know that others know how I am feeling as these symptoms make me feel so alone sometimes as no one seems to understand or believe me. I was wondering if anyone had a symptom of the wrists or affected joints feeling warm to touch and sometimes red. Is this inflammation? I took simples anti-inflammatory pills and creams but they have not worked so I thought it was maybe something else. Thanks again for your replies and I wish everyone the best of luck! God Bless xo
Posted 8/26/2009 1:28 PM (GMT 0)
Lenny,

I suggest that you call your PCP and talk to the nurse and explain the situation. Tell them that you aren't looking for long term pain relief, but just something to get you through the next two months. At that time, hopefully your rheumy will prescribe meds that will help control your disease. I feel confident saying that with your symptoms and results there is clearly some kind of autoimmune condition going on and I sympathize with you because I remember well those days prior to diagnosis when my hands hurt so much I wanted to scream. It's the unrelenting pain that is the worse. I just wanted a break from it, even if for a couple of hours.

You also might try icing your hands. I also got relief from soaking in a hot bath. Whatever gives you temporary relief. Do you work outside the home or are you able to rest. Rest is very important to those of us with AI disease.

I'd also encourage you to read the first post on the forum. It has lots of good tips on how to prepare for an appointment with your rheumy and other information about lupus that you might find helpful.

In the meantime, stay in touch here. We'd love to know more about you.

Hang in there,

Pat
Posted 8/26/2009 2:17 PM (GMT 0)
Hi Pat,
Thank you for your reply I really appreciate you taking the time to share your thoughts! Unfortunately I do not work from home so cannot rest much during the day however I must say that my boss has been great about everything and I couldn't ask for better treatment from work. I have an appointment next week with my doctor so I will be asking for something to help until I see a rheumatologist. I have tried ice on my shoulder and it made the pain worse for a short period of time, so I am too nervous of using it on my wrists incase the same happens. Heat and hot baths helps however as Im sure everyone knows this is a short term relief but im am so greatful for any break in the pain. I will have a look at the first post for some tips on preparing for my rheumy appointment- thank you again for all you support and advice- it is greatly appreciated.
Posted 8/26/2009 4:09 PM (GMT 0)
Since I think what you're describing with your fingers may Raynaud's disease symptoms, icing your hands would be quite painful and dangerous.  Raynaud's often accompanies autoimmune diseases.  The tips of your fingers turn white and cold.  My toes and the tip of my nose do it, too.  I get some relief when I wear gloves and avoid cold temperatures. 
Posted 8/27/2009 4:16 PM (GMT 0)
Hi Lynny,
I had a all of your symptoms. Yes it is inflammation. I have Polymyositis, with Mixed Connective Disease, Sjogrens, and now Interstitial Lung disease. The Polymyosists is translated to many (POLY) muscle (MYO) and inflammation (ITIS). my Ck was at 9000 before any action was taken, I almost died because of the wait game the doctors put us through. Prednisone, although a bad drug on the body will bring you back, some people have bad side effects, but I know it saved my life. Get your labs and see how high your CK is. Normal is 150 I think, although it depends on the labs and what scale they use. You have a right to them. Keep a folder,and get a copy each time you have a test done. Time will pass and you forget what drugs they have tried that did not work. I have been sick for 8 years now. I finally got a new rheumatologist. He is trying new medications. I am willing to try just about anything myself because the Prednisone is taking its toll on my body and is not controlling the disease as well as it was in the beginning.
I got so I could hardly breath or swallow, my heart pounded a million miles an hour (it is a muscle too) along with the esophagus. It can be a life threatening disease if not treated. Keep calling, crying,and bugging them. It took me 2 months to get pain meds in a high enough dose to take my pain away.
I waited 3 months to see a Rhumy and then it took him another 3 months to take a CK test, stupid head, then he wanted to do EMG (electric needles test) then a Biopsy, by the time he decided it was Polymyositis I was in a wheelchair and out of a job that I had for 17 years! 60 mg of Prednisone is what I started on, what a relief!! It is a miracle drug. I am now on Cellcept, and down to 12 mg of Prednisone. I have had 2 infusions of Rituxan. All have really helped. Remember SQUEAKY WHEEL GETS THE GREASE.....You have to make yourself heard, don't take no for an answer. call the rheumatologist and tell them you are desperate and would like to be called if there is a cancellation, PLEASE...
Good Luck, Karen

Post Edited (karen7043) : 8/27/2009 10:40:43 AM (GMT-6)

Posted 8/27/2009 4:38 PM (GMT 0)
Hi Lynny,
I did not mention that my illness started out like yours, pain in the hands, wrists and shoulders. Then my knees and the muscles in my arms were sore. Hot showers were my best friend. This all took place in a matter of 5 months. It took a year before I was treated for my true disease. Like PattyLatty said, rest is VERY important, make time to rest. Avoid stress if at all possible. Stress aggravates people with AI Diseases a LOT....Hang in there....Karen
Posted 8/28/2009 8:44 AM (GMT 0)
Hi Karen,
Thank you so much for your advice. I have noticed the muscles in my upper arms getting very sore recently but I assumed it was because my shoulder was very sore. I am on no medication yet apart from taking normal anti-inflammatory tablets but they don't do very much at all. I am going to tell my doctor everything next week when I see her, I have requested to see the doctor that dealt with my mother who had SLE so hopefully she will be understanding as she seen what happened with my mother. Hopefully she can give me something to help until I see the rheumatologist! I definitely know what you mean by stress aggravating things, I have noticed if I get upset or frustrated (unually at about 8.00pm or 9.00pm when I am alone as my husband works until midnight) that the next day I seem to be very stiff and in more pain. I am trying not to think about things too much, before it was all I could think about but I realised that I need to focus on what I can do and focus on seeing family and good friends and enjoying myself. Thank you for sharing your experiences with me, it helps to know that what I am experiencing is not all in my head as some people seem to think, but I have tried to distance myself from these negative people as it does not help to be told that "everyone has aches and pains so deal with it". Thank you again and I hope to hear from you again!
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