I’m scared! | Arthritis Information

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I found out I have RA after having a nodule on my foot for 2 years.  I had surgery last summer and the biopsy tested + for RA.  I went to my Dr. for full lab results and I tested -.  I'm not sure what to think!  Is it in my head...am I crazy?  Most of my friends and family take it as if it never happened,  I'm not bleeding so I must be fine!  I have a high tolerance of pain so it is easy for all to think that!  What do I do next?  Theresa  Sorry for your bad news. You need to go to a Rheumatologist and start getting treated for RA. They should started you after you got the nodule and definitely after the surgery. It isn't in your head. And the response of your family is like the response of most friends and family at first. After some training and education, most of them start to get it. At least families do. I have lost friends because people don't understand RA is a really difficult disease.

Go to the Rheumatologist and ask for treatment. They will probably do more bloodwork and xrays. And, it might take some time to get you on meds. The meds take time to work so it is a long process. In the meantime, start building you a support framework of people on support boards like this one of others. There are several good ones out there. Also, note which friends and family members kind of get it and nourish those relationships. Learn about it so that you can teach others.

Come here to vent, cry, complain, explain, learn, share. But you are not alone in this. Lots of good people have RA.

Hi Theresa,

You mention that your lab results were negative and I just want to share with you that all of my labs have been negative so far.  I have what is called sero-negative RA. 

Deanna is so right about getting a good rheumatologist and treating the disease early.

Take care.

I live 2 hours from the nearest RA specialist and I have 2 kids, watch 3 others and .....I think I am making excuses....I am really denying what has already happened.  I have been told that I will be fine... I really don't feel that way!  Why don't I get the support I need from my friends and family?  It really hurts!!!!!!!!!!!!!!!!!!

I am sorry hunny to hear about your situation.  I agree with getting into the rheumatologist asap.  I have negative blood work also but a raging case of RA.  It is called sero-negative RA and is common.  It does not mean you do not have RA.  Some people never have a positive Rh factor in their lives.  The docs also look at other things besides blood work.  If they do not...and to quote my excellent family practice doc...."they are idiots." 

Sometimes we do not get the support we need from our family and friends because they do not understand about RA and the nature of the disease.  The key to that is education.  Research all you can about RA and present that to them.  This is an excellent site to help you explain what RA is like to your family and friends http://www.butyoudontlooksick.com/the_spoon_theory/ 

You will find a ton of support and caring people here.  keep on posting your questions!! 

Thank you, I will look into a specialist.  I think most of my problem is lack of knowing what to do, everyone telling me what to do and I have a high tolerance of pain.  When I had braces back in the 80's, I liked it when they tightened them.  I'm not saying I like pain, but I have a hard time feeling it.  The only thing that gets me down is being tired and or down for the day.  I live in AZ and love the sun...I hate not being able to get up. grammaskittles, I checked out the "spoon" story on the website you mentioned above.  I sure could relate to that story...it made me realize how much my life has changed recently due to RA.  It should help me explain RA to others who probably aren't going to understand that I now don't feel up to "doing lunch", "going shopping", etc. etc. as frequently as before.Yes, it's scary and upsetting---the first year is the worst! I can only reiterate
to please see a rheumatologist as soon as possible because the earlier you
get treatment the better off you will be in the long run. Some of your friends
and family will come around when they see what you're dealing with and
others may never "get" it, which is frustrating, but it just means you'll have
to relate to them on a different level. Good luck!

Please see a Rheumatologist asap. I know its a long way to go an with kids it isnt easy. Can one of the mothers whose kids you watch look after yours at some point so you can go to an appointment?Please dont ignore it even with a high pain threshold as the damage is being done if left untreated. I left mine and i really wish i hadnt.

Take care

I'm sero-negative too. My rheum told me that many family drs don't understand people can be negative and have RA. See a rheum for sure and get a 2nd opinion if you are not satisfied with the first rheum. It's important for you to get going on treatment. Good luck!

Laker

Theresa, Welsome to this board. You will get much support here.
Deanna's right , make plans to get an appointment. Sometimes it takes awhile to get your first appointment.
Grammaskittles, Thank you for the article.
Flamingo and thinkthinn you are very welcome!  It sure has helped me out with my family. 

Hi Theresa, welcome to the board. I am worried when I read your post. Everyone is right on. Can you go to a local clinic or er and get started on some anti inflammatories that will help with the pain, stiffness, and inflammation. That's what I did and they referred me to a good rheumatologist. How old are your kids? Maybe you can take them with you. Just get there!
On the good side.....you live in AZ. That's where I keep telling my family and friends I am moving to because here in IL we get lots of humidity and it's not good on my ra. lol

Take care of yourself.....

CinDee

Thank you all!  I read the spoon theory and was moved!  I have now decided to get help in Tucson (2hrs away) and hopefully the Dr. will help me with labs in Sierra Vista (1hr away).  I have also decided to journal my pains and swelling.  I think this has been going on for years!  I have 2 bunionectomys (at 20 and 25) and a nodule removal (34).  I was a massage theripist and have the forms and have converted them to journal my days.  I am so very happy in Az but we have been cold here and I feel the pain.  I will get treatment asap.  Thank you all and thank you Christine Miserandino for "The Spoon Theroy".. www.butyoudontlooksick.com
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