Rheumatoid Arthritis

I just found your board after searching about RA. I went to the dr. today because I'm having lots of pain in my hands and feet, both knees as well. I can hardly do anything with my hands anymore and my feet make it difficult to do a lot of walking or standing. I've been having the symptoms for about 8 years. I finally went to dr. and he suspects RA although I had a test a few years ago and it came back neg. I feel, though, that the dr. didn't take me seriously today. After seeing the xrays of hand and feet he said I should not be having the pain I'm having. I'm not a wimp when it comes to pain either and I told him so. He just made me feel bad for talking about my pain. I have gained a lot of weight due to not being able to be active anymore and he just talked to me about exercise and wanting me to go on Atkins. I told him I feel like a big blob because I can't hardly move anymore. I'm not on any meds. and he just wanted to know what was hurting me the most today. I had more bloodwork and he is testing for other kinds of arthritis. I'm just beginning to feel like this is all in my head. I can't get anyone to take me seriously and I'm really afraid the tests will all come back neg. Isn't that crazy? I feel crazy for thinking that but I don't want to think I am delusional. Has anyone else experienced this? I was just reading that many of you felt tired all the time. I feel that way. I just feel like I have no energy to do anything. What do I do?

Sonya,

My name is Cary and I can relate to your situation. I suffered with unexplained pain for years. My symptoms continued to get worse and more serious. I was finally sent to a Boston Hospital during what I call a flare up of my symptoms. I had unexplained fevers, joint swelling, and I began having respiratory symptoms. I was finally diagnosed with sero-negative polyarthritis complicated with a lupus component. The ironic thing is that all of my tests continued to be negative with the exception of increased muscle enzyme levels. I have been treated with a slue of medications.

The pain is still there every day but it is much better thaqt it was, and the flare ups are very few and far between. I used to be admitted into the hospital several times a years, and now I have not had an admission since december 2004 when I was diagnosed and treatment was started.

I am married and have four children, and my marriage is being strained because of this illness significantly. I am constantly tired even if I get a full night sleep. When I sit down at night with my wife I instantly start dosing off. My wife feels very lonely, and feels that I have not been a great partner lately. This hurts me terribly, I hate to see her so sad. I don't know how to fix this problem. I think I may have some depression because I can't live my life the way I should be able to at my age 36. I have a very hard time playing with my children or doing any work around the house. Just last week I painted a small bedroom for my twin boys with the help of my father in law. It triggered a significant inflammatory response in my hands. When these types of things happen I become very sad and it reminds me how this disease really affects me. I wish I new why I felt so tired, and wish I could find away to stay up past 8:00PM so that I can be a better companion to my wife. I am so afraid of losing her, if I can't fix this. My wife and I have the best relationship and are the best of friends, and I know she deserves a better life. This dam disease makes me live like an old man and I want to be able to live like a young man. I just needed to get a lot of this off my chest I hope I did'ntgive you a scare or to much info.

Sonya,
Hang in there, you are not crazy. You mentioned seeing your doctor. I'm not sure if you meant your primary doctor or a specialist, but if you haven't seen a rheumatologist, I would recommend seeing one after your doctor gets those new tests results back. People have such different experiences with RA and there are so many different rheumatic diseases aside from RA. It might be helpful to talk to a specialist, even if it takes more tests and time for that doctor to figure out how best to help you.

As a side note, it could still be RA, even if your test results show a negative rheumatoid factor and a normal sed rate. Not everyone has a positive rheumatoid factor.

I'll also say that if you have a public pool or rec facility near by, getting into the water and even just walking back and forth across the pool is a low impact way to get some exercise that's especially good for people with RA to keep us mobile. And I find that the steam room and whirlpool really loosen me up and make my joints feel better for a while. I know many of the local Arthritis Foundation chapters offer water aerobics classes, as do many of the community rec departments.

I hope this is helpful.
Christine

sonya,
i have ra and i know the pain you feel my prayers are with you. now you are the only one who knows how you feel so if the dr blows you off try to find a new dr. it took me three but i got a gook one now. this is my advice to you. first made a list of all of your questions so when you see the dr and get emotional or nervous you have a list to refer to to keep you focused next bring a friend family member or any one who will go with you. this way you have someone there to listen for you because we dont hear it all when we are in pain and also this other person can really tell you if your being blown off by the dr.so you dont think your crazy and they can ask questions for you also. I hope this will help you and dont give up.

lisa

quote:

Originally posted by sonya:
I just found your board after searching about RA. I went to the dr. today because I'm having lots of pain in my hands and feet, both knees as well. I can hardly do anything with my hands anymore and my feet make it difficult to do a lot of walking or standing. I've been having the symptoms for about 8 years. I finally went to dr. and he suspects RA although I had a test a few years ago and it came back neg. I feel, though, that the dr. didn't take me seriously today. After seeing the xrays of hand and feet he said I should not be having the pain I'm having. I'm not a wimp when it comes to pain either and I told him so. He just made me feel bad for talking about my pain. I have gained a lot of weight due to not being able to be active anymore and he just talked to me about exercise and wanting me to go on Atkins. I told him I feel like a big blob because I can't hardly move anymore. I'm not on any meds. and he just wanted to know what was hurting me the most today. I had more bloodwork and he is testing for other kinds of arthritis. I'm just beginning to feel like this is all in my head. I can't get anyone to take me seriously and I'm really afraid the tests will all come back neg. Isn't that crazy? I feel crazy for thinking that but I don't want to think I am delusional. Has anyone else experienced this? I was just reading that many of you felt tired all the time. I feel that way. I just feel like I have no energy to do anything. What do I do?

Sonya,
I think you should see another doctor and get a second opinion. A good doctor will explore all avenues and try to help you find out exactly what is going on with you. It's not all in your mind. I've found that female doctors seem more compassionate, patient and are generally better listeners. What has helped me deal with RA better is having the support of my doctors and family members. I have taken my husband with me to appointments so he can get information and ask questions about how to help me cope better. Having someone with me helps keep me balanced. Sometimes it gets overwhelming, and I need someone who's not in pain or stressed out to help me see and hear things clearly. I had to learn how to not be so hard on myself and to try to see things from different perspectives. It really helps to have support. Hang in there Sonya and God bless you.

Preeca