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...
Hi Y'all,
I'm new here - just diagnosed on Oct 25th of this year, and waiting for my first appointment with my Rheumatologist next Wed, Nov. 24th. I went to my family practitioner on Oct 20th with sore joints, and until that time, I never thought about RA. She mentioned several things that my problem could be, but didn't give me much info about any of them - then I got the test results over the phone by a nurse that I was positive for RA and they would be referring me to a rheumatologist - that's it, no other info. I live in Rochester MN so I am scheduled to go to the Mayo Clinic, and their website has helped quite a bit with the "knowledge" part of this, but the emotional part wasn't dealt with yet. I'm scared about what is going to happen and what meds/side effects I may be in for, wondering whom I should tell (husband and children know but no one else yet), and I'm worried that people will get real tired of hearing that I hurt.
Tonight I noticed that my knuckles are swollen. I sit in a cubicle all day, and I have a tough time getting up and walking down the hall until I get limbered up - I know it's just a matter of time before someone asks what is wrong. I'm also having alot of trouble with my elbows, and find it hard to play with my granddaughter sometimes. I'm only 46, so it's gonna be a long ride from now on.
Why do nurses just give you test results over the phone in an unconcerned manner, and then you have to wait and worry for 6 weeks before you are seen by a specialist?
OK - I feel better just writing out my feelings. Thanks for letting me vent, and thanks for all the helpful info here.
Take care,
Jane
I'm new here - just diagnosed on Oct 25th of this year, and waiting for my first appointment with my Rheumatologist next Wed, Nov. 24th. I went to my family practitioner on Oct 20th with sore joints, and until that time, I never thought about RA. She mentioned several things that my problem could be, but didn't give me much info about any of them - then I got the test results over the phone by a nurse that I was positive for RA and they would be referring me to a rheumatologist - that's it, no other info. I live in Rochester MN so I am scheduled to go to the Mayo Clinic, and their website has helped quite a bit with the "knowledge" part of this, but the emotional part wasn't dealt with yet. I'm scared about what is going to happen and what meds/side effects I may be in for, wondering whom I should tell (husband and children know but no one else yet), and I'm worried that people will get real tired of hearing that I hurt.
Tonight I noticed that my knuckles are swollen. I sit in a cubicle all day, and I have a tough time getting up and walking down the hall until I get limbered up - I know it's just a matter of time before someone asks what is wrong. I'm also having alot of trouble with my elbows, and find it hard to play with my granddaughter sometimes. I'm only 46, so it's gonna be a long ride from now on.
Why do nurses just give you test results over the phone in an unconcerned manner, and then you have to wait and worry for 6 weeks before you are seen by a specialist?
OK - I feel better just writing out my feelings. Thanks for letting me vent, and thanks for all the helpful info here.
Take care,
Jane
Kim
I had Ra and sjs and lupus for 10 years the first time I knew about it I thought it gona be easy no more than high blood pressure all I have to do is to take my tablet and everything will be fine but my GOD how horrible years I had wastting my life to heel my pains I don't lie to u I imagin my self that each new year I will feel less pain and I will have some peace but every new year I'm hading ahorrible days I hate it and still cannt accept it its so hard I don't wanna scared u I never had agood sleep the way I had I never enjoyed walk eat nothing ,it really destroyed my life and none around u will understand what happend to u my age is 30 but I have alook of 60 the way I do things I'm tired all the time and all I'm doing is sleeping itsnt going to be easy at all and expect everything will totaly change in ur life I'm sorry to depress u but that the reality, to know that I'm not alone who suffering really strength me and gave ahope and areason to handle it
Take care , may god help us
Hopefully your Rheumy doc will be a bit more sensitive and have a better bedside manner.
You should tell your husband and children. But other family members you could use a need to know basis. I remember telling my husband. I was crying and told him that I know I have RA eventhough the docs couldn't find anything. I told him if he wanted to get out now that I would understand. If he decided to stay I told him that he has to be prepared for the long haul b/c it's only going to get worse from here. And he said he loved me and would never leave. As for the kids, since they were smaller then I only told him in terms they would understand.
I hope I helped some.
Jenn
I told my children and my brothers about my diagnosis primarily for their medical history records. I don't tell a lot of other people...not sure why...I don't really care who knows as long as it doesn't become my only identity. When I sit for long periods and have to limp to get going, I just smile and tell inquisitive people that I have rusty hinges. I have to move them back and forth a few times to loosen them up.
I pray that you will get your medical cocktail worked out quickly, that your flares will be short-lived, and that you will have minimal damage. There is hope for relief. Hugs, Lois
A trick my OT showed me was to take one of those cheap $.25 bouncy balls that your kids can buy out of a gumball machine thing and then place it between your palm/hand and a hard surface. Then just move your hand and let that massage it. You can put different pressure on it and move it to where it feels good. Sometimes that helps me.
Good luck and hopefully your doc is able to find something that works for you. I live in ND and I KNOW that Mayo has killer doctors!!! I'm sure you'll find a good one....if not, you can come visit me and I'll share mine, she and her team are the best!!!!! I live about 8 hours from Mayo I think.
Let me know if you need the name of a Rheumy there. My Rheumy might know someone. I can always ask her, she's helped my friends and family both with free advice. :-)
Take care!
The good news is that once you get the diagnosis, you can begin treatment. I have just been transitioning from one med to another. It has been about 3 months since I have been able to use my hands without pain - esp. typing. I couldn't even use a pen my hands were so bad. Now, I am almost normal, and can even hold my flute without crying, and play as long as I want.
So don't give up hope. They will start you on the gentle drugs, but if they don't work, keep pushing for better treatment. Don't be content with partial control.
In Canada, only the doc can give a result, and only face to face. I think that would be very cold, getting such shocking news over the phone. I got my RA at 45, so I know how you feel. On the good side, I have been on disability for 11 years, and will continue tlll I retire. I still would rather work, but I guess a good disability plan is better than nothing.
I made it thru that flare, again with OTC creams, wraps and aleve and about a year later another hit, and it was much, much worse. This one went on long enough that I sought out a rheumy, I could not wear shoes, rings or even a watch I was so swollen and inflamed. He put me on prednisone and Methotrexate. It was a miracle! I felt GREAT!! I could have done cartwheels! I gained some weight but who cared?! Then the diabetes I had been controlling with diet went wild, and the side effects of the methotrexate hit me hard....
Long story short, I found a new rheumy, one who actually listened, cared, and worked with me. My first appt with her was on Halloween....when a giant Minnie Mouse entered the exam room I knew we were going to get along great! She started me on Enbrel, and just a few months ago we added Celebrex to replace several other anti-inflammatories that we have tried. I am still a bit stiff if I sit too long but that is gone within a few minutes of moving around.
I know I am lucky, I have no joint damage as of yet. I hope that your journey has the same result without all the bumps in the road.