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I feel like I am alone
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abcejevningferris posted:
I was told on October 13 that I have RA. I have not been seen by my doctor since she diagnosed me so I am just sitting here waiting for her to tell me what to do next. My doctors office never seems to get me in when I need to and when they send out referrals it takes forever. My doctor doesnt want to continue to give me pain medication she says I need to go to a pain specialist. I don't even know what that is. I know I also have to go get an MRI done and it's killing me just waiting for all this to happen I almost wish they would have never called me and told me what was wronf with me.. Does anybody have advice for me. All I want to do is talk about it with people but I think they think I am over reacting so keep my fears to myself. I could really use a friend I am 25 and have two young kids I am very scared.
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DIYSTER responded:
It's awful not knowing what to expect next and having to suffer the pain while you wait. Sorry to hear it is taking so long to get to see the Rheumatologist. That is a very necessary next step and he/she will want to interview and examine your joints. He/she will likely want to run more specific blood tests and maybe some more pictures before determining the best treatment plan for you.

I went through a very similar deal you are going through. It took several weeks to get in to see the Rheumatologist but thankfully he was awesome. Then it took about another month before I finally was given a treatment plan which initially consisted of Prednisone (got immediate pain relief) and Humira (biologic self-injections) which stop the RA from advancing. I also have severe Sjogren's Syndrome and was prescribed Evoxac which works wonders. I still have pain from the joint damage unfortunately. I was prescribed Tramadol by my new Rheumatologist (not thrilled with him but I moved to another state, oh well). I haven't tried the Tramadol for the pain yet but still have the script handy. I also have Fibromyalgia and Reynaud's. Finally, just a few months ago I learned I have Celiac Disease which quite frankly could have been what ultimately caused my RA. I'm working on ALL of these issues and have good days and bad. I know and respect my limits, most of the time, but when I ignore it I pay for it in the end.

I'm very lucky to have supportive family and friends but I have to say that the best support is right here on this board. We try to help and support each other as best we can. I hope you can find some comfort in coming here to talk with others who are in the same unfortunate boat. Hang in there! I hope you get into the Rheummy real, real soon! Best of luck!
 
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Byroney_WebMD_Staff responded:
Dear Abcejevningferris,

I just wanted to add my voice to DIYSTER's. If you check back on this board, you'll see other young men and women (some teens or younger) who have been diagnosed with RA. You may want to try looking for a support group locally.

Let me suggest RAtv. It is an excellent resource to learn more about Rheumatoid Arthritis. You can learn not only about getting diagnosed and working with your doctor, but about diet, exercise, and even RA in children. You can also meet real people like an exercise director, beauty queen, state representative, and even a black-belt winning grandmother—all dealing with RA and its challenges.

From here you can find links to Tracking Your RA Pain, How Well Are You Managing Your RA, and RISE, which is our educational program that can help you understand treatment options.

Make sure to check out April Cobb's Story especially. She's a mom of four kids, one of whom was diagnosed as the same time as her mom with Juvenile RA.

Keep at your doctor's office for those referrals--as many of the other members here will tell you, it's so important to advocate for yourself and your care.

Write back and let us know how you're doing,

Byroney
 
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LCover responded:
Hi, I saw your post and wanted you to know that I feel for you and I'm sorry you feel alone. It's easy to feel that way in dealing with this. I just recently joined because I needed to talk to others that can relate.

It seems hard to find good doctors depending on where you are. My doctor seems to be pretty good, I am just really frustrated with the medications and dealing with the side effects they cause. :oS Not a good feeling!

If you ever need someone to talk with, please let me know, I would be happy to chat. Take care!
 
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abcejevningferris replied to LCover's response:
Thank you for your response. They craziest thing is I still have yet to get any answers from anybody. I switched doctors which I shouldn't have because it is taking longer. I went to the ER last night hoping to get better answers but got no where. I am leaving for AZ in 10 days and guess I will have to stay in pain until I return. It's hard because I have two kids and have a hard time getting down and playing because it is hard getting up. How do you deal with it all?
 
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LCover replied to abcejevningferris's response:
Hi abc,

Prior to being diagnosed I was living on Ibuprofen and ice packs. My regular doctor prescribed Naproxen for me to control the inflammation until I could get into my RA doc. We only have two RA docs where I am and originally they said it could take one month or six months until I could get in. Thankfully it only took one month.

I'm sorry you had to go to the ER, you must have been in a lot of pain. I had a couple nights too (before I was diagnosed) that I would have gone to the ER if had been able. My best advice to you in the meanwhile is to take care of yourself...get as much rest as you can. The other thing I found helpful when I would have a painful flare up is to keep your mind busy, it helps to focus on something else besides the pain. The other was to keep moving (if you are able). I had a flare up in my hip and it felt a little better because I kept walking around until I could take a dose of Prednisone.

I'm sorry you are not able to interact with your kids right now, I'm sure that is really difficult. Just tell yourself that you will be able to soon...patience is definitely needed in dealing with RA. I really hope you are able to get in soon and start getting some relief.

My thoughts and prayers are with you!
 
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LCover responded:
P.S. One more thing...don't hesitate to call your RA doc back or make an appointment. I've had to talk with the nurses many times for help when I need it. Also be sure to express how you are feeling...sometimes that can help get you in quicker.


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