Hello new just diagnosed and scared

By jami Tuesday, August 31, 2010

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Hello and I am glad I have found this site! I have just been diagnosed with RA about 3 weeks ago thru my family doctor. I have been dealing with degenerative back disease and arthritus for 2 years. In the past few weeks my knees and ankles were swelling up and hurting along with my shoulders and wrists. In addition I feel like I had the flu. I went to my family doctor not knowing what was next. She ran some blood work and took some xrays, called the next day saying that I had RA and that she was going to refer me out. I am due to have spinal fusion surgery in Dec 2010 for my back and I am wondering if that wasn't RA to begin with? Currently I cannot walk for long distances, I have trouble climbing stairs, and of course I cannot sit, or stand for any length of time at all. Hopefully I will get on some good meds that will make things easier!

Comments (11) | Add comment

kfranz

9/ 1/10 6:44pm

Jami,

Hello and welcome to our community! This is a wonderful place with much support from other members and much information available to help you with your journey. Here is a place to start for the newly diagnosed.

http://www.healthcentral.com/rheumatoid-arthritis/just-diagnosed.html

I am sorry you are in pain and hope that the rheumatologist appointment goes well for you. There are also articles on here to help with speaking with your rheumatologist and other Dr.'s you will have.

Please keep us posted on how things go and how you are doing. Let us know if you have any questions as we have either gone through what you are going through or know of someone who has. Take care and keep your chin up!

Kim :)

ronie

9/ 2/10 1:59pm

Hi there,

You mentioned that you wonder if your degenerative disk disease (DDD) could possibly be related to RA issues. Well, there is a long explaination for the 2. Let's see if I can put this in as few words as possible cuz I tend to get long winded.

Weeelllll, DDD is more commonly related to osteoarthritis or osteoporosis where age, wear and tear or trauma is the culprit. The cushiony fluid and the disks of the spine are washed away causing as you know, lots o pain.

However, ankylosing spondylitis is more commonly associated with RA because there are blood markers that can identify it in a class related to autoimmune disease. The immune system turns itself on and attacks the spine and actually fuses the vertabrae together. Like RA, AS can also affect other parts of the body and organs such as the lungs and ribs making it difficult to breathe.

Treatment for DDD depends on the amount of degeneration. Early stages are treated with exercise, physical therapy, and medication. The meds include mild pain killers, muscle relaxers at night and antinflammatories either steriodal or non steriodal (may cortizone injections). Later stages are treated with surgery that will restore or replace damaged disk height (aka a fusion).

You mentioned you have surgery coming up. I wish you the best for that. I know several people who have had that surgery. They are doing just fine and are very active. But I know the time between then and now will be a test of endurance as you "patiently" await. hehe.

As for receiving meds that will help. If you are scheduled for surgery, you should already be on something from the list I mentioned, a pain killer, muscle relaxer and antinflammatory of some sort.

For your RA you should first receive a disease modifier to help reduce swelling, pain and damage progression, also if you are not already on one an antinflammatory. Prednisone, methotrexate and plaquenil are the first line that most rheumies attempt. They go from there. What you will receive will depend on evidence that the RA is being controlled. However, it takes time. A biologic like Enbrel or humira may be in order but your doctor will determine that. The biologics help a lot with pain but they are not generally prescribed for DDD so I don't know if they will help with that pain or not.

So, like me you can have both RA and OA and a bunch of other conditions that cause all kinds of issues and pain, but your doctor will help you to identify which is causing what. It took me many years to see and feel the differences.

I wish you all the luck in the world. We are here to listen and answer questions. Like Franzk mentioned there is a wealth of information hidden in the website. And you can drop me a line through the message box anytime. I am online everyday.

Hope I helped since i didn't seem to put the explanation in very few words. LOL

Ronie

RA_Factor5

9/ 4/10 4:06pm

Hi Jami,
As usual, Ronie hit the nail on the head with her advice (always get a second opinion stands out for me) and kfranz's recommendation of the just diagnosed link is worth the read. I never read that before, but think it is a very good summary of how things are with RA and what is known about the condition. I think a couple of things are important, both of which are covered in that summary;
1 - get your facts straight - many people don't understand the disease or how it effects our lives, it is up to us to educate as best we can.
2 - keep up to speed on your medications and follow through, it is important to know that they can suppress some of the damage RA can cause to joints and tendons.

You can read our posts and our personal stories here, it is good to know you have a community to ask questions.

Take it easy,
RA5

Lene Andersen, Health Guide

9/ 7/10 11:06am

Welcome to MyRACentral! As you've already experienced, we have a lot of knowledgeable and very supportive users here will be able to see you through this. In addition to the newly diagnosed link, I would also recommend you pick up a book called The First Year with Rheumatoid Arthritis - it's a terrific resource a learning tool that can help you get on top of your life again. To learn more about your disease, check out our area about the basics of RA and we've also just launched a pain management area containing posts on how to live with chronic pain.

We're glad to have you. Hang in there - it gets easier.

jami

9/29/10 9:31am

Went to Dr's appointment last week. She came in took a look at me, looked at my labs and said, "yep you have RA". I am going to give you a cortisone shot and come back in 4 months!.. WTF I still feel like crap....The shot isn't helping, and I am still in pain and tired all the time. She drew more labs, gave me a shot and sent me on my way! I am so frustrated, I waited so long and I feel like she didn't even care. Am I supposed to sit here for the next 4 months feeling awful, in pain waiting for my next Dr's vist.

Cherie

10/ 1/10 8:21pm

I had to ask my GP for a referral to the local pain clinic. There is a lot of pain involved in my joints and the rheumy didn't even offer pain medication. Keep in contact with your rheumatologist though and you can even suggest trying some medications you hear about on TV or online to see what they say.

svaughn

10/ 7/10 2:54pm

Hello everyone,

I have been reading posts on here for about 3 weeks now. I love all of the information that everyone is so willing to share! I am in need of advice so I hope someone will share with me.

I am a 38 year old mother of three. For more than 8 months, I have been suffering from complete exhaustion, severe pain, and low grade fevers on a daily basis. I have done much research, and I am almost certain that I have RA. My mother has RA and lupus, so it runs in my family. Most of my pain is in my feet, hands, wrists, neck and shoulders. I do, however, 'ache all over' every day. It feels muscular as well as in my joints. I am so tired every single day. I don't sleep well at night because I toss and turn most of the time, but even if I do sleep, I am still so exhausted all day, every day. I'm frustrated beyond measure.

My problem is--I have been to the doctor 3 times and have had blood work done. I know I have had my RA factor checked with negative results. All other tests have come back normal as well. My doctor initially suspected RA but is now thinking I don't have it...all because my lab work was negative. I know that people can be diagnosed with sero negative RA (25% of RA patients are sero negative), but it seems like my doctor is telling me I can't have it just because of labs.

I go back to see him today, and I'm not sure what to say. This is where I need the advice! I feel like he is going to say it's all in my head, when I know better. I've cried enough, hurt enough, and put my family through enough. I need answers. Please give me advice if you can.

Chuck

10/ 7/10 5:53pm

Hi SV

Sorry to hear about all your problems, life will get better with a proper diagnosis. There are several things that could be behind your symptoms. All of which are best diagnosed by a Rheumatologist. If you are seeing a Family Dr. you should see a Rheumatologist. My Famiy Dr. ,who I have the greatest respect for, told me three times I did not have RA. He sent me to a Rheumatologist anyway and my RA was diagnosed in about ten minutes. The sooner you can start looking for the right treatment the better.

Hope this helps and GOOD LUCK.

Chuck

svaughn

10/ 8/10 8:54am

Thanks so much for the advice Chuck. I did go to my GP yesterday, who FINALLY decided I needed to see a Rheumatologist right away. He made one phone call and I have an appt. next week. I'm anxious to get the answers that I need. I feel like I will finally get something done about this nightmare of problems!

Lee Monette

11/10/10 10:32am

Svaugn-

I am 44 and was diagnosed 11/7/09 with RA. I too am seronegative. I found a terrific Rheumatologist who treats RA aggressively. I have been on Methotrexate and Prednisone. I switched to Metho+ Humira. I am now on Metho., Enbrel and hydrocodone for pain. This disease is lousy but I am a persistant person. I will wait until they find the correct meds to put me into remisssion (if that ever happens!). I can relate to you so please find another Rheumatologist. If that one does not help find another and don't give up!!

Lee Monette

Cherie

11/10/10 1:00pm

Your pain sounds familiar to me. I have RA AND Fibromyalgia. I am seronegative as well but a Rheumatologist dxd me in minutes after seeing my chart and my symptoms. I have been through all the medications on TV and the one magic one for me is Rituxan. It is given as IV chemo two sessions two weeks apart and I get over a year in remission with it. I still have pain in my fingers and toes but the huge swelling flares are gone. Glad you are seeing a rheumie finally. Good luck to you and keep reading here. This is a great place for support.

Hello new just diagnosed and scared

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