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    Newly diagnosed with RA....scared, upset, depressed....
    JerzeeOT posted:
    I was just diagnosed last week with "mild (early) RA" after about 2 months of testing and labs. All my bloodwork was negative and xrays were normal. Ultrasound of my hands revealed mild swelling in the joints but no joint damage. I'm seeking a 2nd opinion in November b/c i didn't like the RA docs explanatation that if he had to pinpoint a diagnosis, he'd "call it mild RA". What is THAT supposed to mean?? Do i or don't i have it?!?! He said there is a large grey area in rheumatology that some patients fall into - seronegative blood work in my case and mild swelling. My chief complaints are pain, swelling and stiffness in my hands/fingers especially in the morning and at night. It is so hard to do the normal everyday things like take care of my 1 and 3 yr old, make meals, fasten clothing, manage car seat buckles, etc. My pain has been on/off since the birth of my son in 2007 and i've never really connected the dots so to speak with regard to my symptoms. I've always written them off as this or that, but never really gave them much attention at the time, until now. Now everything has changed - everything. I can't open the shampoo, i have difficulty living my life and doing every day things. I'm in so much pain. I'm an Occupational Therapist by trade - my job is to make OTHER people's lives easier and now my own is becoming harder. My job is to use my hands - fingers - to help patients with ADLs which i myself have difficulty doing. I'm depressed and feel like my husband just doesn't understand the impact of what this could mean. I need to hear some uplifting "it'll be ok" stories. I'm feeling as though a black cloud is upon me and keep seem to kick this funk i'm in since hearing those words last week. Thanks for listening.
    jtokeefe73 responded:
    Dear JerzeeOT,

    I was reading your post, and I felt that I had to write you to encourage you . I myself do not have RA, but i have a girlfriend that has it. She was diagnosis from the RA DR. about two years ago here in Seattle . She has her good days and her bad days with RA. At first I didnt understand what she was going through. She tried to decribe it to me as a funk at times.. Sometimes it has restircked her to the bed. So your wondering why Im writing this, I guess I'm asking your husband to read up on it so he has a better understanding of what your going through and how sometimes the everyday things can hinder you in ways that on your good days seem normal. I see my girlfriend go throught the ups and downs with RA. there are days that I feel helpless when she has her bad days. Just reading up on it, has giveing me the understanding that I need. She tells me for her that she has to keep moving or the joints willl hurt more. But you already know that from the job you doin life. LOL . Stay up beat. keep living life as normal as you can. Dont stop the the famly outings that keep your family close. Go at your speed. We still go hiking and camping and other fun things. It was the reading up on that has helped me to understand her abilities. You will have days that you be angry, and depressed, but step back and take a deep breath, and dont let this beat you !! Be Well!!
    Byroney_WebMD_Staff responded:
    Dear JerzeeOT,

    First of all, Jtokeefe73 has done an amazing job of explaining what it can be like to be with a person with RA. I hope your husband shows the same amount of supoort Jtokeefe has for his girlfriend.

    I know your diagnosis isn't 100% "for sure" at this point, yet how upsetting the possibility is. RAtv 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.

    I'm sure some of the other great members here (RAers) will have words of encouragement and support for you too. Write back with an update any time you like.

    Best wishes,

    Hamm001 responded:
    Hello, I just had to reply to you. Please don't feel like all is lost. I have lived with RA for 10 years, I was always so active, so strong, I must let you know how important proper diet is and you must stay active or as active as you can. The Rheumatologist will help you but you need to study and find the best treatment for you or one you can agree on. Food has been a big trigger for my swelling and pain, I stay away from processed food as best as I can, no dairy, NO MSG!!!!! Read the labels on the food, it is so important. Eat as fresh as you can get, watch out for any added stuff, even in ground turkey or chicken you will find additives. I try not to eat bread either. everyone is different so do research and try to be as positive as possible. I need new knees now but the Ortho Dr. said I was too young so I just limp along and do what I can, I know how you feel, I work as a vet tech and do paperwork now which is ok with me, I get depressed but you cant give up! Get pain meds but be careful with them, I maybe take 1/2 a tablet of viocidin (spelling?) when the pain is real bad, I know its hard and it makes you mad but all we can do is deal with it and offer support, remember someone always has it worse. Use pump bottles for shampoo and bath soap, use your forearm to press down, use your elbow to get out of the bath, believe me I'm the queen of finding a way to do Don't let RA live your life, YOU live your life, only someone that has your pain knows how you feel, people don't understand the pain we go through, its like a nightmare sometimes but we gotta get to tomorrow, the pain will be better tomorrow. Please try the food thing, it might surprise you....stay away from all fast food......If I'm waek and want to eat it I know I will pay baths help me get moving in the morning and my over the counter pain meds. Keep positive!!!! Worry seems to make me hurt more too, strange I know........Hope I could help, all the best of luck
    JerzeeOT replied to Hamm001's response:
    THANK YOU everybody for all of your kind words of support, encouragement and inspiration! I was overwhelmed reading how supportive you all are of me and for that i am truly appreciative, so thank you. I am trying very hard to manage the pain right now - that seems to be my biggest hurdle at this point. As well as the crummy mood i've been in for over 2 weeks now. My family doc told me i can take up to 3000mg of Tylenol/day for the pain and i'm continuing the 200mg 2x/day of Celebrex until my second opinion appt on 11/2. As you all know, it's hard to just get thru the day - and the last thing i want to do is have my kids suffer b/c Mommy can't color or play with the pegs or do puzzles. I need some relief and i need it soon - the pain is impacting my ability to live my life and interact with my children and i hate that i'm so so sooooooooo exhausted. I feel like i did when i was in my 1st trimester of pregnancy, i'm THAT tired. I think once i get a handle on my pain then my mood will improve (i hope!) I will try to keep a positive outlook and will definitely take your suggestions on diet and activity - thank you again for all of your kind words and support. I'm so glad i found this forum as an outlet to vent and to learn about RA.
    bnthr replied to JerzeeOT's response:
    My family doctor didn't want to admit I had RA, although it was obvious to me! My blood work results were not definite. I found a good rheumatologist who re-ran the blood work. She said I had RA. As she explained, there is a broad range of results that indicate RA; I am at the "mild" end of the range. I was like you. I couldn't get the tops off containers, I couldn't open doors with round knobs, I had difficulty holding on the steering wheel, etc.! The pain was pretty intense.

    I cannot take some of "first defense" RA medications due to other health issues I have. I started on methotrexate. I must admit I do not like it due to the nausea. But, I've learned that I can take it immediately before going to bed, and I fall asleep before the nausea hits me! LOL! The results are pretty astounding. My hands may get a little stiff in the morning, but that quickly vanishes. I can move my fingers, grip door knobs, open any container I want, etc.!

    Hang in there! There is hope for you with good RA medications similar to methotrexate.
    sgcheer77 responded:
    Dear JerzeeOT,

    I was diagnosed with JRA 3 years ago. I was also depressed like you because I wasn't able to figure out what was wrong with me. I always had pain in my wrist, shoulder, and fingers. I went to the Rhuemologist after 3 months of enormes swelling in my wrist. I was diagnosed 3 months later. My symptoms have just gotten worse and worse. After, 2 months of steriods I felt much better, the swelling went away and i had more movement in my shoulders. After a year of just inflamation pills i started to have a lot of joint damage. I am now 17 years old and take chemotherapy for my JRA. Stay strong you will see that everything will get better. Go to a different doctor he will help you!
    thebigyellowbus replied to Byroney_WebMD_Staff's response:
    I have been recently diagnosed with RA. I awoke one morning unable to get out of bed. It was in my knees and hips and shoulders. I have been battling with it for weeks. I've hit highs and lows after taking my medication. I had it in my hands and fingers just recently. The flare ups are painful. I had to pull myself up the stairs with my hands. I have weekend legs, and sleepless nights. I would awake at 2 am and stay up. But I found Aleve works when I am at my worst to get through the day in conjunction with my medication. If you usually get up at 7am, get up 1 hr earlier and take two if you feel it coming on. It will take the edge off and you'll be able to cope. I am only 52 and have been active. This came on slowly and I just thought it was normal aging. I hope the Aleve works for you.
    dogsandbooks responded:
    JerzeeOT... In 1982 at 41 I knew it was RA, although all I had was a painful little toe. Growing up with a mom with RA, I just knew, and went directly to a rhuematologist. Back then aspirin was the first line of defense, then, as things didn't improve, the meds were stepped up to the next level. Today, RA is fought right away with the big guns, which not only improve your lifestyle, but help keep disfiguration at bay. Most of those "big guns" require Methotrexate alongside. I've had no problem with that drug, even at a high dose. How lucky you are, if truly diagnosed with RA, to live in today's world of great new meds! By the way, my mother lived to age 89 and her favorite sport was dancing at the senior center. You're going to be fine.
    Have2Hope replied to JerzeeOT's response:
    Hi JerzeeOT,
    Don't give up hope! I have had RA for about 5 years and was at the point where you were - couldn't wash my hair, turn the key in the ignition of my car, hold a cup of coffee without pain. After using plaquenil and methotrexate and getting some relief, I had to quit methotraxate because of liver problems. I have been taking Enbrel injections (with plaquenil) for over two years now and I am SO normal I can some days forget that I have RA. Perhaps you don't need biologics at this point, but I would offer the following suggestions (there are solutions out there!):
    1. Find a rheumatologist that will listen to you and be a partner in your care. Remember - this is your life!
    2. Do all the research you can - educate yourself on RA. Web MD is good, but also get a couple of books on RA/immune system disorders.
    3. If your hands hurt, request an xray so you/your doctor can assess any damage and develop a care plan from this baseline (I have RA in my finger/knuckle joints, too). Don't delay your treatment!
    4. Get some exercise to relieve stress, help your mood and keep moving. Walking is good, so is TaiChi.
    5. For me, the fatigue is the biggest thing (plus taming my Type A personality). I know now that I can't go shopping for more than 3 hours at a time and I have to sit down and rest between activities. I can't handwrite anything for more than 15 minutes (but the keyboard is my friend!) Sometimes brain "fog" sets in if I don't sleep enough, but I have become an excellent napper! Be patient with yourself. Find your limits and do your best to stick to them. Ask for help, try not to do as much. It's hard because you probably don't look "sick." but you do have a real illness and you really need to take care of yourself.
    6. Be gentle with yourself - you are grieving the loss of the capabilities you once had and adjusting to new parameters.
    7. Don't lose hope! If you have a faith life, lean on that and rest in it.
    8. I just had a check up and my inflammation level was a 1 (about the lowest it can be) even though my CCP antibody test (for RA) was 184, about 18 above what is considered normal! But, I feel great and I am grateful to be living a full life!

    I will keep you in my prayers, JerzeeOT
    libitotz replied to Have2Hope's response:
    Hi JerzeeOT- I have had RA for 5 1/2 years and I remember that feeling of helplessness and doom when I first got my diagnosis. It does get better, especially with the help of your family and friends. Researching and reading up on RA will help you, your husband and others to have more understanding about the disease and what you are going through. Finding a rheumatologist who will listen to you and work with you to find the best medication options is vital. I take Arava, Plaquenil, prednisone(2.5 mg) daily and have been on the biologic Humira for a year. My labs and X-rays are all good and I have had no serious side effects from any of my meds. I still get fatigued, but nothing a good nap won't cure! Everything hurts more in the morning, but I go slowly and after I warm up with my green tea I'm good to go. I agree with those who have said to watch your diet. I found that cutting down on dairy, red meat, salt, caffeine and processed foods helped with the inflamation. I also take 4000mg of high quality fish oil every day to help with inflamation. Swimming is a wonderful exercise that is easy on the joints, especially if you have access to a warm water pool. Take heart and have courage - there is lots of life to be lived, even with RA! My prayers are with you.
    MicheleMcGlone responded:
    Dear Jerzee,

    I have been diagnosed with "evolving RA". It started in April 2010 and continues to this day. My rhuematologist wants me to go on Methatrexate or Plaquenil. But they won't cure it, can have side effects and don't work forever.... . I do not accept that this "disease" has no cure. SOMETHING is causing my body to attack my joints. I have to figure out what it is and stop that process.

    I found an MD who practices alternative therapies for RA and other ailments. He has me on antibiotics and has tested me for food allergies, hormones levels and many other things.. I go back to him on 10/27 for test results. Meanwhile I think the antibiotics are helping.

    Buy and read "Conquering Arthrtis" by Barbara Allen (you can get it on Amazon). She also has a website

    Also, How to Eat Away Arthritis by Laurie Aesop.

    There's a ton of other books out there but these are the only two that I have gotten through so far.

    These books are a little hard to read and following their suggestions is complicated. But it's a complicated situation! It can't hurt you to try and you'll get such a boost when you realize that one or more of the suggestions is actually making a difference.

    Also there are some good videos on Youtube (don't watch the scary ones! just the positive ones). Also Dr. has his entire antibiotic protocol right on his website.

    I have drastically altered my diet (no alchohol, caffeine, sugar or processed foods) I also went on a 7 day cleanse/fast. It was not that bad or hard to do and the results were amazing. I was basically symptom free for several days until I started eating normally again... Plus I lost like 10 pounds !! Nice bonus.

    That's when I realized I needed professional help to guide me on my quest to heal myself.

    Don't give up. Learn all you can and try everything..Find a doctor who is open to or is practiced in holistic medicine. I believe the big time drugs should be the last resort.

    I found that discovering that I had some control over this thing keeps me from getting depressed and angry about it.

    Sorry this is rambling. But I think I konw how you feel and I wish the best for you. Goodluck!
    AlwaysBlessed43 replied to Byroney_WebMD_Staff's response:
    Hello! I was diagnosed with RA on August 5 of this year. I wasn't surprized that I have it because it runs in my family. I just went to a Rheumatologist and she is very understanding and is going to help me with this disease. Seven of my fingers are starting to disform and two of my toes. I have had pain for some years now, but when I could't get out of my bed and walk one day, I knew something was terribly wrong.

    A tests on my liver came back negative so now I am waiting for the results of my ultrasound. I am so depressed and in so much pain. I was taking vicodin until I had a bad reaction to it. My doctor started me on Prednazone until all of my tests come back. Im so scared that im going to lose function of my hands.

    To make things even worse, I lost my job just to days ago and my insurance stops on November 1st. I really need someone to just understand what im going through right now. I just want to be a least half normal again and find out how to cope with everything that's taking place in my life right now.

    Please help me!

    Always Blessed
    nindyalone replied to AlwaysBlessed43's response:
    Hello there, I feel where you are coming from. I was just dianosed in Jan. after getting mad at the pain and quit feeling sorry for myself I got out of bed and started looking for help, I at least know what is wrong now. I have not been able to get an RA specialist to care for me for I have State Medicaid Insurance for I haven't been able to work for 3 years, no one will except it. I am looking all over for information. I also have vasculitis and degenerating Artritis and Fibromyalya, more medical problems then I want or need but I am trying to deal with this w/ it all. I came to a point in my ordeal that I just wanted to die. i don't want that any longer, I want to fight. Just wanted you to know your not alone I know I feel alone but I'm finding I'm not. Take care and stay strong.
    Gran2B responded:
    When I first went to a well renowned Rheumatologist in my town he prescribed all these medications that sent my body into shock. Couple types of chemo, shots I gave myself that if I could have tolerated them would have been for two yrs. Finally a mild chemo drug hair fell out in clumps couldn't tolerate that and now finally Morphine SR 3 X day and Hydrocodone 10/325 4 x day for breakthrough pain only. He'd switched me to Percocet I itched all over and asked to be put back on vicodin which he did but I didn't notice they reduced the amt of pills I got so I was taking them 4 x day like it said to and when I called to renew the nurse calls What, are you trying to make us look bad?! No, I was in pain taking it like the script said before they took the Percocet back--had to return the percocet before they would give me a scipt for vicodin. The only thing is my left elbow has had a goose egg of fluid on it for months the pa got 60 cc's off the first draw off and 3 cc's the 2nd draw off, but it's begun to swell again and since it's my outer elbow it's really hard to put compression bandages on the fluid pouch that doesn't cut the circulation totally off. I've tried to tell the PA that the swelling & soreness is going up toward my shoulder and down toward my forearm in streaks and now has passed my shoulder and has gotten into the area between my neck & shoulder and around my shoulder blade and I have nodules along my spine and some pretty big ones on my ribs. When the barometer drops and we have a really COLD front all my joints swell and I have to take pain meds and get unter my electric blanket and my two cats join me in bed. Misery loves company and I love warm feet when I hurt, The only thing is, now they "feel like my RA is in remission and the truth is I never know when my pain level is going to go over 10 on the 0 to 10 scale. I can't deal with that kind of pain & now I have this medical practice where they got me used to living without overwhelming pain and now "YOU ONLY TAKE THE VICODIN 4 X/S A DAY AND ONLY FOR BREAKTHROUGH PAIN. Just when I had got used to pain I could function in and not be a recluse in my apt. I'm heading back to square one. and winter is coming when I'm going to stay swollen until midsummer when I finally get warm! Lots of luck with your docs. Hope they are more understanding than mine. Sometimes the docs get "insulted' that you can't take all these "miricle drugs" mine tried to put me on. What''s helping now are tetracycline 50 mg daily and Z pack I've been taking for my elbow. Also taking Calcium 1200mg with 1000 mg D3 D3 5,000 mg Folic Acid & Ferrus Sulfate or plain old iron pills. My body was depleted of all four of those substances. I've had about 4 mild flares and the rest has been tolerable. Good luck finding a REALLY EXCEllent Rheumatologist who is compasionate. Hopefully a nice office staff. Good luck Gran2B

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