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Why won't anyone listen to me

  • By Melissa

    I was just diagnosed with RA. To be honest I am not doing well with the thought of being in pain the rest of my life. Although I guess it’s good to know why all of my joints hurt that doesn’t help with wrapping my head around it. I try to talk to my family about it but no one will listen to me. My husband gets this glazed look about him. My sister in law does the same thing. Was talking about it with my niece today and all she had to say was “Isn’t AIDS an autoimmune disease. What is that supposed to mean! Even my Mother had no interest in listening to me. So I am alone, in pain, feeling helpless and frustrated. Tried to work in the garden yesterday and it hurts so bad to hold the hoe to make my mounds it almost made me cry, almost(never let them see you cry), so now I feel useless. I have yet to see the Rheumatologist. Still waiting on the doctor to make the referral. I wish they could feel the pain I do everytime they take their sweet time. Great now I’m bitter and mean. Anyway this is how I am feeling and at least no one is stopping me from saying it here.

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  • By Kelly Mack Moderator

    Hi Melissa, sorry to hear about your struggles explaining RA. Many people don’t understand this disease until they are educated. It can leave us people with RA feeling lonely and misunderstood. There are many stories on the website about trying to explain this disease to others. In the meantime, seeing a rheumatologist and getting on a treatment plan will hopefully help reduce your pain and stop the progression of the disease. Let us know if you have questions and hope you can find support on this site. Best, Kelly (Site Moderator)

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  • By Melissa

    Thank you Kelly. My attitude is a bit better today. I am still waiting on the doctor but eventually I will get there I guess. My little finger and foot are hurting today. It’s so strange for my body parts to just hurt for no good reason. Feels like someone is sticking pins in me. Big sharp pins. I have been reading alot about this disease and learning all I can so I will be educated when I go to the Rheumatologist. Keeping positive
    Melissa

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  • By loudchar

    Sorry for what your’re going through. I saw your comment and thought “yeah, me too!” but it’s more the doctors aren’t listening to me. I don’t have a firm diagnosis of RA yet and have to wait five more weeks to see the rheumatologist (even though I WORK at the hospital he’s at! No special perks there), but it has taken three months just to get my doctors to take me seriously that this feeling dirt tired all the time, having pain in my joints and bones, and just feeling like s*** ALL the time and barely being able to get work and what I have to do at home done is no longer sustainable. My family is trying to be patient, but I think they’re sick of my “whining” too. I seriously had to bring my husband to my last PCP appointment to demand more bloodwork and that was where they got the positive autoimmune titer. Looking forward to a definite diagnosis so I can move forward, but sort of crushed by the idea of it all and the progression. My grandma just passed away recently from failure to thrive due to pain from osteoporosis and arthritis and was all mangled and that is NOT how I want to live. I’m only 36. In short, I hear you.

    and BOY does it all hurt twice as much since they went and pointed it out! lol.

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  • By StillFlaring

    I hear you just fine Melissa. Dealing with the same thing from my husband. He has osteoarthritis, and when I was given my RA diagnosis, what I got was “welcome to my world”. He just doesn’t get it. 2 totally different illnesses. While folks may be sympathetic, I don’t feel like anyone understands the pain, the fatigue and did I mention the fatigue??? I work full time and its really gotten difficult as I feel like I’m in a fog most of the time. I look at spreadsheets and forms and KNOW I know what to do with them, it just won’t come to me, so I just look at them and blink. And getting around at the job site is horrible.

    Gardening has been one of my favorite things – would dig in the dirt and just feel troubles drop away. Can’t do it right now either, just too painful. I really miss my flowers and veggie time.

    And what do you say when asked, “well how are you?” – just be polite and say “oh fine”, when you obviously are NOT fine, do you tell them the truth?? (probably not, as most do get that glazed look you mentioned), or just say “getting by, thanks”….

    Melissa, know you will be heard here and we GET IT!

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    • By Melissa

      Thank you Still Flaring. It is nice to be heard and not only heard but understood. Finally went to the Rheumatologist almost two weeks ago. Still know nothing. He told me to buy fish oil. Took a bunch of blood and xrays of my hands and feet and then walked out saying make an appointment in a month. So I go back on the 27th of July. Who knows maybe he will actually tell me something then. I guess first visit is really just to confirm my PCP’s diagnosis. Since I was RF negative they have to do more tests, do a history and crap. I don’t know but I am tired of my everything hurting. I try to have a good attitude but it is hard when you never know when or which joint, limb or whatever will decide to fail. If I don’t have RA then someone better figure out what it is. He said “probably RA” I am confused.
      Anyway , end rant. Thanks for reading”listening”.
      Melissa

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  • By Dave

    I know the feeling! I was diagnosed just a few weeks ago and have had the same reactions from several people including my wife. We had a conversation about it just this morning. When I explained to her that I needed to talk about it sometimes and that I really needed her to listen and needed her help and support in dealing with it she understood where I was coming from. I am trying to be patient with other people. In thinking back, I realize that before I was diagnosed with RA I had no idea the severity of it. I have a sister who has been confined to a wheel chair for 20+ year with Osteo- arthritis so I knew that Arthritis could be very serious. I never knew the difference between the two and certainly did not know the extent of problems associated with RA. I realize that the average person has the same concept of “arthritis” that I had before I got it. Right now I am responding pretty well to the treatment protocol that my Rheumatologist has me started on and things are going pretty well with not a lot of bad side effects from the drugs. Life is good !!!

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  • By Andrew Lumpe, PhD Moderator

    Dave, sorry to hear of your very recent diagnosis. You’re doing the right thing by communicating with your loved ones and friends. Glad you found this site with it’s information and community. Hang in there and I hope that you find a treatment plan that keeps the disease processes in check.

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  • By Dave

    Thanks, Dr. Lumpe. My Dr. has me on Methotrexate, Sulfasalizine and predinisone along with folic acid and vitamin A. I started the meds about 6 weeks ago and am doing well. I had been involved in cycling for 20+ years up until last year. I had to give it up because of severe foot problems that my Podiatrist attributed to bunions that had caused my toe joints to mis-align (turns out that the foot problems were probably due to RA.) Yesterday I was able to ride again which I thought I would never do! Thanks God for medical science and the strides that are being made in treatment for RA and other chronic illnesses.

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  • By Andrew Lumpe, PhD Moderator

    So good that you were able to ride again. Glad that the meds are helping. You might chat to your doctor about how long they want you to take prednisone as it’s generally not recommended to take it long term.

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  • By SuzanneF

    Give yourself time to breathe and digest what is happening. Your world is changing. Because you look normal, people don’t realize how much pain you are in. My advice is to not try to convince them. In time those closest to you will realize and the others don’t really matter. My boss and a few close friends and family have gotten the memo and finally understand. They also know what a fighter I am. Find other people with autoimmune diseases. They will understand. Foster a good relationship with your rheumatologist. They will help. My rheumy loves my cranberry muffins. 🙂 Take some time to listen to your body and your pain. Pain can either make you crazy or work with you. That is entirely up to how you deal with it. My pain and I have a good relationship now. When I have down time, I totally give in to it. I spend a day in bed or I do what makes that part of me happy. Then I can press it to go farther than it usually wants when I need to. Develop a good relationship with your pain.

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    • By Wonderland

      Suzann F your positive outlook is great! I haven’t received a “clinical diagnosis”, but went to the Rheumatologist, and he stated ” regardless of what all these test say, I believe you have RA as you have all the physical signs. No meds prescription, waiting for results of too much blood work! The pain is quite bad, but sleep helps so much! Can anyone tell me how long after their blood work they started some type of treatment?

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  • By Anonymous

    I have been just recently been confirmed to me that i have this crap, I am a very active person and have to deal with this, currently it is in my right hand and as i speak my knuckles and finger joints hurt like hell, my best friend has had this stuff for about 15 years and the best advice i can give is don’t give up and keep moving as he always told me, I am in the middle of a major landscape project, oh well, keep on going, tomorrow is another day, there is always some one worse off than yourself. I am currently taking methotrexate, hydroxychloroquine, and sulfasalazine and in the process of getting a new doctor, the first guy treated me like i was a piece of livestock and sent me out the door. Take it one day at a time folks, always tell yourself your gonna win, ya i don’t have it as worse as some of you, but what is in the future for me?? I think I know but i am not giving in, I learned that from my buddy who has it. Good luck to you all and look forward to hearing from anyone

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  • By Dave

    Hi Steve! RA is a game changer, for sure. I was diagnosed the 1st of May of this year. Nobody, but nobody can relate to this “crap”, as you call it (I like that term, it fits!) except those of us who are hit with it. I like your attitude and I share it. I am also a very active person and it frustrates me when my body just says “no.” I am still learning how much to push myself and when to just back off and let things slow down and rest. None of us know what the future holds and I feel like I am walking a tightrope. Things are going pretty good right now with me, I am in a hundred times better shape than I was for months before I was diagnosed and started the meds. Will that last? I hope and pray that it does, but there are no guarantees with RA. Good luck and keep that positive attitude. Dave

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  • By Anonymous

    Thanks Dave and good luck to you also, I will keep fishing as long as I can, made a appointment to see a new doctor come late October and am looking forward to it

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  • By twinkle86

    I understand how you feel. Today for the first time I actually complained about the pain and my parents just said, “so what do you want me to do about it?” So basically shut up.

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  • By 1oqunge

    SuzanneF, I really like your attitude. I am newly diagnosed but feel like I have had this a very long time with out knowing what it was. Glad to have a name on it. I’m going to Rheumatologist Friday, to hear the rest of the story…

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  • By Mariah Z. Leach Moderator

    Hi 1oqunge!
    Best of luck with your rheumatologist appointment! Keep us posted and remember that we are here to support you!
    ~Mariah~ (Site Moderator)

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  • By Maine Doug

    Wow! I sure know what you all are talking about. I am 4 years post diagnosis with this “crap” (good characterization Steve!) I was strongly seropositive from the get go so at least diagnosis was easy. Diagnosed with an “early, severe case”! Wish I’d known then what that means now. For the first 2 years it didn’t change my life too much. Just lots of doctors, tests and scary meds. But then my wife left me, along with all the marital friends. Been thru 5 Rheumys and just about every med. now on Rituxin and weaning prednisone. I want off the prednisone no matter what, poison! Job stress doubled and money got tight. Depression, stress and anxiety set in.
    I was in a wicked downward spiral. No friends, no family, just my two wonderful dogs. Couldn’t make it without them. Hit rock bottom two weeks ago when a “medication reaction” left me curled up in a ball of misery!
    Now I have created a one year plan to improve all areas of my life. Made a promise to myself that if I am not making progress, I am moving to the U.S. Virgin Islands no matter what!
    So far lost 16 pounds (gained 60 on the prednisone), exercising every day, meditating, you name it! Feel like I am back in charge.
    I GUESS MY MESSAGE/ADVICE IS: don’t give up, fight like a cornered badger! Demand that you get the best healthcare there is. Beware long term prednisone (I was 4 years). And stick together with all of us. We’ll get through this and be stronger than ever before! GOOD LUCK TO ALL!

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    • By Andrew Lumpe, PhD Moderator

      Wow Maine Doug, you’ve been through the ringer! Way to hang in there and fight! Long term prednisone is now not recommended by most doctors. I take Rituxan also. Hope it works well for you. Keep us posted.

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  • By Mariah Z. Leach Moderator

    I agree with Steve! Way to go, Maine Doug! I love the idea of fighting like a cornered badger! ~;o)

    Best wishes to all of you!

    ~Mariah~ (Site Moderator)

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  • By Sally

    Hi, this is my first time on this site. My husband has had stiffness and pain in his neck, pain and swelling in his wrists and hands, fatigue, feeling like he has the flu, headaches, and bowel issues since March. None of the doctors we have seen have been able to tell us what is wrong with him. He is getting sicker by the day, so I got mad and demanded to see a rheumatologist. We see her on Monday. Does anyone have any suggestions for us as to what tests we should be asking for, things to talk to the doc about, etc. We are scared, and don’t have a very big support team. Our daughter has MS and I have fibromyalgia, so we are very aware of how much of a role support plays, but outside of the 2 of us and our son-in-law, nobody else in the family seems to care that much. Any help or suggestions would be greatly appreciated. Thank you, and gentle hugs to all of you.

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  • By Mariah Z. Leach Moderator

    Hi Sally~

    I am sorry to hear that your husband is struggling so much recently. It sounds like it does make sense for you to talk to a specialist. I would recommend being open with your doctor about your need for support and answers. You may also want to let her know about the other autoimmune issues going on in your family – which could help with the diagnosis process. If the rheumatologist is not able to give you answers (as bowel issues aren’t usually associated with arthritis) she should at least be able to give you a recommendation of the next type of specialist to see. Best of luck and please remember that our community is here to support you!

    ~Mariah~ (Site Moderator)

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