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Living with Severe / Aggressive RA and fibromaylgia and I'm new here

MissSarah1315 Community Member May 23, 2012
  • Let me start by saying I'm new here and looking for others with this horrible disabling diease?? I'm 32 years old and I was dignosised at 22. I've been on Methotrexate that cause me to feel weak,Remicade,Enbrel that didn't control the flares and now on Humira which seems like it's helping alot. I also take Sulfasalzine. I have been having alot of problem since I was in my early teens and has spirled from there. I did work partime and found that I was unable to after 2 years of working and had to stop and recieve disablitiy. I have two children 13 and 15 year old and take care of my nephew that has been a struggle but I won't let that stop me. I'm battling this horrible pain like everyone else and search for others input on what works and support when their is no one else that understands. I have friends and family who looks at me like I'm fine and sees me as able to do things like everyone else which really gets at me because I have limitations that they don't understand. I would like to talk to others that can relate and give me tips on what works for them?? I'm a message away if anyone would like to chat. My name is Sarah

     

     



6 Comments
  • Lene  Andersen
    Health Guide
    Jun. 13, 2012

    Hi Sarah,

     

    Welcome to HealthCentral's RA site! We have a terrific community of very supportive users and a large archive of articles with information that can help you live better with RA. I am the Community Leader for the site and if you have any questions at all, don't hesitate to ask. I've had RA since I was four years old and as you, I know that it's...

    RHMLucky777

    Read More

    Hi Sarah,

     

    Welcome to HealthCentral's RA site! We have a terrific community of very supportive users and a large archive of articles with information that can help you live better with RA. I am the Community Leader for the site and if you have any questions at all, don't hesitate to ask. I've had RA since I was four years old and as you, I know that it's about not giving up and going out there living life anyway.

     

    you have had RA for a long time, so even if Humira and sulfasalazine are currently suppressing your RA so you don't have the pain that comes with active disease, your mention not being in "a horrible pain" makes it sound as if your joints might have some damage. It sounds to me as if you don't have good pain control - that seriously messes with your quality of life. I would recommend that you ask your rheumatologist for a referral to a pain specialist who offers treatment from a multidisciplinary approach so you can get better control of the pain. As well, getting a referral to see a physical therapist may also help reduce your pain levels. You may also want to check out our Pain Management area for more posts on this topic.

     

    it's nice to "meet" you! I look forward to getting to know you better.

  • Jeannie
    Mar. 13, 2014

    I have a hard time with my grown children understanding. My mother babysat all her granchildren and still does great granchildren. I try to help out when i can , but after a day with lil kids i end up in pain for days. I try to explain this to my children , but they get angry with me and my mother acts like i am just lazy and i dont want to help.. It came to...

    RHMLucky777

    Read More

    I have a hard time with my grown children understanding. My mother babysat all her granchildren and still does great granchildren. I try to help out when i can , but after a day with lil kids i end up in pain for days. I try to explain this to my children , but they get angry with me and my mother acts like i am just lazy and i dont want to help.. It came to a point where one of my daughters actually forbad me to see my granchildren because she didnt like that i wouldnt help at her convience. I know at times my children are spoiled, .. But i need some kind of way of getting this across to all family members. Even my mom , let them know just because i am on medications (tons) does not mean i am able to do what they want....

  • Laurie
    Jun. 04, 2012

    How true that one is and like others have said, people don't get it/understand it until they walk in your shoes.  Hang in there, keep moving, but rest when you need to.  How lucky you are to still have family around - I'm 61 and alone most of the time.  I too, have a regular pill routine and stick to it - makes all the difference in the world. ...

    RHMLucky777

    Read More

    How true that one is and like others have said, people don't get it/understand it until they walk in your shoes.  Hang in there, keep moving, but rest when you need to.  How lucky you are to still have family around - I'm 61 and alone most of the time.  I too, have a regular pill routine and stick to it - makes all the difference in the world.  Taking care of myself has become my #1 priority~!  Set your routine to accomodate the ups & downs you live with and stick with it.  Good luck.

  • Rosie
    May. 31, 2012

    I have had RA since I was 17 and have suffered with fibromyalgia, etc. over the years.  I know the pain, stiffness, and exhaustion of being chronically and critically ill.  I am now 60 years old and have found Enbrel, but still take other drugs. I know what it is to fight this illness.  You must continue to be strong for yourself, your children...

    RHMLucky777

    Read More

    I have had RA since I was 17 and have suffered with fibromyalgia, etc. over the years.  I know the pain, stiffness, and exhaustion of being chronically and critically ill.  I am now 60 years old and have found Enbrel, but still take other drugs. I know what it is to fight this illness.  You must continue to be strong for yourself, your children and all those who depend on you.  Don't think about what others "think" and/or say.  Their day will come.  They will not understand until they have lived with their own old age or an illness. Have faith in yourself and move forward.  Talk about anti-depressants with your dr.  I did not think I was depressed, but found out they have helped immensely.  Also, try a gluten free diet.  It is not that hard to do and you will likely experince much less inflammation.  Last, try to conserve your strength and have structure to your day.  Have a plan and stick to it.  KEEP MOVING, but rest when absolutely needed.  Do these things and your quality of life will improve.  Blessings and Good Health, Rosie

  • Julie
    May. 31, 2012

    Hi Sarah,

     

    I too feel your pain.  I am 51 and have had RA for 30 yrs.

     

    As you said about your friends and family not understanding, it unfortunatly happens.  Some of us with RA look good on the outside so people cannot understand your fatigue or limitations on the inside do to pain.

     

    Maybe pick one close friend or family member...

    RHMLucky777

    Read More

    Hi Sarah,

     

    I too feel your pain.  I am 51 and have had RA for 30 yrs.

     

    As you said about your friends and family not understanding, it unfortunatly happens.  Some of us with RA look good on the outside so people cannot understand your fatigue or limitations on the inside do to pain.

     

    Maybe pick one close friend or family member who too has somekind of health issue who you can support and they can support you.  I'm trying not to worry about what others think and trying not to share my issues too much.  Support groups like this one can help as we can relate.

     

    I do wish you good health.  I am optimistic that the future holds more ways to help us RA patients.

     

    Julie

  • Ish
    Ish
    May. 30, 2012

    Hi,

     

    To be blunt... RA sucks.

     

    I'm sorry that it's been so hard. But I'm really happy to hear that Humira is working for you!! Yay!! Laughing I know there are some others around here that have had good luck with that one. 

     

    Hang in there!!

     

    Ish