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glad to have found you all

AnonymousUserAAnonymousUser Posts: 49,899
edited 06/11/2012 - 8:25 AM in New Member Introductions
:H Hello everybody and happy sunday!

I am so thankful to have found this forum. From what I have been reading I see that everybody seems so supportive and helpful.

About me: I suffer from an auto-immune condition that is causing my spine and several other joints to fuse. During the fusing stage it is incredibly painful but once the joint is fused the pain is gone.

I find pain and fatigue to be my most debilitating issues right now. I'm fortunate at this time to have a supportive health team that seem genuinely dedicated to helping me. I too suffer from insomnia and lack of quality sleep.

I cant wait to get to know you all better.

PS TerriVJ and Angie(from birmingham)--love your supportive posts and look forward to getting to know you both better. Your posts have been an inspiration to me on my 'low'days.
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Comments

  • TerriJV is like a mother to us all around here. She's been through a lot and we consider her advice golden on this forum. I am so sorry to hear about your condition. What is it called? I don't think I've ever heard of that one before. We all are here to answer any specific questions you have from surgery to recovery and beyond. Finding a good doctor is wonderful. It helps so much to have that patient/doctor bond. I mean after all they pretty much hold your health in their hands so I'm glad you have a good team.
    We look forward to hearing more from you!
    Tonya
  • It is so great to see what a positive and upbeat attitude that you still have as much as you are suffering. I am a firm believer in the power of positive attitude and think that will help you tremendously! Good luck to you and please keep us posted.
  • :) hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i am sorry you are suffering as you are. :''( you will find lots of new friends here. please look around and make yourself at home. take heart that even though your days are long you still have a loving spirit. :X good luck to you as you move through your pain problems. stop by the "Sleep Problems" forum is you are awake at night. I) it can help fill in those long nights. Jenny :)
  • I cant wait to meet all my new friends-especially my late night companions when the night seems endless. Today was a high level pain day for me and I wonder if the constant winds and pouring rain all day may have added to that :??
  • Shalom,

    Welcome to this wonderful forum, its a wonderful place to get info and support.

    What is your condition called? Sounds an interesting thing to suffer from.What pain meds are you on and are you on a PT programme? Where are you from? I'm from the UK. Sorry for all the quesstions, just helps to get to know you better.

    Does breathing exercises and relation help with your pain, or maybe a heated pad?

    Take care and again, welcome to the forum, can't wait to hear more from you.
    Love and best wishes
    Danni xox
  • I live in canada where the healthcare is free(not to mention slower than molasses running uphill in Jan.)

    My condition is called Ankylosing Spondylitis. I dont think its as rare as they proclaim it to be.

    For meds I take:
    2x week an injectable biologic called Enbrel. For me its been a lifesaver and Im able to self inject at home now.
    I also take celebrex, lyrica and percocet for pain. I have rhovane rx'd as a sleeping aid also prn altho for me this seems to be everynight.
    I also take hbp meds and a potassium supplement as my last bloodwork showed dangerously low levels.

    no p/t at this time as winter always seems to increase my flares

    My heating pads and microwaveable bean bags have become my new best friends. Hope to talk to you soon and thanks for the welcome, Shalom



  • Greetings Shalom,

    Welcome to SpineHealth and sorry your are dealing with such a painful condition.I actually got a boatload of pamphlets regarding this condition due to my own thoughts I am in the early stages(possible subset) of this condition.From what I have read I feel for you and hope you keep that positive outlook up.
  • Hi there!!
    Welcome to Spine Health...

    Yes TerriJV is an amazing woman and she has been there for me so many times...She is a for sure inspiration to many many people here. She is a pilar of courage and grace in the middle of a storm. She just knows how to roll with it and I love that about her!!

    Now your condition I have read about some and watched a few documentaries about. It is interesting to me how the bones just fuse....Aren't there different stages of this condition/disease??

    I know this must be a pretty painful way to llive, but you sound very upbeat and in good spirits which sometimes is easier said than done. While I do not have the same issue as you I feel that anyone with spine issues or any chronic pain issue has a tough time dealing with "things" from time to time.

    I love this board and all my friends here! If it were not for this board and people like TerriJV and many many others I know here....plus lets not forget all the mods who know and understand what we all experience...well I just don't think that I would have been able to cope as well as I have.

    Again...welcome here! I hope that you will stick around and enjoy it here as much as I di. I also am open to give support if you need it so please feel free to PM me anytime...I check a few times a week so if you do send a message I will respond!

    Chrissy
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