Undiagnosed but maybe not crazy

Posted , 7 users are following.

I have been in pain since I can remember. When I was a kid, I would lay in bed and cry because my legs hurt so bad. My parents kept telling me it was growing pains and to get over it. So I learned to keep quiet. But the pain persisted. My knees, ankles, back, hands, feet. When I was 19, I was pregnant with my first child. The pain in my legs was so unbearable that I couldn't walk on them. The doc at the ER asked me "have you ever been told you have arthritis in your knees?" Of course I did. What else could explain the pain I had been in? He put me on crutches and sent me on my way.

There has not been a single day that I can remember that I haven't hurt,but the pain would travel and would be mostly managable with NSAIDs. Over the last 5 or 6 years the pain has become more widespread and constant. Stairs became a struggle in my early thirties. I had to get help opening things, or lifting frying pans.

I went to my primary care a few years ago in a panic because I was in so much pain. She actually listened. She looked at my hands and feet and told me she was 99% sure I have RA, but without insurance, I couldn't afford the test. She also said I had very low vitamin D and that could also be contributing to my aches and pains.

Today, I struggle to wipe after using the restroom, gripping my steering wheel, lifting a coffee cup. My fingers are twisting and look like I am a boxer. Out of desperation because I couldn't do my job (i'm a restraunt manager) I started taking prednisone my son had gotten for his asthma last month and never took. I am not in agony. I can do things I haven't been able to do in years like tie my shoes, or put my pants on like a normal person. The swelling in my feet has gone down so much that my shoes are too big.

I have been taking pics daily of my hands and feet to document the changes so when I actually get insurance maybe I will be listened to. 

1 like, 7 replies

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7 Replies

  • Posted

    How awful for you. I live in UK so never realised others may have to pay for their tests etc. I feel so sad for you to have to endure that pain for so long. I am actually sitting here with tears in my eyes. I do hope you can get a diagnosis and meds properly sorted out.e

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  • Posted

    WOW, that's quite some story Alamode and I'm so glad to hear that the prednisone is helping.  If I remember rightly it can help to decrease inflammation in the body, which ultimately will help the RA.

    It's a pity you are not in the UK, you would have the necessary tests and treatments needed.  I hope you can get sorted very soon. x

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  • Posted

    I feel your plight. The damage done to your joints could have been prevented. Do not wait until you get insurance. Find a way to get the treatment you need desperately. There must be some advocacy agency somewhere. Start with the ER near you or urgent care center. 

    I pray that you will get help. Best of luck to you.

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  • Posted

    Alamode,I am so sorry for your situation.My husband was diagnosed with RA a couple years ago and was given steroids to reduce his flare.It brought immediate relief.Is there a medical college

    near you or a low cost clinic that uses a sliding pay scale or you

    could contact your local depth of human services maybe they

    could suggest a program.Sometimes hospitals have programs

    for those who can't pay you talk to the billing depth and request

    forms for indigent I think it'should called it means you can't pay

    I know you are in serious pain and need help.Keeping you in my

    thoughts and prayers.Tory

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  • Posted

    Oh this spell check is for the birds.Dept not depth
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  • Posted

    I am so sorry for you Alamode, it must be aweful to be needing help but not get it. I am lucky I am originally from the UK but live in Australia and get all my tests and meds at very little cost. We take a lot for granted. Would it be possible to contact a health provider there to see if they could waive the fees? Please be careful taking meds not prescribed for you. There are a lot of side effects from Predisolone, thats hard to say when it is helping you but please be careful. Good luck with getting the help you desperately need.
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  • Posted

    I am sorry to hear of your pain.....I am on steroids myself for another long term problem....although they give you relief, be very careful becuse when you run out of the steroids (if you do)  you could have a rebound flare-up, which is awful...and very painful.  I don`t want you to get in that situation!

    ​Just hope you can get correct diagnosis soon.....and treatment!!


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