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    Old 01-25-2008, 10:17 AM   #1
    Terri1967
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    Please help....So confussed & in pain

    Hello, Im hoping that someone out there has same symptoms that I do and can help point me in the right direction. All my specialist are dumb founded. I am 40 years old. About 2 years ago I went to my doctor with severe swelling in legs, hands and face. This cause alot of pain. I also was having alot of problems breathing as well, my oxygen levels were in the low to mid 80s and was put on 3 litters of oxygen at home and I have been on oxygen ever since. The pain has increased and is not only in all my joints but also in areas that do not have joints, its not worsened by touch just is a deep pain that is almost all the time. the pain used to be just in hands and knees, now its hips, shoulders, feet, shinbone, thighs, forearms. I suffer from extreme fatigue as well. I get 6 to 8 hours rest at night, I do wake at night in pain, and have a tough time finding a position that is comfortable. I get up with my husband and kids at 6am and by 8am I am back in bed till 11 or noon. It takes me hours and hours to do simple things as in cleaning up the kitchen and family room. All my blood test come back normal. My lung specialist says i have pulminary fibrosis. My family doctor is sending me to a RA specialist and said I have alot of the symptoms of a strange arthritis, he couldnt even remember the complete name of it, but said its something like sub-negative reocurring (something) arthirtis and this type of arthritis effects deep tissue including the lungs and heart. He put me on some kind of steriod that I couldnt be on for very long because it has alot of hard side effects. I was awake for 3 days straight!! I ate like i was in training to be a sumu wrester! My mood swings were dramatic! But almost all of my symptoms went away while on it. So now Im back to being swollen and in pain and tired all the time again.

    Can anyone please help me.

    Last edited by Terri1967; 01-25-2008 at 07:29 PM.

     
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    Old 01-26-2008, 04:36 AM   #2
    bevann26
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    Re: Please help....So confussed & in pain

    hi terri, i feel so bad for you being in all that pain! going to a rheumatologist is the best thing for you. i have alot of your symtoms, and i have arthritis, and fibromyalgia.
    there is a wonderful fibro board on here that you might want to read some of. also, i know there are lots of different types of arthritis, so maybe someone on here can relate to you......hope your pain gets better quickly...........bevann

     
    Old 01-29-2008, 11:59 AM   #3
    Terri1967
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    Re: So confussed & in pain

    As I stated earlier I cant get into to see the RA specialist till Feb 28th. With the extreme pain and swelling lately that seems like a life time away. Any advice on how to try to relieve some of the pain. Cant take any meds with sulfa in it or codine or cortizone, im allergic to those.

    Any help or advice would be soooo appreciated. With the amount of pain ans swelling I am stuck inside all the time and feel like the walls are closing in on me.

     
    Old 02-02-2008, 06:10 AM   #4
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    Re: So confussed & in pain

    you could try an anti-inflammatory med, such as aleve......or you could call your primary care doc for something stronger. usually they tell you ice for swelling, but if it is arthritis related, i feel heat helps the most.
    hope this helped somewhat.....hoping you find something that works for your pain....nothing takes it away, but there are some that at least takes the edge off............bevann

     
    Old 02-04-2008, 08:34 PM   #5
    Terri1967
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    Re: So confussed & in pain

    I have tried calling my RA 8 times to ask to be put on a cancellation list but every time i call i get put on hold for over 30 min and then get dissconnected!! So I guess I have no choice but to try to grin and bare it till my appt. I will be lucky to not be divorced by then My husband has been extremely understanding with my pain and lack of energy. He just wants answers like I do. This has been going on for over 2 years now and is getting worse with each passing week. Nothing gets done that should be around the house and now I am unable to work. Hope to get some answers at my appt.

     
    Old 02-10-2008, 08:06 PM   #6
    Rita27
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    Re: So confussed & in pain

    Hi Terri, I am so sorry you are going through this. Maybe you should try going to the ER or an urgent care facility just in the meantime for some relief. You can't be expected to go on in such pain.

    I do have one suggestion: I recently had carpal tunnel surgery on my right wrist, and the pain after the surgery was horrible. I also cannot take those codeine pain killers, and almost all of them have the codeine in it. The doctor told me to take 3 Advil and 2 Tylenol Xtra STrength at the same time. I didn't think this would work, but it really did control my pain, at least make it tolerable. I did that every 6 hours or so. I also used ice packs.

     
    Old 02-11-2008, 04:28 AM   #7
    Terri1967
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    Re: So confussed & in pain

    Quote:
    Originally Posted by Rita27 View Post
    Hi Terri, I am so sorry you are going through this. Maybe you should try going to the ER or an urgent care facility just in the meantime for some relief. You can't be expected to go on in such pain.

    I do have one suggestion: I recently had carpal tunnel surgery on my right wrist, and the pain after the surgery was horrible. I also cannot take those codeine pain killers, and almost all of them have the codeine in it. The doctor told me to take 3 Advil and 2 Tylenol Xtra STrength at the same time. I didn't think this would work, but it really did control my pain, at least make it tolerable. I did that every 6 hours or so. I also used ice packs.
    I did end up at the ER Friday night. They gave me 3 injections of some pain med that starts witha V backed with toradol and that didnt work at all, then gave me injection of morphine and that eased the pain some but made me nausea and ended up vomiting all night and into the next day. 17 more days to go till i go see the RA specialist for the first time. Im not expecting much with the first appt. Im sure that it will be all tests being done and will have to wait till 2nd appt to get any real help. swelling is not only in hands, feet, ankles and legs but now also wrists and 1/4 of the way up my arms and my face as well. The swelling I can deal with I guess, its the pain in all my joints and now even deep muscles and some times even seems like in my bones too. I am just hoping to get some answers at the very least soon.

    thank you for the support, it does mean alot to me and makes it a little easier waiting to see the specialist.

     
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