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Thread: So tired of being 'possible'

  1. #11
    I second everything Bonnette said

    Oli- I won't be there physically but we will be with you and rooting for you. I'll gladly be your cheerleader I wont torture you and cause permanent psych damage by dressing like one- but I'm cheering for you!

    I got good news today. A friend is willing to come by twice a week and help me leave the house. I'm excited to not be stranded up here any more. Forgotten and alone- it's the ol' "Well, she'll be there when I get back/done/time". No longer forgotten- now I know I'm not alone. I was afraid to ask her, but she said yes and she wants to hang out more. I wouldn't have my chair set-up right without CC, so I wouldn't have been able to leave. I wouldn't have the idea without CC and I wouldn't feel like I have the right same as anyone else to get answers, care, knowledge and see what the outside feels like--no matter what my dx may or may not be.

    My favorite doctor once told me something that stuck with me. I was hesitant to go to the hospital- what if it was nothing? I had been told I had 'nothing' for so long, and they were the experts- right? He told me, "It isn't about what will happen if you go, it's about what will happen if you don't".

    Stuck with me ever since.

  2. #12
    Oh, that is indeed wonderful news, BlueRing! I am so glad to learn that you are no longer stranded! And those words from your favorite doctor are truly full of wisdom.

  3. #13
    Wow, that is a good friend. I am still trying to acquire one of those...

    Funny that you mention my history. I have no memory of my first 20 years of life. A couple here and there but most of it is a big old blank.

    People had been pestering me to ask my mother and I didn't want to upset her but I finally asked her for a family history and she said no. She doesnt want to talk about it.

    So I have no history before 20.

    This is starting to be more of a problem than I thought.

    Well I will just try and keep in mind everything I can remember and see what happens.... I am getting more and more nervous especially with what happened with my mother last night. I can't wait for all this to end!

  4. #14
    That is an unusual response to your request for family medical history, Oli! Well, all you can do is the best you can, so if you have no memory of your life before age 20 and your mother won't divulge the family history, then that is what the doctor needs to know. Try to remain on an even keel, not looking beyond the events of the day (or even the hour, if need be) - that's a tall order, I realize, but I believe it will serve you well.

  5. #15
    Well I went and it was not so good. The dr didn't really 'get' what I was saying and suggested exercises. Exercises? Exercises? Give me a break. I used to work out with mr America back in the day. I have trained show horses for 30 years. I have worked very hard physical labor most of my life. I have done ALL kinds of physical therapy... Exercises ain't gonna do it. I have been in serious pain for my entire life during all kinds of exercise. Doesn't matter what I do. I want to know WHY I am in pain.

    The good news is that even though I have avoided it for 10 years and was terrified, I got a blood test. My Service Dog laid on my chest and smooshed his face on my face and distracted me so I didn't pass out.

    So maybe I will at least learn something from the blood test and be a 'possible something'...

    I kept on my mom about my history and she isn't talking much. I know there is a reason why I am missing 20 years and it is basically because of her. I understand why she doesn't want to bring it up.

    Thanks for supporting me today. I really appreciate it. I had to make some phone calls in my stressed out state to people who could calm me and talk some sense into my fear. It worked.

  6. #16
    Is pain your main issue, Oli? Do you know specifically what doctors in the past have considered in terms of diagnosis? Maybe I have missed some of your posts, and if so I apologize and don't mean to ask you to repeat yourself. Is fibromyalgia being considered? I am a little perplexed that a 30-year history of difficulty was met with a blood test and the suggestion to exercise.

  7. #17
    Senior Member marycsm77's Avatar
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    Quote Originally Posted by Oli View Post
    Well I went and it was not so good. The dr didn't really 'get' what I was saying and suggested exercises. Exercises? Exercises? Give me a break. I used to work out with mr America back in the day. I have trained show horses for 30 years. I have worked very hard physical labor most of my life. I have done ALL kinds of physical therapy... Exercises ain't gonna do it. I have been in serious pain for my entire life during all kinds of exercise. Doesn't matter what I do. I want to know WHY I am in pain.

    The good news is that even though I have avoided it for 10 years and was terrified, I got a blood test. My Service Dog laid on my chest and smooshed his face on my face and distracted me so I didn't pass out.

    So maybe I will at least learn something from the blood test and be a 'possible something'...

    I kept on my mom about my history and she isn't talking much. I know there is a reason why I am missing 20 years and it is basically because of her. I understand why she doesn't want to bring it up.

    Thanks for supporting me today. I really appreciate it. I had to make some phone calls in my stressed out state to people who could calm me and talk some sense into my fear. It worked.

    Oli,

    Did you go to a neurologist? This seems like it would be a good starting point. Also the blood tests are a good place to start as well. Sometimes it is quite a long haul from the time diagnostics start until a diagnosis is found. Hopefully it wont be too long, but at least you have started the process! Are you returning for follow up?

  8. #18
    Moderator jody's Avatar
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    any other family members besides your mom that you can ask oli? aunts, or uncles? cousins who grew up with you who may now some of your lost years? its ok to grasp at straws if that is all there is. dont give up on answers. doctors dont know everything, they are only human.
    and I was going to ask bluering if there was any family history of Ms, transverse myelitis, epstein Barr?

    has either of you been tested for Lyme disease? Any joint swelling to go with the fatigue? how about mercury poisoning? have you had tests for that?
    dont give up on finding answeres.

    my friend with Ms was so relieved to know she had ms. sounds nuts, but it took twenty years to dx, but her son was dianosed right away. she knew he had it before the tests came back. and sadly enough when her grandson began to show symptomes (her other sons child) his parents refused to test. eventually they had to. Family history is of importance.

    we have lupus in my family. do you get any rashes on your face and neck? along with your symptomes? that is diagnosed by a rhumatologist. also get your vitamin D levels checked. there is something called low D syndrome that can have a number of effects on the body. a rhumatologist will check for low D as well.

    good luck and dont give up on getting an answer.

  9. #19
    At this point pain is my main issue with fatigue right up there.

    I 'feel' like I have a spinal issue in my lower back that affects the feeling in my legs. I also pinch nerves in my upper back and neck easily. And have near constant migraines.

    Last night I ended up with a pinched nerve in my leg and now tonight at 4am I have a pinched nerve in my upper back.

    I don't seem to have swelling in my joints visibly. I just know that every muscle hurts all the time and my lower back must be really messed up, not even laying down releases the pain.

    The guy was not a neurologist but more of a pain specialist.

    I don't have anyone to ask about my history. I didnt want to bring it up with my mom in the first place but people were pestering me to do it so I just blurted it out. I know she doesn't want to do it because she cause my memory loss from trauma.

    I havent been tested for Lyme or anything but hopefully there will be a lot covered in this blood test. I am not sure if I could go back for another one as it took me over 7 years to go get this one done.

    I think I am going to take the test results to a different dr because I really got freaked out by this guy.

    I will remember that it might take a while to figure out what is wrong...

  10. #20
    Quote Originally Posted by jody View Post
    and I was going to ask bluering if there was any family history of Ms, transverse myelitis, epstein Barr?

    has either of you been tested for Lyme disease? Any joint swelling to go with the fatigue? how about mercury poisoning? have you had tests for that?
    dont give up on finding answeres.

    my friend with Ms was so relieved to know she had ms. sounds nuts, but it took twenty years to dx, but her son was dianosed right away. she knew he had it before the tests came back. and sadly enough when her grandson began to show symptomes (her other sons child) his parents refused to test. eventually they had to. Family history is of importance.

    we have lupus in my family. do you get any rashes on your face and neck? along with your symptomes? that is diagnosed by a rhumatologist. also get your vitamin D levels checked. there is something called low D syndrome that can have a number of effects on the body. a rhumatologist will check for low D as well.

    good luck and dont give up on getting an answer.
    Hi, Jody. I'll take a turn at bat and answer those

    I've been tested for MD- negative tests. Lupus- negative (tested when I was 12 and again at 20). Lyme-negative (test at 22). Mercury-unknown (test inconclusive but symptoms not consistent). Vitamin D, C and B- good and normal over three month testing period. TransMy- symptoms not consistent. MS- there's the kicker. The only time I've gotten a doctor to test me for it they gave me a regular MRI and called it a day. They said there were no lesions seen so no doc since has agreed to test me. That was ten years ago. However, that was before I started to gather more symptoms, so I understand their reticence.

    I've been told it's all because I'm fat. *le sigh* I've been bigger than I am right now and I've always been able to walk in a straight line, not fall if I hit a wall, not have burning pain from the tailbone down and lift and lower my feet. I used to workout heavily too- I LOVE weightlifting and miss it terribly.

    I just found a new doc and am hopeful that she's starting to listen and really *see* me- and not just the fat. I'm hopeful and determined. Part of that is thanks to this community- so thank you.

    The doctor told me to work out more- so I did. Gradually increased working out, ate less and I know how to do it properly. Even worked with a trainer to make sure I wasn't doing anything too soon or too hard. Went fine for a month- then I was in so much pain I couldn't get out of bed; just laid there crying in pain. I called the doctor and she said to take an ibuprofen. Told her I had and it didn't do anything because I wasn't swollen- it was the same nerve pain I'd been telling her about. She said she wanted me to come in in a few weeks if it didn't get better.

    So two weeks later I came in- cane in hand. She asked what was wrong. I almost lost a screw right then and there; ended up just laughing instead. (There comes a point where it just gets humorous). She asked me why if I was in so much pain I didn't go to the ER. I just looked at her and calmly explained that I live on the 3rd floor, couldn't walk down the stairs. Also- having gone to the ER for nerve pain before- they wouldn't do anything to help; just push a drug at me or conversely not let me have ANY pain medication. So, what was the point?? She nodded and agreed.

    Told her that it all started to get more painful when I was working out. She looked confused and said, "That's not like Fibromyalgia. Something's wrong". I cried- I was so happy someone finally heard ME and not this fat body. So, I know she's open. Now it's just about getting insurance again so I can start the ride. Cant get something written on the chart that might lead the ins. co. to deny me because of previous condition.

    So she wants to test me again. This is good. She also thinks I'm diabetic- which is bad. I got dx'd diabetic from one test. This makes me doubtful, yet I'm open to the idea.

    So, I'm thinking Cushings, MS, Jus Barre are all options. Really- I've been living with the symptoms for so long- I'll be happy as peas just to have a name to it and not be told that the reason I can't walk without flailing my arms is because I'm a chubbster. Plus, with a dx comes possible treatments and physical therapies.

    I don't usually like typing all this stuff out- it reads like a sob story and I'm a fighter by nature so sobbing is best done quietly and alone. Perhaps it's good to have this here so others might not have to feel alone too.

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