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Thread: Hi fellow fibro victims

  1. #11
    Distinguished Community Member Jo6's Avatar
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    Marj1, you are mighty kind, but I am glad you feel welcome here. I have been comming since 1999. My mother-in-law had Alzheimer's disease and I needed to know how to care for her.

    The added bonus was finding help for all my own neuro problems. I love this place and hope it will continue to help people. there isn't much you can't talk about and that is the beauty of it all.

    It sounds like you have a great group of Drs. I would hang on to them. A teaching hospital seems to care about the whole person. Mind, Body and Spirit. If one gets wacky it almost always will effect the others. You have them all close together. That is good.

    The Emotional support Forum is a great place. Everybody appears more relaxed there, they vent when needed and the others are right there to help out.

    Hope to see you there also. I post at several other forums too. If it's info you need it can be found.

    take care, Julia aka Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  2. #12

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    Thank you for letting me know about the support forum, I have joined there as well. It's great coming here and finding people who know what I am going through...not that I wish my problems on anyone. Thanks again, Marj

  3. #13
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    Update: The abnormality they seen on the ct was an enlarged (non-specific) lymph node. They said it may be from the fact that I do have stones in my kidneys and are keeping an eye on it for now. I have to have another ct done in 3 mths to check on it......oddly enough just a few months ago I found out I have an enlarged lymph node in my neck too....they are also keeping an eye on that one and doing a repeat ct on it in april.

  4. #14
    Distinguished Community Member Jo6's Avatar
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    hkaga, I hope everything turns out well for you. It sounds like most of us here, it is hard to find out what is really wrong. With Fibro it is hard to tell if it wide spread osteo-arthritus or both ?

    I fell Saturday and my whole body has been screaming ever since. When I fall I do it right It was such an awkward fall and I always manage to hurt myself worse trying to "catch" myself. I am wishing badly for some relief today. Raining, damp, etc.

    Let us know how things turn out hkaga. who knows, they may find something to could help us as well as the rest of us.

    ((((hkaga)))) Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  5. #15
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    Hey, I went to see the new neurologist recently and he is awesome!!!! He is very nice, listens to you, and talks to you like a human being. He is running a bunch of tests to check for ms and many other things. I had my brain mri and evoked response testing today. I have to stop and get some blood work done and then go back and see him to find out the results of everything. The neuro also gave me a script for a pain cream to use to try and help with my neck pain and the headaches caused by it. All the oral meds the docs have tried haven't worked so he figured we would try a cream. I will update you all on the results of all my tests. Keeping my fingers crossed they figure something out for once, lol

  6. #16
    Distinguished Community Member Beader's Avatar
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    Hi All,

    I used to belong to two previous incarnations of this board, but kind of lost track for a while. I have CFS/CFIDS [whose area mysteriously disappeared], Fibro, major depression, PTSD, RLS, and who knows what else. It's really hard to try to get other people to be able to understand our pain levels, even family members, who tend to want to forget. Today I came across a website with many suggestions for comfortable clothing, so that got me thinking about this board. How funny is it that finding other people who go crazy wearing a bra makes you feel better about yourself? After 20+ years of being diagnosed, it should not come as a surprise that I'm not "the only one" to have strange symptoms.
    My hope for the new year is that we can all find meds which make our illness tolerable and that we take good care of each other.

    Sher

  7. #17
    Distinguished Community Member Jo6's Avatar
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    Well welcome Sher! I just posted in another forum that you had posted in. If you want any particular forum and you don't see it post it in the Feedback Forum on top of this page. If enouth ask for it they will start one.

    hkaga, glad you found a Dr. that treats you like a human being. I know the feeling when you go to Dr. and they treat you like a dumb idiot! They don't want to explain anything, they don't want ANY questions about the meds. they push etc. Yeah, I've been there.

    I hope what they do decide on it will be something they can treat without too much pain.

    You take care and let us know how things go, Jo ((((((hugs to all ))))))
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  8. #18
    Distinguished Community Member Jo6's Avatar
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    hkaga, what is the name of the cream the Dr. gave you? I know Pati (Buttons) has mentioned a cream she uses and swears by it. I need something other than what I am taking. Right now I am having trouble with my legs swelling. It is my right leg and my right foot is swollen this morning. I have very bad viens on the left leg, you would think that would be the one to swell.

    I'm flaring again, seems like I am flaring all the time lately. I am up sitting in my lounge chair because it huts so bad to lay down. I have found myself crying on those nights and I do not cry at the drop of a hat. Takes a lot to bring me to tears. Somedays I feel like just giving up.

    Sher, for some time I have been miserible wearing a bra. My breast aren't that big, but I am known to take my bra off as I leave the Drs. office if someone else is driving. Some times I opt to just leave them off altogether. they make me hurt even worse so I see no reason to wear one if I'm decently dressed. Maybe I should say comfortable with all my clothes. I shopped back in the fall because I had no decent clothes. It took at least 3 returns for sizes before I said "NO MORE!!. Well I've only worn 2 pairs of the pants I bought and 2 tops I've worn once. I find my cold weather clothes are more comfy. I need to go some more of the valour pants and tops. I find them to be most comfortable.

    I'll stop blabbering now. I think my fingers are trying to keep up with my pain level!! hkaga, let us know how your test come out. Marj, haven't seen you in a while. I hope all is well.

    Take care all, Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  9. #19
    Distinguished Community Member Beader's Avatar
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    Quote Originally Posted by Jo6 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Sher, for some time I have been miserible wearing a bra. My breast aren't that big, but I am known to take my bra off as I leave the Drs. office if someone else is driving. Some times I opt to just leave them off altogether. they make me hurt even worse so I see no reason to wear one if I'm decently dressed. Maybe I should say comfortable with all my clothes. I shopped back in the fall because I had no decent clothes. It took at least 3 returns for sizes before I said "NO MORE!!. Well I've only worn 2 pairs of the pants I bought and 2 tops I've worn once. I find my cold weather clothes are more comfy. I need to go some more of the valour pants and tops. I find them to be most comfortable.

    Take care all, Jo
    Hi Jo,

    Hope you find some comfort SOON! Sorry you're having a bad one.

    It's good to feel reassured that others hate bras with a passion. The contraption generally goes on all right but then the chest elastic starts to bind & put pressure on my back muscles & spine, & then later the shoulder straps begin burning. It just feels sooo constricting! Like it's magically gotten tighter as I wear it & my ribcage has expanded in less than an hour. Sports bras also start out OK, but they generally have a ton of elastic all over which then constricts all over, & since they're designed to keep your body in its best position, my upper back & shoulders protest since they're quite accustomed to NOT being in the proper posture position. Ya just can't win!

    Ditto for pants that sit at the waist, even with waist elastic. Scrunching in on those low back muscles & making them protest. I just bought my first pair of low slung yoga pants in a size too large, so we'll see how well they work out. They come with a nice soft super stretchy self-belt of drapey material, but we'll find out if I hate them by next week.

    Of course, now that the cold weather has hit, socks have become my new issue -- rather, the elastic at the top to hold them up on my ankles. Time to return to the slouchy look! I have some microfiber ones that are like super-terry, so I hope they have a long life & stand up to much wear.

    I believe the basic problem has something to do with Allodynia or hyper-sensitivity to pressure on the body. I've know folks who scream when you hug them, which isn't the reaction I'd expected. One of my beading friends had diagnosed allodynia of the head and neck, & she couldn't wear her own earrings or necklaces, had to have super lightweight reading glasses, and could only use enlargers that attached to her lamp, not to her. Not a good thing when you want to do some seed beading!

    May all of us find really comfy clothes.

    Sher

  10. #20
    Distinguished Community Member Jo6's Avatar
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    Gee Sher, I could have written that post myself! Yep, it sounds kind of bad, but it does help to hear others that know even down to the ninth % as to how clothes are so binding and they seem to get tighter the longer you wear them.

    Yes, the sports bra's. I thought, WOW, finally something that will work without feeling like you are going to choke to death. Well, I should have waited just a little longer before I was giving credit where credit wasn't due!

    I have tried getting bigger sizes, same deal after a short time. I wonder why , I think I probably know already what the answer to that is.

    When my Dr. told me I had Fibro also he "explained" it this way. These are his exact words! "Fibromyalgia is a "condition" in which the brain makes people feel there is something wrong when there really is not"!

    Now tell me, was I wrong to be insulted by his words? I was so angry I had smoke coming out of my ears!! He goes on to explain that he had come back to the room I was in and tried to explain again, he THINKS I understan, but I'm not sure! lol No, I didn't understand why they wanted to do injections of steriods and such for an imaginary illness!!

    Al i all I like my Pain Management Dr., but that statement almost sent me on my way looking for another Dr. Every now and again he will ask if my meds. helps the Fibro. and I always tell him the same thing, NO! then he want to put me on meds. that are made for other illness's, but I don't want to go that route.

    So far all that I can say is keep the bra off, wear huge clothes, wishing they wouldn't have to touch the skin at all. Buy big socks, cotton if I can find them because my feet hurt like the rest of me and I hate wearing shoes!!

    I'm in a Fibro mood, eh? Well it seems to stick with me all the time now. It's very cold here right now. I thought we had snow on the ground this morning because the ground was white with frost and ice everywhere. I don't like cold weather, but don't like extremly hot weather. I just can't be satisfied, now can it?

    take care all and please share when we come across anything that will help. Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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