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    #16
    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
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

    Comment


      #17
      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

      Comment


        #18
        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

        Comment


          #19
          Originally posted by Jo6 View Post
          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
          Sher
          My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

          Comment


            #20
            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. s 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

            Comment


              #21
              OK, I gave up on wearing bra's years ago.now that I'm an old lady who cares? I will say I swear by Thor-lo socks. been wearing them for years. expensive! but once you wear them you will understand the comfort.

              I seldom wear anything but sweats myself. actually never related clothes to fibro pain. makes sense. as for hugging? not welcome here! my dog jumping in my lap drives me nuts!

              cold weather is the pits. but then again so is too hot! so we can't win,just have to adjust & deal with it best we can.

              Comment


                #22
                Jo,

                Hi. The cream they gave me doesn't have an actual name. Here is what it says on it though

                DICL./BACL./CYCL./GABA./ORPH./TETRAC. (9) 3/2/2/6/5/2% CREAM

                It is from a company called Transdermal Therapeutics, Inc. It has to be ordered straight through them, you don't get a script to take to a pharmacy or anything. You are supposed to apply 1 to 2 grams (pumps) to the affected area 3 to 4 times daily. Of course I have not been able to keep up with that at all. I never remember, so I have barely used it. I know, bad me. I do need to start using it on a regular basis to see if it will do anything. I will let you know if it works or not.

                I think I have been in a flare too lately. I have been even more tired and stiff and sore.

                Heidi



                Originally posted by Jo6 View Post
                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.

                Comment


                  #23
                  Hi All,

                  Just thought I'd check in and see where everyone went. Ooo right, we're all still at home. :ambivalence:

                  Anyway, for those who are interested in the comfy clothes discussion, the yoga pants in a size larger are Heaven! :angel: Absolutely no pressure anywhere and they were only $12 at Wal-Mart. Clothes you can wear like PJs and still venture ouside in -- that's what I call a bargain, ladies. Plus I found some diabetic anklet socks in grey at the dollar store -- again no pressure with a strange kind of webbing to hold them up. I gotta tell ya, I'm gonna be quite a sight to behold when I finally get my Total Comfort Outfit together! Maybe I'll start my own clothing line, since there seems to be a niche market for everything under the sun, right?
                  Sher
                  My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

                  Comment

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