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Yay! Saw specialist (still sick...but not as bad)

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  • Yay! Saw specialist (still sick...but not as bad)

    Okee dokee...so I see this Rhuemy doc that I could tell by the diplomas on his wall was about my age....First time I have ever seen a doctor look completely stunned at the number of illnesses I have had (I told him at the end when he suggested a specific antidepressant for the pain, I couldn't take it b/c of weight gain and type II diabetes...he almost fell off his seat) Anyway, so he does the doctor physical poke prod, ask questions...the usual...Said my RA factor was very high but my symptoms were atypical. The he proceeded to poke his fingers in various spots all over my body which produced instant "ouch" reflexes and "quit its, please"...then a 20 min discussion re: my sleep habits (very bad.) He did more involved labs but is almost positive I have Fibromyalgia and a massively bad case of tennis elbow. (I got a cortisone shot for that complaint...I reallllly hate those. ) The only thing that really bothers my physical therapist and my counselor (who is trained in chronic pain) is that usually tennis elbow comes on after repetitive use...been a very long time since I've thrown a softball...(Varsity softball team, 1983) And my PT did a thorough strength eval today and it was apparent I knew how to use weights, she didn't have to tell me how to sit or use correct posture or breath...but I was incredibly weak. So, I have some work a head of me. (To get better) Funny, mention the IC and the doc is like "isn't that some sort of bladder thing and you have to pee alot?" Then "YOURE on disability for that?" I just smiled and said "glad you're not my uro"....He's not a very smiley man...ahem. jeez, get a life. He asked if I wanted something for pain and I think he was testing me. I told him no Thanks...I had a contract with a doc ,that worked fine. (guess he figured I was scamming the system with my social security, now see if he can catch me wanting narcotics.)
    Maybe I'm paranoid. He did do a good job explaining the sleep, pain cycle. Since my car accident in November I have not slept well at all, and I can't get into a deep sleep. I wake every hour. Have to pee. Then go back to bed and do it again. Bad dreams wake me. Pain wakes me. My counselor now wants me to write my dreams down....... So...get this..(I'm a psychology major but also majored in Biology so this has always a little too Freudian and funky for me) I told him today about the recurrent dreams...one is that I keep get lost on airplanes and in airports (i haven't flown in a plane for 5 years) The other is that I get on freeways and get lost...freeways that go nowhere, usually raining and dark (like they are here in the winter and like my accident) and I am often driving in the passenger seat (so I can't reach the wheel or pedals) on the wrong side of the freeway driving backwards....HELLOOO...too much Oxy those days I think. But his theory is I'm lost in my purpose in life. Which is true.

    Sorry to blab..I'm just happy it doesn't look like RA. Isn't that funny? I'm excited because I have a syndrome many would consider debilitating. I consider this one a challenge because I can fight this one. It just hurts like the devil right now.

    You are all so great, thanks so much! Moonie: I wish I could give you some help, be a pair of hands under your shoulders to get you up and a foot to punt those boys..(always easier to do someone elses kid I learned as a teacher...you can be much more objective) Take care all...and I am seeing my pain doc soon so I am keeping the Complex Regional Pain sydrome in mind as well, although it sounds like it sucks completelY. (Can't I just pick what I want and don't want anymore?)

    Tracey
    I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

    Medications I CURRENTLY take:
    90 mgs Ms contin (45 mgs Am/PM)
    Percocet as needed
    Topomax 100mg day
    Ambien 10 mg bed
    desipramine 25 mgs




    If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
    Albert Einstein

  • #2
    Awwww...love you hon!

    So happy it's not RA!!! Fibro was my other thought as I have the tender points as well, but I don't know which is worse.

    We'll get through this won't we? We have to.
    http://www.TheCraftyEwe.etsy.com

    Comment


    • #3
      Tracey,

      I am so happy to hear the good results with this appointment. You have a wonderful attitude about this and that goes a long way and will certainly help you as you fight this challenge. We have something in common! I majored in Psych. I was going on to be a Therapist and possibly to end up being a Professor but I got so sick. Not a day goes by that I don't long to be back at work and pain fee.

      I am just elated to hear that you got some answers Tracey!

      I've been thinking of you and wondering what they were going to say.

      Have a Wonderful Day!

      Kara
      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

      I also have some journals of my journeys, past and some present at:
      http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

      Comment


      • #4
        I went to my reg. doc today for my "drug score" ha, ha...no, he's my case mananger and sometimes I feel like I see him just to get my narcotics refilled but he is a wonderful guy and I don't know how would have survived these years without him.

        Anyway..he is very skeptical of this , although he will accept Fibro. He just finds it odd that my joints are inflammed and I am still feverish. He also is worried about my sleep patterns and wants me to take a sleep study...I changed the subject (I don't want someone watching me sleep...CREEPY..plus, you're anchored up to a bunch of wires, eh? I have to pee most of the night..when ever a dream wakes me up, I have to pee...they will have to unattach me.) My chiro Also has the same comments, and stated those before I even talked about what my GP said. What ever...I still hurt but maybe I can work out now. My PT wasn't shy yesterday and I am feelin it today...eyow. pathetic. I used to row 50 pounds on those machines...I rowed 5 pounds yesterday and struggled at that. Sad. I was very muscular before IC and have just let myself go. "sigh".

        Oh well..little more tired and grumpy today but still in a more positive place : )... Anyone ever heard of Myocystis? I was at one time tested for that but they decided no, my chiro still thinks there is a connection. who knows. We all have to die of something.

        Speaking of. My chiro friend got his PET scan back Re: his bladder cancer. It has spread to 3 bones in his ribs but has completely left his bladder and lymph system. they are going to try one more round of chemo...I'm sad. He is a good, good man. He was so tired after he worked with me today and I asked him when he was going to take a break. He said many people won't see him, like they are freaked by his cancer...so he comes to those who are mostly his friends and just keep him in spending money.

        Take care...

        Tracey
        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

        Medications I CURRENTLY take:
        90 mgs Ms contin (45 mgs Am/PM)
        Percocet as needed
        Topomax 100mg day
        Ambien 10 mg bed
        desipramine 25 mgs




        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
        Albert Einstein

        Comment


        • #5
          I may not have RA but I am so Freakin tired!!!

          OMG...you guys...I feel like I have squished in waffle iron each morning and carry the weight of that experience all day. Sometimes, it can take a half an hour to do a 2 line email. I am dragging myself to the gym. dragging my butt around the track and then doing the aerobic machines (light) I'm not ok'd for wieghts until the pt is satisfied I'm not going to kill myself from shear embarressment. But OH how I love that time in the tub. (it has been helping me sleep better at night) But I am so flippin exhausted ALL DAY. Is it FIBRO? I just want to curl up and never wake up. I'm not even depressed. In pain, but i'lm so used to that now it's my "norm". I think I'd be in shock if I woke up and wasn't.


          Gotta go promise the little one a swim night. UUUGH.
          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

          Medications I CURRENTLY take:
          90 mgs Ms contin (45 mgs Am/PM)
          Percocet as needed
          Topomax 100mg day
          Ambien 10 mg bed
          desipramine 25 mgs




          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
          Albert Einstein

          Comment


          • #6
            Tracey,

            I know how you feel. I am also going through PT. It's not going well though. I understand the feeling of dragging yourself around to do the simplest of things.

            It's so good to hear that some things are helpful to you, like the tub.

            I am thinking of You! I hope you are having a good weekend.

            Kara
            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

            I also have some journals of my journeys, past and some present at:
            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

            Comment


            • #7
              Tracey,
              I had CRPS from 95-99 and would be glad to share my experiences with you. I had surgery that got rid of all the symptoms but prior to that when through so many therapies I lost count. Hang in there.

              Hugs,
              Barb
              (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

              [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
              :angel: IC Angel Volunteer Coordinator :angel:
              :) Contact me via PM or e-mail if you would like to help
              I have learned all about life in 3 words: It goes on! :D--Robert Frost
              PCOS 7/85
              RSD 7/94 :headbang:
              Endometriosis 9/98 :toilet:
              Antiphospholipid antibody syndrome 9/99
              Kidney stones--too many to count
              Factor V Leiden mutation 10/02
              IC 6/03 :evilsmile
              Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
              "Spirit is an invisible force made visible in all of life"--Maya Angelou
              "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

              Comment


              • #8
                I've been meaning to look that up, but since my daughter self diagnosed ovarian cancer by going through the web (turns out she eats bad...I've told her that, and she has one of those cysts that get into your ovary that holds the eggs...I went to the Ultra sound with her and both ovaries same size, one a little denser)And she had a nervous breakdown, bawling for hours...I have been more reserved about that....I told her to stop diagnosing herself on the internet. (She has always been sensitive and thinks she is going to die.) anyway, I am going to look that up.

                I do feel a little better..Yesterday I actually did the elliptical trainer for 10 whole minutes , broke a sweat and didn't wear out. I had enough energy for a 7 minute run on the treadmill and a 5 min hand crank thing. So over 20 minutes of aerobics. Then my daughter met me at the pool (the little one) and we played for a while.I am RESTING today because I hurt. My doc explained Fibro as a syndrome in which the gatekeepers for pain in your nerves don't work anymore. So your brain percieves every pain as major. (gatekeepers are at various points along your nerves and they stop the pain so you don't percieve, say, a burnt finger all the way up your shoulder.) Who knows? But I am SLEEPY... Wow...

                time for Sunday nap.
                I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                Medications I CURRENTLY take:
                90 mgs Ms contin (45 mgs Am/PM)
                Percocet as needed
                Topomax 100mg day
                Ambien 10 mg bed
                desipramine 25 mgs




                If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                Albert Einstein

                Comment

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