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  • #16
    Pain in Arms

    How did they know you have RA. is it a special blood test. My arms and neck have been hurting as well, My dr sent me to PT I went 24 times and its still there. I started Accupucture today felt great while I was there and then felt pain again in a couple of hours. I am going to pray for all of us. I am so glad I have you ladies. You guys are awsome.
    Blessings,
    Ruth

    Comment


    • #17
      I started with this unexplain inflammation above my right elbow..doc didn't know what was what..gave me antibiotics, but I was exhausted, weak, had fevers, as well as my usual strong IC stuff. The pain spread across the shoulders and into elbows and redness continued. They suspect the pain meds I'm on held pain in my hands down but I am now struggling with that and clumsiness with hands. SO...my doc did a CBC...found low white blood cell, gave me celebrex...told me I had a virus. The pain increased..increased to the point I was screaming in pain. I couldn't stop it. So last week my doc ran the Arthritis panel. They called me early the next day. There is a test that isn't exact but with the symptoms I have it is sure...it is a marker for RA...the normal number is 1-12 (1-12 whats, I don't know...) but then I wind up with 160 whatevers in this RA test....All I know is this test said that I was in the severe range...apparently what I know now is if I were in my 60's I would be in a wheel chair now because this is coming on me like a steam train. I month ago I could lift, move, pour, ect..I can't do diddly upper body...typing is even getting hard.My neck has to be totally supported. My legs are fine at the moment if those go....I don't want to think about it...independence completely gone, I am very scared of that. I don't want to be taken care of.Thanks....falling asleep.
      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


      • #18
        Pain

        Good Luck
        Blessings,
        Ruth

        Comment


        • #19
          My Sister has all the same symptoms. She just was DX with Lyme Disease and was told she has had it for a long time. I'm sure your Doctor ruled out everything he/she could. Haveing RA today is not the same as our Grandmothers. There is help with the pain and Doctors don't just think" yep you got it, nothing can be done." I Pray you find some comfort. Having IC is sure enough of a cross to bare. I care, Hug. Ziggy

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          • #20
            Blessings,
            Ruth

            Comment


            • #21
              Tracey,

              When you say your neck has to be totally supported, did you mean because of the pain, or because you can't hold your neck up?

              I panicked when I read that because my grandma had RA and then a few years later acquired Lou Gherig's disease, or ALS. It was horrible. I won't go into the details, you could Google it, but I hope your doctor's rule it out.
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #22
                Moonheart: I know what ALS is...I had Guillian Barre Syndrome when I was 20 and I was became very, very interested in diseases of the nervous system following that! After you spend a year paralyzed and completely dependent on others and machines to help you eat, breathe, pee and poop.... you become phobic of anything that may remove your independence. No, my neck hurts but my muscles are also weak...the same sorta weakness I have in my tricep and the epicondyl of the elbow (pain) and weakness in my forearms...hands. I don't think there's a connection between RA and ALS except Auto immune.

                With Lyme disease,zygala...doesn't the rash look target like?

                Thanks all

                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


                • #23
                  But I think I will look up ALS
                  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


                  • #24
                    Tracey--
                    I'm glad they figured out what it is, sorry is was something so yucky.(Yup, that is actually a medical term). Every one of my last dx have been something autoimmune. You have been through so much and are such a strong person. 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


                    • #25
                      Yeah...Yucky...my favorite medical term. I've just decided there should be a disconnect from my pain nerves and everything. I am glad I have a counselor. My appointment with him a couple days ago was the most productive I've had in 4 years. I think because I've finally come to terms with the fact I can't work, and now we can move beyond the wall...I am just angry now and hurting, looking for the support from my family that I am having difficulty getting. But....I may be able to drag them into counseling with me...my counselor really wants me to, because they just don't get it. Anyway...Babs..you sure have alot of things going on...I've had a DVT...when I had GBS (a nurse dropped me when it was in my chart to be two man transferred) and my knees went completely under me...I mean the lower part of my leg folded under my knees and stretched the athrophied quads...between that and my paralysis...DVT time..
                      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


                      • #26
                        the pain has spread

                        I am in so much pain right now I can't think straight...I woke from a nap earlier and the pain has spread to my knees and ankles as well as the the intense pain in my arms, which...beleive it or not....is even worse than before..I truly hate being a whiner but I "cannot take much more of this captain" (uh, Star Trek reference...Scottie..) sorry, lame attempt at humor. Holy schmoly this pain has to go away and go away soon. I am supposed to make an Easter Dinner tomorrow and I don't know if I could do it if they were in Hungry Man trays. And I'm scared. The pain moving to my lower joints is what scares me...I don't want to be dependent,

                        Have a great evening and happy Easter
                        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


                        • #27
                          A friend of mine has had RA for close to 20 years. She's taken prednisone, methotrexate, gold, and many other meds that I can't remember. She's had fantastic relief from Remicaid, though, and she was miserable when she had to change insurance and had to go without it for about a year. She's back on it and is feeling so much better. Hopefully your doctor can find something to give you relief.

                          Comment


                          • #28
                            Pain

                            PingPong, That is great. I am so glad that your friend is going good.

                            Tigger I know its going to take time but I know you will find the right combo of meds and be on your way to a good life. I will pray for all of us, that is what I seem to do all day long. Have a good Easter.
                            Blessings,
                            Ruth

                            Comment


                            • #29
                              Hi Curly cue: it's funny..you get to writing to so many folks you lose track...It Makinit with the goofed up joints...But Tigger has been writing alot on this thread so maybe that's why...

                              I've read about all the supplements that you listed Ping Pong..my chiro gave me list and I researched them and am going to decide which ones...I am going to take Glucosomine, and am taking Vitamin D, 300 mg of CoQ10, Probiotic (like what's in yogurt), and Vitamin C. I am researching others but I can't stay awake. But I will have to take out a small loan to get them. I sure hope my insurance will pay for stuff the rheum. prescribes. I woke up all night in pain. Took lots pain meds finally...between that and my bladder I am a wreck.

                              Anyway...research, research, researcj

                              Tracey (MakinIt)
                              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


                              • #30
                                Tracey,

                                I hope those treatments give you some much needed relief! Has your doctor mentioned anything about complex regional pain syndrome?

                                Gentle Hugs

                                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.

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