Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Thank you for your support...actually, she sees the chief peds rheumy at UCLA (we live in SoCalif)...who also is consults with 's immunologist. Unfortunately, her present weight situation is a choice...it originally began with wanting to maintain her weight while she could not work out after the meningitis, then became perhaps a means to feel some element of control in a life controlled by illness and pain...and right now, the weight is becoming the drs focus, out of necessity, yet it is a viscious cycle...if she cannot get some sense of normalcy back in her life (school, sports, etc), she seeks control, but if she is ill and in so much pain, she can't get any normalcy back....her body just doesn't cooperate. (She has been out of the pool for 11 months now.) She was exceptionally muscular in biceps, triceps, quads ...all that muscle is gone... She is 5'3 " and weighs 95 lbs...she imposes severe restrictions on her food intake... I forgot to mention something...I think when I first introduced to group I mentioned a suspected flebitis or vasculitis in Sept wehn on IV meds...she was in the hospital again last week and two IV nurses (including PICC nurse) tried five locations to start an IV with no success...nurse said if vein did not blow, when she tried to thread catheter, it was as if she hit a something in the vein and the catheter would 'u-turn' ...every cathether came out very bent - the nurse said she had never seen anything like it... I told you the rheumo did the test for spondy and it was neg? You are correct, this is tearing me up...she's had a lot of moderate health issues, especially these past few years, but the chronic pain - that one is relentless and leaves me feeling so helpless and frustrated... Thanks for listening...again. " Tepper, Michele " <MTepper@...> wrote: - I am right there with . It sounds like a flare to me. Chris too is underweight - 6'4 " and 155 lbs if he is lucky. No real reason we can find despite various tests. Do you see a ped rheumy? If not, I would. The more common practice nowadays is to treat aggressively from the get go - DMARD's - rather than only using NSAIDs. But I am no doctor and you need to feel comfortable with what is going on and what your daughter is taking. A lot of her symptoms sound like spondy to me, as I have said in the past. Perhaps looking into a second opinion, perhaps with a dr at a university? I am not sure where you are located. They may not have the answers either but at least one consultation even if you must travel far, may be worth it. I am sorry your daughter is in such pain, and I know how it must be tearing you up. Please know that we have all been where you are, and we are here to support you, and for you to vent to whenever you need it. Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of nancy barnes Sent: Thursday, December 21, 2006 10:44 AM Subject: questions - worried hi everyone... we are one of the new members... has had recurrent problems with tendonitis, bursitis, an occasional swollen joint, some 'damage' to her finger joints, but above all, chronic, unrelenting leg pain, seeming to radiate primarily from her hips and knees. She is only on Mobic for leg issue - she is on Vicodin and several other meds for migraines - rheumo is apprehensive to give additional meds as her weight is very low presently. She has the positive ANA and elevated CRP, but dr says those could be from any infection in her body? Six days ago she could not wake....so sleepy, as if she was heavily medicated, but she was not...when she was awake, she was in great pain, but complained of weakness and odd feeling in her musculature...she is so fatigued, it takes her 2 hours to eat her dinner...she looks so pained when she walks...no fever..had a wrist joint swollen 3x size of other for 2 days, but no pain in joint...thought perhaps a virus but now convinced no...she is so stiff, tender, tired, so much pain, but not aware of more swollen joints...does this even sound like arthritic issues? A friend said it sounds like a flare...I am so confused..she doesn't fit the typical pattern so dr has no answers either...I am just tired of watching her suffer... Any input would be welcomed and appreciated... and , 16, unspecified arthritis, pidd, chronic migraines __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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