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    #16
    ~Lin, big hugs your way! My heart sank reading this. As rough as it is for us SCI/D folks, I truly cannot conceive of having to show up to a brand new pain doc's office as someone with Ehlers-Danlos. Getting two calls back from your pcp on the first day without a doc for pain is very encouraging -- I hope they come through for you!

    When you request your records from your most recent pain doc, be certain to specify that copies of your prescriptions be included with your file. I've been screwed over twice now because the chart notes made by my pain docs did not specify what was prescribed, when and why doses were adjusted, etc. and the chart did not include copies of the actual prescriptions I was given (despite the big production each of those offices made of not releasing the scripts to me until they were photocopied).

    The suggestion to speak with your doctor directly is a good one. Between the Innerwebz and the phenomenon of Six Degrees of Separation, there's got to be a way to make contact. I'd be happy to lend a hand; so far, there's never been someone I haven't been able to locate.

    Were I in this situation, I'd immediately begin rationing out my pain meds until I was again in the care of a reliable doctor. Cut back as much as you can stand to without leaving yourself so debilitated by your pain that you're unable to do the work necessary to locate a new neurologist and pain specialist.

    I'm so sorry you've ended up in this horrible situation. I'll keep thinking about resources that might be useful in your quest.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar

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      #17
      hipcrip, I'll be sending you a pm! If I can track him down, maybe I can at least get something in writing for my next pain dr. EDS does make it particularly difficult with pain management. With it being rare plus a lot learned in the last 10 years many drs are uninformed or misinformed. I also thing part of the problem is the way pain presents. Everywhere hurts, and what hurts the most or what kind of pain it feels like is constantly changing. Those familiar with EDS understand the mechanisms behind this, others probably think it sounds like lies. I don't exactly blame them either. I also have frequently gotten from drs that they don't want to use strong meds like opiods since I'm young and have a lifetime of pain management ahead. Well I'd rather be more functional while I can! Maybe there will be a cure or treatment in my lifetime. If there isn't, I'd still rather get more functional and active now since joint damage increases every year. Between this dr I've now lost and the wheelchair I've gone from bedridden to going out alone for errands and looking into school and work with vocational rehabilitation!

      I will make sure to request copies of my prescription history, thanks! I'm sure that's also important because of what meds didn't work for me (like methadone) and reasons for arguing with insurance to cover specific ones. The history of cheap meds has to be tried before they cover expensive ones.

      I'm not too concerned about having multiple drs write the scripts since everyone is in the same loop and will know what's happening and why. I'd definitely prefer one dr to over it all, but if I can't get that I'll do what I can!

      I've been thinking about rationing my meds. But I don't think I can be functional in the way I need if I cut down. A lot is going on right now. I don't really want to get into it here, but it's causing more physical demands in my daily life than normal. To the point I'm waiting to have surgery on my knee until things settle. So hopefully between various drs I'll be ok! I do have a bottle of methadone still. I kept debating bringing it in to the clinicor back to the pharmacy but ended up holding on to it. I had bad side effects to my full dose, but could take half the dose without side effects. It didn't relieve enough pain, but something I could use in an emergency. So if things look bad I can titre down and then replace my meds with the methadone. If I can get by I will try taking my prn ultram instead of morphine or dilaudid doses. Sometimes at night I can do that.

      I missed the call from my pcp today, and somehow despite leaving the original message and being called back twice yesterday they still are a bit confused. My pain dr was a neuro who I was seeing for pain, and then when some new neuro issues popped up I saw him for them as well. And was seeing him in a neuro clinic at IU, notthe IU pain clinic. So I need either another dr who does both, or 2 referrals. I also gave the name of a neuro who had been recommended to me. So the pcp called saying they did the referral, and hopefully this dr can take off where mine left. Only, this neuro doesn't do pain. So I also need a referral to the IU pain clinic or another pain center. They didn't get back to me before the office closed at 4:30. But I did schedule with the neuro for sept 18th, and like I mentioned before I see my geneticist aug 24.

      please excuse typos, I did this whole message on my phone lol. If I try to edit it from my phone it sometimes causes more problems. I'll probably clean it up when I get to my computer.
      Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

      I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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        #18
        Aren't you worried that by getting multiple dr to write presc that they will think you are an addict and will cut you off from all meds. Here in Alabama a record is kept of meds that are gotten and it's shared my all pharimst.

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          #19
          at this point I have not had multiple drs write my meds. If that happens though no I will not be concerned because all of my drs will know the situation and they are all in contact which each other along with knowing what pharmacy I use and I've used the same pharmacy for at least 10 years. Multiple drs filling prescriptions is a red flag because people go behind the drs backs to get meds that are unneeded or double prescriptions. As long as I'm only taking the meds I've been on and my drs know why a certain one is filling in for the missing pain dr I am not worried. I have noting to hide and have no problem with my drs all having access to my records or submitting to drug testing etc.

          you say about them keeping records and sharing them as if it's a bad thing. That's a GOOD thing. You're safer from medication interactions if the pharmacy knows everything you're taking. And anything that wards off those who do abuse meds (record sharing, random drug testing) are perfectly fine with me and in my opinion are to the benefit of those who need the medications. Because those who truly do have nothing to hide.
          Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

          I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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            #20
            I think them sharing information is a great thing. I'm lucky I'm not in any meds so I don't have anything to hide. I hurt all the time but at this point it's nothing I can't handle and I'm very glad.

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              #21
              Well things are getting shittier. I went to get my last script fill from the current place, and found out the prior authorization on my morphine had expired. And I couldn't get a PA since I have no pain dr, and couldn't wait any longer because I'd already used up my buffer of morphine waiting for the script to get to the pharmacy since the didn't have it to give me on the 31st. So I was only able to get 60 instead of 90 morphine. I'm going to have to cut back now.

              I got the referral to a pain clinic and called, but found out they're too far for me to get to. They're twice as far away as IU is. I physically can't drive that far in my car, and have currently been having to borrow a friends van to go places and that's a gas hog among the difficulty of making sure it's available when I need it. I was selling my car in the spring because of not being able to drive it. It's a manual and I can't deal with the clutch and my left knee. My roommate had always been the one to drive back when I was mostly bedridden. So now that I'm going places alone I need a car to get there! But my car was broken into, and I don't have money to do the needed repairs to be able to get enough out of it to buy another car. I'm not currently on a bus route either.

              I called my drs office and left a message that the place is too far away, and mentioned it's twice as far away as IU which I had mentioned as a possibility. Tomorrow it will have been a week, and I don't even have a pain appt yet!! So I'm REALLY Hoping my geneticist is willing to write me a month of meds when I see him.
              Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

              I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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                #22
                This is terrible! Maybe redouble your efforts to locate and contact your former doctor - you've nothing to lose in the effort. It strikes me as grotesquely irresponsible for the clinic not to have made other arrangements for that doctor's patients, but apparently they really are allowed to kick people to the curb.
                MS with cervical and thoracic cord lesions

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