Could Use Support

Discussion in 'The Watercooler' started by susiestar, Apr 2, 2016.

  1. susiestar

    susiestar Roll With It

    I am taking opiods for chronic pain. I went on them being fully aware that I might be on them for decades. But I am severely allergic to every NSAID we have tried (10 of them, after developing an allergy to the first 5, I got an allergic reaction with the first dose) and have been told not to try any more of them. I don't tolerate steroids well and opiods are all that is left that has a chance of working, medication wise. Now my idiot doctor wants to wean me off of them. I am terrified as the pain is bad enough to make me severely suicidal with-o medications. My family is also terrified for me.

    I hate the doctor - the one I like left and I got shuffled to my current one. Every patient of hers in the waiting room HATES her and hse only get s new patients when a doctor leaves and she takes their patients. I know this from listening to her staff talk. They despise her except for her ARNP. If she would listen and remember things from one appointment to the next it would be nice. She does NOT. Not even things I write down and she attaches to the chart! Each visit she lowers something and tries to add an NSAID. To this day she cannot remember (or read the big red letters on the chart that say "Allergies and the drugs she pushes) that I am UNABLE to take those medications.

    I am not being 'difficult' as she has commented. My body is unable to tolerate these medications largely because a doctor severely over-medicated me with them back in my teens and my body freaked out over it. You can develop an allergy if overexposed to a medication, and I was on amounts that would be too much for a 350 lb male - and I was only 80 lbs at most. Now even an allergist has told me it is dangerous to try every new NSAID because it will just end up the same way and could kill me.

    I don''t know what to do, but the 3 times the medication have been lowered have already decreased my mobility and functioning drastically. I use a TENS unit daily and other medications as rx'd, never take more than rx'd, never run out early, had ONE drug test that was wonky, but their employees mixed up my sample and an old man's sample, so it wasn't really a bad result. It just wasn't MY result. Now I write my name on my sample because they don't label the container when they give it to you. they label it after they process it, incl a dip test for an instant read. I never liked that and they don't like my sharpies - too bad.
  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm so sorry. Are you able to request another doctor? Is there another clinic?
  3. New Leaf

    New Leaf Well-Known Member

    I know we are supposed to be our own best advocates, but that is aggravating when Doctors don't pay attention to major issues, or cause issues with wrong dosage.
    I'm with Wiped Out, I hope you can find another doctor, or clinic......
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    Last edited: Apr 2, 2016
  4. pasajes4

    pasajes4 Well-Known Member

    Sounds just awful......hope it can be resolved
  5. Scent of Cedar *

    Scent of Cedar * Well-Known Member

    No, you are not being "difficult". It is almost like this doctor is blaming you because she does not know how to help you.

    How awful that this is happening to you.

    Chronic pain is a mystifying, horrifying spiral. You are not alone in what is happening to you. There will come a time when the medical profession will understand how to help...but for today, the professional response seems to be "blame the sufferer". This TED talk may help you understand what has happened, and how it happened. This is not in your head.

    If you find this TED of some value, here are others on chronic pain.

    I am so sorry this is happening to you.

    This is happening also to my daughter.

  6. TeDo

    TeDo CD Hall of Fame

    We would go to the ends of the Earth to find the "right" professionals to help our kids, sounds like you need to do the same for yourself. None of us needs to "just settle". Sorry you're having to deal with that asshat!
  7. FlowerGarden

    FlowerGarden Active Member

    I am sorry for what you are going through. Being in pain is so stressful and can be depressing. Does your insurance allow acupuncture? Someone recently told me that helped cure their pain. A person in my neighborhood was in a tremendous amount of back pain. He used a motorized scooter because he could barely walk and was on many medications. His doctor felt he was addicted to the medications and the man entered rehab. The rehab made up an exercise plan for him and a walking plan. He no longer uses the medications, doesn't use the scooter, and is walking the neighborhood, grocery shopping, etc. His insurance company actually agreed to pay for a gym membership for him because of the thousands of dollars they are saving on the medications he was on. Amazingly he is pain free now. After my spinal surgery, I did a round of physical therapy. A couple of months later, I developed pain. My doctor sent me for physical therapy again. This time in physical therapy, they focused on a plan that I can do at home. I only do the exercises three or four times a week and it is helping keep my pain away. Is physical therapy an option? Not sure what is causing your pain but I hope you can find a doctor who listens to you and can get you pain free. And keep using those Sharpies! A mix up of specimens is not right!
  8. susiestar

    susiestar Roll With It

    Thank you everyone. I have been working on finding another doctor, but the second your records are requested, this practice drops you as a patient. That could mean months with-o medications if the new doctor doesn't want to see you or cannot get you in for a few months.

    I have done PT many times. Mostly it made things worse. I swell all over. ANYTHING around my body that is firm, like a waistband or bra or tight sleeves or even socks, makes me swell up 2-6 inches.. My face swells to the point it hurts for what the docs say is 'no reason', meaning they don't have a clue why. Phys therapists don't like you to wear a dress but that is all I am ABLE to wear. Plus they all inist on icing the swollen parts. MY body hates cold violently. It goes into muscle spasms that take months to end. One PT refused to believe me and said if cold triggered spasms like that then she would treat me for free until they stopped if I would try cold packs on my back and legs. It took under 20 min for me to be crying in pain and unable to walk. She had to give me 6 months of sessions 3x a week. I made her stick to it and refused to pay or have it filed with my insurance. After all, I told her it would happen and she kept bullying me until we made that agreement.

    Exercise seems to make me worse. I have tried very gentle exercises much like the 'sittercise' classes my gma took and I went with her when I visited her. I have all the info from past PT sessions and have worked with a trainer. Every trainer and PT person I have worked with gets frustrated because the more they push the less I can do in the next session - which is opposite what everyone else seems to do. But usually I end up with the most senior trainer/PT person because they are 'fascinated' at how my body reacts. ALWAYS fun to have your health problems fascinate the docs/therapists/etc...

    I will watch the TED talks later today or tomorrow, no time now.

    Thank you everyone!
  9. Lil

    Lil Well-Known Member your state medical board! That's completely unprofessional! What if all you want is a second opinion?
  10. InsaneCdn

    InsaneCdn Well-Known Member

    Discuss this with the new office BEFORE they request records. You should be able to have your first appointment with the new doctor BEFORE they request records - after all, you have to determine if this doctor is a "fit" for you before you commit to moving your records.
  11. AnnieO

    AnnieO Shooting from the Hip

    I don't have anything helpful to add, here. But I'm thinking of you! :hugs:
  12. susiestar

    susiestar Roll With It

    The specialists here will not agree to an appointment before seeing records to see if they want you as a patient. I have called every practice in the state and gotten the same answer about this.
  13. Lil

    Lil Well-Known Member

    Well that's one thing, but the doctor dropping you because you request your records be sent to another doctor is another. Is it possible to get copies for yourself...NOT sent to anyone...without them dropping you? Then you could hand carry them to the next doctor you want to try.
  14. InsaneCdn

    InsaneCdn Well-Known Member

    Nice idea but... the doctor who receives them doesn't know if these are the originals, or if you have changed them. So, most doctors won't accept that either.
  15. Copabanana

    Copabanana Well-Known Member

    This is what I would do. *Assuming you have not solved this already.

    First, it might be illegal for them to drop you because you could have major health problems from stopping some medications cold-turkey.

    I would tell them up front in writing that you have called another practice to be seen for a second opinion *I would do this when you have a fresh bottle of pills, and several refills pre-approved, if possible. If there is any flack at all, I would in writing inform them that you are filing a complaint to the Medical Board and I would do so. Perhaps I would call the Medical Board first and ask them how to handle it.

    The rationale of this practice is that they can say they are protecting themselves and their patients to prevent patients going to multiple physicians to obtain multiple prescriptions of pills to either take or to sell. I would think that if you tell them up front, they would not be able to drop you. How could they?
    This makes sense but I am fearful that some employee will jump the gun. I think it is safer to put the risk on them (the first doctor). She will think twice before she drops you if she knows that you have been above board with her, and she knows she will get an ethics complaint on her record.

    If you have a paper trail, I believe you can protect yourself.
  16. Lil

    Lil Well-Known Member

    Never thought of that. You can see how often I see a doctor, huh?
  17. FlowerGarden

    FlowerGarden Active Member

    I am so glad you made the physical therapist that bullied you work so hard for free! My body hates cold also, so I know she was "torturing" you. I feel so bad that you are going through such pain. I understand what you were saying about doctors looking at your records before they accept you. I had to submit my records to the neurosurgeon's office before I could be seen. The doctors review everything sent and then decide which doctor would suit your problem the best, or decide they can't do anything and won't see you at all. I hope things work out for you real soon!
  18. susiestar

    susiestar Roll With It

    With pain medications you don't get refills. They CANNOT give you more than 30 days at a time. IT can take 30 days for a new doctor to get the records, another 30 to review them and then 2-3 months to actually get you in for an appointment. withdrawal is horrible. I feel amazing pity for heroin addicts and think methadone programs for them are wonderful and honestly a tapering methadone program is the only realistic way for a heroin addict to get and stay clean. You have NO idea how awful it is. And it is dangerous.

    I am going to write a letter to my old pain doctor and see if, knowing my situation and the practice, he will agree to see me with-o the records and waiting. I truly liked and trusted him and would have happily followed him if I had known he was leaving. I hope it iwll work.
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  19. InsaneCdn

    InsaneCdn Well-Known Member

    Sounds like a good plan to try for, at least.
    And maybe if he can't do it - he might be able to recommend someone else who can?