please help critical situation, need advice

Discussion in 'Fibromyalgia Main Forum' started by tothedogs, Aug 26, 2006.

  1. tothedogs

    tothedogs New Member

    First of all, let me say thank you for all of the excellent information on this site. I do not have fibromyalgia, but my sister does- fibro. and myofascial pain syndrome. She has been treated with narcotic patches and other pain medicines for over 7 years. She has relocated and has to find a new doctor to continue care, she is applying for state insurance and disability and has not found a single doctor willing to treat her. She has ended up in the ER once, possibly twice by now (the 3 day patch was up yesterday) and the only options being presented to her by her case manager (through the mission/ free clinic) center on going to drug rehab. as opposed to managing her disease. They are treating her like she is a drug addict and not a person dependent on medicine to manage pain. She is afraid if she agrees to go into "rehab" in hopes of having her pain addressed that she will be denied disability, but as it stands now she has no continuance of her meds, will be left to handle withdrawl on her own...


    if you've read this far, I want to give you a huge hug.
    Does anyone know who we can contact or what protection she may have? I'm so terrified for her, I can't imagine how scared and hopeless she is feeling.

    thank you, thank you, thank you
  2. kholmes

    kholmes New Member

    I'm not sure what to suggest either (I have CFS), but I'll bet there are some people on here who might have good advice. If your message starts drifting down the board, you can type in "bump" and your message will go back to the top of the board.

    Good luck, and I hope you find some answers here and the help that your sister needs.

  3. PVLady

    PVLady New Member

    Where is your sister located? Maybe someone here will know a doctor or can recommend one..
  4. kirbycat

    kirbycat New Member

    Sometimes you can go to the pain clinics (they are usually anesthesiologists) in your area. The ER is not the place to get any long term treatment for pain, they will give you a one time shot and not much else. Also they tend to think everyone is looking for narcartics. I know, I am an Emergency nurse. Many of them there will NOT give narcotics regardless of your past condition. I know it is unfair.
    If your sister has been on narcotic meds that long, surely she will have withdrawals going without them, which is very dangerous. Try to get with someone (doctor)ASAP.

    I wish I had more to tell you,
  5. pamj

    pamj New Member

    I'm not really sure how to help either, but have a couple of thoughts.

    Did she have a good doctor before she relocated? Does she have medical records that show the history of her illness and pain? If she shows her records of physical problem, then couldn't they direct her to a doctor rather than drug rehab?

    Couldn't her previous doctor call in a prescription to her new location to help her until she gets the proper care that she deserves? Has she spoken to her previous doc to see what he/she recommends?

    Hopefully someone else will have more info...

    take care,

  6. tothedogs

    tothedogs New Member

    thank you for your replies and kind thoughts, they mean a lot!

    The doctor who had been writing the script is no longer an option, he was a family friend who stepped up to "fill a gap" and that lasted 7 years, now that she's in another state he cannot write for her and understandably so. She has kept records of her illness and various treatments prior to the patch, yes, but it's not representative of her current state/ treatment.

    We're in WI. She's slated to see a pain doctor on Sept. 1, but has no managed care in the meantime (patch was up yesterday)... she was told the ER would not treat her again (she received her last patch there) and her case manager told her that withdrawls would be "uncomfortable, but not life threatening". In a gap between patches a few months ago, her husband reported that she had a seizures and even "knocked herself out" on the bathroom sink. Yikes.
  7. IntuneJune

    IntuneJune New Member

    An FMS/MPS patient is not abusing drugs.

    I agree with the above poster, a pain clinic is where she "fits."

    The Rehabilitation Program put her in a different light.

    Many of us on this board manage our pain without pain meds. I found they REALLY did not address the pain but simply made me care less about the pain. (This was after trying them for a few years and it probably took that long for me to figure it out.)

    HOWEVER, I make no judgements on those who are helped as the pain medication may be working differently for them.

    Is there any other way to explore options for doctors who could treat her...... a referral by the doctor who had been treating her....

    Good luck, June

  8. tothedogs

    tothedogs New Member

    Hi Deanna, I'm in Southwestern WI, she is in La Crosse. We had discussed the possibility of going to a different ER, but afraid it would look like "doctor shopping"- since the ER gave the last patch, it seems like the onus would be on them to either maintain the treatment until Sept. 1 or be willing to treat the withdrawl. Is my logic flawed on that?
    She doesn't have a representative, would that be the next step? Even if Mr. Casper is out of her region, perhaps he could refer us to someone capable around us.

    I really appreciate all the info. and I can't thank you enough for even just brainstorming with me on this.
  9. Fredericka

    Fredericka New Member

    Also just to give you best wishes and I hope this works out well for your sister. How terrible to be treated this way, but unfortunately, that's how it is.

    I'll be watching to see update and hope it is a good one.
  10. blondie123

    blondie123 New Member

    I myself had no insurance for a doctor, but she can go to social services and get on "general assistance. she will qualify if she tells them she is trying to get social security.they will give her a little money, some food stamps(credit card) and she will get medical assistance.If she wins her case , they take part of the money from back pay while you wait to win your case.Also,I don't think going to rehab is the answer.Is she too dependent on meds? I have had every pain killer on the market.They tried to accuse me of that at one time. I don't take pain meds now, I suffer,but i just stick like glue to my heating pads.She needs to take a hot bath and rest for a week. Stress makes it work. It was the hardest for me to go tru all that waiting, but i made it.I have fibro for 20 years now. good luck.
  11. 1sweetie

    1sweetie New Member

    Did her previous doctor not keep medical records that showed he was dispensing narcotic pain patches and the reason why? I know you said he was a family friend but ethically and legally didn't he have to keep a record of those patches? Those prescriptions have a DEA # and are supposed to be traceable.

    He should be able to refer her to someone in her new location and if not if he would supply the records. It would certainly help her now.

    I have never had a narcotic pain patch but usually when prescribed they are given to people to whom the doctor thinks they will always need this type of medication. My DH has to use them because of severe degenerative disc disease and there are two that are severe and are inoperable and one that they tried to repair and the fusion surgery caused more problems than he had before. He has also been told he has FM.

    You are not supposed to just stop this med. Severe withdrawal symptoms will happen and from what I understood, they can be harmful. They start very quickly. He does not like this medicine and I have seen him not put the patch on because he wanted to do mow the yard in hot weather and he has to use breakthrough medicine. He just tried to see if he could make it for a day without it and he had to put it back on...because of pain and because of the beginning of withdrawals.

    She needs help (as you know). Please call the "family friend" for help her records.
  12. Lendy5

    Lendy5 New Member

    Hi, This is a tough situation and most Doctors are not licensed to call in certain meds across state lines.

    Have you considered asking him is there anyway he could call in a milder pain med into her previous pharmacy?

    Certain meds can't be called in due to the schedule drug but there are several other meds that can be phoned in.
    Maybe this could prevent her from having withdrawls from the patches.

    Even though she is in WI, if it is a milder med it can be transferred through the pharmacies.....Just a thought.

    Just an FYI, here are some doctors that treat Fibro throughout WI.

    David Nye, MD
    Midelfort Clinic (Eau Claire, WI)

    Dr. Michael Fleming, MD
    University of Wisconsin Hospital & Clinics Madison, WI

    Dan Malone, MD
    Clinical Sciences Center (Madison, WI)

    Frank J. Salvi, MD
    UW Medical School
    Department of Orthopedics & Rehabilitation, (Madison, WI)

    Dr. Fred Brodsky
    Group Health Cooperative, (Middleton, WI)

    Dana R. Trotter, MD
    Arthritis Clinic (Racine, WI)

    Hope this helps.
  13. Fredericka

    Fredericka New Member

  14. morninstar

    morninstar New Member

    Honey I know your sister is in the same situation right now, I feel so helpless like I have let her down because I cannot find a doctor to write the medication she needs. The pain clinic she went to stopped seeing her because she could not keep her appt. This is so unfair to people with the illness. I do not have the pain yet but I can see from the last 6 months where i am headed.

    Good Luck with your search...Star
  15. StephieBee

    StephieBee New Member

    I cant help you with this but can I suggest that you maybe could as a pharmasist if they know of anywhere she can go.

    I have a close relationship with my pharmasist and I trust him more than I trust some doctors.

    Perhaps they could help.

    Good luck and take care