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  • Allodynia Need Treatment Options

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    Old 03-18-2018, 07:37 PM   #1
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    Unhappy Allodynia Need Treatment Options


    My mother was recently diagnosed with Allodynia in its most severe form. She has trouble wearing clothes, sleeping, or going outside. She has been managing pain through prescribed opioids for the last several months but her doctor said he is no longer in a position to prescribe them for her because of new regulations. Nothing else,has helped reduce the pain.

    I understand underlying issues (mental health, sleep depritivity, etc) cause flare ups or maybe even the pain as it exists, but I can’t even get her to leave the house to consider acupuncture or any alternative medicines.

    Looking for help and guidance to navigate a way on top.

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    Old 03-19-2018, 04:45 PM   #2
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    Re: Allodynia Need Treatment Options

    Welcome! Sorry she is struggling - that sounds horrible. Unfortunately I don't have any advice specific to this condition, but maybe some of this could be helpful. Just know that she is not alone in her suffering and pain management difficulties. Being prescribed opioids for chronic pain is becoming less common, and even long term low dose patients with successful results who have failed all other conventional treatments are being cut off.

    There are also non-opioid prescription medications she may or may not have been tried on prior to opioids. For example, anti depressants used off label (which can also be helpful for depression and sleep issues which typically come along with pain) and nerve pain meds. I'm not sure whether they would be indicated for her condition, but its something to ask the doctor about.

    Hopefully if they will no longer prescribe opioids they will at least have some alternatives for her to try, and taper her down slowly to avoid withdrawal symptoms. If she isn't seeing a pain management specialist, that is who she needs to be seeing. A good pain doc can be tough to find, but the good ones will treat the pain as a whole with a combination of therapies, give referrals as needed (such as for a therapist, sleep medicine doctor), and much more.

    Might there be any chance of finding an alternative practitioner who would come to your home for acupuncture / massage / etc? If you have and they accept insurance, they may be able to take that for the visit cost, then charge you for their time & mileage to drive. I doubt this will be something common or advertised, but if you explain her unique predicament and dire situation you might be able to find someone compassionate who would be willing to go the extra mile. That is likely to take many many phone calls.

    Similarly, you may be able to find a therapist who is willing to see her online rather than in person in office. If nothing else, having a professional for her to talk with about her struggles with the condition can be helpful. Depression, anxiety, and sleep disturbances are very common with chronic pain conditions, and treatment for those can improve overall quality of life.

    There are also things that can be done on their own, such as relaxation music, guided meditation, water therapy (if you are close to a pool), yoga (online video), diets (such as eliminating gluten and/or dairy), tracking everything (like food, sleep, activity) to try to identify potential triggers, supplements, hot/cold therapy, etc. If she is willing to explore the potential of this condition not having a physical cause, you may want to look into various programs for Mind Body Syndrome / unlearning pain and similar; there is information that some have found helpful in that area. Hang in there! Best wishes.
    constant headache since 2006

    Last edited by Administrator; 03-19-2018 at 05:57 PM.

    Old 03-20-2018, 06:06 PM   #3
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    Re: Allodynia Need Treatment Options

    Thank you for taking the time to respond to this, and for your encouragement.

    We're hearing more and more about chronic pain sufferers being impacted by the tightening up of opioid prescriptions -- it's a difficult situation to navigate and horrible timing to be dependent on them for pain relief.

    You are the second person to recommend a pain management specialist so that is I'm hoping she will be willing to consider, as I think it could definitely help.

    Right now we are battling the horrific pain as well as the mental implications of that. She has tried many remedies in the past 6+ months and the painkillers were the only thing that allowed her to fully function, so her hopelessness in the situation is understandable but also limiting her willingness to seek alternatives.

    I'm open to thinking outside the box so I appreciate your input.

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    allodynia, fibermyalgia, nerve, pain management, prescription drugs

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