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Petition: First Do No Harm for Patients Cut Off From Opiates for Pain

Pain by Jade R

Pain by Jade R

Mesh Medical Device News Desk, August 1, 2016 ~ The stories are heartbreaking. Thousands of people may soon be cut off from their opiates for pain control due to a nationwide crackdown on overprescribing of these drugs.  

The stories are from those who are not abusers but need their medication to make living bearable. See this MND story on the issue. 

Many mesh-injured understand that that’s all about. Drugs such as OxyContin, methadone and Percocet may enable them to function on some level.

The push is contained in the National Pain Strategy that was issued in March as a way to cut down on rampant pain medication abuse. Overseen by Health and Human Services it is an interagency coordination involving the CDC, FDA, Veterans Affairs, National Institutes of Health, among others, to “transform how the nation understands and approaches pain management and prevention.”

As with most things, the pendulum swing does not include consideration of the legitimate uses of pain meds but rather the “opioid epidemic.”  The underlying assumption is directed at the abusers of which there are many. It’s estimated by the CDC that every day 40 Americans lose their lives to prescription pain medication. Read more on the Huffington Post here.

The CDC’s guidelines are recommended for doctors prescribing outside of cancer treatment or end-of-live care. For everyone else, including the mesh-injured living with chronic pain, they may not be recognized as a legitimate need. Here are the Guidelines for Primary Care Providers. 

In response is the First Do No Harm petition to the White House from people who have been cut off from their opiates for chronic pain. There are thousands leaving their signature along with heartbreaking stories of how they have suffered because their doctor will no longer prescribe pain medication.

States are also jumping in with their own no-opioid policies and surveillance of physicians who write prescriptions for them.

Thanks to Still Standing for bringing this to our attention.

She writes, “If you are interested in giving your voice to this issue, I urge you to sign the petition. Even if your medication has not been stopped or eliminated, there is a very high probability that it will be soon. This does not just impact new pain patients, it sweeps up all patients who rely on opioids for adequate pain management. Visit this site. It is eye opening to say the least.”

Here is the  Petition to Congress. 

 

22 Comments

  1. suki mann says:

    Thank goodness I was able to see the opioid drugs prescribed to me for my mesh problems were only making me worse and took the hard route of getting off them. I continue to find people who suffered the same symptoms on the opioids as I did, not realising it was the drugs that were causing the symptoms – and though mesh continues to wreck my life and I am not without a level of pain off opioid drugs – I function a thousand times better without them…..

  2. Still Standing says:

    Jane, thank you so much for doing a detailed story on this. It is a real concern. In response to your question about not using opioids, I, like suki mann, have not used them, mainly
    because my treating urogynecologist does not like to use them. As far as managing without pain medications, it is hard to do many days. What I use is just a combination of things that fit my needs. Everyone is so different and each has to figure out what they are doing or not doing that might contribute to pain. Are there other medications that can work in combination; what movement can be done to insure that the pelvic muscles stay relaxed and fluid.. Moving is hard to do when you have severe pelvic pain, but it is a vital piece that seems counterintuitive until you think about it. What dietary changes can you make that reduce inflammation around the mesh, in your bladder, etc. how compassionate are you with yourself? No, making these adjustments wont magically take away pain, but they can each contribute to the PM process. And yes, i was in agonizing pain for 8 years, now it hovers aroun a 4-5, so if you are thinking that you must be much more injured than suki mann and myself and that these other things cant possibly help with your pain because it is much worse, hold that thought. I, too felt that way, but I knew that I had to be open to changing my mindset and willing to try different approaches even if I did not believe they would help. Figure out what might work for you so that your story wont be one of those gutwrenching stories on the First Do No Harm petition. Keep a pain journal of when your pain is worse and when it is manageable. Jot down what you were doing, or eating, etc., about the experience. Did you rest more during the day, did you overdo? How about sleep? All of these things can impact pain levels.

  3. Linda says:

    As a social worker and having worked in a Methadone treatment program, I have refused Opiates from the get go except for right after surgery. Addiction to them will just provide another debilitating circumstance. I continue to search for alternatives. When pain is 7 or over, I take 10 mgs of Valium. I don’t need this frequently. I have learned to pace myself. We know when the pain is escalating. Lay down and rest before it is unmanageable. I recently started the suppositories prescribed by Dr. Hibner. Baclofin and 5 mgs of valium right to the vagina. I have found it very useful. I am able to go to the bathroom without laxative for the 1st time in 6 yearsHeating pad is great. Biggest issue is allowing yourself to rest before it is out of control. I do have to add, I had removal. When the mesh was in the only relief I could find was botox every 10 weeks.

  4. Kitty says:

    Gotta move to a town that is right for me….u gotta talk about it….talk about it…talk about it

  5. Marcie says:

    We have seen women who claim mesh injury who are able to come off prescription pain medications and for some reason they are never able to tell what they are doing to help with the pain. It was recently brought to my attention that these “healed” women live in states were cannibus oil is legal which is fine but they are not really “healed”. Others are using kramptom. I personal feel it is very insensitive to the pain others are suffering to project healing when you are in fact using untraditional mind altering medication too lesson your pain symptoms.

  6. Linda says:

    I AM NOT HERE TO JUDGE WHAT IS WORKING FOR ANY WOMAN’S PAIN. I was offered all kinds of pain meds to manage. I chose not to go that route because I know what that looks like, especially when Doctor’s then with draw the pain meds. I want to clarify PRBN Valium ends up being 2,3,4 times per month, I find it is usually the result of having to sit all day and do paperwork or trying to do too much house work in one day. I am most successful when I set firm limits on myself. As women we take on a lot and push ourselves to get it “done” IBerore mesh I was able to bike 120 miles a week, gym 5 days a week and run 3 mornings a week. This plus worked full time and raised two girls. It took me several years after mesh, to recognize I had to change my thinking.Those days are gone and that does not make me a failure. I choose to be a survivor and that has taken accepting and adjusting. I hope that no woman feels judged about their choices to manage. Much of my survival has come from the women on this site and not health care professionals. This sight is filled with compassion, sharing, and I don’t think anyone her has a desire to hurt others. I do urge women to explore options because our government is mandating changes in Opiate prescriptions. My intent is prevention. PEACE

    • Jane Akre says:

      Thank you for your encouraging words!

    • Still Standing says:

      Linda, you do not have to justify your pain or pain management to anyone. That comment to you about your use, of valium was unkind to put it nicely. I would love to correspond with you
      and k directly. It seems as if we have followed what we thought was best for our bodies. I have never condemned whatever way any woman finds relief from this nightmare but have continually encouraged women to prepare for a time that opiates will not be an option. Jane has my contact number. I think we could mutually support each other in positive ways. I hope we get a chance to visit in a less emotionally charged environment.

    • Kitty says:

      TODAY…the FDA just announced that flossing your teeth is not necessary!! Whoa!! Don’t believe everything u hear

  7. Kitty says:

    I believe moderation in all things…

  8. Linda says:

    I had my removal from Dr. Raz with reconstruction a year later. I was very optimistic about recover. Yet I continued to have lower back pain, swelling in the abdomen and my but checks are painful. Beyond that if I did not drink 2 capfuls of miralax daily I would not have a bowel movement. I read on this site regularly. I did start the inflammatory diet and I have found it very helful with the swelling and body aches. Plus so far I have lost 18 pounds. It did not take away the pain but I did notice improvement in abdominal swelling and aches. It came from this sight. I want to be able to enjoy more of my life so for a year I contemplate scheduling with Dr. Hibner to see if the back pain was prudenal nerve damage. It did not seem to be prudenal but the doctors indicated I continue to have chronic muscle spasms. They recommended trying the Valium suppositories and although new , I think it’s helping. The PRN Valium I took when I could not stand the pain anymore. The suppositories with 5mgs valium and Baclofin are daily. Prescription calls for 2 per day. I use 1 at night and so far I have been able to get off the laxative. I take what I learn here and try things. I appreciate the physicians that I have been placed in contact through this site and appreciative of the women that share their ideas. I think the women that are going through it have great ideas. Some work, some don’t but I don’t give up. All of us have similar and very different symptoms. I tried the myofascial massage and trigger point therapy and it made my symptoms more aggravated. Pleas keep sharing it seems we are doing very well taking care of our symptoms to the best of our ability. I had suggested Jane contact Dr. Hibner because it is expensive to go see him and have the MRI. If he can provide information about the suppositories then maybe primary care that you work with can order it . Of course it is a compounded prescription. most insurance does not cover it but to me it is worth the $80 bucks a month to avoid all the laxative, cramps and unpredictable need to go. I will post after 30 days if it continues to be positive. You know sometimes I feel muscle flutters/spasms in all lower areas but the day I had my exam I did not feel any and the doctor said they are intense and on going. That’s probably why I have not been able to have BM since putting the mesh in, even after removal. Who knows what we face, when or even why but we strive for the best of what we can have. Jane I trust your judgement as you have insight re: the people on the sight that are true and those who may be corporate. I am happy to talk and have my number given out to anyone you think it will be helpful to. If anyone is facing removal I am happy to share my experience. Peace to all

    • Jane Akre says:

      Awesome that the anti inflammatory diet worked for you. I believe it probably is a good diet because inflammation is tied to so many ailments, swelling, aches, arthritis…I’m going to follow it as well. Time to republish it here… The diet is from Still Standing and thank you! Love that everyone is learning from each other. Its very inspiring. What an incredible community!

    • Still Standing says:

      Linda, I am so glad the anti-inflammatory diet is working for you. I have followed it for about 10 months. When I go off of it, my abdomen swells and is painful and I get constipated. You might try adding in a product called Natural Calm+calcim. I order it from Amazon. I put 3 tsp in with the Miralax and Benefiber I use daily. Most adults are magnesium deficient. Magnesium contributes to digestive health and also is important for muscle relaxation. Deficiency can lead to muscle spasms. You might want to try to add that in. Magnesium can cause bloating and gas, so start low and work up to a level that makes you comfortable. Also, I take good probiotic daily. I have used the baclofen suppositories since soon after having the mesh. They are very helpful. My doctor changed up and put baclofen with ketamine in the compound. Just FYI: my docotr recommends using them during the day x2. He said that at night,your muscles are naturally relaxed when sleeping, so they dont have as much of an impact. If you are sleeping well, they may help more during the day. They can also be used rectally. I do the rectal route when I do the Estrace three times a week. My insurance company denied payment, but my doctor appealed and they agreed to pay part of the cost. If your insurance will pay, I recommend an additional food allergy panel. I developed some unusual food allergies since the mesh and avoiding these things as much as possible fine tunes the anti-inflammation a bit. Mine includes, in addition to the wheat, dairy, beef, pork, tomatoes, rice, oats and soy. No, I dont stay perfectly on point with these additional food items, but I stick to the no wheat, no dairy, allowing myself to be a bit naughty with the others occassionally. They become less and less tempting to me,though, because I know how eating the nono foods will make me feel. Keep posting about what you are figuring out. Every little small step we take to manage pain, such as diet and pacing activities, impacts how we experience pain each day. It takes a lot of tools.

  9. Linda says:

    Thanks still standing. I too would love to talk. It sounds like our symptoms are very similar. I have been on the diet for about 4 months. I already avoid all the dairy. I am doing a smoothy for breakfast but using the non dairy silk milk with no sugar. No breads. When I cheat I get swollen abdomen too. I am convinced it makes a difference. The weight loss is helpful too!

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