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Kelsey Mohring (@kelseydm)

Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 43 minutes ago | Replies (6118)

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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Replies to "Yes if anyone has ideas of how we can get the attention of higher ups... Please..."

How to get attention of higher ups? They want their money saved, so follow the money. I just sent email to my Congressional Representative about HR4063 which will be a law to stop opioids in VA medical facilities except for cancer and short term use. There is a vote coming on this bill so I am doing all I can to oppose it. Also write to the letters to the editor of your newspaper especially if you see an article that is negative toward opioids and pain.

I usually agree opioids are not good, but it is all we have that works right now. I usually push for funding for an objective method of measuring an individuals pain and for something to replace opioids that works. Also write to state officials. Check on web internet to find out about new laws or regulations being proposed. Any new federal regulation is suppose to have a period for comment from interested parties which is your chance to give your views.

Remember you are an expert at pain and you have knowledge that doctors and others do not have usually. Good luck and get involved. 19lin

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Already trying. But if you put your name out there you can lose your Dr.
The feds are getting crazy and we are the ones who suffer. To many people
are selling there meds an they get in the wrong hands and people die. My
Drs office is looking like a factory for people to get drugs and I’m
getting worried that they will be shut down. Still lost and trying!! briansr

Good info 19lin! Thanks I will also send letters to some reps. Thank you! Sharonmay7

Your ( our ) best bet is to notify our state representatives and/ or our congressman and ask them what the best way to get our voices heard. There is a site you can go to called Change.com. It is a site that anyone for any reason can start a petition online. I have seen some that have been very successful. Try these 3 ideas and I am encouraging others as well to do the same. Maybe at least it can be a starting place. I will see if I can find anything else that may help. Good luck to us.

@sharonmay7, just for info, there are three kinds of medicines I try to stay away from. First, any kind of painkiller, especially opioids. I get into a psychiatric idiocy, especially from strong opioids. Then after a while, they don’t work anyway. Second, antiseptics such as ampycillin (SP?). I have had a steady infection some place in my body for about 60 years. It is probably from amyloid involvement with the ankylosing spondilitis in my spine. Third, anything that seems to cost too much. I have to take insulin, but by careful diet and exercise, I have worked into a minimal regime. I have several cancers in my body (prostate, bladder, kidney, liver, lung, thyroid, blood, amyloid, lymph, spleen, etc. Now my doc thinks I have cancer (protein deposit) in my brain, so I have now had a MRI to check it. But in any case, I still think it is most appropriate to stay away from most medicines. I know I have only a short time to go, but at 76, that’s OK.

Thx you to @sharonmay7. With spinal issues,arthritis and Fibromyalgia, I rely on Advil and Norco as needed for unrelenting
Pain as needed, and topical arthris creams with my Ortho and PC full support. I hope I am misunderstanding that opioids are trying to be banned. I do hear of stories of addiction and the huge use of oxycodone and oxy cotton. BTW, are these last two the same drug? I am approaching my pain with as much life corrective life style as I can.

Sharon I couldn’t agree more.

I absolutely had gotten to the point where they were hurting me. I’m living proof of it. And I am in no joke I was very serious pain patient. Many many broken bones many many surgeries. Two serious accidents that have affected my neck my back my lower back and my left shoulder. I’ve been on pain medication in various doses for years and they’ve been changed to try to be more effective. You do eventually, maybe not everyone, but most people hit a brick wall. They no longer work, you have to take more and more, you feel like a zombie and they affect your G.I. tract to the point where I wasn’t able to even eat a meal anymore I would throw it up. Please people don’t discounts how you would feel if you are on pain pills every single day and multiple types, how you would feel if you got off alarms. Believe it or not my pain is less and much more tolerable. It’s there I know it, But I’m trying to present a positive picture here not a negative one. I’m finding ways to deal with this but I didn’t even know existed or had barely tried. And when I did try them I was on so much medication that they didn’t stand a chance of working. I know where my injuries are I can still feel them, but they are less intense and their pain and are now being controlled by injections. I’m just trying to be helpful.

@jenapower

Thank you for your input. I’ve been taking Morphine sulfate contin for a few years, and I just had to live with the pain that it didn’t mute. I slowly tapered off it at one point to see if it was really helping. I went back on it after 2 or 3 weeks because the pain was intolerable. I did end up with a lower dosage, which just makes it tolerable most of the time. (I have peripheral neuropathy.)

I had a spinal cord stimulator implanted 4 weeks ago, and this past Saturday, I finally got significant relief, and by today, my feet didn’t hurt much at all. I’ve been seeing therapists for 13 years for depression, PTSD and anxiety. I have been feeling my mood improve over the past few days. PTL!

Jim

Hi Jim, the pain medicine roller coaster is definitely a double edge sword. I was in so much pain I didn’t think I could live for the last three weeks when I got off of it. I ended up back in the emergency room because my blood pressure was so high from the pain. I told them when I went in I didn’t want any narcotics, to do whatever they could to relieve the pain. The pain was so bad I’d been throwing, with the highest blood pressure I’ve ever seen on me. Somehow they fixed it without narcotics and got my blood pressure back to normal which is usually really low. I’ve got a whole host of things from badly broken shoulder that’s had five surgeries getting it back together, discs in my neck that are completely messed up, facets in the center of my back like hurt like crazy, and I have a perineural cyst in my spinal cord at S1. I understand that it can be depressing.

Amazingly after three weeks the pain just broke. I can’t even explain it. It’s still there, I feel it in the places that have been injured, but the intensity on its own went down by at least 60% to 70%. These are all things that show up on MRIs, and I just had another one today. That’s why I was looking into the stem cell therapy and all that specific injections into the sites, really don’t want surgery.

I did called the Mayo Clinic information line today to find out if they used stem cells for orthopedic injuries and they do. The person’s supposed to call me back tomorrow who can give me the information about specifics. I’ll post it at that point. I guess I’m hoping beyond hope that something like that could be helpful without drugs and without surgery. Jennifer

I’d also been diagnosed by three doctors, including out at a Cedar Sinai in Los Angeles, that I had fibromyalgia. Somehow I just never really believed it. All those symptoms are gone, just gone. One has to wonder what those meds do.

Sharon may: I am Marield65, God bless you. You are still so young, and have gone through so much. Do you ever complain and feel cheated ? How do you stay up? What are the answers? I have been through so many surgeries and pain and I have a low immune system and now feel like crap with some kind of bug but it is very hard for me to stay positive when all I want to do is live a peaceful life, not this “why me ” life. I feel so selfish at times. Then I say “why not me”. I am 72. Do you have any words of wisdom you would like to give us people who live in chronic pain when you, your self lives like us, in chronic pain?

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