Think back to the Gun laws. Remember how some citizens were against taking guns away from the “people”? The reason being, that the “bad guys” will always have access to them and the “good guys” who are in need of protection; get killed in the meantime because their safety net, their weapons to fight against being robbed were taken away from them! Well, my friends, the same thing is happening now, this 2016; to “real pain patients” fighting against being “robbed” of their “safety net, their weapons” to fight against the chronic intractable pain, and nerve pain that “WE” live with day in and day out. Yes, I am one of those people suffering and trying to be a “pain warrior”. While I am fighting yet another battle to live maybe not “pain free”; but possibly with less pain and more living!
There are several of us, my fellow pain/health advocates and myself; who have been and are writing to anyone and everyone who will take the time to listen to our plea. All 50 states now have Proclamations and/or House Resolutions (in the state of Michigan, my HR is #267 from 2013) that explain CRPS and give us an “Awareness day/month” etc. They explain to the skeptical family members and the Physicians who have no idea what CRPS is all about. They give us substance to show to our families, Physicians, lawyers and WC case claims people. These Proclamations and my House Resolution #267 in Michigan, explain all about the horrible, burning, “on fire-like” pain of CRPS. They talk of the allodynia, or the extra over sensitivity to touch and the pain that the softest touch can bring about. But all of this means nothing if they, meaning whoever “they” are; including but not limited to: the government, the CDC, FDA, Physicians, Pharmacies (especially big chain ones) and/or all of the above, take away our means of lessening our REAL debilitating, horrific, burning, “fire-like” pain! We follow the rules, sign contracts with our pain Dr’s and urinate in a cup at the request of a Physician; all because we have to jump through hoops to now get what we need to try and live some semblance of a life. Most of us don’t even remember what that is anymore, actually! While on the other side of the spectrum, as usual, the people who don’t follow the rules, those who break laws and essentially don’t give a damned about anyone except themselves and getting their “fix” because they have a different disease called “addiction” and “they” ruin it for all of us.
Would these same agencies and officials take glasses away from people who’s eyesight is not good? Would they take a white cane from the blind woman who needs that cane to make sure she is seen so that she won’t get hit by a car? Would they take anti-depressants from the hopeless, or Insulin from a Diabetic? Is this what is going to start happening? Are they going to also make the Deaf or the Blind feel “guilty” for using other methods of reading or “speaking”, by limiting braille or American Sign Language? Are we going back to the days of “tying the hands of the Deaf behind their backs” so they would be forced to learn to speak a language that they are unable to hear? Well, I am Hearing Impaired now, due to a Motor Vehicle accident in 2002. I suffered an MTBI or Mild Traumatic Brain injury. I have nerve hearing loss in both ears “Moderate”. I have 2 hearing aids and is someone going to take those too? (Actually, they can have the hearing aids, I hate them and I hate the background noise! So if that would help the situation, they can take those away from me!)…Deaf people were once made to feel “bad or guilty” for using their own Naturally formed language called “ASL”. It is part of Deaf culture, yet they were punished for utilizing something that was very much needed for them to live any kind of life worth living.
The same is true today for those of us in Chronic pain, with nerve pain, Polyneuropathy and/or CRPS, “Complex Regional Pain Syndrome” and other painful illnesses. “They” are trying to make us feel like “criminals” and lower an already lowered self esteem in some of us. Many of us have been through the rigors of the Auto case claims adjusters, who have the power to take everything away with the swipe of a pen! Others have been through the hell of a W.C. case and Oh how they make these people feel like they really “wanted” to get this pain and be injured on the job and never be able to work again! It’s ruthless and tough out there today for people living with chronic pain illnesses, like me. I’m an advocate, a blogger and I have a couple of support groups that I am an administrator for. I try with all of my might to spread awareness, fund-raise, write to the people who can do something to help and talk to those who would help if they could.
But this year in 2016, it is going to continue to get worse unless we rally around and try to do something about this travesty! This year the new prescribing guidelines are getting more horrible. The Physicians who were once very good and capable at what they did and cared about people living with real and horrible chronic pain day in and day out; these same Dr’s are cowering and refusing to give medicine for pain where it is truly needed. Yet….once again..as I’ve said above; those who want it, and who are true “addicts” will be able to find a way to get what they need! While law abiding citizens, suffering daily, have no other means than trying to advocate for ourselves and continue to try and do what we can do…. in a calm, legal and respectful manner. We are not “addicts”! We are people who are suffering with a horrific daily pain and who are “dependent” upon a pill, a patch, a spray or a losenges; to get through our daily routines. Some of those “routines” involve mostly sitting in a “Lazy Boy chair” for many hours per day, trying to be as free from pain as possible because moving too much means more pain later! It is so sad when taking a shower is so painful, that it is very draining and the rest of the day is pretty much left to doing not much of anything else after taking care of basic needs.
We need someone to listen to us! Whether it is Pain News Network, National Pain Report, the CDC, FDA, a state Representative or a Federal representative. We need someone to help us; someone who care and who is understanding and knowledgeable in such matters. It is despicable that some pain Dr’s now are being forced to “push” spinal cord stimulator surgery or intrathecal pain pump surgeries on many more people than they would have in the past. Surgery has much higher risks of something bad or negative happening, than taking a pill; for crying out loud!! Really?? Are they, the Physicians who have committed to “Do No Harm”, going to be “pushing surgeries” now, so they won’t be scrutinized for passing out the medicine so desperately needed by the chronic pain; the REAL chronic pain population of America? Like I mentioned above, are these same Dr’s going to take away the much needed medications from their chronic pain sufferers? People with illnesses such as RSD/CRPS and other such horribly painful diseases? Will they then be taking the prosthetic leg from an amputee? If they did that, then that person without a leg of flesh and bones; would fall to the ground and not be able to stand up. Just like if they take away our medicine, we will be falling one by one and we’ll be unable to get up.
There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our GP’s and even tying the hands of our pain management Dr’s. The CDC, FDA, and other special groups truly think that they know more about pain and pain management, when they have never studied such things? They are making it all about some big and fake “war on prescription drugs”! This is some kind of smokescreen for either saving money or wanting to rid society of the less productive members! They aren’t even letting someone go home from the emergency room anymore with a few pills to get them through until they can be seen by a pain specialist. They refuse to give Opioids to anyone anymore at an emergency room setting. Too many people went there for the wrong reasons and they somehow “faked out” the Physicians and nurses and now we, the true pain patients of these times; are suffering because of the “bad guys” who faked out the ER Docs, or the addicts who went to several Dr’s and Pharmacies and ruined everything for all of us! My poor relative tore his sternum and had to go to the ER, thinking he was having a heart attack. That kind of pain is acute, granted; but it is very very painful! Yet he came home with only something to “knock him out”; a sedative, tranquilizer. But he was not given anything to help his horrible acute pain at home. He was sent home after it was found that it was not his heart, yet a torn sternum muscle feels very painful, I’ve heard! Luckily within a few weeks, his pain will be all gone. Unlike my pain which will be with me for my lifetime. But just a year ago when another relative had to go to the ER for stomach pains, he was found to have Diverticulitis and given a class II pain medication to take at home for his pain, until he could get in to see the specialist. Now when that same scenario happens today, we will get sent home with nothing except NSAID’s and tranquilizers! In my own opinion, the tranquilizer is worse because you could get hurt at work or going someplace etc…It is much less safe than giving a few Opioids to get through until you can get an appointment with a specialist.
Well, I say “Pick on the real criminals”, not the “weak or the ill chronic pain sufferers”! I feel afraid and “bullied”, even though I’ve not experienced most of this yet. I pray that I never do. I have experienced enough issues with my Dr. of 12 years leaving me and his entire practice after having written several too many pain prescriptions and padding his own pockets! But what he did was still not my fault! I did nothing wrong! I am a lay person who did what my Dr. told me to do to alleviate my CRPS pain, Chiari I pain and the pain of multiple herniated/bulging discs, RA and OA etc. I never wanted to take any of these meds. I never smoked, drank or took any drugs; not ever! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me. (you can read about this in my prior blog posts). I had this happen to me this past year and when I tried to go and see the pain Dr. who originally saw me for several years following the car accident, he said that he “didn’t want any part of that other medical office’s mess”. I guess that was referring to me as a “mess” that he didn’t want to deal with! How rude and inconsiderate of him! I am a real person with feelings and so much pain, that some days I don’t know how I will make it through.
I’ve had the hardest time trying to find a new general Dr. to guide me and watch over me with my history of chronic pain and dealing with full body “systemic” CRPS now. I’ve had really crude things said to me by a so-called professional physician! Insinuating that I could go to an “addiction pain specialist”. WHAT for? Why? I am not “addicted”! Again, I say, I am a chronic pain sufferer/warrior who has so many real and true pain diagnosis’ and I needed a “pain management specialist”! Which, thank goodness and thank God, I did find this past Summer!
It’s again, very sad that these agencies are truly “pushing” surgery upon people instead of a simple pill that could help. Surgery is much more invasive, painful and not to mention the high cost! OHHHH I get it now…maybe that’s it after all??? They get more money from surgeries!! Hmmmm…..???
Well, I’ve also read that they are taking almost all pain medications away from anyone who doesn’t have Cancer pain. But who are “they” to say that one pain is worse or better than another, unless they’ve experienced both kinds? My cousin had Cancer and she felt sorry for me and did really well with the chemotherapy and such. No, it was not a “picnic” of course it was still horrible. But she feels that my long term, burning, “on fire” pain of CRPS, is much worse to handle than what she even went through with her Cancer! Can you imagine that?
The agencies are trying to also push exercise and healthy eating habits, along with PT and “behavioral therapy” as an alternative to “pills” to help pain. They are saying that the goal in all of this is to stop the overdoses and the prescription drug abuse. Well, I say to that and to them: “A person can only take the medication given to them by their Dr. and if the Dr. is a good one, he or she will only prescribe the amount needed. Then why take it away if the patient is doing everything right ? If I am doing what I am told and only taking what I am allowed to take, then why take it away from me when it gives me some kind of a little bit of so called “life”? There are only bad Dr’s and bad people who are hurting the rest of us. The innocents should not suffer because of the crimes of a few!
The main issue here also, is that these new guidelines are not medically sound or proven (according to Pain News Network). The CDC proclaimed that they used a panel of different members from several different medical backgrounds for the grounds of these changes in prescribing or rather now non-prescribing of Opioids. Not allowing any pain medications to help alleviate real and true chronic, long term pain for patients dealing with chronic long term horrible pain day in and day out! It is very scary to even Pain advocates and patients alike that these new guidelines will be taking away any kind of life we once had. Those “people” tried to say that the pain meds stop working for everyone. that everyone gets addicted and gets Hyperalgesia and that the meds stop working for everyone. This way they are “lumping” together “everyone” and we are all individuals. My pain has been managed pretty well, with some ups and downs but I never ask for more. I do what I’m asked to do and I do what I’m told to do. I have to make my life work around my pain and my meds and my lowered medications.
Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and people who live in the “Pain world”. They also found that many of the people who put these new rules together have a monetary gain in such matters! The government and these agencies are practicing inhumane treatment towards real and true pain patients. They allowed insurance agencies and others who would gain from these guidelines to make decisions for us.
The things that are occurring are illogical and inconsiderate; let alone inhumane! I have been on a certain dosage of medications since first my car accident in 2002, when I suffered multiple injuries and surgeries (10). Then I had a stroke and a heart attack in 2005 and 2006. Then later in 2007, I suffered after a foot surgery and ended up with CRPS in my right foot, which then traveled to my left foot, up to both knees. Then when I had a pacemaker surgery in 2013, my pectoral muscle was found to have worn a hole right thru it, from my 1st pacemaker. They had to rebuild my whole pectoral muscle. It was a very traumatic even for my already pained, fragile body. I ended up with full body/systemic CRPS. I have it everywhere. Taking a shower for me is like bullets pelting me and I need my husband to shelter me from the water while I try to get clean. Believe me, it’s nothing weird or kinky! It’s the only way I can keep my body somewhat clean now days. I have been on the same dosage of meds for a very long time now. I never ask for more and on my “bad days” I just stay in and don’t do anything much at all. But please don’t take that away from me because I’ll never be able to do anything at all, not even will I have my 2 hours daily, if they try to stop everything and take it all away even from the responsible ones who do exactly as they are asked.
One Physician wrote in the Pain Network News, that he has had patients on higher doses of Opioids for over 20 years and they have some semblance of a life. He even agrees that taking these meds from us and these other people like us who’ve been on long term dosages and who will most likely have to stay on them for their lifetime; is cruel and inhumane treatment! He said that they are “forcing us into suffering, sickness and possibly even death!” All because a group of “people” decided that my medicine and these other people’s medicines are suddenly claiming the lives of “too many” and stating that our pain medications are “dangerous”. Well, they are not if they are prescribed by the right Dr and maintained by the right Dr. and as long as the patient follows all of the rules and does what is right and good!
They tried to also scream “HYPERALGESIA” to everyone on Opioids for any length of time! If it is working and has been, then how can it be “Hyperalgesia”? If they really think that Hyperalgesia exists and is a problem with high or low dose Opioids, then this one Dr. who did not give his name, said that “we must remove all intrathecal Opioid pumps because these devices deliver a MEQ directly to the CNS receptors that is far in excess of any dosage we can achieve by peripheral administration.”(Painnewsnetwork.org)
Please use your voice and be heard! Help yourselves, help your sisters, mothers, fathers and brothers. Please lets everyone who’s suffering with long term chronic horrible debilitating pain, take a stand and rally around one another. We need to form advocacy groups that will work together for the common good! Not “my group” and “your group” but we need an “our group” that will help us and speak up for us and with us and take a stand against all of the knuckleheads who just want to make a profit and don’t care if we live a fuller or lesser life. They don’t even care if we actually live or die because if we are no longer a “productive member of society” in the eyes of our government, CDC, FDA and the others, then we will not be heard nor will get the help that we deserve. Please write to your State representatives, and to our Federal agencies, House of representatives….anyone who will hear us and not just let it be words to the wind! Please let us stick together and not allow ourselves to be treated so hurtfully and inhumanely for no common good whatsoever. But only for the lies!
Thank you for reading…if you need me to find a place for you to write, or if you want more information, please ask me in the comments. I want to take a stand and really help to do something about this awful mess. It’s just not right because I just know that they would never take Coumadin or Warfarin (blood thinners) from someone like me with Atrial fibrillation. They wouldn’t take Insulin from a Diabetic either. Then don’t let them take pain medications from legitimate long term chronic pain sufferers. Please don’t be quiet! Let’s help each other and let’s take a stand against this bad situation; this life altering and life taking situation!
To me and many other pain advocates and pain patients alike, it feels like this “war on Opioids” is not for us, but against us! Many people who have health insurance now and especially Obamacare, have very high deductibles in the $5,000.00 range! That is crazy ludicrous! They cannot afford the treatments or the medications. What can we do? We have the FDA and the DEA and the CDC all trying to make it seem as though all pain patients are criminals as well as all Dr’s prescribing any pain meds are also criminals or “drug dealers”. Do you know that I read someplace, and I cannot think of where it was at this moment, but when I do find it, I will mark it down here; but less than 5% of Opioid taking patients are “addicted”. We may be “dependent” but we are not “addicted” to the pain meds. They don’t make us “happy” or ‘high”; they merely lessen our pain so we can have some kind of small life outside of our pain. The dept. of justice and all of these places are targeting our pain management Dr’s and making them jump through hoops to help us at all. Therefore comes the pushing to get the surgeries for the pumps and the stimulators, so they don’t have to “deal with” the medications or the Feds! It’s not fair to intrude, or better said, “invade” our bodies with metal and cords and electricity etc. Giving us more “scars” and more pain flares and more infections to worry about. Leave us alone and go after the real criminals, please won’t you? #waronpainpatients #painedlivesmatter