Tired of the fight for treatment/DIC & chronic pain

Posted by cb772 @cb772, Oct 7, 2020

Hello, all: Have any of you had an episode of D.I.C. following surgery or another trauma? It's a rare bleeding disorder that has a survival rate of around 15%. I experienced it immediately after my 3rd back surgery in 2007. Since so few people survive, the medical field knows very little about DIC or it's long-term effects. The after effects, plus several failed surgeries that left me with chronic pain in my back & painful neuropathy in both feet, have led to me living in a recliner or wheelchair. Nothing helps and at 67 years old, I'm ready to give up the battle. Doctors don't know how to help & they keep screwing around with my meds. My pain level stays at a 9+, but with 5 to 6 10mg tabs of Norco per day, muscle relaxants & 2 mg of Clonopin daily, the pain number goes down to 7 & I can handle that. In my area of SE Florida, there were pain clinics on every block in the mid 1980s for several years where you could show up & a doctor would ask a couple questions & prescribe whatever you asked for. This legal drug trade went on until the DEA forced the doors shut on thousands of pain clinics, many doctors lost their licenses & Walgreens pharmacies were nearly shut down & could not fill scripts for opioids or anxiety meds for many years. Today, they have very limited supplies & ridiculous restrictive rules on dispensing opioids. Pain clinics push useless (for me) shots & conservative non-opiod treatments. At 67, I should be able to get the meds I know work for me, but I can't. The anxiety & depression are overwhelming. I really don't care if it's dangerous to take Benzies & opioids together. I've taken them for years exactly as prescribed & was able to live life instead of just existing. The DIC has left me with slowed responses, stuttering, jello-like legs & body leading to many falls. I was laid up last year with a severely broken ankle & torn tendon requiring 2 surgeries. After 7 months in a non-weight bearing cast, I was able to start P.T. but 3 weeks later another fall broke all the bones on the top of the same foot & was back in a non-weight bearing boot for 4 months. This started on January 23rd, 2019 & lasted till November, 2019. I continue to have lots of falls & recently broke a bone near my little toe, but I didn't get treatment for it because, like I said, I'm tired of the battle & life. Thanks for "listening".

@scruffy1

@bustrbrwn22 thank you but no need to apologize. I just think we have to weigh our inconvenience against the loss of life because of opioids. I drive almost 1.5 hr. to my pain doc just to satisfy the laws about seeing patients quarterly to whom you are prescribing certain meds. We need to get people in pain their meds but we also need to have that war, IMO. I've been appealing to the DEA since my father needed pain meds. I knew the Administrator at the time and she assured me that monthly visits would never happen under her watch, but her watch expired.

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@scruffy1 totally agree. How did you start petitioning our “fighting the good fight”?

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@bustrbrwn22

@scruffy1 totally agree. How did you start petitioning our “fighting the good fight”?

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@bustrbrwn22 I knew and worked with the Administrator when she was an assistant U.S. Attorney and I was an investigator in her judicial district. Years later, after she held the Administrator position, I wrote to her with my concerns. I explained that my father needed pain meds but was unable to travel to a doctor every month as was proposed back then. She assured me that the proposal wasn't going to be passed. And, it wasn't… until a decade later. But, you don't need to know anyone to write to your Congressman or Senator or the head of DEA, FDA, etc.. And, encourage those here on this site, and others with similar problems, to also write. Hard copies, rather than emails, are more effective because you can't just delete a letter. Expect a reply, but don't expect a member of Congress to actually see what you write. Their staffers keep a tally of "for and "against" certain issues and give numeric updates as to the changes. And don't forget that many issues are State issues, so write to those representatives, also. You can post on Facebook or other social media and encourage people in your district to support it. Or, email a form letter and encourage people to copy and sign it and mail it. Or do all of those things. Remember, the #1 priority of someone in office is to be reelected to that office. Pressure them.

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@lorirenee1

@cb772 Carol, Incredible description of your illnesses here. Remarkable, almost unbearable to read. Just thinking of you, praying for you, and I have no idea what to say to you. Just that I get it. I know it. I feel it. Just so sorry. Lori Renee

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Lori, thank you so much! You're in my prayers, as well.

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@bustrbrwn22

@cb772 how can we do something about this crazy trend to eliminate benzo’s and pain medication? I’ve tried many substitutes for pain meds and benzo’s that either didn’t work or had intolerable side effects. We’ve got to be able to make our legal system understand those of us that don’t abuse the medication and really need it to have even a minimal quality of life. Help! How do we do it?!

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amen – they made me stop Lorazepam due to opioids – i was only taking .5 mg for many years and it still helped a lot. Yet in ER for severe shortness of breath and too high heart rate they gave me 2 mg and no problem!

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@scruffy1

I, too, am inconvenienced and also have to endure pain because corrupt Big Pharma, doctors, pharmacists, drug dealers and others have created an opioid epidemic in which 50,000 people a year, repeat, FIFTY THOUSAND young lives are lost each year. A "stupid drug war"? REALLY? I have a very close friend who lost a 32 year-old son to opioids. Balance your pain against parents who are burying their children!!!

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I lost my only sibling, my 40 yr old brother to opioids – BUT he was an addict – i am not and this Pain Management stuff is simply a mean scam to make some heartless rich people and corporations richer. I am now 80 and was thrown out of one that was full of people like me on crutches and canes and walkers, not young junkies. I became so depressed over my baby brother's suicide that i became disabled and had to end a 30+ year career that i loved. But I believe all of the genuinely in pain should have access to the meds we need without all the show and tell Rx bottles and expensive urine tests and co-pays. I had my first Spine surgery in 1982 and pain diagnoses in 1986 at another famous medical facility, about 8 other surgeries and i have to endure this BS along with constant unbearable pain.

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@treziesmom

I lost my only sibling, my 40 yr old brother to opioids – BUT he was an addict – i am not and this Pain Management stuff is simply a mean scam to make some heartless rich people and corporations richer. I am now 80 and was thrown out of one that was full of people like me on crutches and canes and walkers, not young junkies. I became so depressed over my baby brother's suicide that i became disabled and had to end a 30+ year career that i loved. But I believe all of the genuinely in pain should have access to the meds we need without all the show and tell Rx bottles and expensive urine tests and co-pays. I had my first Spine surgery in 1982 and pain diagnoses in 1986 at another famous medical facility, about 8 other surgeries and i have to endure this BS along with constant unbearable pain.

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@treziesmom , I'm so sorry about your brother. Thank you for your post. It's really ridiculous that people like us have to endure the mental torture of pain clinics, pee tests, uncaring doctors, etc. At age 67, I'm not looking for a high from opioids but I am looking for relief from 24/7 crippling pain.

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@treziesmom

I lost my only sibling, my 40 yr old brother to opioids – BUT he was an addict – i am not and this Pain Management stuff is simply a mean scam to make some heartless rich people and corporations richer. I am now 80 and was thrown out of one that was full of people like me on crutches and canes and walkers, not young junkies. I became so depressed over my baby brother's suicide that i became disabled and had to end a 30+ year career that i loved. But I believe all of the genuinely in pain should have access to the meds we need without all the show and tell Rx bottles and expensive urine tests and co-pays. I had my first Spine surgery in 1982 and pain diagnoses in 1986 at another famous medical facility, about 8 other surgeries and i have to endure this BS along with constant unbearable pain.

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@treziesmom Im so sorry for you loss . I loss my oldest and best advisor brother in 2013 It is a devastating feeling I know but you will get through it . I do alot of holistic health instead of relying on Dr,s and perscriptions altho as I age it is inevitable I guess. Most of the exercise, Tai Chi and walking outdoors keeps me sane .

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@treziesmom

I lost my only sibling, my 40 yr old brother to opioids – BUT he was an addict – i am not and this Pain Management stuff is simply a mean scam to make some heartless rich people and corporations richer. I am now 80 and was thrown out of one that was full of people like me on crutches and canes and walkers, not young junkies. I became so depressed over my baby brother's suicide that i became disabled and had to end a 30+ year career that i loved. But I believe all of the genuinely in pain should have access to the meds we need without all the show and tell Rx bottles and expensive urine tests and co-pays. I had my first Spine surgery in 1982 and pain diagnoses in 1986 at another famous medical facility, about 8 other surgeries and i have to endure this BS along with constant unbearable pain.

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I'm very sorry about your brother. I agree that those who are in pain should receive adequate help and that includes opioids. I resent the fact that the system has gone overboard about that kind of medication. If one has genuine pain that is helped by opioids the person should be able to be prescribed them without jumping through 1000 hoops. If one becomes physically habituated and wants to go off the meds for a while, it seems to me that tapering with a Dr's help would be acceptable. I doubt very much that the people in pain are trying to get high or addicted.

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@treziesmom

amen – they made me stop Lorazepam due to opioids – i was only taking .5 mg for many years and it still helped a lot. Yet in ER for severe shortness of breath and too high heart rate they gave me 2 mg and no problem!

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Personally, I am afraid to mix opioids and benzos. I have both and never cross hours with them. I don't know what a Dr would say about my dosages but combining them can cause severe respiratory depression that could lead to death. If I wake up in the night due to pain, I consciously choose which one to take–usually the benzo wins out since it works faster to help me to fall back to sleep.

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@ellens

Personally, I am afraid to mix opioids and benzos. I have both and never cross hours with them. I don't know what a Dr would say about my dosages but combining them can cause severe respiratory depression that could lead to death. If I wake up in the night due to pain, I consciously choose which one to take–usually the benzo wins out since it works faster to help me to fall back to sleep.

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@ellens I mixed meds once and passed out so I always now check Drugs.com for interactions on new meds I get

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Good. No Dr ever told me not to mix opioids and benzos. I read the literature with the Rxs and figured that out myself. Then, later I noticed the warning in the literature.

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@ellens From now on I always read literature if not Drugs.com

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