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".

@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?!

Jump to this post

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!

Liked by cb772

REPLY
@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!!!

Jump to this post

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.

REPLY
@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.

Jump to this post

@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.

REPLY
@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.

Jump to this post

@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 .

Liked by lorirenee1, Hank, cb772

REPLY
@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.

Jump to this post

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.

REPLY
@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!

Jump to this post

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.

REPLY
@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.

Jump to this post

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

REPLY

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.

REPLY

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

REPLY

Good plan. I think you'd be surprised at how many people never read the literature with their Rxs.

REPLY

Hi @cb772 I thought I'd take a moment to check in. It's been a few days since you last posted. How are you doing?

REPLY
@lioness

@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 .

Jump to this post

I've also tried many holistic treatments, but none worked very well. Walking & yoga are great if you can do them. Unfortunately, my pain & the long term effects of DIC prevent me from walking, let alone yoga. I was an independent, active (gym workouts, dancing, walking), confident woman in a career I loved. Now, I'm dependent, lack confidence, have no sense of self worth, etc. I believe, for my symptoms, it's all related to the DIC I suffered following my 3rd low back surgery. DIC is rare & only a small percentage survive. I guess that's why there aren't any doctors who have studied long term effects. I'd be happy to be a test subject for any doctor who wants to study it.

Liked by Hank, bustrbrwn22

REPLY

What is DIC? So sorry for all your pain. I am in a lot pain myself and I sympathize. Thank you.

Liked by cb772

REPLY
@cb772

I've also tried many holistic treatments, but none worked very well. Walking & yoga are great if you can do them. Unfortunately, my pain & the long term effects of DIC prevent me from walking, let alone yoga. I was an independent, active (gym workouts, dancing, walking), confident woman in a career I loved. Now, I'm dependent, lack confidence, have no sense of self worth, etc. I believe, for my symptoms, it's all related to the DIC I suffered following my 3rd low back surgery. DIC is rare & only a small percentage survive. I guess that's why there aren't any doctors who have studied long term effects. I'd be happy to be a test subject for any doctor who wants to study it.

Jump to this post

@cb772
You are in my thoughts dear. I am so so sorry you suffer so much. Life has dealt you a terrible hand. May I ask, do you find any solace in spirituality? I know that it is either there for a person or not. It can be a rock if you have it as your center. It does nothing for you if you do not have faith. And no one can give you faith, it's only found within. I feel great sadness when I read your posts. I know I am not the only one ever to say that if I had the power to remove pain from those like you I would do it immediately. Best, Hank

REPLY

@jesfactsmon Thank you for your response! I am a Christian and my faith is what I rely on daily. I'll admit that I have considered ending it all, but I really want to go to heaven and breaking one of 10 Commandments probably won't get me there. Again, thanks so much for being so compassionate.

Liked by Hank

REPLY
Please login or register to post a reply.