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".

@erikas

@cb772 You are in constant pain, experiencing significant mobility issues, and not receiving needed medical equipment. Due to this you are feeling hopeless. At this time do you feel you can keep yourself safe?

It's important that you receive needed assistance. I'm wondering if you are connected with any disability services, social workers, or county workers at this time?

Jump to this post

@erikas . Thank you for your post. I'm safe as long as stay seated in my recliner. I have Medicaid social worker who checks on me monthly. I finally have a psychiatrist & therapist I like, but their company will probably be dropping my medicate company next month. I've contacted AARP, my county Council on Aging & Florida State resources but they don't have much to offer. I've been trying to get a motorized wheelchair for 2 years but my PC Dr can't seem to submit a proper RX for one. I'm fortunate that my best friend/brother (not related to me) lives with me, shops, cooks, etc for me, but he works so I'm alone during the day & he's stressed/short temper lately. I know he loves me but he's only 47 & could leave anytime he wants. I need to stay in our home because our fur & non-fur babies are my lifelines.

Liked by lorirenee1, Hank

REPLY
@lorirenee1

@cb772 Reading about you is pure tragedy. Is there no community service where you live? You must be able to get at least, a wheel chair. There must be a place in your community to get one; a church, temple, village hall? Do you have anyone advocating for you, helping you out? Get another doctor who knows how to fill out a prescription for a wheel chair. It is nonsense that he cannot. I have told you about Kratom. It really significantly reduces all kinds of pain. Please, please, please, personally message me to know more. Your life is intolerable. LoriRenee1

Jump to this post

@lorirenee1 , thank you. I looked into Kratom but the description of it & possible interaction with my other meds, and the price, scared me away. If I could walk without falling down things would be better. So far, multiple neuro tests haven't revealed why my legs turn to jello & my body jerks & spasms.

Liked by lorirenee1

REPLY
@cb772

@lorirenee1 , thank you. I looked into Kratom but the description of it & possible interaction with my other meds, and the price, scared me away. If I could walk without falling down things would be better. So far, multiple neuro tests haven't revealed why my legs turn to jello & my body jerks & spasms.

Jump to this post

@cb772 So sorry for what you are enduring. Don't even know what else to say……. Lori

REPLY

I have tried just about everything for spinal and hip pain including Ketamine nasal spray. Nothing is working! I did take one Percoset I had left over from some dental work and that helped A LOT, but I doubt anyone one will give me a script for that. I have been reading about Cymbalta for this type of pain. Does anyone have any opinion about this subject? Thank you.

REPLY
@cb772

@erikas . Thank you for your post. I'm safe as long as stay seated in my recliner. I have Medicaid social worker who checks on me monthly. I finally have a psychiatrist & therapist I like, but their company will probably be dropping my medicate company next month. I've contacted AARP, my county Council on Aging & Florida State resources but they don't have much to offer. I've been trying to get a motorized wheelchair for 2 years but my PC Dr can't seem to submit a proper RX for one. I'm fortunate that my best friend/brother (not related to me) lives with me, shops, cooks, etc for me, but he works so I'm alone during the day & he's stressed/short temper lately. I know he loves me but he's only 47 & could leave anytime he wants. I need to stay in our home because our fur & non-fur babies are my lifelines.

Jump to this post

@cb772 It's good you have a social worker, psychiatrist, therapist, friend/brother, and your fur babies. It sounds like you need a motorized wheelchair right away. How frustrating to not receive the equipment you need due to an error with your doctor's orders. What sort of action have you taken to advocate for the doctor's order to be filed correctly so you can get your motorized wheelchair?

REPLY
@wheelerma

I have tried just about everything for spinal and hip pain including Ketamine nasal spray. Nothing is working! I did take one Percoset I had left over from some dental work and that helped A LOT, but I doubt anyone one will give me a script for that. I have been reading about Cymbalta for this type of pain. Does anyone have any opinion about this subject? Thank you.

Jump to this post

@wheelerma : I tried Cymbals a few times, but it didn't help. That doesn't mean it wouldn't help you. If you go thru a pain clinic, you'd probably be able to get pain meds. They would first evaluate you & may try injections first, but if nothing helps most will prescribe pain meds. Good luck.

REPLY

Thank you so much!

REPLY
Please login or register to post a reply.