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".

@principessa

Me too. Life is hard. Death shouldn't have to be. Assisted suicide should be a right for those suffering chronically

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I totally agree. My worst fear is to end up in a nursing home suffering for years and being mistreated by the staff.

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@principessa

Me too. Life is hard. Death shouldn't have to be. Assisted suicide should be a right for those suffering chronically

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Hi @principessa, welcome to Mayo Clinic Connect. Life with unrelenting pain and chronic health conditions is hard. What chronic illness do you live with?

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Words matter when talking about end of life. Stigma weighs heavily on the term "assisted suicide." I prefer medically assisted death. Other terms that explain well include
– death with dignity
– physician-assisted death
– physician-assisted dying
– aid in dying
– physician aid in dying
– medical aid in dying

Terms that mislead or stigmatize include:
– assisted suicide
– doctor-assisted suicide
– physician-assisted suicide
– (active) euthanasia

These articles help explain further:
– Why medically assisted dying is not suicide https://www.dyingwithdignity.ca/assisted_dying_is_not_suicide
– What's the difference between assisted suicide and euthanasia? https://www.bbc.com/news/uk-47158287

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I haven't posted anything since early October. Apparently no one has experienced DIC (Disseminated Intravascular Dissemination). Doctors don't care to investigate and/or educate themselves about the long term affects. I'd gladly be a guinea pig for them but haven't had any takers on my offer. I'm done with all of it. Life sucks due to 24/7 pain and limbs that wobble & jerk. My primary care doc can't seem to adequately fill out a prescription for a wheel chair & I can't afford one. So, I'll sit in my recliner and fade away. Sorry about my pity party. Feeling hopeless in Florida.

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@cb772

I haven't posted anything since early October. Apparently no one has experienced DIC (Disseminated Intravascular Dissemination). Doctors don't care to investigate and/or educate themselves about the long term affects. I'd gladly be a guinea pig for them but haven't had any takers on my offer. I'm done with all of it. Life sucks due to 24/7 pain and limbs that wobble & jerk. My primary care doc can't seem to adequately fill out a prescription for a wheel chair & I can't afford one. So, I'll sit in my recliner and fade away. Sorry about my pity party. Feeling hopeless in Florida.

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@cb772 i can’t help with the pain but I can listen. Feel free to vent when you want if it helps even a little. I have no where near the pain you do and there are many days I cannot leave bed because of pain and our opiate-free and benzo-free society. I have dark thoughts many times but the few people I have met on this forum sometimes lift me up enough for even 5 minutes to keep fighting for cures or at least things to reduce pain and anxiety.

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@bustrbrwn22

@cb772 i can’t help with the pain but I can listen. Feel free to vent when you want if it helps even a little. I have no where near the pain you do and there are many days I cannot leave bed because of pain and our opiate-free and benzo-free society. I have dark thoughts many times but the few people I have met on this forum sometimes lift me up enough for even 5 minutes to keep fighting for cures or at least things to reduce pain and anxiety.

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@bustrbrwn22 Thank you.

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@bustrbrwn22

@cb772 i can’t help with the pain but I can listen. Feel free to vent when you want if it helps even a little. I have no where near the pain you do and there are many days I cannot leave bed because of pain and our opiate-free and benzo-free society. I have dark thoughts many times but the few people I have met on this forum sometimes lift me up enough for even 5 minutes to keep fighting for cures or at least things to reduce pain and anxiety.

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@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

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@cb772

I haven't posted anything since early October. Apparently no one has experienced DIC (Disseminated Intravascular Dissemination). Doctors don't care to investigate and/or educate themselves about the long term affects. I'd gladly be a guinea pig for them but haven't had any takers on my offer. I'm done with all of it. Life sucks due to 24/7 pain and limbs that wobble & jerk. My primary care doc can't seem to adequately fill out a prescription for a wheel chair & I can't afford one. So, I'll sit in my recliner and fade away. Sorry about my pity party. Feeling hopeless in Florida.

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cb772 I am so sorry to hear this. I just want to cry understanding your frustration with the medical fied and having the severe symptoms you have. I don't know what your medical issues are, but I definitely fee your frustration and depression. There has to be someone out there that can hear you and help you. Have you checked with agencies other than this inadequate doctor about a wheelchair. There are organizations that help people and can get them a wheel chair. I think the Elks is one of the programs that may be able to help. Also the local Health Department. I wish there was something personally I could do. Right now I offer prayers and positive thoughts. Please keep us advised of your case. Love also sent to you.

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@cb772

I haven't posted anything since early October. Apparently no one has experienced DIC (Disseminated Intravascular Dissemination). Doctors don't care to investigate and/or educate themselves about the long term affects. I'd gladly be a guinea pig for them but haven't had any takers on my offer. I'm done with all of it. Life sucks due to 24/7 pain and limbs that wobble & jerk. My primary care doc can't seem to adequately fill out a prescription for a wheel chair & I can't afford one. So, I'll sit in my recliner and fade away. Sorry about my pity party. Feeling hopeless in Florida.

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@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?

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@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?

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@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.

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@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

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@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.

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@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.

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

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