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".

@wheelerma

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

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@wheelerma DIC stands for Disseminated Intravascular Coagulation. Mine was the result of a 3rd back surgery in 2007. I'm so sorry you're in pain.

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@cb772

@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.

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@cb772
Carol, one question I don't know if you have spoken of before, but have you already tried any of the alternative pain aids such as cannabis and kratom? Just wondering if they might bring some relief to you, at least cut your hideously high pain level a few points.

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@cb772

@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.

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I developed adhesive arachnoiditis in 2012 as a result of L5-S1 laminectomy, which is inflammation of the spinal meninges that progresses to nerve clumping and scarring. (Usually caused by surgery or injections). Very severe pain and disability. Next surgeon did bogus tethered cord surgery and stabilization. My pelvis tilted, had to have hip replacement, which was done wrong and resulted in hip instability. Took two years to find honest ortho who would diagnose and do revision. I fell many times, which caused AA to be worse. Developed severe spinal stenosis during the period which also made AA worse. Medical field tries to pretend arachnoiditis isn't real since it is iatrogenic in most cases, therefore, I wasn't given diagnosis until 2018 after having surgery for stenosis. Losing more muscles in lower extremities day by day, getting more and more difficult to walk. Bladder, bowel issues, chronic fatigue, immune system dysfunction, headaches due to spinal fluid flow obstruction, 75% reduced kidney function, very severe anal pain that is exacerbated by movement. Opioids no longer help, I think bc spinal stenosis made scarring and clumping worse. Pain pump doesn't help either. One neurosurgeon said to take drug holiday. Pain doctor wouldn't do a trial of ziconotide or prescribe ketorolac and dexamethasone to reduce inflammation. I explained time and again that the high dose opioids weren't helping, but clinic kept giving me same meds. I finally tapered off pills and patches and asked doctor to put saline in pump. He would only reduce pump meds from 8 mg to 1 mg. Said he didn't believe in tolerance and hyperalgesia, which I definitely had. Three days after this appt I received letter stating they had decided on dismissal. Guess AA was too much of a problem for this lazy doctor. Looking into umbilical stem cells out of country, but there is no guarantee. Had to drive three hours one way to find neurosurgeon who manages Flowonix pumps. Flowonix pumps are relatively uncommon but my doctor didn't give me a choice between Medtronics bc he is friends with the Flowonix rep. Neurosurgeon is reducing meds VERY VERY slowly. He originally talked like he would put saline in pump very soon, but it's been four months now. Money thing, maybe, but I want opioids out of my system bc they provide ZERO relief. Most nights I can't sleep until 3-4 AM because of anal burning/throbbing. I think about suicide a lot, which is another reason I need to be opioid free. It is always in the back of my mind though that I will end up in hell if I kill myself, and it bothers me that so many people kill themselves for stupid unnecessary reasons. Early on when pain meds still worked I took 1 mg benzos. This helped as much as pain meds and I don't know why they make such a big deal about them if the patient is alert and breathing normally. Maybe they are afraid of being sued by family is something happened. I have noticed a pattern in my pain management records, with the exception of the first one where I went for the first five years. They seem to begin early on fabricating documentation to make me sound like a problem patient in case they need something to use against me later on. Every word is twisted and things are put in quotation marks that I did not say. It is terrible to be dependent upon these evil people for anything, let alone pain relief.

Hope you find some treatment that helps.

Liked by lioness, lorirenee1, Hank

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@jelizabeth

I developed adhesive arachnoiditis in 2012 as a result of L5-S1 laminectomy, which is inflammation of the spinal meninges that progresses to nerve clumping and scarring. (Usually caused by surgery or injections). Very severe pain and disability. Next surgeon did bogus tethered cord surgery and stabilization. My pelvis tilted, had to have hip replacement, which was done wrong and resulted in hip instability. Took two years to find honest ortho who would diagnose and do revision. I fell many times, which caused AA to be worse. Developed severe spinal stenosis during the period which also made AA worse. Medical field tries to pretend arachnoiditis isn't real since it is iatrogenic in most cases, therefore, I wasn't given diagnosis until 2018 after having surgery for stenosis. Losing more muscles in lower extremities day by day, getting more and more difficult to walk. Bladder, bowel issues, chronic fatigue, immune system dysfunction, headaches due to spinal fluid flow obstruction, 75% reduced kidney function, very severe anal pain that is exacerbated by movement. Opioids no longer help, I think bc spinal stenosis made scarring and clumping worse. Pain pump doesn't help either. One neurosurgeon said to take drug holiday. Pain doctor wouldn't do a trial of ziconotide or prescribe ketorolac and dexamethasone to reduce inflammation. I explained time and again that the high dose opioids weren't helping, but clinic kept giving me same meds. I finally tapered off pills and patches and asked doctor to put saline in pump. He would only reduce pump meds from 8 mg to 1 mg. Said he didn't believe in tolerance and hyperalgesia, which I definitely had. Three days after this appt I received letter stating they had decided on dismissal. Guess AA was too much of a problem for this lazy doctor. Looking into umbilical stem cells out of country, but there is no guarantee. Had to drive three hours one way to find neurosurgeon who manages Flowonix pumps. Flowonix pumps are relatively uncommon but my doctor didn't give me a choice between Medtronics bc he is friends with the Flowonix rep. Neurosurgeon is reducing meds VERY VERY slowly. He originally talked like he would put saline in pump very soon, but it's been four months now. Money thing, maybe, but I want opioids out of my system bc they provide ZERO relief. Most nights I can't sleep until 3-4 AM because of anal burning/throbbing. I think about suicide a lot, which is another reason I need to be opioid free. It is always in the back of my mind though that I will end up in hell if I kill myself, and it bothers me that so many people kill themselves for stupid unnecessary reasons. Early on when pain meds still worked I took 1 mg benzos. This helped as much as pain meds and I don't know why they make such a big deal about them if the patient is alert and breathing normally. Maybe they are afraid of being sued by family is something happened. I have noticed a pattern in my pain management records, with the exception of the first one where I went for the first five years. They seem to begin early on fabricating documentation to make me sound like a problem patient in case they need something to use against me later on. Every word is twisted and things are put in quotation marks that I did not say. It is terrible to be dependent upon these evil people for anything, let alone pain relief.

Hope you find some treatment that helps.

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@jelizabeth
First just let me say that I am sorry for your terrible condition and the never ending ordeal that this is in your life. Your attitude toward suicide is indicative of believing in God and an afterlife. Hopefully you can derive some solace from faith in a better life after this one.

Due to government control there is a whole sense of mistrust built up between the patient and the practitioner. First, the arachnoiditis is, as you say, iatrogenic, meaning caused by your surgery itself (I had to look that one up), so the fear that they might be questioned or sued for their mistake leads them to put you in a bad light in their notes about you as a cover for later if they need it so they can use it against you if needed as you say. Any mistrust which develops between doctor and patient, as in any relationship, is very destructive.

The bottom line as I see it is that issues such as yours are as mysterious to them as to you. They are shooting in the dark and hoping to hit something, but what they end up hitting might just as easily make things worse as better. We of course all want help for our medical problems, but it's a total crap shoot as to whether you are going to be helped or made worse. God forbid a person develops an issue that is as cryptic and mysterious as nerve disease. When it comes to nerves, the medical establishment is bordering on complete ignorance. You may as well put yourself in the hands of someone who prescribes putting leaches on your body to bleed you (a practice commonly done hundreds of years ago). In modern times the equivalent to blood letting is drugs. Something to do to say they are doing something in many cases.

I'm sorry you have had such a rough go of it. Hank

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@jesfactsmon

@jelizabeth
First just let me say that I am sorry for your terrible condition and the never ending ordeal that this is in your life. Your attitude toward suicide is indicative of believing in God and an afterlife. Hopefully you can derive some solace from faith in a better life after this one.

Due to government control there is a whole sense of mistrust built up between the patient and the practitioner. First, the arachnoiditis is, as you say, iatrogenic, meaning caused by your surgery itself (I had to look that one up), so the fear that they might be questioned or sued for their mistake leads them to put you in a bad light in their notes about you as a cover for later if they need it so they can use it against you if needed as you say. Any mistrust which develops between doctor and patient, as in any relationship, is very destructive.

The bottom line as I see it is that issues such as yours are as mysterious to them as to you. They are shooting in the dark and hoping to hit something, but what they end up hitting might just as easily make things worse as better. We of course all want help for our medical problems, but it's a total crap shoot as to whether you are going to be helped or made worse. God forbid a person develops an issue that is as cryptic and mysterious as nerve disease. When it comes to nerves, the medical establishment is bordering on complete ignorance. You may as well put yourself in the hands of someone who prescribes putting leaches on your body to bleed you (a practice commonly done hundreds of years ago). In modern times the equivalent to blood letting is drugs. Something to do to say they are doing something in many cases.

I'm sorry you have had such a rough go of it. Hank

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

Liked by Hank

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@jesfactsmon

@jelizabeth
First just let me say that I am sorry for your terrible condition and the never ending ordeal that this is in your life. Your attitude toward suicide is indicative of believing in God and an afterlife. Hopefully you can derive some solace from faith in a better life after this one.

Due to government control there is a whole sense of mistrust built up between the patient and the practitioner. First, the arachnoiditis is, as you say, iatrogenic, meaning caused by your surgery itself (I had to look that one up), so the fear that they might be questioned or sued for their mistake leads them to put you in a bad light in their notes about you as a cover for later if they need it so they can use it against you if needed as you say. Any mistrust which develops between doctor and patient, as in any relationship, is very destructive.

The bottom line as I see it is that issues such as yours are as mysterious to them as to you. They are shooting in the dark and hoping to hit something, but what they end up hitting might just as easily make things worse as better. We of course all want help for our medical problems, but it's a total crap shoot as to whether you are going to be helped or made worse. God forbid a person develops an issue that is as cryptic and mysterious as nerve disease. When it comes to nerves, the medical establishment is bordering on complete ignorance. You may as well put yourself in the hands of someone who prescribes putting leaches on your body to bleed you (a practice commonly done hundreds of years ago). In modern times the equivalent to blood letting is drugs. Something to do to say they are doing something in many cases.

I'm sorry you have had such a rough go of it. Hank

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Thanks for your kind words.

Liked by Hank

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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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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.

Liked by Hank

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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.

Liked by lorirenee1, Hank

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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

Liked by cb772

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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.

Liked by Hank

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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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