I have never been so frustrated in my life as I am right now with the health care system.
I, too. Have been trying to get a wheelchair fitted to me since October 2013, when pressure sores on my soles necessitated being in a chair much of the time. Medicare thinks my current chair--56lbs and 2" too wide, no dump, no vibration mitigation--is sufficient, and that I don't need braces AND a chair. Without braces, I cannot do standing transfer, and would probably not be able to continue to live independently. Guess they don't care if I work or not! All doctors are being slapped down for prescribing pain meds, and drugs have been reclassified to prevent "abuse". Result: illegal drug trade flourishing, people in pain non-functional.
acrobatinmydreams said, "I feel like I have just returned from bargaining at a used car lot....it just feels dirty to not be able to trust people who are supposed to have your health and best interest at heart. " That about captures it...
That is just amazing that they feel they can disrupt what quality of life you/we have left. I have had more than my share of heated debates with United Healthcare and I am sure there are more to come in the future.
I am hoping and praying that I get some answers today. Pain management seems to want to spend as little time with me as possible so this appt may be just to get a referral to someone that actually knows what they are doing. I have never been so frustrated in my life as I am right now with the health care system.
Me too@jeff1967, in 26 years, I have never been treated like this. One appointment after another and they wonder why there is so much Medicare fraud??? These doctors are maxing the payments out to get the most they can.
I have made 15 calls today and several to Craig hospital. They have over 200 doctors on their referral list and none of them will treat pain. I did call and found one in Golden Colorado and another in Denver. So I am going to try both....why not?
wavewolf, I have never ever had a doctor brave enough to say I have central pain but that is what it is.
Those shocks sound real familiar Jeff. I had them for a long time. Lyrica is the only thing I've found that helps, knocks out 90% of them. My Phatbraces still rock, but walking on the outside edges of my feet has taken it's toll. I'm trying to make the summer and have started the process of having a tendon transfer surgery. Yippeee
Good luck Jeff, I hope they can stop those shocks, torture sucks.
Good luck. Lyrica never worked for me except made me loopy and I don't need help with that lol
What works for you acrobatinmydreams? How long were you on Lyrica? I think you may have been flagged as a drug seeker, you sound like one, and I'm just being honest, not looking to insult you. This may be my future and I'm bummed. I just experienced my first taste from the doctor I've been seeing. I wasn't asking for meds, but I realized he really had no clue what living with this is really like. The more you work to be your best seems to work against you. You look fine you must be fine. Your not whining about pain, so you must not have any.
To be even more honest the Doctors hate dealing with patients who have scoured the internet and decide they know more than them. Whether you actually know more or not, they hate that attitude and don't want to work with you. They don't want to take a patient who has a history of chronic complaining. There is no shortage of patients, why deal with a problem case.
Good luck. Lyrica never worked for me except made me loopy and I don't need help with that lol
What works for you acrobatinmydreams? How long were you on Lyrica? I think you may have been flagged as a drug seeker, you sound like one, and I'm just being honest, not looking to insult you. This may be my future and I'm bummed. I just experienced my first taste from the doctor I've been seeing. I wasn't asking for meds, but I realized he really had no clue what living with this is really like. The more you work to be your best seems to work against you. You look fine you must be fine. Your not whining about pain, so you must not have any.
To be even more honest the Doctors hate dealing with patients who have scoured the internet and decide they know more than them. Whether you actually know more or not, they hate that attitude and don't want to work with you. They don't want to take a patient who has a history of chronic complaining. There is no shortage of patients, why deal with a problem case.
Nothing works for me. I took Lyrica in addition to topamax and gabapentin for about 5 years and now my teeth are rotting. Side effect of the dry mouth the medication caused. I decided to delete my original comment because you are only into this five years. Funny......you can judge me without knowing what I have done in the last 26 years to deal with this injury.
You can be the guinea pig but I am no longer going to be and your first taste is just the beginning. Sorry I am not a ray of sunshine but chronic pain has taken its toll in my ability to deal with people like you that assume we are all drug seekers.
I have never been so frustrated in my life as I am right now with the health care system.
I, too. Have been trying to get a wheelchair fitted to me since October 2013, when pressure sores on my soles necessitated being in a chair much of the time. Medicare thinks my current chair--56lbs and 2" too wide, no dump, no vibration mitigation--is sufficient, and that I don't need braces AND a chair. Without braces, I cannot do standing transfer, and would probably not be able to continue to live independently. Guess they don't care if I work or not! All doctors are being slapped down for prescribing pain meds, and drugs have been reclassified to prevent "abuse". Result: illegal drug trade flourishing, people in pain non-functional.
acrobatinmydreams said, "I feel like I have just returned from bargaining at a used car lot....it just feels dirty to not be able to trust people who are supposed to have your health and best interest at heart. " That about captures it...
I haven't used a chair wavewolf, but I was just fitted for my first one in March. I think the trick is to order the chair then order the braces or that is what they said at Craig. Otherwise Medicare denies. I am a bit different because I am transitioning to a chair from walking all these years. I guess they figure if paraplegics transfer without braces then you should be able to. It is not like you are going to give up walking just because they give you a chair. It is frustrating for sure.
I know what you are going through and understand completely. I visit pain management once a month because that is what is required to get my meds. I lived for 18 years with an SCI that I wouldn't even go to the doctor because I thought I could tough it out and didn't want to be classified as a pill head. Well after about a year of excruciating pain, sleeping no more than two hours at a time and still getting up and going to work every single day, I said enough is enough, I just can't take it any longer. I take Norco 10/325 regularly, Soma as needed, Cymbalta daily and Flomax (its a man thing lol) daily. I don't care what people say or think of me because they do not live inside of my body. Is my pain eliminated? No but it does give me some form of relief at times. I've tried many things that the doctor suggested, not what I suggested, and this is what has been best for me.
I'm like you, I wouldn't wish this on my worst enemy and I am not going to live a miserable life just because of what someone else thinks. Things suck enough as it is (bowel/bladder) so sign of relief, even if it is minimal is what I will do.
I know what you are going through and understand completely. I visit pain management once a month because that is what is required to get my meds. I lived for 18 years with an SCI that I wouldn't even go to the doctor because I thought I could tough it out and didn't want to be classified as a pill head. Well after about a year of excruciating pain, sleeping no more than two hours at a time and still getting up and going to work every single day, I said enough is enough, I just can't take it any longer. I take Norco 10/325 regularly, Soma as needed, Cymbalta daily and Flomax (its a man thing lol) daily. I don't care what people say or think of me because they do not live inside of my body. Is my pain eliminated? No but it does give me some form of relief at times. I've tried many things that the doctor suggested, not what I suggested, and this is what has been best for me.
I'm like you, I wouldn't wish this on my worst enemy and I am not going to live a miserable life just because of what someone else thinks. Things suck enough as it is (bowel/bladder) so sign of relief, even if it is minimal is what I will do.
I am having a bad day so I deleted my comment. I get so tired of people telling me I sound like a drug seeker when I take Cymbalta, 5 mg Oxcodone, and a blood pressure pill because my pain has made my blood pressure high. I have said no to more drugs than I have said yes too. We should all be worried about not being able to get treatment because of abusers.
I made it 17 years lol so we must have similar injuries indeed.
I am glad you get it because sometimes it just helps to know someone else does. I am not getting any relief all now and I don't feel like it is right to burden my doctor with the liability to write those prescriptions even though she does it for me now.
I just want some relief so I can enjoy a little bit of life. I know nothing is going to take it all away but just a little is all I want. I took Enablex and bladder drugs too but my spasms don't happen any longer. They are probably bound in scar tissue.
I just get so tired of this merry go round then to be called a drug seeker by someone who is experiencing the same injury as me is disheartening.
I think we all get frustrated and say things we wouldn't normally. We are a group of people that live with something with no cure in sight. We are limited in our mobility, bowel/bladder issues that can be humiliating (had to leave work and go clean up today) and then throw in pain that is literally miserable on top of this and we are going to seek whatever it takes to give us some sort of normalcy. The true drug addicts are the reason that we are treated like pill heads when all we want is to live a pain free life.
Forums like this have been such a huge help to me personally. I have learned things that have probably helped me more than the person posting would ever know. When I am having one of those down days I can get on here and just read and realize I am not going through this alone. I have no one except my wife to talk to but she admits that she just doesn't understand and that hurts her almost as much as it does seeing me go through what I do.
We may not all live a pain free life but at least we have each other here to vent to. I am always here to lend an ear. I am on Facebook as well and if anyone wants to friend me there and chat sometime, by all means do so. I want to help anyone that I can in any way that I can.
acrobatinmydreams,im sorry that you are having a bad day. Pain is so difficult to deal with and there is often no respite with SCI pain. Pain meds are a necessary evil.
Everyone is just trying to find their own way with this..the best they can, I hope your day improves or tomorrow is a better day..
I, too. Have been trying to get a wheelchair fitted to me since October 2013, when pressure sores on my soles necessitated being in a chair much of the time. Medicare thinks my current chair--56lbs and 2" too wide, no dump, no vibration mitigation--is sufficient, and that I don't need braces AND a chair. Without braces, I cannot do standing transfer, and would probably not be able to continue to live independently. Guess they don't care if I work or not! All doctors are being slapped down for prescribing pain meds, and drugs have been reclassified to prevent "abuse". Result: illegal drug trade flourishing, people in pain non-functional.
acrobatinmydreams said, "I feel like I have just returned from bargaining at a used car lot....it just feels dirty to not be able to trust people who are supposed to have your health and best interest at heart. " That about captures it...
I haven't used a chair wavewolf, but I was just fitted for my first one in March. I think the trick is to order the chair then order the braces or that is what they said at Craig. Otherwise Medicare denies. I am a bit different because I am transitioning to a chair from walking all these years. I guess they figure if paraplegics transfer without braces then you should be able to. It is not like you are going to give up walking just because they give you a chair. It is frustrating for sure.
I think you are right about ordering chair and then braces. My first chair was "standard issue", totally didn't fit me, and I was unable to use it because it would have further damaged my joints already in bad shape from RA. After first several months when I could not even stand, I tried to walk without braces, and damaged my knees and ankles further. Got braces about a year after paralysis, and they enabled me to walk maximally--Feb 2010. Tried to get chair when I had walked too much and developed pressure sores on my soles--October 2013. If I had not found a used chair online to buy, I would have been housebound, probably winding up in nursing care hell hole because I could not stand for more than a minute or so, could not walk. Braces are still needed where I am living now, because it is not accessible. To remain independent, must walk some. Chair is needed to limit walking to what will not cause further damage to joints, and to help manage pain.
You got in just before the Medicare rules changed, so were very fortunate. Now is the most restrictive it ever has been--certain chairs cannot be ordered unless you pay ALL of the expense.
The issue with pain meds is totally skewed. Yes, there are people abusing them. Doctors have probably been too lax in considering who really needs them, feeding the possibility of getting Rx and selling what you don't use. You probably have been labeled a drug seeker, but that is not reflective of the truth! This is how doctors get rid of us...and many who have wisely used pain meds for years are being denied now, and even denied other care because of label. We have to fight for ourselves, because we have the most to gain or lose. My problem is finding any pain med I can tolerate better than pain. My doctors do not want to start me on any pain med, just on principle--that is nuts!
Even the VA is under pressure to cut down on pain meds. A vet friend of mine did not get his Rx on time, and went into withdrawal. When he finally was able to get to see a doctor at VA, he was told, "Oh, you already went through withdrawal, so I'll just not renew your Rx. I was going to wean you off this med anyway!" This is someone with chronic and progressive pain from injuries, has deteriorating condition. Still works full-time! He has been able to sustain employment, pay taxes, and have a decent quality of life because the pain was managed well, and it took years to find the right protocols. Now, all of a sudden, he is supposed to suck it up and suffer? His health and quality of life will plummet if he is in so much pain that he is unable to work. What is going on?! I agree, our nation is is a shambles--on many levels.
Post by kilg0retr0ut on Jun 27, 2015 9:48:02 GMT -8
That deal with the V.A.and you friend is really upsetting Wavewolf. The whole crackdown on meds scares me. I really can't function without lyrica and Afo's. I can get down to really low doses, but it's pitiful. It's like other people have the power to say what level of uncomfortable you are going to live in, without knowing what it feels like.
Acrobat, I didn't say you were a drug seeker. I said you sounded like one and it seems that will be said about all of us that can't function without them. If I had to deal with this 26yrs. I may be a tad bitter myself.
I don't disagree that many things in our country are messed up, but is bad as you feel it is would you rather live somewhere else? How long has our shambled country payed for most of you medical needs? 26yrs.? Our system is far from perfect, but your lucky you were born here.
Post by acrobatinmydreams on Jun 27, 2015 9:57:19 GMT -8
Yes pain treatment is skewed. The only thing about the "labeling" is I have every medical record of every appointment in the last five years and the majority going back 26 years and none have "drug seeking behavior" in them even in the early years when I was still trying to figure things out with paralysis . By law, they cannot withhold medical records or their contents so if that were the case, I would know it. I have seen many records where the patients ARE labeled and they speak of chronic complaining etc but mine are just not the case. When you have an appointment the doctor must describe your demeanor etc it is part of the Medicare law that lays out what contents are required to be in medical records. Not just Medicare patients but Medicare and Federal Rules and Regulations lay out the exact contents that a medical record is required to have in order to legally bill for that visit. Drug seeking behavior originates in the ER and an electronic record is required so that physicians can rule out drug seekers going to multiple hospitals in a state. I have seen this system at work and it flashes a warning on screen. I have not been to the ER in a decade or more.
My problem is I am well researched in my condition. Now 26 years ago and without the access to medical journals, I was not. I am a strong advocate and I expect a doctor to present the pros and cons of a treatment etc. Now that is documented in my Medical Records but it has always been positive. A physician is not required to keep your medical records positive and I have seen 1000's of charts of drug seeking behavior documentation.
I worked with doctors at the many jobs I had in the 17 years I was in medical records that I worked so I understand their thinking. To get them to do their documentation took some creativeness on my part because their brains just worked on such a higher level.
You are right in that we have to fight for ourselves. I vent here so it is in no way representative of a doctor's appointment when I have one. I am looking for a quality physician not one who just placates that latest fad which happens to be "interventional pain medicine". We are not candidates because the stimulation devices have the potential to cause even more pain in us than we already experience. I once tried to electrical stimulation braces 10 or so years ago and I have never ever been in such excruciating pain. I am very restrictive and resist "new" miracle cures. Surely you all have seen all the lawsuits regarding Medical devices and medications. There is a reason I do my research.
Round about 2007, the Federal Government started doing audits on treatment and outcomes. In my Medical Staff meetings, the majority of older doctors were planning their exit strategies from practicing medicine because the government was literally stepping and telling them how to treat conditions. So to understand my rants you have to understand where I am coming from. They could see this coming back then and ask any doctor today and they will tell how stringent and strict things have gotten. They don't practice medicine anymore. They just follow the rules and hope to make some money to live.
The lobbyists and profits really dictate what treatments you will get so the opoid pharmaceuticals will stand up to this eventually. Its about money and nothing else. How do you think they got Medicare to cover stimulation devices. I can remember a time when Medicare would not cover an Epidural Steroid Injection into the spine. Epidurals are the exact reason there is a market for stimulation devices as the multiple steroid injections cause scar tissue which causes neuropathic pain. However, very few "interventional treatment physicians" will mention this. It is in the medical journals.
Being informed is not a bad thing and if that turns a doctor off, then I do not need him because trust is part of the patient/physician relationship. If you DON'T have trust you have nothing. When there is money involved I do not trust because YOU and I are the potential guinea pigs.
I am now paying a price for all the Lyrica, gabapentin, Topamax, and all the bladder medicines I took early on in the first 5-10 years of injury. They were pushed on us spinal cord injuries, however their efficacy is short lived. Read the possible side effects....dry mouth causes cavities. Ask any SCI injured that took them in the 80's and 90's? We are all having teeth and osteoporosis problems. In hindsight I would not have taken them nor advocated anyone to take them. When Dr Serafin experimented doing my muscle flap surgery in the early 90's, he did not tell me that when they removed my abdomius rectus muscle from my right side would cause weakness in my gait nor joint problems in my hips. I just wanted save my foot. I am paying for it today as I am aging.
Today is a new day and I am not as bothered by someone who doesn't know me telling me I have drug seeking behavior. I have been suicidal with pain so to prevent that from happening again I will go to any length to get the treatment I need. If it takes multiple visits to find a quality doctor then so be it.
I did the same thing jeff1967, I was so careful in the 90's to not be a pill seeker. I could have gotten them back then as that was the days that Pain was the fifth vital sign in hospital treatment. But I did not seek them out. The Joint Commission in those days put a lot of weight on the treatment of pain and suffering. So they handed drugs out freely according to protocols.
That deal with the V.A.and you friend is really upsetting Wavewolf. The whole crackdown on meds scares me. I really can't function without lyrica and Afo's. I can get down to really low doses, but it's pitiful. It's like other people have the power to say what level of uncomfortable you are going to live in, without knowing what it feels like.
Acrobat, I didn't say you were a drug seeker. I said you sounded like one and it seems that will be said about all of us that can't function without them. If I had to deal with this 26yrs. I may be a tad bitter myself.
I don't disagree that many things in our country are messed up, but is bad as you feel it is would you rather live somewhere else? How long has our shambled country payed for most of you medical needs? 26yrs.? Our system is far from perfect, but your lucky you were born here.
Actually several countries treat their spinal cord injured much better than the US. So you defend the system all you want. Your lack of knowledge will come back to bite you.
I have pondered living somewhere else actually and have over 200 friends here in the US and in other countries who all have spinal cord injuries. Every country has their issues but suffering is where I draw the line. When it starts creating a barrier to those of us that need the medicine for legitimate reasons, then we have some huge issues.
Our shambled country paid for my medical needs via MEDICARE for 9 of these 26 years. The 17 years I worked, I had commercial insurance because I had access to it with my job.
You have a lot to learn about your condition and medical treatment in the US in general so please don't patronize me because I have traveled the road you are only beginning to travel. It is a scary one indeed. Do some googling on the behavior of rats exposed to long term chronic neuropathy.
You make an awful lot of assumptions being that you do not know me. I am not bitter. I am in pain and there is a difference. If you are still around, we will see how 20 more years changes you and then we can compare notes. Your views will be skewed.