It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Chronic Pain Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 09-07-2012, 08:56 AM   #1
Newbie
(male)
 
Join Date: Oct 2011
Location: melbourne florida
Posts: 1
minebushwacker1 HB User
has anyone found a reason to live on through incredible pain?

Hello, I am new to this board, but have been under the care of pain management doctors for over 20 years. I was an HVAV technician and began to have problems due to an auto accident in 1991 where I received a lateral fracture accross C3. After a year of therapy 3x week my insurance company MMI neurosurgeon told me that I would always have limited range of motion and severe pain in my neck and refered me to a Pain management specialist.
I began PM treatment in 1992 with narcotics, epidurals, facet blocks, radio frequency lesioning, iontophoreisis, tens unit, massage therapy, galvonic stimulator, and narcotic pain relievers. I did obtain partial relief from the various procedures until my insurance ran out and I could no longer continue treatments so I just started relying on the PM doctor and meds. Then I fell out of an attic while on an AC job and ruptured the disc at t11, which caused incredible pain so my PM increased my meds. Then I had another auto accident in 2003 which resulted in a severe herniation of the L5 disc which, according the my last 5 MRI's, was displaced enough to position the L4 nerve root in the postion of the L5 disc. Additionally, the L2 and L3 discs were mildly herniated. Then the last 2 MRI's showed a very large osteophyte complex which is protruding into the cervical spinal canal and causing mild flattening of the spinal cord. I have seen 4 different neurosurgeons and 2 ortopedic surgeons and was told that I would need three different spinal operations with the Cervical procedure being extremely risky and better than a 50% chance of paralysis. The Thoracic procedure is not as risky. The Lumbar procedure would need L5 laminectomy and titanium rods, cage, plates, screws etc. through the entire Lumbar spine to stabalize the spiine. Again, this procedure is very risky. I have been on SSDI since 2004 and the only insurance I have is Medicare which many surgeons don't take and the ones who do have told me that the co-payments would have to be cash up front in case of a negative result. The cash amount for just the Lumbar procedure is $20,000. I haven't worked since 2003 so there is no way I can pay this amount and it will only allow 1 procedure and I will still have the pain from the Cervical and Thoracic spine. The only way I have been able to deal with the intense constant pain is with meds because it is all I can afford. If anyone knows how I can get all of these surgeries without haveing to pay the thousands of dollars in co-pays I would be very grateful. I cannot obtain a supplemental insurance plan because I am only 61 and in Florida you must be 65 on Medicare before you can get a secondary insurance policy. This is why I opened this post with the question about why should anyone keep on living through this intense pain without any hope to stop it. It has become so difficult to obtain my pain meds in Florida that I had to change my address to my daughter's home and find an out of state doctor which means I have to drive 1200 miles round trip every month to see my doctor and get my meds. The trip wipes me out I can't move for days each time I take the trip. I know there are problems with abuse of these meds it is all over the news, but the parties in the medical profession seem to have given up on persons like myself who have legitimate medical problems and either need these medications or need a cost effective way to obtain needed surgeries. I really don't want the surgeries, but at this point it is either surgery or ending the pain. Are there others out there in this position?

 
Reply With Quote
The following 4 users give hugs of support to: minebushwacker1
bostonteach (09-07-2012), dee088 (09-07-2012), ladylaura777 (09-08-2012), sandiemas (09-20-2012)
Sponsors Lightbulb
   
Old 09-07-2012, 01:42 PM   #2
Junior Member
(male)
 
Join Date: Sep 2012
Location: Boston, MA
Posts: 17
bostonteach HB User
Re: has anyone found a reason to live on through incredible pain?

I feel that your situation, like many others, is being treated unfairly by the doctors in your area. If you could find a good doctor who understands pain and would give you appropriate pain medication so you can at least start to be able to think more clearly without so much pain.
Is there any way you can move out of Florida?

Living with chronic pain is often fruitless and mind numbingly depressing/isolating. I just discovered this board too and it has helped to touch base with others going through the same thing.

Peace and love my friend,
Jay

 
Reply With Quote
Old 09-08-2012, 08:37 PM   #3
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: United States
Posts: 1,412
nochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB User
Re: has anyone found a reason to live on through incredible pain?

what hurts more? The neck pain or the back pain? Are you able to sleep with all this pain you have?
It is also frustrating to go to doctors to get pain meds. Why not finding a cure for this thing called chronic pain and let those doctors leave us alone.

I know how you feel. I have also been in a car accident and suffer from SEVERE pain in my neck. It never goes away.
Oh, don't you hate cars? wish they have never invented those. It caused so many people to suffer from chronic pain than any other type of injury, did you know?
Car accidents involve soft tissue damage-----It destorys tendons, ligaments and muscles for life. I say for life, cause doctors cannot fix it.

I can tell you that living with chronic pain is merely and existence, it's not really "living".
It is suffering for no reason at all.

Meanwhile I suggest, why not taking muscles muscle relaxants? It hurts mostly cause of the muscles. Take valium or clonazepam. See how it works for you.

You just can't imagine how many people are living today with severe chronic pain caused by this "invention" called cars.

 
Reply With Quote
Old 09-09-2012, 05:14 PM   #4
Newbie
(male)
 
Join Date: Jul 2012
Location: Hamilton, Ontario, Canad
Posts: 5
wschippr HB User
Re: has anyone found a reason to live on through incredible pain?

I find it really hard to carry out day to day tasks and even the thought of moving on in the future is daunting. I agree with previous comments about not really living just existing, maybe others have better experiences than I do.

 
Reply With Quote
The Following User Says Thank You to wschippr For This Useful Post:
Nittany168 (09-24-2012)
Old 09-20-2012, 10:53 AM   #5
Senior Veteran
(male)
 
Join Date: Jun 2003
Posts: 3,465
Shoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB User
Re: has anyone found a reason to live on through incredible pain?

Thats a tough one, Ive been there , when you cant stand for more than 10 minutes without your legs shaking and breaking a sweat that soaks your hair.
I had my first back surgery in 93 and by 99 I was fused from L1-S1, That fusion failed too and ive since broken pieces of that hardware.

The best thing I did was a find a tru PM facility or group of docs. There is no one way to treat pain and their isn't a single doc that can do it all so I like having an anesthesiiologist, neurologist and Physiatrist in the group, They all have their place and it's the 3 specialties that actually have a board certification process in PM. Asking your shrink to prescribe more than what I was ever given post op from any surgery isn't really realistic. He isn't trained and their are certainly other meds that would compliment opiates that he isn't used too or trained to use. Finding the right doctor or clinic/group is the most important thing.

For me the orals made living that way tolerable but like others said, it's really not living. I was fortunate enough to be offered a pump and it's been succesful at relieving as much pain as the orals could without the cognative side efects. A pump is considered a success if it relieves 50% of the pain. It's realy not that much different than post op or acute pain where the meds are just their to make it tolerable, not to be pain free the day, week or month after back surgery. I spent 3 years on orals and i was a high dose patient and still disabled, after a couple pump trials and the implant it took 6 months and about 16 adjustments to get the pump dose right. about 1/100th of what I was taking orally, but I knew my doc wouldn't leave me hanging and would continue to work untill we were getting max benefit. My head was clear enough to decide I didn't want to live that way anymore and I had the motivation to start excercising and doing all the spine stabilization stuff you learned in PT and I lost 35 lbs and returned to work part time under the SSD ticket to work program, Ive been working part time for almost 7 years now and it hasn't cost me my benefits.

You are allowed to try and get out of the house. I'm not able to go back the next day and work 2 days in a row but I do work 2 or 3 days a week even if the shift is only 4 hours, it whips my tail but just gettting out is so valuable and meanigful I gladly pay the price. Their is just nothing more physically and emotionally unhealthy than living a sedentary life. I honestly think getting out of the house is what saved my sanity and stopped me from asking the Why question every day.

The meds dont stop screws or rods from shifting and dropping me to my knees but they give me enough relief that I can get distracted doing something else and not think about the pain. When your home alone or with children, It's hard not to think about it the pain unless your mentally involved in something that distracts you. I do think the right balance of meds is crucial and people shouldn't suffer, but goals have to be realistic Their are specialist for it and if your not seeing one you can't really blame a shrink or GP for not wanting to practice something he doesn't have the training for.

Excercising so that you feel like your doing your part and everything you can to improve your condition is another biggie or how I cope. I feell guilty if I dont excercise and at least try to improve my situation.

I dont think it has to be a mere existence if done properly with the right mind set, the goal of meds should be to get you moving again, the job of the Pm specialist is to see if that's possible. The actual moving part is entirely the patients part. To many people are content to be medicated and home bound where it's hard to distinguish the actual benefit of using meds. I think we do have a responsability to show our docs that if he does his job we will make an effort to improve our own situation.

I know I am fortunate in that the CP thing didn't cost me my marriage and living with my child. It very easily could have. But with family around, laying around in bed complaining of pain just gets old after years so I dont see much point in comlaining any longer. It is what it is. I will rate my pain levels for my doc, But my wife and kid dont need to know how bad or how desperate I may feel and I dont want them seeing me knod out on the couch. Sure I could get more relief at a higher dose but it would cost me as far as ability to function and contribute and do my share around the house and at work.. Shrinks and PM psychologist certainly have their place but again, one doc can't do it all.

Having the pump implanted was great financially as far as not having to pay or deal with the problems with filling written scripts on day 31 every month. Instead it cost me 85 bucks to have a nurse come and refill my pump at my house every 90 days. My docs are agressive when it comes to treating pain but they couldn't be much tighter when it comes to rules, pills counts, apts, UA's etc etc. But at some point the patient has to recognize when enough relief is enough. If the meds impair you and prevent you from living they can become a bad thing.

I also had a younger brother that developed a back problem, then a drug problem, Mixed them with alcohol and took his own life. Experiencing and seeing the pain it caused others pretty much took that option away.

A big part really does fall on the patient, I get your undermedicated, but what you do once you have a tolerable level is just as important as how your doc responds when you develop tolerance to a dose that once worked.

I still worry about the future, Fortunately the option of not coping isn't an option. I have certainly learned we can live with a great deal more pain then we ever imagined. Having family and friends also make it easier to see the pros outweigh the negative aspects. Basically the best way to deal with something like this that isn't going to get better is to focus on all the good things in your life and make an effort to find or do anything that distracts you from the pain.The glass is either half full or half empty, it's up to each person how they see things. Something that also put things in a different light was developing a blood condition where I produce too many red cells and my Krit level is too high. The only treatment is to drain a pint of blood every 3-4 weeks. When I first discovered the problem I gave a pint every week for 10 weeks. I have to see a hemotolgist and mine is also an Oncologist, So I have gotten to meet and know many peple at the Cancer treatment place. I get my blood drained sitting next to people with 30 years on me fighting for their life and enduring chemo and radiation. Why do they do it? Likely because giving up just isn't an option in their mind. That's really the only difference between those that want to make the most of what they have left and those that cant see the good in what they have left.

I'm not the expert and everyone has to find what is right for them, t's just what I have experienced dealing with pain for the last 19 years. The prognosis for allCP patients is poor, my back isn't going to get better and the longer things go on the more changes to the brain occur, I read a pretty discouraging article about it the other day. I remeber when it used to bother me when people said it could always be worse, But years of living with it and seeing others in much worse shape or that can't walk or have cancer, does put things in perpective. I'm only 46 and have had 2 heart atacks prior to having the pump implanted from living with constant pain and high BP. I really dont seee me living to be an old man but I want to enjoy the things I can while I still can.
Good luck, Dave

Last edited by Shoreline; 09-20-2012 at 09:32 PM. Reason: spelling

 
Reply With Quote
Old 09-20-2012, 09:27 PM   #6
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: United States
Posts: 1,412
nochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB User
Re: has anyone found a reason to live on through incredible pain?

Only do a neck or back surgery if your doctors(not one, ask for second and even third opinion)tells you that if you won't do it you will be sitting on a wheelchair.

You didn't respond here. The only thing I can tell you is that I commiserate with you.
The hell with those cars, since their invention they destroyed so many people's lives.
Perhaps now they make them better for whiplash which is the most common injury in car accident. It mostly causes scar tissue damage for life-tendons, ligaments and muscles are all damaged-----for life. Whiplash has been around for years-----since they last invented trains-------then cars-------and they still cannot treat it.

You see, most of your severe pain is caused by a car accidents----severe neck pain-----just for one whiplash. Who needs it. They should have kept those carriages just like at that time of Lincoln and that it. It JUST DOES NOT WORTH IT getting quickly to a place you want and ending suffering from CHRONIC NECK PAIN.(Sory, I am not sure about back)
But NECK pain is enough----SOFT TISSUE-MUSCULAR DAMAGE- and the doctor DARED telling me I will suffer most of my life. He said it smiling, like he knew a lot about it.
Other doctors told me, it will go away......Actually most doctors told me it will go away.
I have bulging disks but the pain is not located in the bulging disks area. It is far away from there. I am pretty sure today it is a muscle pain.

7 years like that and I tell you, it is merely an existence, not living.

 
Reply With Quote
Old 09-21-2012, 12:25 PM   #7
Senior Veteran
(female)
 
BB07's Avatar
 
Join Date: Feb 2010
Location: Lower Alabama
Posts: 979
BB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB User
Re: has anyone found a reason to live on through incredible pain?

ok now-first off you need to get a grip-i hear and emphaticaly know what you aregooingthrough-trust me, most on this if not all of us on this forum face similar if not worse ; alot of difficulty dealing/living/coping with serious debilitating24/7 pain.

i do think you should think twice about more surgery-i have consulted my share of neurosurgeons in hope they could eliminate my pain. one consult with a very kind neurosurgeon told me after pouring over allof my mri's, ct scans, etc. etc.-that he believedthat i should only consider more surgery as a LAST RESORT-ie. if i lost controlof bowel n bladder function-he said that if i were is own sister this is what he would recomend. he also told me that what a lot of people who suffer with CP dont know, and alot of surgeons wont level with the patient-is there IS no guarantee that after surgery your pain may be worse. right then and there i thought to myself-there is no way i could get used to a new level of PAIN!!!! that is why it is called pain management and not pain elimination.

what i am grateful for is that i have specialist that cares and understands the complexity of chronic pain. i am provided with strict pain control to the best of this doctors ability-he has taught me that life is worth living even with the pain-i have some awful days; but also have good days.

it was very hard to accept that i will need medication for life; including narcotic medication; it's about quality of life-and with out these pain medication; things wouldbe alot worse.

you must try to be positive and not dwell in gloom and doom. and come often to this forum-you will find a lot of friends and hope here. God bless you and be good to your self.
__________________
constant companion pain

 
Reply With Quote
Old 09-22-2012, 09:35 PM   #8
Senior Veteran
(male)
 
Join Date: Jun 2003
Posts: 3,465
Shoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB User
Re: has anyone found a reason to live on through incredible pain?

My wifes neck injury started as whiplash froma car accident, She already has a degenerative neuro muscular disease called CMT. But she has had great success with Botox injections, trigger point injections, ESI's and adding Nemanda to her mix of meds. With the addition of the other therapies she was able to cut from 100 mgs of MSC 3 times a day to 30x3. She continues to work but she knows when it's time for more botox, she is wreck if she goes beyond 12 weeeks. These are things I really dont hear much about from anyone else and would certainly be worth investigating if someone with cervicle issues hasn't tried.

They also keep track of her cord impingment and have said if it goes beyond 8mm surgery is definite. She has been at 6 mm the last 3 years. As far as no body having good outcome from neck surgery that's hardly tue, surgery doesn't usually correct muscular and tendon issue but its usually done for stabilization purposes.

I know people think they have tried everything but it's one of those things that's really hard to do simply because their are so many methods and phylosophies when it comes to PM. I do feel bad for those that feel like their life is just an existance, I have been there and it took 8 years to find what helped enough to enable me to help myself, But nothing else really changed, same wife, same home, same money. It really is all how you look at it i changed the way I see things and apreciate what I do have even more. If you have a partner, make it the best relationship around, if you have children dont waste the time you have been gifted with. It really is all how you look at. Take care, dave

Last edited by Shoreline; 09-24-2012 at 07:58 PM.

 
Reply With Quote
Old 09-23-2012, 12:07 AM   #9
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: United States
Posts: 1,412
nochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB User
Re: has anyone found a reason to live on through incredible pain?

It's only a whiplash doctors say, huh. Well, it's not that simple, even after so many years of whiplash doctors cannot do anything about it.
It really damaged tendons, ligaments and muscles to the point doctors don't have the technique to fix. Wouldn't it be better if they could just fix it?BUt they dont' have the technique even when you dont' have degenerative disease there that whiplash causes.

And anyway, most of the cervical issues you can blame on the invention of those cars.
With carriages THERE IS NO WHIPLASH. Most neck pain patients have this problems caused by cars. Very few it happened naturally. But MOST of them is caused by a whiplas ----vehicles.

They should have stayed with those carriages and that's it. AT least, no whiplash and so no neck pain for life. and so no need to go to the pain clinic for chronic pain.

Cars have done more bad than good. It just wasn't worth it.

If you lived at the time of lincoln with carriages than your wife WOULD NOT HAVE THIS COMPLICATED ISSUE CALLED CHRONIC WHIPLASH. Something doctors with all their knowledge and technology cannot FIX. With all the new invention--------they just cannot fix damaged tendons, ligaments and muscles.

 
Reply With Quote
Old 11-08-2012, 12:46 PM   #10
Newbie
(male)
 
Join Date: Nov 2012
Location: From the southern tier of NY State
Posts: 6
motodad870 HB User
Re: has anyone found a reason to live on through incredible pain?

I can truly understand how you feel. I have been dealing with chronic pain since 1989 due to a tractor trailer accident. My problems is trying to find a pain managment doctor. I live in the southern tier of new york state. I was hoping to find somebody in the binghamton , vestal, johnson city, oneonta, cooperstown ny area. I can't deal with this any longer pain is so intense I don't function, sitting like a statue afraid to move so not to have pain worsen. I hope the best for you!

 
Reply With Quote
Old 11-22-2012, 03:47 AM   #11
Newbie
(male)
 
Join Date: Nov 2012
Location: From the southern tier of NY State
Posts: 6
motodad870 HB User
Re: has anyone found a reason to live on through incredible pain?

as I read through so many post of ones suffering from chronic pain everyday mimics what my life is trying to deal with the pain and also trying to find A caring doctor. I always come up empty when trying to find help but it seems know one (Dr's) care. I know there are Dr's that do care but for me trying to find one is like trying to find a needle in a hey stack. My life has been held captive from chronic pain from extreme arthritis, migraines from brain trauma and surgery, fibro myalgia and pain from diebetic complications. I often ask myself the question what is the reason for me to live on?

 
Reply With Quote
The following user gives a hug of support to motodad870:
Hemlock07 (12-14-2012)
Old 11-22-2012, 05:12 AM   #12
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: United States
Posts: 1,412
nochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB User
Re: has anyone found a reason to live on through incredible pain?

I always wonder howcome those doctors don't suffer from chronic pain.
Howcome they never been in a car accidents and then suffer from whiplash neck or back pain.

I don't get it. Perhaps they drive BMW, with those cars you are protected. Those are for the rich------BUT it worth it, cause chronic pain is a nightmare and no cure.

That's what I think. They just drive BMW, and so even in an accident their neck and back is protected. Tendons and ligaments are not damaged and so no bulging and no herniated disks.

 
Reply With Quote
Old 11-24-2012, 02:02 PM   #13
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: United States
Posts: 1,412
nochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB User
Re: has anyone found a reason to live on through incredible pain?

Chronic pain is my enemy also. I am glad I had a life with good memories and thie hell only started at the age of 35. Till then I could do anything. Traveling etc....

For a man it must be horrible to live like that with chronic pain. Men need to be strong, not disabled.But also women...what man will want a woman who is disabled with chronic pain. and yes, chronic pain is a disability.

 
Reply With Quote
Old 11-24-2012, 04:33 PM   #14
Junior Member
(male)
 
Join Date: Feb 2010
Location: us,montoursville,pa
Posts: 36
backman01 HB Userbackman01 HB User
Re: has anyone found a reason to live on through incredible pain?

You are not far from me iam in montoursville,pa i used to drive tractor trailer too.my s-inlaw lives in buffalo she said there is a good spine hospital there.there is a couple good pain center here,but nothing they help me with.Rick

 
Reply With Quote
Old 11-25-2012, 05:36 AM   #15
Newbie
(male)
 
Join Date: Nov 2012
Location: From the southern tier of NY State
Posts: 6
motodad870 HB User
Re: has anyone found a reason to live on through incredible pain?

Today is cold and it snowed 5" in Norwich, NY. When its damp the pain is so intense it it unbearable. I will be a prisoner in my home next to the heat with my dog GUS. He is my service dog, he can't relieve any pain but I couldn't live without him. When I need to get up from my recliner he will jump right up and stand like a statue to help me get up. he is a 110 lb. chocolate Lab. Officially he is a psychiatric service dog. I have pain all over the worst is arthritis, migraine headaches from brain trauma and brain surgery, fibro myalgia,and neuropothy pain from being diebetic. I also deal with bipolr and severe depression, the highs and lows are unreal. I can't sleep for more than 2 or 3 hours a night because of pain, so GUS and I watch tv all night. I have been looking for a pain mangement Doctor for awhile now and found one in Syracuse NY but that is to far to drive for me, and I found one in Vestal, NY both come highly recomened. I appreciate being able to hear from all that suffer from chronic pain, not that its a good thing but I don't feel alone. I am 63 years old and I refuse to grow up, be to serious because life is so short. I wish you all well.

 
Reply With Quote
The following user gives a hug of support to motodad870:
Pandie (11-26-2012)
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:04 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!