Hello, my name is Anthony Nelson and I see you have been trying to get help with chronic pain without much success not to disappoint you or to sound negative but I have been dealing with chronic pain since 1973 and still have little to offer in help when it comes to chronic pain without the public's stereotyping chronic pain. You know the old saying one bad apple spoils the whole bunch believe me nothing could be further from the truth when dealing with chronic pain and narcotic pain relief as for me I have lost my right leg due to chronic pain luckily I am a 100 % disabled Vietnam veteran. I can tell you this much if you are dealing with chronic pain in a extremity and are receiving Social Security Disability at this time the moment you go through amputation of that extremity and have completed physical therapy you can tell the Social Security by because you are now able to be employed according to Social Security regulations. How do I know this because it happened to me once my right leg which was causing me chronic pain as well as swelling and ulcers was amputated my Social Security stopped and watch out for back pay issues because they will do their best to prove you owe them back pay. I still get my military disability thank goodness. Well there is a whole lot more I can tell you about this subject but I am in chronic pain now in fact I have tears rolling down my checks because of the pain and the bad thing about it is that Hospice sees, me three times a week and you would think they could take care of the pain NOT. You see they are used to dealing with people who are dying with cancer and only deal with the chronic pain for a given length of time because they usually pass-away within 6 months or so and then their battle with chronic pain is over. What I cannot get through to Hospice and the doctors is the fact I have dealt with chronic pain since 1973 to present. I lost my right leg to amputation in 1980 after suffering from 1973 to 1980. The was not over because now I had to deal with phantom pains and nerve damage multiple joint damage due to the use of crutches and wheel chairs of and on until present I finally was taken down for good in 2002 due to multiple blood clots and breaking the femur two times in almost the same place just above my right knee. Hospice has told me that it is time for the amputation of my left leg due to ulcers and chronic pain as well as what they call PVD (peripheral vascular disease)  I am sorry but I must stop for now because of this pain I will try to write again if I am able to. I can tell you so much that you would find it hard to believe.

Have a good night

Anthony

Earl Roberts

11/ 7/09 6:17pm

Hello Anthony,

                   My name is Earl Roberts, I live in Vacaville, CA.  Your situation/story touched me to the bone.  I am a bilateral AKA.  I lost my right leg in 2006 and my left leg in 1999.  Fortunately SS has not put my SSDI at risk.  However, I am dealing with severe nerve-damage pain in my left leg, even ten years after losing it.  My story is too long to go into right now as I just had major surgery on my left elbow and am left with one arm to function with.  My right shoulder is also causing me grief as it sometimes will swell in the joint and become frozen with excruciating pain.  This has happened three times, last night being the third one.  Twelve hours after my elbow surgery (10-26-2009), my daughter called 911 when she heard from my 58 year-old mentally retarded brother (I am his care-provider) that I looked bad.  I remember the paramedics helping me, but after 20mg  of morphine (10mgX2) & verced I did not wake-up for 36 hours.  I later found out my blood pressure exceeded 218/110.  The pain I was in almost killed me.  I spent six days in the hospital getting dilauded every two hours and the three days after walking up I was so miserable from pain.   I like you have dealt for so long the nerve-damage and phantom pain that it has consumed everything that I am or ever was.  I must admit when I heard a paramedic tell the doctor over the radio that my BP was 218+ and climbing I prayed for a fatal heart attack.  PAIN is the most terrible word in the dictionary.  I would like to continue correspondence with you, as venting with another chronic pain sufferer can help in a small way.  Thank you Anthony,  may you find some relief or help out there and never give up.  Earl

I hope that this message is late and that you have found relief. 

However, I also suffer from neck/ shoulder pain on a daily basis and so I suspect you might still be hurting.    So I was searching the internet for alternatives as I've had 3 surgurgies which I would say has put me back to exactly where I was before the surguries.  Anyway! I came across a website from Cornell University hospital in New York.  Unfortunately, I live in Wisconsin so for me wasnt an option.  Have you checked out them for help?  Their website showed that they have a pain management clinic.  They might be able to help you.  Well Take Care! 

Stay hopeful.  As difficult as that is.

Hello, I'm sorry about your situation and chronic pain is a frustrating thing which leads to depression, sadness etc.  I know, I have the same problem.  I go to a methodone clinic since I cannot find a doctor to treat me at home and going there daily using public transportation is a nightmare.  I want to respond to one thing you said about using prescribed narcotics not being able to go on forever.  All I can say is as long as you use as prescribed and try therapies, massages etc. I can't see why the use of the drugs has to stop.  If the pain is chronic you need help.  Just be sure to use the drugs properly, keep communication with your doctors open and maybe you will be ok.  Are the drugs controling the pain?  If so I feel what you are doing should stay as it is.  As they say "if is isn't broke, don't fix it."  I wish you much luck and feel for you in this unfortunate situation.

My name is Rose, I have been a chronic pain patient for twelve years.  I have what is classified as hypo nerve sensitivity, (over reactive Nerves).  My pain is located primarily at the T8-T10 spine, (approximately the bra line, or where the bra wraps around & fastens).  I first got hurt falling in an elevator. Through MRI's it was noticed that I had something dense pushing on my spinal cord and flatten it, later it is believed that I have a calcium growth at the T8 area that is internal instead of like the other external calcium growths on my spine. This was believed to be causing the high pain level I was experiencing in my upper back, priimarily on my left side and left arm. pain radiated down to the nerve located near where one's "funny bone", and pain would raidiate up my neck causing extreme head aches at the top of my head, pain also at times (not constant) would radiate down my back into my left leg causing randomly unbealivable sudden pain where it hurt so quick and sudden I would fall down unable to hold my weight.  I for the first two years saw a couple of pain doctors who provided the class II narcortics, one in fact being over generious of his treatment where I was prescribed multiple pain meds at once (ie, oxycotin, oxycodone, fintanol suckers, derogesic patch plus wanted me to agree to move forward to having a DPS Pump surgically implanated, also known as a pain pump that would continiuelly inject meds directly into my spinal cord.  For me this was not a reasonable option due to knowing that there would be monthly appointments to refill pump, which by the way is administered only through a certified doctor so there was the inconvience of limited availability so if I ever moved, etc. Then the fact that every 3-5 years would have to have a surgery to replace pump when battery ran out; being a person prone to adheasions (I have had 19 surgeries) wasn't a good option for me as well as after reviewing information my husband & I decided to not  agree at that point for we saw the DPS Pump usage as a last resort.  Needless to say this Dr. felt he could no longer treat me and immediately stopped including refusing to refill meds so I was forced to stop cold turkey.  That is an experience I never want to endure again.  DO not let a doctor put you in a position to stop class II narcotic cold turkey they should wean you down.  Okay so then I learned that there is a significant difference between pain doctors & pain management doctors.  The main difference is their treatment idealism.  Pain doctors prescribe pain med, pain management doctors are doctors who are specialized in treating chronic pain patients.  They provide treatment throught managing your chronic pain with working with a team of medical providers of different expertise, (ie, psychotheripists who specialize in chronic pain, bio-feedback specialist, a variety of physical therapists who each have different methods from aqua-therapy in a therapudic pool, deep tissue physical therapy, yoga based physical therapy, one who works with your feet, etc. then you have a life skills coordinator who teaches you life skills now as a chronic pain person.  The point is that you work with a team of individuals whose goal is to manage your chronic pain.  Their belief is that each patient is different so they treat you as an individual vs the "cookie cutter" fix, (one way for all).  When I went to my first appointment with this pain management doctor he first review my file with his team who each specialized in a particular course of study that was like a piece of the puzzle to manage a chronic pain patient's pain.  After review and a consenus that it was believed they could help I was accepted into their 6 wk outpatient pain program.  Yeah, I wasn't very receptive to the idea of 6wks either.  I didn't believe that there was any way possible I was going to be able to endure 6 wks M-F 8am-4pm in their pain management program.  Remember I was in pain so severe I was in bed 5 days or more out of a week.  The idea that I could actively do this program 5 days a week 8 hrs a day was beyond my belief.  This doctor made it clear that I was required to attend every day for 8 hrs for him to accept and treat me.  Needless to say I was very angry (scared) at the idea of his requirements.  I believe I even share a few exerts that I should not have and I believe any other medical professional would of kicked me out of his office yet this doctor remained very calm and allowed me to express my apprehensions.  After I finished he assured me that his team was there for me and what better place to be than at the hospital/clinic when in pain.  He assured me that if my pain level became unbearable to where I could not sit he would provide a bed as well as manage my pain.  I relectantly agreed and began the 6 wk program.  I am so glad I did.  At first I wasn't the most positive patient, in fact I shamely admit I was an administrative nightmare, (though the team says I was not a problem child).  My pain management doctors first action was to place me back on a low dose of oxycotin, with nerve blocks.  Having had my previous experience of being prescribed a high dose of pain meds, and neurotin I had concerns due to being put on these meds I got not relief from neurotin when prescribed it by itself, and I was abruptly stopped given oxycotin and had to endure a month of hell where all I wanted to do for two of those days was kill myself.  This doctor so patiently addressed my concerns and assurred me he would not drop me cold turkey off meds nor would he "fire" me as a patient.  He calmly stated, "All I ask is a lot.  I ask that you trust me and allow me to try and help by keeping an open mind to everything we present to you and you give it a try."  I was so desperate that I agreed for I knew how difficult it was to even find a doctor who is willing to prescribe pain med.  What I learned in this 6 wk program is the most vital information I ever have received infact knowing what I know from this 6 wk outpatient program I highly encourage every pain patient I speak to to find a pain patient program in their area.  I believe half the battle is finding support.  In this program I not only had a doctors support, I had psychological support, emotional support, physical support, and medication support!  I learned that with nerve pain one nerve block med didn't work too well but when you covered the whole neurological messaging pathway (taking neurotin, clodine, and baclofen together along with a low dose of oxycotin & oxycodone (for break through pain) along with some low impact physical therapy, counseling for handleing the mental stress and fatigue of being always in pain, learning new ways of managing my dailly routine for hygene, household chores etc gave me an improvement of life.  I learned that I will never be back to where I was before getting chronic pain but I can manage it verses my pain level managing me.  I also learned that there are medical professionals out there that can help and help comes faster and more accurate if they communicate and work together managed by a point of contact (ie pain management doctor) who is able to communicate and keep your primary care physican updated.  Wow it truly works.  Don't hear me wrong, I still am suffering from chronic pain.  I still have bad days, just not nearly the amount that I had prior.  I also am able to believe that I am closer to getting a portion of my life back and those of us who have continued to suffer with pain and not having been given the information and support like I received from my pain management doctor and his team of medical professionals would almost be willing to sell their soul.  You don't have to.  In fact I have yet to meet a chronic pain patient who was seen and treated in a similiar outpatient program who didn't find improvement.  It amazed me the first day all of us in the program hated being there.  On the last week the mood of the class began to show our concerns of the program ending and the fear of not having that daily support that we received in the program. On the last day there wasn't one of us patients who was in the program that didn't wish it was longer.  What I liked was the number in the program was small, this particular program had a maximum of 14 patients, so there was a wait time before my 6 wk outpatient program began, but until I started my pain management doctor saw me and took care of my prescription needs.  Like I said I still suffer in pain but learning how to manage my condition has inceased my level of activity where I am no longer in bed more than I am out of bed. I believe the reason this 6 wk outpatient program works or helps to improve the life of chronic pain patients is because it addresses all fassets(physical, emotional, psychological, medication needs, educating loved ones and yourself) of coping with chronic pain,  Best of luck to you. Rose

Red

1/ 4/10 2:49am

Hi Rose,

I am completely floored right now having read your post as it is so like what I have been facing since 1989. After 5 years of going to every type of doctor practicing medicine as well as Chiropractics.  I was referred to my first PS for oxipital neurolgia. One injection with a 6 inch needle. To my amazement, it worked for a very long time.

 

However, the mid and low back facet nerve blocks didnt. At that time I didn't know much about pain management doctors either. Of course, back to doctor upon doctor

 

To no avail,  I was told to go to a PS, I went to a Pain Specialist several years ago for my chronic pain. At that time, I did  not know about pain mgmt clinics. I went to him for about a year he finally said he could no longer help me and my pain after I passed out when he was giving me an injection into my neck . To say the least, it was very frustrating and certainly depressing. I did continue to see him after my first surgery in 2005 hoping with the fusion done, he would be able to help.. Nope!

 

Suffereing even more within 3 months post op ( L 3-4-5) the surgeon said the hardware fell apart in my back and we needed to take it out. It was just short of a year post op . He also informed me that he didn't do the surgery he had told me he was going to do. He basically fused me bone on bone.  Well, within 3 months of thatm I started getting horrific shooting pains down both legs and terrible pain and tightness in my sacriliac and in my hips. Ouch!  I found another spine surgeon ( one I had been to many years ago). He said not only the fusion was not completely fused, but it was not fused properly and in the correct area.  Needless to say, another surgery. Thinking oh Lord, let this heal well...that was in August of 2007. Same issue again.  more pain...shots, mri's, cat scans, blocks, meds, pt, yada yada...

He was a very kind man and was shocked as well that the fusion, although 100 persent fused, was still causing pain...Back to more doctors, rheumatoligists, psycologists, depression meds, all the meds you can think of. 

 

I have done every kind of therapy, shots, you name it , I have even lost 45 lbs and also tried many ".  Natural" products that swear they help the mind, body and ppl with severe Fibro, not to mention nerve damage from surgeries.

OK, 2nd PS..

PS did not have a "team" of ppl working with him as he was like you mentioned, a Pain Specialist.. Although it was refreshing to have a doctor that had a good beside manner and certainly was very concerned and baffled as to why I wasn't getting any relief  Now, 2 years after going back to my surgeon and being "treated" with meds and occasional films and talks, He finally left me a message stating there was nothing else he could do and that was when he "released" me and sent me to a PM practice.. . 

 

I was hesitant like you, so I went to a Rhuem....she also referred me to the same PM facility. I eventually went there for my first appointment and was overwhelmed.They told me the first thing I needed to do was get off the pain meds ( I was only on vicodin and had been weening myself off the drugs due to family thinking I was addicted and did nothing but harrass me and make me feel even more horrible than how I was feeling with the pain I live in)  Stress also is a HUGE factor so of course, more pain pain pain not to mention not sleeping very well, working a lot ( own my own trucking company and raising children to boot).

 

Then she said I was going to have to "commit" to this program and come back for a 6 hour "pre" test to meet with all the doctors that would be working my "case". She said it was going to be long and hard ( for the test) but that  is how they determine the path.  So I set the appt.  In the mean time, I needed to know an idea of costs, etc due to my insurance. I swear I am going to be dropped from all of this over the years. Well I about had a heart attack. Just to have the appt for the "pre"test and eval, it was going to cost over 1400.00. and that did not include the costs for the "holistic" approaches that insurance doesnt' cover....More stress and a feeling of utter defeat. No was would I be able to afford that.  Then I looked at the itemized daily charges.  ( I am in the wrong business).. It was ridiculous.  Well, that was 4 months ago and I still haven't done anything accept try and deal with my pain. Did YOU have to do the "pre" test?  I am in Illinois and the facility I was going to was out of a hospital in the suburbs.... I am overwhelmed with sadness, defeat and frustratation. I was also told to get maijuana to smoke at night to help with sleep. Can you imagine?

 

I still go to weekly massage therapy as that is the ONLY thing that seems to relax me and help  a little bit. You have encouraged me to look further into the PM but how does one afford this?  It is insanly expensive....

 

I still can't believe my body can produce as many tears as I cry.  Most ppl, especially my business associates, dont know what I suffer through every day. Most people couldn't even fathom, let alone bare pain at this level.  Trying to explain what this pain does to me physically, emotionally and mentally is impossible to most ppl.  I have also always prayed and asked Christ to take this away.  I know "he doesn't give you more than you can handle" but I can't handle this anymore.  I am thinking of closing my business and being put on disability because I am in Sales and in my car all the time. Its very difficult to get in and out. Most people look at me and honestly wouldn't have a clue I have this problem. Im soooo tired... so very very tired of this pain and sometimes wish I would die. the only thing keeping me here is my husband and children. Being a burden to them is difficult in itself......I am at my worst pain level since Christmas Eve...To say the least, It's been very difficult...

 

Thank you for all the very useful information...I was recently told to go to a Neuro Pain Specialist Ortho Surgeion to see if I would be a candidate for a Baclefan Pain Pump. I've read a lot about them and read testimonies on them. It looks like it has the potential for rejection, as well as possible staff infections and challenges with side effects from the medicine.  The last thing I want is to have something else to deal with.... Any thought? I hope this letter finds you feeling better...God Bless

gloria

5/19/13 5:56pm

Hi, my name is Gloria, I am new to this website. I have nerve damage among other things & on pain meds with a spinal cord stimulator in my back. I am in pain management and I have 1 doctor. I wanted to know what state you live in and how did you get a team of doctors to help you.thank you

i had a back fusion in 2000 and have found very little relief after pain managements were exhuasted to my my x spouse playing with my meds i am left with nothing local.  i have chronic pain that wraps around my left hip and feels as though it is being crushed.  recently the pain has started at the top of my left leg and runs down the leg from the very top of the leg to behind the knee.  it is unbearable and makes what should be simple things extremely hard to do.  it has me nervous, tense and feeling like giving up.  my quality a life has suffered greatly and i am at a loss of what to do.  my family said go to boston they are the best. so at my last option i felt this could not hurt.  any information and advise would be greatly appreiciated. please contact me.  sincerely carolyn 

Need Medical Questions Answered

7/23/10 8:25pm

if there is a doctor that can help with this please contact me,  the pain is ubearable and i do not know where to turn i am desperate.

Did your Doctor find that your discs had also cause you a spinal injury as well?  I also had surgery on C5-C6.  My pain has affected other body functions.  Since when should a woman have trouble urinating?

My Dr. (located here in Mission Viejo, Ca) told me that the surgery that he did wasn't meant to fix my problem, it was meant to keep my problem from getting any worse.

I would (do as you are doing) find another Dr.  But this time, be very careful what you tell the new Dr. about what the old Dr. said.  This way, the information that you get from the visit will not be biased to protect another in his field.  When he asks you for the name, give him a name he has never heard of.  This will also take off the pressure from him feeling like he is going against someone he knows.  Neuro specialities are a very small community. 

Joe,

I know what you are going through!  I was hit by a car in 2002 and have beed disabled since.  I cant maintain any positions for longer than 20 minutes or I am in excruciating pain.  I have nerve damage caused not only by the accident but by the surgery they did to help me!  My tailbone was broken inward at 90 degrees with part of my sacrum as well.  I have had 4 surgeries on my spine including tailbone removal from the sacrococcygeal joint.  I get numbness in my leg, and shooting pain, numbness in my hands with blanching, migraines, and so much more.  I am on MAJOR narcotics including Percocetts 2 every 4 hours,  Fentynal patches 200mcg/72 hrs. and injections from the pain clinic every three months into varrious areas in my spine.  Although it sounds like nothing has helped me, that isn't true as I was way worse a couple years ago...until I was put on an anti scezure medication  (to help with the nerve pain) It is called Gabapentin and I am on 1200mg 3 times a day! My injuries and pain have done nothing but ruin my life...I was a constable, a wife, I am a mother however the quality of my mothering had been seriously affected, my husband walked out because he "didnt sign up for this" and I am not working and havent been since the hit & run accident in 2002.   I am looking for solutions as well, but all I'm being told is to start taking medicinal pot because it won't effect my liver and other organs like the meds I'm on now.  I have considered risky surgeries because I am sick of the pain and with paralysis, I wouldn't have any.  Anyway I understand how pain can ruin your life as I am in the same boat as you, but if you haven't been put on Gabapentins yet, ask about them they really do help, and I have been told that the nerve damage I suffer from is in the WORST area to treat, and heal so you may get great results from taking these!  Be strong and be very involved with your treatment (like research procedures, meds, specialists, and look into doctors in other provences/states etc.) if you leave it up to your medical providers you will be going through this for a very long time. I hope things work out for you and I thank you for your post because suddenly I don't feel so alone

Good luck to you,

Ky

Hi Joe,

I hope my words find you having some type of comfort. My wife wrote to you because she had a similar situation. We were talking about it and during our discussion I asked if she told you about Trigger Point Therapy. It is a type of massage that puts pressure on the knots we have that cause us a great deal of pain. You may also hear it called Myofascial Release. When we have injuries or surgeries we almost always have these knots. Even runners and football players get them because they injure their muscles by over working them. Bonnie benefitted greatly by this after her neck and back surgeries. I even had a session because I was having back pain. Turns out I had sciatica in my right hip. My calves never hurt though my job required me to walk on concrete all day. Man, I tell you, when she touched my calves I screamed like a baby. And she barely even touched me. My calves were rock solid. It took several sessions to get them worked out. It is not a painless undertaking but well worth the pain. It can take a dozen sessions just to get the pain under control in one area. It can be expensive as it is a specialty area but if you look around you may find one for say $35 to $40 per hour. Don't know if you can afford this but we got to where we couldn't either, so I learned how to do it myself. There are many websites that explain the concept then all you need is a willing partner that will learn with you. Arnica pain relief crean also gives great relief for a few hours at a time. Hope I have been of some help.

Sincerely,

Ron Durr

To whom it may concern, I too suffer severe pain every day of my life. I was hurt on the job in 1998. I'am also a severe heart paitent, with a very rare heart disease. At 35 after c-spine surgery i had the first of 4 heart attacks. 5 days later. Iam on many, many meds. stress can kill me they have found. I had the same docotor 12 years. never a problem between us, so i thought. about a month ago i got a letter saying he would no longer see me as a paitent. i'm also a diabetic. i'm on strong pain meds without them i could die. i'm so afraid and can not find adoctor whowill help me. I live close to Jefferson city Mo. What do i do??

I forgot to say that I used a TENS unit with great success and that lead to the SCS trial.

As others have suggested, if your insurance will cover it, try accupuncture, get training in self hypnosis. Guided imagery and relaxation therapy can also help.

It is uncommon for any one treatment modality to stop all the pain. Each type of treatment can help a little. When you use everything that shows any relief you wind up with an accumulation of treatments the provide a total package of pain relief.

Another thing we all desperately need is enough SLEEP! Sleep deprivation alone causes  pain. For someone with a chronic pain condition adequate sleep is vital.

I have Sleep Apnea and require a BiPaP machine to help me breath while asleep. If you are lucky you may need only a mild sedative to help you sleep.

Right now I see my Primary Care Physician (PCP), a Neurologist (DO) who oversees my sleep apnea. I have had two overnight sleep studies. If you have 5 apnic episodes in an hour you qualify for needing a CPaP or BiPaP. I had 125 episodes. The technician monitoring me said it was painful listening to me try to breath while having fitful sleep. Additionally I have an MD specializing in chronic pain management and I see his Family Nurse Practitioner every month to monitor my narcotic use (pee in a bottle) to be sure I am using the narcotics and not selling them and she also writes my RX for Methadone, Norco 10/325  and Gabapenten.

Managing chronic pain is something that you must be  persistent at. Usually no one area of health care will control chronic pain.

As you can see from all the methods I have tried and am using, it is a long hard struggle to control chronic pain.

I have not said the cause of my chronic pain. It is a long story and bit too long for this forum.

Blessed Be

i'm a 39yr old male, quadriplegic who suffers from chronic pain. i've tried many, many drugs. im on 5-20mg oxycodone ir. it treated my pain great for 9 months. Now it also barely works. the side effects are a living hell-trouble breathing, anxiety attacks, and now sighns of sleep apnea. in the last 3 months, i've had 2 pain clinics shut down because of this horrible drug. I think my last chance will be a spinal cord stimulator implant, since my doc refuses to put morphine in my baclofen pump. GOOD LUCK and GOD BLESS YOU.