This Can't Be Right

My husband Ray has chronic pain due to back problems which include spinal arthritis, degenerative disc disease, spinal stenosis and ankylosis spondiolysis. His pain is extreme and chronic and three pain clinics have told him there is nothing they can do for him except steroid injections which may or may not help, and might actually make things worse.

For the last seven years Ray has been under the care of a wonderful brave doctor, a doctor who was willing to prescribe strong (that is, narcotic) pain meds, when other doctors wouldn't.

The fact is, not prescribing pain meds to patients who truly need them is against the law. The lack of pain is considered to be one of the vital signs of good health: when pain appears it is a warning.

When pain continues for a long time it means that something is very very wrong.

Ray's pain has continued for 11 years, ever since he was in a car accident (not his fault, by the way) that exacerbated an underlying condition. Ray's agony kept him from working, doing things around the house, sleeping or enjoying life at all.

Ray was nearly suicidal when he finally found a doctor who was willing to prescribe pain meds.

For six years Ray, taking the pain meds under the watchful eye of his doctor, has managed a nearly normal life. He has not been able to return to work but he has been able to drive a car , do things around the house, and even enjoy and occasional outing. He took his meds exactly as prescribed. Sometimes the side effects bothered him, but he was glad to be able to function.

Then disaster struck. The DEA clamped down on Ray's doctor for prescribing narcotics and the good brave doctor lost his license .

For the last four months Ray has been without a doctor. Since Ray had no forewarning that he would be cut off from his meds he ended up going through a hellish withdrawal and spent a week in the hospital. The hospital treated Ray like a drug addict, and not like a pain patient who was physically dependent on narcotic drugs, but not emotionally and mentally addicted.

Since coming home from the hospital Ray's life has been one long agony. He is in too much pain to do much of anything. He watches a little T.V., tries to sleep, tries to do some mild stretching exercises. He cannot drive, or even sit up for long. He needs help with dressing and getting in and out of the bathtub.

He has next to no appetite.

Ray has tried to find another doctor. He has lists of doctors who are supposedly taking new patients but they always turn him down. The only one who hasn't turned him down is a doctor who works at the local free clinic. I guess this clinic must get a lot of real drug addicts (that is people who are taking narcotic drugs for anything but long-standing intractable pain) because she had Ray talk to a counseler before she saw him, declared he needed a pysch evaluation after Ray admitted he had a high tolerance to certain medications and insisted that Ray submit to a urine test before she would prescribe anything for him.

Worst of all she wants Ray to sign a legal document saying that he will not take any drugs (other than those prescribed by her) as long as he is a patient at her clinic. (He hasn't done so.)

This does not seem right to me. The fact that it is a free clinic (only free if you have no insurance or income, by the way) doesn't mean they have the right to assume that anyone who walks through their door is a drug addict. Ordering a drug urine test before prescribing is highly unethical to say the least., unless the doctor know for a fact their new patient is either a hard core drug addict [ a transfer from a drug rehab for example] or a convicted felon being monitored by the court system

Ray's ready to give up on doctors altogether.

I'd rather see Ray;s original doctor get his license back.

The doc would probably be wary of prescribing narcotic pain meds. But he might be willing to look into alternatives, instead of just branding Ray with a label he doesn't deserve.
Hi RaysWife,

I am truly sorry he is in so much pain. Keep trying to find answers be it alternative ways to assist with the pain , i.e. steriod injections, Toradol injections. etc. I would try every alternative out there to get me out of pain, based on what you have written is wrong with him, . including signing a contract and submitting to urine tests randomly.. if he has nothing to hide then the aforementioned should not be a problem..nor should it even be questioned.. if I couldn't get out of bed and live a decent qualty of life. I am sure he has all of his medical records to back up his health issues. So I am complexed as to why no one will help him. Call your insurance company and ask them for advise. Who they can refer him too.

I can't recall now but did you say he has not had the steriod injection or has?

If he hasn't why not? He has nothing to lose at this point but to try it, I can't image why he would not try it. To answer your question, I do not feel it is unethical for a doctor who is prescribing pain meds to request a contract, or ask for urine tests. They have to protect the 8- 10 yrs of education and practices they have built. Frankly I would love to see more doctors doing this. Keeps the person honest. It is a win win situation.

Wishing you much success trying to find a solution.
Brook

One more thing,. There are doctors wives on this board who I am sure will gladly share with you and Ray why doctors have to be strict regardless of what we the patients think about it, and in the state of VA, it is not against the law for a doctor to request anything from a patient if they are precribing narcotics.
Hi Rays Wife....
I am sorry that Ray has not found any relief or a doctor who is willing to really work with him, believe him.....
Stenosis is very painful, my father has been operated twice because of it...and thankfully each time it worked and the pain was nothing, to just some discomfort after, never requiring pain meds because the problem was solved..... Ankylosing Spondylitis I had to look up, and it doesn't sound good from a pain standpoint......Your husband has been seen by other doctors does he have his records to bring with him, proof of what is up? And also why no operation for the stenosis, in most cases it can be relieved. If it is because of insurance, or lack of..... If it is lack of get on the phone to every hospital in your area, call the teaching ones first, beg, plead....No one should ever live in chronic pain. The injections, atleast the spinal epidurals are hit and miss, and they eat the bones, thats why there is a limit to 3 a year.....My husband has some real problems with his back.....and was on painpills, but he abused them and then went on to heroin....This he will have to live with for the rest of his life. No operation will fix his problems as of now...But yours should be able to get relief for atleast the stenosis.....Also accupuncture has been helping mine, has your husband ever tried that....
And suboxone, I would look into it, and then bring it up to your doctor at the clinic. It has helped many who are in chronic pain, and it doesn't have that high that goes along with other opiates.....If you need any links on it you can email me at rtrka5@yahoo.com.
Now the reaction from the doctors he is seeing is unacceptable, but in many ways not something that would be out of the norm....There are many people who scam each day for meds they don't need.....
Love,
Tina


Hey Ray's wife, this may sound a bit odd but have you tried acupuncture?
the guy I go to does Osteopathy aswell and he makes me so much better. I have constant headaches from morning till night, well I did until I went to this guy.
Just a thought.
Karen
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My husband has a bone fragment that has broken off in his back and is sitting on his Sciatica nerve and causes pain to run down his leg and if the fragment moves the wrong way, he could be paralyzed from the waist down, we have known about this for about 5 years and we just pray it won't move. Surgeons are scared to do surgery b/c they are afraid they will move it the wrong way and he will be paralyzed. He also has OA in his back, a bulging disc and a herniniated disc they could fix if it weren't for this fragment of bone. We have seen Neurosurgeons and they agree. They cold fix 2 out of 4, he just has to live with it and he is able to take Bextra with Nexium, that gives him some relief. He hurts but he still moves around a lot (which moving around is good for his OA) and has stuck to Advils, Bextra (when his stomach can tolerate it) and Nexium for his stomach. So, my husband's not having as bad of pain that your husband is. He can tolerate it for now. It hurts him less since he took early retirement from being a technical buyerfor 26 years from Michelin Tire and is doing what he always wanted to do, he had done it all along on Saturdays. He has installed over 100 ceiling fans. water heaters, disposals, that was he was made to do and that helps his back, the moving around. He heps little older ladies one day a week for free, it make shim feel good, they are in apts thatbare jsut - I'll say in bad shape. Yet, I have been there with him and those little ladies keep theit 600 st ft apts immaculate and they do it themselves. However, I'm afraid if he moves around too much, that bone fragment will move but we just try not and think about it.
Does your husband - like mine get massages out of you,(haha) too b/c I know when he hurts, he just won't tell me. He can choose his schedule now but he is a workahlolic. He does say "no" sometimes - he hates to paint so he has a guy who wants to paint.
We found all about his back after my addition and he refuses to take narcotics of any kind. The day may come to where he has to but he saw how they took over me.When I was addicted in my 30's, I was mean to him, this time I was just liked a whipped dog, felt like I was waiting for them to kill me, a slow death. I still worry about my liver and what damage they could have done to it. On my next DR's appt., I will ask then to test it, I's rather know. There are people on the board who have liver damage not from the narcotic but from the Tylenol in the narcotic. I didn't even know that until I joined this board so you will find, it is a learninf experiene,
This board is wonderful. If he reads it, too, it will give him hope even though he probably will still have to take pills, it sounds like the pain is so bad, he will need s'thing strong. Some on here do, The board just gives you hope. It' s a wonderful group of people. I know they had a hand in saving me.
Another thing I have heard, I have always been afraid of Oxycontin (spelling?)
I read on the board that it's better for your liver thanLortabs or Vicodan, most Narcotics in that range. Somehow it by-passes your liver. That's somelthing you can bring up to the Doctor.I hae no medial experience. this is onlu the information I have learned over the lat 1 years whenI was first diagnosed and then my husband's back problems. Also, so much info from this board

Also, when I stopped Lortabs the 1st time - got hooked in my 30's (I was 36 when I took that 1st Lortab) never smoked - not hooked on anything, loved being a mother and wife. I didn't take Lortabs every day for a couple of years and the pain got worse and I started taking one a week with a side job we had - then went to one a day - at the end of the addiction in my 30's - one day I counted and had took 25, I remember praying that I would wake up the next morning. Now clean for 4 1/2 months, almost 50 years old and I am so happy just to be here. I first got hooked b/c of Migraines - then OA and Fibromyalgia. That doctor was giving me more than 500 a month. I thought this was wonderful, no pain and they gave me energy the first time round. It took 7 months of taking day more than 5-6 a day before I knew I had a problem - still took a total of 15 - 20 a little over 3 yrs that time and the same amt of time this go round, aout 3 years.
This time my R-gist started giving me 120 a month (even though I had told them what had happened with my adiction - there was a little yellow sticky note when you opened my folder and it had "NO LORTABS" The 120 worked for a short while and then I was getting 30 every other month from my family doctor so thsi last time I was getting 120 one month and 150 the next month. The withdrawals were just as bad as taking so many the first time which shocked me. I thought I could handle that amt after taking so many in my 30's.

A doctor once told me that I shouldn't stop all at once, we have natural Receptives?(not sure if correct word or spelling) in our brain that kills pain. The pain pills have killed these for now but they will come back in time. He said it will take about a year. I only have bad pain during Fibro flare-ups so I'm trying to wait out that year.
There are many intelligent people on this board who have been clean a long time. They will have tips on taking them on schedule, etc. Now, for me, it's just my e'day pain that I'm thankful for but it still keeps me up some nights, not bad enoug for opain pills - I do take too mant Advils - 4-10 a day - epending on the pain. The nurse practitioner told methat it ws goign to damage my kidneys - I asked my R-gist about it and he said "what are you goin to do" That may happen with your kidneys and the Sbi=ls - we know what th anti-inflammotories o to your stomach - signs of bleedng ulce, he said to be happy that I found that the Advils work for me.

You will get many responses from the board, ask anything. You will get different resonses from different people b/c what has worked for some has not worked for others and vice versa. You can discuss all with your DR when they get you a DR.
The first nurse my husband called when I knew I couldn't stopteh pills in my 30's -told him I could die if I quit cold turkey. I don't think that has ever happened on this baord from pain pills, you just wish you would, b/cwithdrawal are so bad - within a wek, you know you will make it and you even have a good outlook but your husband has this permanent pain - so he needs a DR.

You will hear different stuff from many doctors and nurses, some are u'standing and some are not. When he's in that bad pain, you can be his strong voice and tell the mean ones that you want another doctor. We should not have to put up with that. When I hurt for so long, and get no sleep, I just cry so my husband is my voice if it' s one of 'those " kinds of doctors - he can tell them in a minute. I have had this for 16 years so I am good at it but when you are in pain and you haven't slept for 3-7 nights, maybe 1-2 hrs during a 24 hr period, you're not up to being tough.

If your husband happens to be taking Xanax or other drugs for any reason, when I stopped taking Xanax for about 48 hours, I had a "Grand Mal" seizure. That was horrible. I had taken them for years for panic attacks but didn't know you shouldn't stop all at once. I was out of town and had forgotten them and I didn't think it was a big deal until I woke up in motel room and at least an hour had passed.They had to use the paddles on me to bring me back. So, I learned it can be just a dangerous to stop pills suddenly than to take too many.
So, your husband needs a doctor now and it sounds like you have had no luck so I would take him to the ER where they have to see him. Your huband has no quality of life being in this pain. It sounds like may need to stay on pain pills the rest of his life due to his bad back problem. I pray he won't , maybe they will find another solution. They can work wonders today, if you get the right DR, maybe even suggest one of the big hospitals like Duke or Emory. He should not be punished for what the other doctor was doing.

Good luck to both of you.Pls let us know, this board is a Godsend to so many, myself included.

Love to both, Jean
Jean
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Hello Ray's wife:

I know this will b a 2 parter, you are new, just read over, I know some is too much info but just meeting you, I wanted to gib=ve you e;thing I ahd - hoping to help.

Love, Jean

(Ray was my Daddy's name so I have a softspot for any man named Ray, I want to help you as much as I am able, it really doesn'r matter what the name is - haha hat is my middle son's middle name, too.
- he was the perfect daddy

This is a long post but hope your will gain something from it. I really want to help, in anyway possible.
This may seem too simple but if he were my husband, I would take him to the ER immediately and demand that he be seen and a doctor take him as a patient. It was not his fault this other doctor was giving out narcotics to people who may not have needed them, which your husband did need them and now that doctor's gone or should I say no longer able to practice.
Your Ray should not have to suffer and it sounds like he is in bad shape. It will take too much time to see a specialist. Where I live, in Greenville, SC, we are growing so fast, a specialist won't even work you in, they don't have the time. They tell you to go to the hospital if you are in bad shape and it's not about the money b/c at the time, we have good insurance. They have no time to work patients in.
I know it will be hard for your husband to sit in the waiting room with such bad back pain. A wheelchair will only help a little but it does help. I don't know if all ER's are the same or not. To get him in a bed faster, I would say that his chest was hurting, along with other bad pain. They have to take you back immediately. (some people on the board may not agree with this but I am thinking of your husband)
I did that once but not on purpose, I made a point of saying I was NOT having chest pains, told the ER recep. that my chest was hurting and it felt like s'thing was squeezing my heart.I didn't want her to think I was a hyperchondriac so I even played it down but I learned that when you mention your heart, they move fast. It turned out to be Fibromyalgia and OA in my chest. I had just never had it there before. Dr. also said my OA level was up.
I was shocked how they placed me in a wheelchair and flew me to the back with a baby aspirin on the way.
His chest probably is hurting from having all of this pain and he couldn't be getting any sleep.