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Posted 5/22/2009 3:31 AM (GMT 0)
Hi everyone,

I had my appt with my new doctor. It was a disappointment, but I am trying to stay positive. She asked me general health questions and then quickly made the comment that with my present hx of 4 back surgeries, Deg disc disease, and with my age of being 38, she would not be able to manage me with my pain control. She recommended me to a pain doc that she was pleased with that originated from New York. She also said that I was not going to get better and just going to get worse. I told her I wanted a Primary care MD to care for me if I had other medical problems. They will get back to me in a couple of days to set up the appt. I am scared and am sick and tired of telling my story. I will go see the Pain MD but I am a nervous wreck. I know I am not going to get better, but I am afraid that I am sooner or later going to need the stronger narcotics and when will I not be able to be a RN anymore. My back is getting weaker by the day and I am working to 50 hours a week to pay the bills. I hope he is a good PM and I am not going to give up. I go to see my Neurologist next week. On the brighter side, I have the worst root canal and after today of drilling again, the pain is gone in my tooth and jaw. I had to put my yellow lab down Tues, he was suffering, had a fatty tumor the size of a melon on abdomen, bad arthritis in hips, couldnt stand or sit for long periods of time (sounds like me at times). He is happy today running with his brother Buddy( my choc lab that died 4 years ago of old age) If my back gets any worse, I am considering to file bankruptcy by myself ( a girlfriend told me if you are married you still can file single, does anyone know if thats true ) Well, I am babbling but it has been a long day of ups and downs. I am glad I have you guys here to just listen.

cshelp turn

Posted 5/22/2009 3:56 AM (GMT 0)
Cshelp,
Wow - you've really had a plateful of heavy things drop on you all at once. The search for doctors...ARGH! I hear you about telling and retelling your story, filing out yet another set of forms, on and on. One suggestion might be to write it all out and then just take a copy with you to each doctor visit. At least your story is down, even if you have to read it to the doc. I wonder if they realize how exhausting just that one thing is. I keep thinking medical treatment (or lack of) really contributes to our depression because you have to beat you head against so many walls and it gets exhausting and feels pointless at times. I sure hope this leads you to a doctor that will give you some decent pain management.

And I'm so sorry about your dog. That had to be especially tough in the middle of all this.

I really don't know about the bankruptcy thing if you're married.

Hugs to you!

PaLady
Posted 5/22/2009 4:05 AM (GMT 0)
PAlady,
You are exactly right, after going to the doctor sitting in a chair waiting moving to another room and waiting. I am sick of telling my story again and again. I will write up a note and make copies. I feel like I was run over by a truck. Its the T11-T12 disc that doesn't like chairs and screams at me to get up. Well the last PM put me on Kadian at noc and she knew I was a RN working but that was like a roller coaster of pain up and down. Does Oycontin SR work better? Percocet does nothing for me. My body is so weird with meds. I wish the Neurontin took care of pain in my back like it helps the neropathy I have in my legs. I still have my Otis(black lab) and he is a momma's boy. He is doing OK without Will and I dont think he is depressed. I hope he will be OK. Been giving him a lot of attention. It will be hard telling a new MD how this med works and that doesn't. Any plans for Memorial Day weekend?
cshelp
Posted 5/22/2009 5:46 AM (GMT 0)
cshelp
T-12 is what ended my nursing career, they would not do surgery, they said it was to dangerous and I had to many other disc problems, so they put me on the pain meds, and said as long as I can move and they can keep me reasonaby comfortable, then that is the way it is going to be! I take the oxycontin twice a day and the baclofen for the spasms, and am on disability. I sure have empathy for you!
Good luck to you

White Beard
Posted 5/23/2009 2:37 AM (GMT 0)
Hi cshelp,

Wow! Sounds like you have had an awful week! sad I am sorry about your dog, losing an animal is really tough. But at least you know that he is in a place now where he can no longer fell pain or be affected by the wear & tare of aging.
I too can relate about being sick to telling your story over and over and over. I feel like I have done it a hundred times, because I have been to many diff docs that couldn't or wouldn't help me, or ones that I didn't like before I got to my present arsenal of docs. This fall I finally made a list of all of the different medications that I have tried, as well as procedures & alternative therapies - so that I could just hand a copy of this to all of my new doctors. At that point, I had tried so many different things that I couldn't keep it all straight. To this day, I don't even remember dosages of most of them, but I at least remember the duration that I was on them & my reaction to them, both of which I included on my list. I also listed "important" specialists that I had seen prior to seeing the new doc. Most of my docs find this really helpful. I also find that it is a good reference for myself, because I been on & tried so many things over the last two and a half years.

Hopefully this new pain doc will be able to help you. Unfortunately, you'll probably never find 100% relief (although, if you did, that would be absolutely awesome!), but hopefully you will be able to get down to a pain level that is tolerable. It stinks that we often have to trade pain for side effects, but that is the way it goes. Your PM will probably try non-narcotic meds & injections first, before he moves on to more drastic, long term measures. And hopefully, one of those first treatments will work! Best of luck with your new doc, I really hope that you find some relief!

hugs,
Skeye
Posted 5/23/2009 3:25 AM (GMT 0)
To all that posted in reponse to my daily struggle,
I am so glad I found this site on the internet, I didn't know were to turn or what to do. One day, I was on a chronic pain chat line and the people on there were talking weird on the chat, as if CP was a joke and then this site popped out of no where. That was a sign of help once I saw I wasn't alone. Months ago, I felt like a drug addict and thought there was nobody in my situation but there is support out there. I feel a little better taking the medicine because I take it for the pain, I dont crave it. I watch the clock suffer the pain and know when the next pill I can take. It's hard at times but I have lived with this pain for almost 10 years. This site has gave me a sense of peace knowing I can go somewhere if I need a friend. I had a best friend who I went to school with her since kindergarten. I helped her with problems, money and being her friend(she has Fibro), until one day the drugs took over. I loaned her 1700 dollars, she never paid me back and became deceiving. She was a bad support system for me. She tried to teach me how to manipulate the system to get more drugs. I didnt want to do that. She takes the drugs to help her pain but she has a pharmacy in her house takes anything she wants and when she needs to do something she takes Provigil. Thats not healthy and there are other ways to get a little better beside taking lots of narcotics. We have stopped talking and I will not turn out that way because that is abusing and as being a nurse, the drugs will stop working if you abuse them. I am going to simply get to know the PM and ask for a MRI to see where we are at. My legs are starting to cramp up, back hurts all the time and my left rib hurts. The rib is scaring me because that is what happened when I got the T11 herniation. I dont think he will do anymore surgery because there is only 60% of the disc left. I will update everyone when I go see him. Here is a paranoid question but just tell me I have a friend out there. Hope everyone has a good Memorial Day weekend. I have to work 2 16 hr shifts and Memorial Day noc shift(gotta pay bills) One more question, do you have to pee in a cup everytime you go to a PM doc(It makes me feel downgraded and that I am an addict) I cant have anything illegal in my system or I would lose my job.

cshelp
Posted 5/23/2009 5:37 AM (GMT 0)
 

Cshelp, I have tried to reply to you but have been kicked off again. Here goes another try.

It is common for Pain Docs to require a pee test as the pain meds are the number one abused medications. They also have to try and separate those who are addicts versus dependent on meds. I have a difficult time as I can't pee on demand. I have had to hold it from the time I get up until an afternoon appointment as I am afraid that would not be able to pee when I get to his office. He refuses to see a patient until they pee. I received a bill this week for the urine test from my last visit. The lab mailed it to me by mistake instead of my Workcomp company. They charged over $500.00 for the test. What a surprise.

 

Another area that I have been thinking deeply about is in regards to working. The contract I have for work states that I will be required to work overtime but I am not to work over 60 hours a week. I am over that number most weeks. I am now thinking that this is used against me by the doctors. i am sensing that since I work such hours, the pain must not be that bad. I am in the process of having a nerve stimulator implant (two weeks away). The last visit I had with the PMS left me wondering about his view. He wanted me to stop taking my meds during the day while on my trial. He stated that he would put me back on now but plans on taking me off meds during the day and hopes to get me off the meds altogether by usinmg sleep medication. Probably like you, I put the pain out of memory during the day as I work through it but when I stop, the pain is terrible and I can't get relief. I almost feel like since I work and work long hours, some people think I must not hurt that bad.

 

I hope your weekend goes well and you get time to relax some. Take care of yourself.

 

Posted 5/23/2009 5:43 AM (GMT 0)
Cshelp,
Each pm doctor seems to have his/her own procedures. Some do regular urines, some random, and some none. Many have some kind of pain contract.

I had one of the high tech interventional pain management docs who did urines from the intake on. Every time. And he was the first pm I ever saw and yes, I felt like an addict. I guess I had never been in the place with a doctor where I wasn't trusted, but being a CPP has changed all that. Add to it my financial pressures, and soon loss of health insurance. I've already had a couple of "looks" from pharmacists as I've asked about medication programs for the uninsured. It's an extremely difficult thing to do when you've been a professional all your life, and now find you're on the other side of the desk or counter.

Sadly, we don't have much choice. But remember regarding the urine screen as long as you can show you have prescription medication you should be ok - although I know there are certain areas of medicine where being on narcotics might negate you doing that job.

I am so glad you found this site, too. Sounds like a weird chat room you stumbled into before - and probably not helpful (or even hurtful) to any CPP's who were there.

PaLady
Posted 5/23/2009 4:35 PM (GMT 0)
The last PM did a urine test and that cost me 300+ dollars out of pocket. The next one she did she didnt charge me anything. I guess the urine samples and the pain contract scared me. I kept reading it over and over again. It did make me feel like an addict. I cant work as much as I do anymore. Last noc was bad, I hurt and I simply took the kids to a movie. I have to get ready to go to work in a little while and I hurt all over. I do hope the PM gets me in early in the week, I am to the point of just giving up. I told my husband that the new MD told me that my back is just going to get worse and he said he knew that already. I think he is starting to realize how much harder it is getting on me. I have always been able to go shopping, get my hair done, and do whatever I want, now it is hard to just pay for the groceries. Have a nice weekend.
Posted 5/23/2009 4:54 PM (GMT 0)
Cshelp,
I remember seeing the EOB for the first urine test that pm ran on me. It was several hundred dollars also! When I saw it I nearly freaked, as insurance was denying coverage due to it not being medically necessary. I called the pm's office and was told I wouldn't need to pay those costs, that they take care of that. Thankfully. So maybe call the billing department and see about that $300. Was it in error to charge you, especially without notifying you? Course we don't want to tick them off so it's a Catch 22.

There are several nurses that post here, and maybe some could give you more direct help, but I wonder if there's some area of nursing that wouldn't be as hard on you physically that you could begin planning to move into. I was always lucky in that my work mostly involved sitting and standing - although now I can't even do those for any length of time anymore, and not with any dependable mental clarity. So it's a tough pill to swallow (bad analogy, but maybe appropriate) but we may have to make adjustments in our work in order to stay working as long as possible.

And the financial squeeze, having to shift one's entire vision to the bare necessities - and struggling even then - I sure can relate. I look at my rusting 1998 car and think how on earth will I ever get a newer one? But how will I pay for the increasing repairs? I'm hoping the government comes up with some kind of voucher program for those of us with old cars. Oh, well, enough of my lament! Know you're not alone!

PaLady
Posted 5/23/2009 6:27 PM (GMT 0)
You are a true friend and I wished you lived down the street. I need someone to laugh with cry with and this site is a wonderful place. My nursing job is ok, I am a supv and walk alot and sit at times. I can go hide if I want to. Its when I come home, I walk into a prison of pain and out of the realm of safety I feel. My neurosurgeon thinks its the best job I could have as a nurse. He doesnt know though if someone calls in I have to be the Supv and a staff nurse. Oh boy the next day,I feel terrible. Thanks for getting back to me. cshelp turn
Posted 5/24/2009 1:43 AM (GMT 0)
awe cshelp, I get scared of doctors too, my neurologist always scares me and my
blood pressure is always high when I go see her, so wish you could find an MD
willing to help, but since there are so many specialist it can be hard..I want to
wish you well in your up coming doctor visit and to send you soft hugz and wishes
that you get a low pain day this week..
Prayers and hugz
(hope you don't mind the prayers)
((((((((((((((((((((((((cshelp)))))))))))))))))))))))))))))))))))))))))))))))))))
Posted 5/24/2009 4:47 AM (GMT 0)
Thank you Chartreux,
My neurologist will not control the pain meds, she is very nice and understanding. She knows what I have been thru. I see her on the 27th and am scared to death. The last couple of appts were canceled because the office wanted money from all the appts from the accident, when I talked to the nurse and told her why I wasnt paying them (the girl took 100% fault in accident) the nurse replied "We gotta keep the lights on at the office somehow" I felt so low to the ground. She embarassed me and made me so angry. I was going to stop my seizure meds, but then I called for a refill and the office called and told me they would refill them but the MD wanted to see me. My BP has gone up, I usually run 100/60, the last visit on Thurs was 108/86 thats not normal for me. I will see what she says and I started to make payments again. I will vent to her and see what she says. As for the pain doc I will be honest but I have to explain all the side effects of the Amitripyline and Neurontin and see what he says. I was at work tonight and I should of had a diaper on. I have so much gas and the diarrhea it is pathetic I have told 2 docs about this and the pharmacy and no one will do anything Why? So they think I am lying. This is embarassing. My husband and kids think it is gross. Have a nice weekend cshelp
Posted 5/24/2009 5:13 AM (GMT 0)
Whitebeard,

I hope your pain gets better. I am thinking about you and am praying for you. I didnt want to bother you but you did say T12 ruined your nursing career. Can you tell me how the pain felt and what symptoms you had. I have never spoke to anyone with a T12 herniation and maybe that is why the doctors dont understand the pain that it causes. My neurosurgeon told me prior to the surgery that this herniation was very rare related to the rib cage protecting the spinal column and that these herniations dont or shouldnt exist. he had only done 3 other surgeries in this region and felt confident and it did work. After the accident he felt reluctant, wanted to wait and didnt make any guarntees and when he did fo the second surgery, he brought in a special spine surgeon stuck needles in me all over my body to monitor the spinal cord. I wish you the best. cshelp
Posted 5/24/2009 2:16 PM (GMT 0)
Hey cshelp,

I am a retired RN and know exactly what you are going through. I had a back injury and ended up with surgery which put a stop to my ICU nursing career. I went into home health and by the time I retired, some twenty five years later, I was the administrator. Still, between the back pain and the fibro, I couldn't work past the age of 50. Last year I put my license into retirement, which was a very hard thing for me to do, but I did it, knowing full well I can never work again. I am 57, on disability and take percocet every four hours for the pain.

My heart goes out to you cs, I will be praying for you and hope that things get better for you. The pain doc I have does a urine once in a blue moon but you still feel like an addict. I know what you mean. But this is the best place for you --with a pain doc. I was hesitant too when my PCP first referred me, but now I am so glad I am there.

As for the snot with the "we have to keep the lights on" comment, I have been there too. Makes you just want to strangle them. But being a Christian woman, I don't. But it gets to ya , doesn't it??

I will be following your posts and am glad you are here and hope for the best for you. Glad you joined our CP family.

Lindaloo
Posted 5/24/2009 3:41 PM (GMT 0)
Hi CShelp, Whitebeard, Lindaloo and all the others who responded in this thread,

I understand the put down feeling when a doc says he can't help. I have been through four back surgeries, four level fusions, nerve pain treatments, chemical nerve ablations, you name it I've probably tried it at one time or another. I finally went to one of the top neurosugeons in this area for an update on potential surgical solutions. All other surgeries were done in other areas where we lived at the time. This doc looked at everything, MRIs, CT scans, PT history, the works. His take was he could do nothing more to help my back pain. He said if the pains were in the legs or feet he could fix that. But with the pain in back he said more surgery had a very good chance of making it worse with little chance of making it better. Very bad odds. Furthermore, the only surgery he would consider in the future would be to fuse the remainder of the spine, from L1 on up. But knowing my history of failed back syndrome on the existing fusions he would be hesitant if not unwilling to try that. Since he didn't want to touch chronic pain management he just dropped me. Told me the best treatment for my back pain when I was standing or walking was to sit down! Can you believe? The top neurosurgeon for spine disorders tells me the only treatment I need is to sit down when it hurts. I was so deep in depression for days I don't know how I got up again. But I did.

It is really depressing to know that your working career is over (before putting enough away for retirement) and that the rest of your life would be tied to meds. Financially, we are just OK. I spent a good many years getting two wonderful daughters educated, married and off on their own. I was fully planning on recovering all of that expense by working to 65. That got cut short by 6 years of peak earning time. It is just a major change in life that I have come to grips (or gripes) with.

My grandkids are very understanding when I can't show up for their soccer games. They know I have a problem with pain. They are too young to understand all of it, they just know when grandpa needs to rest he can't make the game. My little granddaughter (9 yr old) is so sweet. When we are out walking she always takes my hand when we approach an intersection or a set of stairs. My grandson is always on the lookout for a place to sit if I need it. I love those kids.

I've rambled on but I wanted to let you know what I have been through and I truly understand what you are facing or have faced. We are all in the same club on this one!

M odelmaker
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