pain and helpless

Hi everyone,

I have been reading all the recent posts and have a lot of tears. I am falling apart and don't know what to do. I have no one to talk to but this forum. I have taken myself off the amitripline. It was helping me sleep, but I couldn't function or think. My abdomen got so bloated with gas and air, I was short of breath. Now the depression is approaching me again. My body controls me and I think I should "throw in the towel". These last five years of my life have been in such turmoil. The neurontin I have been taking just makes me tired and doesn't help the pain.

This is the true story of my last five years. After my back fusion in 2005, I couldn't think straight or sleep. I went to a pyschiatrist and he gave me Xanax, it didn't really work. He increased the dose to 4mg. I was thinking, but I took it for awhile. My job was going ok but I was depressed and they knew something was wrong. I went to bed one night, the next morning my husband found me barely breathing and called 911. I was put on the vent for 24 hours because of my low blood pressure. I was sent home the next day and 6 weeks later, I was fired from my job. My world fell apart. I became confused and started to pull my hair out and itch like crazy. After a couple visits to the ER, I was admitted to the Pysch ward. the doctors thought I was crazy, had a stroke or even alzeimers disease at 36 years old. My neurologist took one look at me and said this is medical not a pysch issue. They poked and proded doing every test in the book. They finally found a lesion on my brain, treated me with anitbiotics and sent me home. After I went home, the marriage was rocky and my family thought I was addicted to drugs, they still think I am crazy. I got a job again after 6 months(my PCP thought I should volunteer and my neurologist said I could get a job) I never went thru withdrawal at the hospital, but never did anyone set up counseling after the hospitalization.

In 2006, my legs started to hurt, then the MRI showed a herniated disc at T10, I had surgery in 2007, had car accident 6weeks later, had more surgery 2008. It helped but the pain was still there. I am rambling and you probably read this before. I went to my first PMS, and when he found out my history he said "We need to get you off these narcotics" He wanted to do injections but I have DDD and I felt threatened, my neurosurgeon called me and apologized. I had my PCP prescribe the Vicodin but she has always looked at me like an addict. I then called my neurologist for anothe pain MD. He referred me to a lady 1 hour away. I went there and she wanted all my records. I got paranoid, scared and thought she wouldn't treat me. I screwed up and ran out of meds 3 days before my refill and went to see her after reading the pysch paperwork and BAM, she put me on a Clonidine patch for withdrawal. She then ordered a back brace and tens unit and was going to inject my L4 fusion site. that is not even where my back hurts.

I went to my PCP and asked her for the Neurontin and Amitripline and she gave it to me and told me I don't do well with narcotics. i ran out 3 days short and that was because bill collectors were calling and wanted money. I had so much guilt, pain and depression, I started to work so much overtime I just did my job and tried to live with all the pain I had. I had no support and no one to talk to. I even told the PMS that I was working to pay the bills, couldn't see the neurologist because of the bill.

Now I have to go to a new doctor next week, am paranoid scared, don't know what to say. I am falling apart. I am even afraid sometimes to post on this forum, because the insurance company will get into my computer. I am going to get the help I need, but I am deathly afraid it is going to take some time. I put that hospitalization out of my head and tried to put it behind me. Now that my pain has gotten worse and my neurosurgeon has told me I have CP, it has hit me hard. I wasn't addicted to the narcotics. I have been labeled that I had an accidental overdose but now that I screwed up with the last PMS I dont know what to do.

I know that my marriage probalby will be over when I become disabled and that scares me. I ahve my beautiful children. I needed to vent while I am sitting here alone. Please dont judge me.  I cried for a month after that doctor dug up my demons of the past. My neurologist knows I am trying to deal with it, but it is hard sometimes, she knows I need to take something for the pain but she won't prescribe narcotics.

Last but least, I have agonizing pain from a root canal from last Tuesday and now my jaw hurts like hell, cheek is swollen, out of pain meds and dont have next appt till thurs. too scared to go to the ER, but will call dentist in the morning.

This is the whole story.

CS-
I think you need to take one thing at a time.

First, I'm wondering whether you're sleeping. I know I get paranoid when I'm sleep deprived & if that's the case, call your neurologist & talk to him about it. He seems really understanding.

The fact that your cheek is swollen could indicate a serious problem with the dental work, so I'm glad you are calling your dentist first thing in the morning b/c you may need to get that checked out.

For the PM, realize that PM's are specially trained & have a lot of experience recognizing drug seekers & addicts. They understand that people sometimes overdose accidentally & know how to tell the difference. So, I think you need to bring your records to the new PM's office. Be honest with him about your past, but let him know that your neurologist thought he could help you & you're hoping he can too.

2 other quick points. First, if you really have such severe reactions to meds, perhaps that is not the right treatment for you. Second, there are a lot of other treatments that just about any PM will want to try before putting a patient on narcotics long term. As far as injections, I get them fairly often & the injection is almost never where my actual pain is. Nerves are very long & are closer to the skin at certain levels of the spine. For example, when I get pain in my pelvic bone (iliac crest), my PM explained that it is referred pain from my lower back (S1), but he cannot get a needle very easily into that part of my spine, so he injects me at L1, T9 or on the side of my body by the bottom of my rib cage. It is the same nerve as what runs to S1 & to my pelvic bone, but he can't do an injection there. It makes no sense to me, but then again I was always horrible at anatomy, and it does work very consistently. :)

Just want to encourage you to have hope for your meeting with the new PM. Not all of them are horrible. One piece of advice I would offer you, though, is that when you are working with a PM, you need to let them know before just stopping a medication on your own. They take responsibility for you when they accept you as a patient & there can be serious negative effects from stopping a medication suddenly. Most of them have clauses in their patient contract stating that patients must inform the office immediately if they intend to stop any medications. Typically, the PM's office would then require you to return the unused doses.

Things are just really strict these days. It has nothing to do with you personally, those are the rules for all of us. But I will say that I really am very happy with my PM. He has worked very hard & I have been able to get off of almost all of my meds (I don't tolerate meds well either) b/c of a combination of an SCS implant, RF, injections, PT & alternative therapies. It hasn't always been easy, but being able to participate more in life is the best gift I can think of.

Wishing you much success,
frances

I went to the dentist and he killed me with the needles, had to redo the root canal and even forgot one canal. He told me the back molars usually only have 2 canals, My luck wouldnt know it had three and he didnt see it the first time. My tooth is killing me. Back to the heating pad I almost fainted in the dentist chair. cshelp

Oh my dental work is the worst!!!!

cshelp: I had a similar problem you did with a PCP I had for four years. It started with the secretary's opinion that I was an addict. Even though my records showed narcotic use but not abuse. She just had to tell anyone who would listen that I was addicted. Caused some problems but she hasn't been seen working there in the last month.

I see a PM doctor and he has read ALL of my records. He didn't say a word and started me on Sympethetic Nerve Blocks with Pain meds. Didn't even blink and eye.

I believe you will find another doctor that you will click with. First point you need to ask for another sleeping aid. I take 100mg of Trazadone and it works wonderful I don't feel hung over or tired during the day with it.......

Have patience and like they said before be honest and up front when they ask you questions.

Cshelp,

As usual, you have been given the best advice possible by all of our friends here on HW.  It is very scary if we have to change PM Dr.s....I had to do that only once in the last 9 yrs.  Don't give up because once you do find the right Dr., he will NOT make you feel like you do right now.  Be very honest about what happened to you, most Dr's who treat CP, know that we aren't addicts....I was always afraid to give in and take more pain meds for that reason, my PM Dr. told me CP patients that stay on prescribed doses can never be addicts! 

I have felt like you about my marriage, but found out that my husbands frustration was that he couldn't fix me.  I took his silence and sometimes rude comments as being a burden to him.....over the last few years and especially since joining HW, we are communicating better and things are back to normal.  Sometimes, I believe because of our pain and own inner turmoil, that our minds make things worse then they are.  Talk to your husband and let him know how scared you are! 

Hoping all works out for you!

XXOO
Patti

This is for CSHELP,  OMG, you have really been through the ringer and I really feel for you.  When you health is declineing and you seem to get no-where I know exactly what you mean.  I have not been well for 10 years and I am sick and tired of it and just want to live my life and have some enjoyment.  I have been on chronic pain meds all that time from oxycotin, morphine pump, fentenal patches and vicodin , delodid.  I have weened myself off of the fentenal as of last july and just now take the vicodin but I am down to 500mg 4xday. and that just takes the edge off.  So I still am in constant pain.

I have not been able to have a job since 2003 because I can not stay well enough to keep a job and that stresses me out and makes my IBS extra bad, I have one of the worse cases of IBS that my doctor has ever seen.

Now back to you, the injections did help a bit for my back pain which is the source of my chronic pain.  The morphine pump took care of the pain but could not handle it as it plugged me up constantly and I was constantly nausiated, so after 3 years of dealing with that I had it removed.

Someone just told me to try acupuncture for my back pain so I am going to look into that, so maybe you should also.  Your never-ending stress is making your pain/depression worse so rent some really funny movies and watch them daily, it really does help.  Laughter heals a lot of things so it is worth a try.  I don't think you need a   psychiatrist at all you just need a friend to vent to and I would love to be that friend.  I dont know if we are allowed to give our email add. but I will it  [email protected]  if you would like to.  Hope you are having a better day today...

Everyone is soooo wonderful here and the advice helps. I believe my husband is starting to realize how much pain and suffering with the side effects is doing to me. My stomach is so bloated, I have gas, but I had to restart the Amitripline to sleep or it would of drove me crazy. He knows I am starving myself because I will not gain any more weight. I already weigh 218 and when I gained weight when I was sick, it makes my back feel worse and the depression sets in even deeper. I was reading on a chronic pain website and I learned some tips when going to the doctor about team work setting up a relationship and strategy of goals. I know it will take a little time with the MD but I am hoping it will work out. It would be nice to have sex,LOL laugh a little and do things with my daughters. I will start making a pain log next week for a daily routine of my lifestyle. I am just trying yo look up some antidepressants but I will first ask her advice. I wont push things with her, but I am going to request a MRI to start with and she can recommend from there. She will know I am a nurse because I fax alot to that medical group for the patients.

Thank you CS, my doc will not give me anti-depressents, or pain meds I am talking about my PCP, I go an hr away to a pain clinic to get my pain meds and they are trying to go down on them.  I cannot live with out my pain meds though.  I have new symptoms and I am not sure what it is but for the past 2 month every bone in my body is hurting so I cant lay any way in bed it feels like there are pressure points on all my bones.  So I am thinking that I might have that fibermilagia or however it is spelled.  Well I have gone for 2 days with no sleep and I have to go visit my friend that is on her last days of lung cancer, but thank you for your help...

cshelp I'm so sorry you have to feel this way.  CP can be so frustrating and depressing that at times I think we all just want to scream at everyone.  I understand I work alot myself in a warehouse which isn't the easiest of jobs but the pay is just to good to let slip away.  Its hard enough going through all this and having to work much less feeling like you are a fly on the wall when your home.  I can see where you husband is coming from to a point.  Just like you he might not know how to deal with such a long and painful event.  If your communication is stable maybe when you feel you are having a low pain day sit down and talk with him.  Heck go get a script for xanax or klonipin so you can do this.  I take klonipin and I don't deal with major issues unless I've at least taken half a tablet.

I wish you all the luck and I will pray for you that your days will get easier.

Laurie

We have been married for 18 yrs.  We also have three children. 20, 16, 15.  Its hard on all of us with my CP.  Most the time they offer to do the laundry, dishes and chores.  They won't let me mow the lawn or go to the grocery store by myself.  My husband and I have the view treat others as you would want to be treated.  My husband had two surgeries in the last year for a torn rotary cuff.  I did everything for him and he always says :I'm glad I married you.  With my pain he is so concerned the only time he gets upset with me is when I don't tell him when I hurt more then normal.

Not everyone can have a relationship like ours.  We have been through some life changing events in our time together.  His father died, my mother died, my health, his health, a child with disabilities, one child is blind in one eye and I have a crazy x-husband.  I never get mad at them, I'm more than likey go to my room and suffer alone until they come in and ask if I need anything.

It took us a longtime to get to where we are today.  It was not easy by any means.  We almost divorced a few times, been in marriage counseling and a few separations over the years.  I finally figured out about 3 or 4 years ago that I can never change him.  I can never put words in his mouth or change his thinking.  If I wanted to be with him till the end I would have to accept him as he is regardless of ANYTHING.  He will always react to stress and situations in his own way as I do, I can not tell him whats the right reaction.

Your pain is at the forfront right now anything can make you holler.  Its not an excuse but its understandable.  This doctors appt or the next could be the one that helps you to find relief.  Then you can deal with your relationship. I'm praying you find it.

Its late and I have to be up for work in 8 hours at 4:30 am... agghhhhh  Work really kills me somedays...

Laurie

CsHelp: Your appointment fast approaches. I wanted to chime in with my best wishes for a good doctor's visit.

Coming from the other side, that of a man, I have had to learn to deal with my wife from the side that I have Chronic Pain. We've been married only six years, and I've been dealing with Chronic Pain since just April '07. I can see both sides. And I can see where the marriage could be effected from both sides.

Now, add into our mix Sleep Apnea. My wife can't sleep in the same room with me right now, since the machine is so loud. Rather than ask me to sleep elsewhere, she drug the extra mattress from downstairs and made herself a sleep space - which I didn't find out about until bedtime.

My point? Well, we are married. Every challenge is a married challenge. We BOTH deal with every challenge, whether it is my challenge or her challenge.

And, since it is a shortterm solution since I'll get my regular machine/mask fairly soon, I'll let her sacrifice this time.

Does this point make sense? Does it relate to you?

Either way and regardless, my prayers go out to you.

As well, how can you miss since Koshka's and Chomp's prayers will be with you as well. Simply click on the link in my signature below, and you will see that their prayers are with you.

Your puppies look just like my Otis and he is a 2 year old lab. He knows when something is wrong and he comforts me. he is a momma's boy. Thanks for the advice. yesterday I was so tired from working last noc I just went to bed and just got up a little while ago. I am sad alone and tired of working so much. the bills got to get paid for my family. this situation is my fault. I will be ok I hope

I wont give up. Life has to get better. I have to go to work but I will post a longer thread when I get home at 10PM. I like talking and didnt take any offense to what you wrote