What to do?

I know this has been covered so many times on this forum.  I have read a lot of posts by people in similar situations.  I just really wanted to write down what's going on and see if maybe anyone can offer some words of advice.

I have had chronic pain caused by three-level cervical disc disease for 15+ years and now SI joint dysfunction from a car accident a year ago.  I've been to every doctor imaginable.  My family doctor has always given me pain medicine, usually Norco 1 or 2 per day.  She retired and that's where my problems started.

After she retired, I went to her partner.  Because his wife is a pharmacist, he will not write for pain meds long term because obviously he thinks everyone is an addict.  So I next went to my ortho doc, who also professed to be a pain doctor.  He said he would treat me as long as I came to him for follow-ups a few times a year and did his drug tests. 

Fast forward to about a year later.  I called last month to tell him the usual pain medicine doesn't seem to be working as well and only lasts about three hours.  So I was being honest instead of taking more than he instructed.  I figured he would change the medication or maybe increase the frequency.  Nope.  Instead he basically kicked me out and said he would write for one more month of pain medicine but then I have to go to a pain management doctor for long-term care (which is what I thought he did). 

So I called the PM doc.  After going through the phone screening, I was scheduled with the nurse practitioner in SIX weeks and was told I will be given no pain medicine at that appointment and will have to see the doctor for that IF I am approved by the nurse practitioner to enter their program.  I called my current family doctor to see if she would write for pain meds while I am waiting for my appointment.  She said sure, no problem.  I went to the pharmacy and see called in 15 pills.  Yes, 15 pills!  When I called her to see if there was some kind of mistake, her nurse said no and to take Advil or Tylenol to get me by until I see the PM doc.  Very funny... 

I'm now five days away from my appointment with the nurse practitioner and out of pain medicine, so I will sit here in severe pain and not be able to function for the next five days.  And then what happens if she doesn't accept me or says I have to wait another month to see the doctor?  I really can't take this anymore.  I'm so sick of being treated like a criminal.  BTW, my insurance is an HMO, so there is only one PM doctor in the network and out of network is zero percent coverage.  I do not have the money for self-pay. 

Has anyone had an experience like this?  I don't want pain medication to use for fun.  I want it so I can be somewhat pain free and work and take care of my kids.  I don't want to be disabled at 35 years old.  Ugh....

No, the pain doesn't change with certain positions. That's the problem. It's fine in the morning, but by the time the afternoon rolls around, the pain starts. By the time I go to bed, I can't lie down, I can't sit up, I can't stand. It's awful. My muscles spasm so bad. No muscle relaxer has ever worked. The Norco used to work very well, but I guess I've built up a tolerance to it, so now my ortho doc throws me out because I was being honest. I don't know who else to talk to if I can't tell my doctor what's going on and be truthful.

I have been to several physical therapists with no help on my neck. I've been to ortho, rheumatologist, neurologist, chiropractor, and physical therapy. My ortho said my disc disease is moderate to severe but not severe enough for surgery and he said they couldn't even do a three-level fusion, so he wouldn't know where to tell them to start and where to tell them to stop.

I'm just so sick of being treated like this.

I don't want to post my profession, but I will say what I do aggravates my condition because it's high stress and I have to sit in one spot for extended periods of time. I sleep okay when I have my pain medicine and Ambien. Otherwise, I am up most of the night. Like I said, if I get a good night sleep, I feel good in the morning until I start working or doing any kind of activity. If I could just lay around all day, I don't know if I would have much of an issue, but laying around is not an option for me, as I have a full-time job and two kids.

Starmama- Sorry to hear how difficult it is for you to be seen and helped. Daniel's ideas sound like they may help. I have done many of these same things when I had to work under a car dash for extended periods. They did help me some.

Take care,
Bill

Well, I can't figure out how to send a private message on this forum.

Re: e-mailing someone.... you "click" on their member's name and it will take you to their profile.... their e-mail address will be listed there, if they've made it available.

Danielogrady222,

I see that you've already had a couple of posts removed due to violating forum rules.

You said you want to see people become "self-empowered".... that's a great goal... but, for most of us here, we also need a medical doctor as a part of our team.

You also wrote - "Stay positive... a little fine tuning and you'll be able to overcome this". I wish it could be this easy for most of us here.... Most of us try to stay positive, despite dealing w/ complicated health/pain issues. And most of us will not be able to just "overcome" our pain issues.... it's not a matter of overcoming them - but learning to live w/ them and have the best quality of life possible, through a variety of treatments and so forth.

--Tina

Hi StarMama and I too would like to welcome you to the chronic pain forum. I am so sorry to read all of the problems you are having with your drs. It just stinks, the very ones that are suppose to help us tuck tail and bailout when we need them the most.

Whats worse is this upcoming appt and its with the nurse practitioner, ugh. Yes, I totally agree with you that you have built up a tolerance to the Norco no doubt. Working in a high stress job also keeps everything triggered. I worked in a high stress job too and it was rough.

Pain mgt has been ruined in my opinion with all the new rules and guidelines set out by the DEA. Our primary care drs will limit how long they will give pain meds and its always something a step above a Tylenol. Primary care drs say they do not want to be involved with giving narcotics because they do not want the DEA coming in to their office and doing an audit. The drs are scared to death of them and even PM drs are really backing away. Meanwhile because of all of the politics involved the CP patient gets hung out to dry by the very people that is suppose to help them.

I know you said you are on an HMO. You said there is only one PM dr on there too. What about going to another town to see one? That happens to a lot of us when we are limited in choices. Sure we don't really want to drive but if the dr is a good one, then its worth making the drive to see him/her.

I have a lot of arthritis, it is in all of my joints. One thing that happens with me a lot is what I call sore spots, its like I have hit that place on something when I haven't and they can be quite painful. I get this a lot with my neck, shoulders and hips. I am a big fan of Tiger Balm which a rub like BenGay or one of them, Tiger Balm comes in a really small jar and sold in grocery stores & drug stores. They have come out with patches and I decided to give them a try and to my amazement they work. I mean the rub has always helped me to a certain extent. A physical therapist used this on me, that is how I found out about it. If you get sore spots this may be something for you to try. Also alternate using heat & ice. Do not use heat for long periods of time as that can aggravate inflammation. I make my own hot packs by wetting a hand towel & nuking it in the microwave a few seconds being very careful because the towels will warm up and get too hot. I use a lot of Ibuprophen and found it works better than anything for inflammation, found that out when I broke my arm. My BT meds which is Dilaudid did nothing for the pain when I broke my arm, but 4 Ibuprophen at a time did the trick. I was shocked. My neighbor is an RN and told me to try it since my other meds did not work. He said your arm is innflammed and needs something for that. I know non of this is a cure just some things that has helped me over the years.

Since you will not be scripted meds at the appt with PM office, ask this NP to write you a note to give to your dr stating that you were not rx'd meds and will not be until the dr see's you and agrees to take you on as a patient. Then I would call this primary care drs office and make an appt for ASAP, go in and take that note and just say, look I have done everything that has been asked of me and I am still getting no help. I have to be able to get up and go to work every day to support myself, the pain is getting so bad without any kind of medication, I am not sure how much longer I can continue like this and I need my job. Can you please help me until I find out if this dr is going to accept me as a patient. Worse case scenario is wait one evening and go thru ER and see of you can get a script for a small amount. If they ask why you have no meds just tell them you are waiting on an appt with a PM dr.

Please keep us posted on how you are doing, as we really care. Take care...Susie

Hi StarMam, I am so glad to hear you got the appt moved up a little. Who knows perhaps with a call from the PA to your primary care dr, he/she will write a script for meds until you see the PM dr. This is why I suggested asking the PA to write a note for you.

Please keep us posted on how you are doing. Take care....Susie