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Pismogirl 06-21-2014 08:12 AM

Feeling lost today
 
Hi there,

I usually post in pain management but since I have chronic pain I have wandered over to this forum as well.

I'm not sure if what I am feeling today is due to the fact that I don't have my regular medication. PM office called THE day of my appt/refill (second time in a row) to say doc left on emergency and wouldn't be back until Tuesday. They only do paper scripts and their remaining physicians and PA's are triple booked. So basically I was sol.

Now, they just did this my last appt so I've learned how to get through it. Life won't end over it but it sure does remind me how bad my cp is.

I feel very lost and emotional over it today. I'm 34 but feel like I'm 75. I'm sure you all have much worse conditions, in fact, I know from your posts you do. So please excuse my whimpy diagnosis.

I have bulging disks in my lower back and moderate/early degeneration. I just got a very fast run down of this from the PA at the office so I don't know much but they mentioned L4-5 and L5-S1. I think. My pm will obviously cover this all in greater detail.

I've had back pain all of my life but didn't see a doctor for it until 5 years ago. Prior to that I did yoga like a fiend and that really helped. I mean I lived a very active and healthy life with moderate pain.

For the last 5 years, the pain has been severe and I saw a doc that simply shoved pain medication at me but refused to do imaging. I asked her to send me to the pm and I'm getting the answers I need so that's a positive.

I guess when I go without my medication like this and I can hardly move I wonder.....is this my life now? I'm sure I'm experiencing withdrawals all though I'm sleeping well, taking (Tylenol pm). I'm taking Imodium so that helps things stay normal.

I am normally on norco 10/325 4-6 x's day depending on pain levels. My PC that just loved to give meds but not answers had me on 8 a day. Pm doc said woah! Please don't take that much and asked me if I thought I could lower my dosage. I said I'd try and it worked well.

I'm sorry for babbling. My mind is racing and I'm just so worried this will never be properly managed. I wonder if seeing a pm is even the right choice? My goal is to be off medication but how? I guess I wonder a lot now that I foresee this is my future.

How did you all cope with realizing your cp will most likely be a forever thing?

cspineguy 06-21-2014 11:18 AM

Re: Feeling lost today
 
Hi Pismogirl,
Sorry you are having a tough weekend, I think most of the people hear can feel your pain. I don't think it's right that they cancel your appointment with no medication, that is cruel. My pain center sets the appointments so you go at least a few days prior so that this kind of thing doesn't happen. In fact a few winters ago we had a big snow storm on the way and they called everyone who was due for a refill during the storm come in and gets the prescriptions all set.
As far as your other question, I guess I sorta new to the chronic pain too, been about two years. For me it's still tough as I clearly remember all I could do and mourn what I can't. I'm also in the middle of getting on SSDI and that is so much fun!
Really hope you do well through the weekend, and maybe they can work out something for the next time like either having your appointment earlier or at least having a prescription left for a least a few days to get you by.






[QUOTE=Pismogirl;5299081]Hi there,

I usually post in pain management but since I have chronic pain I have wandered over to this forum as well.

I'm not sure if what I am feeling today is due to the fact that I don't have my regular medication. PM office called THE day of my appt/refill (second time in a row) to say doc left on emergency and wouldn't be back until Tuesday. They only do paper scripts and their remaining physicians and PA's are triple booked. So basically I was sol.

Now, they just did this my last appt so I've learned how to get through it. Life won't end over it but it sure does remind me how bad my cp is.

I feel very lost and emotional over it today. I'm 34 but feel like I'm 75. I'm sure you all have much worse conditions, in fact, I know from your posts you do. So please excuse my whimpy diagnosis.

I have bulging disks in my lower back and moderate/early degeneration. I just got a very fast run down of this from the PA at the office so I don't know much but they mentioned L4-5 and L5-S1. I think. My pm will obviously cover this all in greater detail.

I've had back pain all of my life but didn't see a doctor for it until 5 years ago. Prior to that I did yoga like a fiend and that really helped. I mean I lived a very active and healthy life with moderate pain.

For the last 5 years, the pain has been severe and I saw a doc that simply shoved pain medication at me but refused to do imaging. I asked her to send me to the pm and I'm getting the answers I need so that's a positive.

I guess when I go without my medication like this and I can hardly move I wonder.....is this my life now? I'm sure I'm experiencing withdrawals all though I'm sleeping well, taking (Tylenol pm). I'm taking Imodium so that helps things stay normal.

I am normally on norco 10/325 4-6 x's day depending on pain levels. My PC that just loved to give meds but not answers had me on 8 a day. Pm doc said woah! Please don't take that much and asked me if I thought I could lower my dosage. I said I'd try and it worked well.

I'm sorry for babbling. My mind is racing and I'm just so worried this will never be properly managed. I wonder if seeing a pm is even the right choice? My goal is to be off medication but how? I guess I wonder a lot now that I foresee this is my future.

How did you all cope with realizing your cp will most likely be a forever thing?[/QUOTE]

tortoisegirl 06-21-2014 03:02 PM

Re: Feeling lost today
 
Agreed it is ridiculous to leave you without your pain meds, especially last minute. Did you tell them that would leave you in withdrawal without your pain meds? What did they say? In a situation like that my PM office would likely have me come pick up my prescriptions without an appointment, either having that doctor sign them before they left or having another doctor their sign them. They even plan ahead when one of the three doctors will be on vacation to ensure they can fit all the patients in.

Especially since this is the second time they have left you hanging, I'd try to find a new one. There should be no problem in going to initial appointments with other pain doctors and asking what their treatment plan for you will be. Just don't sign any contracts or accept any prescriptions from them. Also, build a reserve supply of at least a few days of medication. Tough I know, but its better to save a few pills a week then to go completely without. You can probably do this when you start back on the Norco, as after being off of it for days, you need to start slow.

From what you say, it doesn't seem like a reasonable goal right now to think about being off of pain medication. It is however a good goal to get your pain better managed. Has your PM doc discussed their long term plan for you? I understand the need to get your Acetaminophen amount down from the 8 Norcos a day, but decreasing the dose in a patient with already poorly managed pain without adding something else in doesn't make since. Another red flag for this doctor.

I think seeing a PM doc is definitely the way to go with chronic pain (as well as adjunct providers as applicable to your condition, such as a counselor, alternative medicine doctor, specialist for your condition, etc), but maybe not the doctor you are currently seeing. It took me several tries to find a good pain doc. I only did the initial appointments with the others as it was clear from the start they were not going to be helpful in managing my pain better. Thankfully the practice I go to now is amazing and has helped get my pain under reasonable control.

Coping with chronic pain for me has come over time. I have learned to accept that this is the situation I have been given and I have to make the best of it. We may not have a choice in our pain, but we have a choice when it comes to how we choose to cope with it, what our thoughts/mood is about it, what we will do about it, etc. I try to find joy in the little things in life and not dwell on the forever aspect. I actually don't think it will be forever as something has got to come along in my lifetime, but for the near future, yes.

One day at a time. I think once you are able to get out of withdrawal you will feel better. Withdrawal can cause anxiety. Do something for yourself today to try to relax. Maybe a soak in the tub, a sweet treat, whatever it is. Hang in there! Best wishes.

Pismogirl 06-21-2014 04:07 PM

Wow, cspineguy and tortoisegirl you both rock!! Thank you for your replies!

I took a nice long hot bath and then pushed through walking with my baby. I'm glad I wore sunglasses because there were definitely points in that walk where I cried from the pain. But I made it through! I did half of our normal walk as not to go overboard without any medication on hand.

You're both right in that it's just not okay that my doc has done this. I've been so afraid to say anything about it with how much power they seem to have over us.

And saving medication away is something I just have to do for my own well being. That's been suggested before and I thought I couldn't do it but here I am without medication and I'm still alive. Lol So I can forego some along the way for the benefit of times like this.

I did find it odd that they decreased my meds so fast but just thought he was looking out for me. I do now realize he could've incorporated several different medications to make that transition easier.

I'm going to be very honest with him on Tuesday and let him know that, so far, I think we're moving in the right direction but that continuously running out of medication and going through withdrawals seems very dangerous and continues to set me back several steps each time it happens.

As of now the plan is to go over the MRI at Tuesdays appt and discuss options from there. He's mentioned nerve blocks but said that was something for "down the road". He hadn't seen my MRI when he said that so I'm not sure where we go from here.

I like his overall demeanor and outlook but maybe need to really tackle the scheduling and my medicine concerns.

Pain level is actually pretty decent right now. I'm at about a 5-6 and that's really rare for late afternoon. I've got tiger balm patches all over my lower back and leg and am just taking it easy.

I really appreciate hearing your personal stories and advice/thoughts!

Thank you both!!

cspineguy 06-21-2014 06:41 PM

Re: Feeling lost today
 
Glad you are surviving, but sorry you have to deal with this, as it really is not right. I just remembered at a recent appointment with my primary care doctor, we were just talking about things and I mentioned a few months ago my new insurance gave me a bad time on my medications. They required a pre- authorization in order to fill them. I've been taking the same pain medications for almost 2 years and this was ridiculous. The pharmacy for good about it and just has annoyed by it all, but their hands were tied. After thinking about it and knowing it would take at least a week a so for this to get straightened out, I had to pay out of pocket full price and not go thru the insurance. We'll when I told my doctor this, he was not happy and thought is was awful that they would put me through this. If I hadn't paid for them I would had not only suffered thru the pain, but withdrawal.
I would definitely talk to your doctor and see if they can either make sure your appointment is in enough time in case so you can reschedule if possible or if there is a way your normal prescriptions could be left for you at the office to pick up, even if it's only enough to get by until you can see the doctor.
Again, hope you weekend goes ok and take it slow.

Pismogirl 06-22-2014 10:18 AM

Doing okay today just high pain levels. It's abnormally cold day where I live so that's not helping.

I just realized something when looking at my script bottle. It says "take 1 every 4 hours as needed for pain" I wonder if since I've only seen this doc once (saw the PA second time) that they aren't aware I take the full dose every day? Maybe since it says "as needed" they assume sometimes I have some remaining?

They've only done a UA once so far (which seems odd because there's signs all over the office that say they test before giving out every script. Wonder if that's just to divert drug seekers?) and so they don't really know my levels.

Now I'm worrying because I'm thinking if they weren't aware I'm taking it round the clock as prescribed that if they do a UA this time there will be little to none in my system. I would think all that matters is what my rx says which is exactly what I took.

All this pain management stuff truly confuses me and you would think it wouldn't. lol

gmak 06-22-2014 10:59 AM

Re: Feeling lost today
 
Hi Pismogirl, Im so sorry that you are hurting & having to go through this & hope that you can get your medicine on Monday! Over the years, i have had similar times when i had to go without my meds for pain when unforeseen things happened like a fire in another dr suite in my drs building & the fire dept shut down the building & allowed no one to enter for 3 days after & then the receptionist died & her mom is the office manager so office closed for death & funeral & these events were both last year. But, two times in a row & not making any provision to call the medicine in or offer to work you in with another dr seems odd & would make me feel like no one was looking out for me or paying attention to my pain management needs & this would make me definitely ask the dr face to face if this was a fluke or their did their protocol break down & see if an apology or sufficient explanation is offered so that i knew it wouldnt happen again. I hope that your MRI report will show the cause of your pain & that it can be treated somehow so that you never have chronic pain again! I went to a spine only neurosurgeon for evaluation of my MRI & myself & after having 4 lumbar surgeries previously years ago when my babies were tiny & he & 2 other spine NS's felt that staying in pain mgmt was best for me now & im so glad i obtained their opinion & if i were you i would at least go to a spine specialist neurosurgeon & let him evaluate me & the MRI reports & give his recommendations for treatment and if he recommends pain mgmt i would ask him for a referral & go see the pain dr he suggests & see what his treatment ideas would be for me & then decide about possibly changing drs.
God bless you pismogirl & i am burning up its so hot here & i wish i could send you some warm breezes to help your pain or vice versa would gladly accept some cool ones from you! Lol I went through all my back journey a little before & with my children & my heart goes out to you & wish i could be of more help but we'll be here for you anytime!

Pismogirl 06-22-2014 01:52 PM

Thanks for your respond gmak! I definitely need to talk things over with my doctor. My appt is not until Tuesday and the receptionist said Friday that all doctors and PA's we're triple booked. My doctor only works in that office Tuesdays and Fridays. So I've prepared myself for having to tough it out until Tuesday at 10am when my appt is. Today is a rough day with pain but I don't have any other WD symptoms which seems weird to me because I'm not taking the Imodium that I did the first day. I'm having a hard time sleeping but that's only because my 4 mo old son is going through a growth spurt. My husband works two jobs so I care for our son 24/7. I definitely cried a few times today over the pain and not being able to rest. It's just so depressing to hurt so badly.

gmak 06-22-2014 03:32 PM

Re: Feeling lost today
 
Hi pismogirl, I truly remember what it is like & understand & know just how hard it is to have bad back pain & have to take care of the baby! I was 26 & badly injured, had two lumbar surgeries, then married & one year later had my first child! Ouch, when i finally would get to lay down thats when my back would just scream at me with pain i guess because i was so busy all day i couldnt even take time to notice & i couldnt sleep but was so exhausted & i used to cry & say i want my mom silently to myself i hurt so bad at times. But i made it through & you will too, we are stronger than we know sometimes especially when it comes to our children. But i still feel very bad that you are hurting so much without medicine & wish i could help more than to say i know how it feels because we all hurt differently but pain is pain & it translates & praying for you.

Shoreline 06-23-2014 12:30 AM

Re: Feeling lost today
 
Hey Pismogirl, I would definitely take GMACs' advice and find a spine surgeon. I have no doubt your PM doc will look at them and make some recommendation either against surgery which he isn't qualified to do, or for surgery which he is just as unqualified to do that. Its not like he can say you need surgery and some surgeon is going to do it without looking at the films himself doing an exam and coming to his own conclusion. Docs do this all the time and its wrong, particularly GPs' when going by some radiology report. I haven't met a surgeon that gives more than a brief look at what some radiologist thinks where GPs completely depend on it. You have had doc treating your for severe pain for months on end without ever bothering to look at why your hurting, That's flat out bad medicine, so would a PM doc discouraging you from getting a surgical opinion. There are less invasive micro surgeries available that weren't around years ago. Given the lack of diagnostics, and there is more out there than the one mri or CT you had done that can be done if that test doesn't explain your pain. But leave it to a surgeon to order the right test. Given all that, I don't understand why you would think this is something that cant be or wont be fixed at some point, who has told you this cant be fixed or you have to live with it forever? The Endo that gave Norco out like candy is why there is such a problem with prescription meds in this country. It seems their is no middle ground any longer, Either total recklessness in prescribing or ultra conservative to the point its hard to understand how a doc can sleep at night knowing he saw someone in anguish and did nothing.. The longer you mask the pain with meds without knowing if surgery could help, the less likely surgery will help. Pain can and will imprint into nerve tissue and even if they are able to reduce a bulging disc compressing a nerve, masking that warning sign that something is really wrong for months or years can do more harm than good. We all feel pain for a reason, to let us know when something is wrong. We can't blame the doc for everything, sometimes you have to push the issue and demand they do diagnostics rather than simply take more and more medication without a clue why you hurt. Sorry about grammar, I got about 2.5 hours sleep and don't even remember writing this. Hopefully its easier to understand now that I have corrected the obvious grammar issues. Take care, Dave

beamybea 06-23-2014 07:23 AM

Re: Feeling lost today
 
Hey there-i hope you are managing ok til tomorrow.
I dont have much to add, I agree with everything that people have told you in their responses. I just wanted to lend my support and wish you well. I hope things go smoothly at your appointment with your pm doc. Let us know how it went and know that you arent going it alone! We are with you! Bea:)

Pismogirl 06-23-2014 08:43 AM

Thanks beamybea! Today is odd for me because the pain is really bad and the mental part of knowing my appt is just around the corner has me really focused on it. Just knowing I will have the pain relief I so desperately need.

I tossed and turned all night but did get some sleep in. I was taking Tylenol PM the other nights just to knock myself out through the pain but I didn't like the feeling it would give me the next day.

So no Imodium, no tylenol pm just ibuprofen, hear packs, tiger balms patches, hot baths and rest.

I will say I feel grateful the withdrawals aren't worse given I've been on high doses of this med for 5 years.

I just can't believe the horrendous pain from my lower back to my right foot. Even my right arm hurt last night. It feels like my nerves are exposed to the air, if that makes sense?

My pain is a 4-5 while on the daily norco so knowing it could get this bad just makes me so grateful there is relief of some form.

Thank you to the other posters that mentioned seeing a spine specialist. I will definitely look into that! I will update once my doc had thoroughly went over my MRI with me.

My mind just won't stop racing on the what ifs tomorrow. His office has been pretty bad with my chart since I started and I worry that if they do a random UA before I can even see him he won't understand why the meds aren't in my system. Does that make sense? I just read so many horror stories. Yes, it's a simple you were to see me on Friday so of course I haven't had my meds but my chart was so messed up when I saw the pa last they didn't even log that he cleared me to take 2 more tabs per day. I had to basically argue with her until the office manager confirmed it.

I'm sure that fear is more the anxiety from not having my regular medication playing mind games with me.

They never ask me my last dosage and haven't done another UA since day 1, so I'm hoping theres no misunderstandings before I can explain all that I went through this weekend due to scheduling mix up alone.

I'm going to try a walk again today. Even if I don't get far the fresh air and sunshine helps.

Thanks so much everyone!!

My mind is just so focused on this pain :(

Pismogirl 06-23-2014 11:29 AM

Well, they called to reschedule again. Only this time to an appt first thing tomorrow morning! Thank goodness, my heart basically sank when the office manager started with "unfortunately, we need to reschedule your appt...." Phew! Went on the longest walk I was able to and feeling okay :) The sun is shining so I'm going to try and soak up some vit D! Have a great and as pain free as possible Monday, friends!

Pismogirl 06-24-2014 01:48 PM

My appt went so much better than I could've imagined! My doctor was very apologetic for the rescheduling and briefly/professionally shared that he has some medical issues going on right now. He made sure before I left today to have his staff note that, in the future, regardless of who I need to see, I am to be seen in time to always have my refills without lapse. He was very stern that it didn't matter how busy they were.

He wants to continue with the norco and an anti inflammatory for the next month while I complete my physical therapy. After that we'll see how I feel at that time. He said he'd like to focus on my SI injury first as he feels it's the least invasive way to start. Then we'll focus on my L4-L5 bulging discs.

I felt like we had a very great appt today and I think, for now, I'm going to give his approach a try.

Barring there's no being left high and dry on refills again re: withdrawals, I think we have some good plans set in place.

I got my medication this morning and I feel like a different person. I can actually do my dishes, make my bed, shower without sitting down.

Thanks for all the support and advice, everyone!

*excuse any errors in my medical terms. This is all very new to me!*

cspineguy 06-25-2014 02:15 AM

Re: Feeling lost today
 
Glad you made out ok and that your doctor realized what a bad position they put in you. Hopefully this will not happen again. I always give people the benefit of the doubt and realize we are all human, but if it keeps happening then I go someplace else. I always remember when i first moved to my current home their was a pharmacy basically across the street, so I used them. I always felt the staff their was rude and the last time I used them the pharmacist for so obnoxious and really broke HIPA laws, yelling over the counter about they type of medications I was on. This for me was the last straw. Their was another pharmacy about a mile away, and I thought, I'm not only a patient but I am their customer and I don't have to give them my business. So I changed and the new pharmacy has been so good to me.
But, I degrees....Hopefully you feel better! I have my monthly pain management appointment today, not expecting much in changes, as my medications are pretty stable (best combo we have been able to find) and after changing a few times, not ready for any changes right now, plus I have an injection scheduled for next week and they usually don't like to make too many changes when they are trying other treatments.
Hope you have a good one!
CSG


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