Extremely frustrated with pain management

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KathyMeoowz
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Joined: 08/16/2015 - 1:54am
Savage

I saw a dietitian when I first had the gastric bypass, but have not seen one since then. That is an excellent idea and will request a new appointment with a dietitian. I need to figure something out. Thank you for such a great idea.

KathyMeoowz

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KathyMeoowz
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Joined: 08/16/2015 - 1:54am
William

I have been on opiates for a very long time however my medications have not changed yet still having what you say may be withdrawal. I have gone through withdrawl before with medication changes, but my meds haven't changed they just don't work for some reason. I just haven't bounced back from this surgery 5 weeks ago and it was by far the most "simple" nonevasive. I really want to slap every medical professional who said life will be so much better once you lose weight. As if that was my only issue. I actually had a few doctors that said my chronic back pain would go away when I lost the weight. Thankfully I have an amazing neurosurgeon who laughed and said you have so much damage which will not simply go away, glad you want to get healthy but this isn't a miracle.

Still waiting to hear from insurance if my out of network referral has been approved or not. Trying to be patient. ...

KathyMeoowz

William Garza
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Joined: 06/19/2008 - 5:23pm
Opiates

10 plus years for me
Ups,and,downs
I hated when my body started acting like one wasnt enoungh..ughhhh
Talked with pcp he mentioned early on it would inevitably happen..
Sigh.

I had the docs tell me the same thing
Lose weight
Feel better...
Yeah..riiiight.
I hope they find out very soon whats gone awry with your systems!!

PlumbTuckeredOut
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Topping Out

I've been on a stable dose of MS-Contin for about a year. For the last two months I was hurting but it didn't occur to me that it was the meds. Many nights I just lined my bed with cold packs and tried to fall asleep. But most nights before hitting the sheets I'd write a short email to my pain doc describing the day. The last week or so I became terrified I'd start crying at the Pain Clinic because they weren't able to help me anymore!

Doh! I didn't realize I had grown tolerant of the dose. The sure sign I was told was I was no longer experiencing the side effects of nausea and constipation. But because I had been updating the doc often he had followed along. Today he switched me over to OxyContin which I'll start tomorrow- I'm hoping it will be as helpful as the morphine had been. But it was almost a year before I developed a tolerance for the morphine.

Then the bummer! I was told by office staff that my pain doc, the guy who I felt I could communicate with so well, he's starting his own practice in another state. I'm in a pain clinic setting but I had worked hard to earn this doc's trust and I really like him! He's so young I hadn't thought about him starting a practice on his own so soon!

Sheila

In three words I can sum up everything I've learned about life: it goes on.
-Robert Frost

Meydey
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Joined: 07/12/2015 - 11:36pm
Hi Kathy, I hope you get in

Hi Kathy, I hope you get in with a new PM asap..so sorry that you're going through all this. Has anyone brought up a pain pump for you? Stimulator trial didn't work out for me and my NS suggested a pump after my last fusion. I feel fortunate to have it..I know I'd be bedridden if it wasn't for it. I still have pain and take Norco and other oral meds, and I've also had other problems creep up besides my lower back. Do you like smoothies? I'm worried that you may be malnourished. I hope you were set up with a nutritionist to help you. Has anyone suggested Phenergan suppositories..yeah I know it's no fun, but if you are so nauseous that you can't hold anything down then perhaps it's worth looking into. Please keep us posted and take care.

Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.

2dgs4cmpany
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Joined: 01/31/2014 - 3:12pm
So many good ideas

Gosh, I adore thiscompassionate site! So many great ideas listed...but geez Louis, SHEILA, to lose your pm on top of all this..grrrrrrr and waaaaaaa. I can't even imagine. I wish remedy and healing to all. I want to echo a few things:

Nutrition: I can relate to this obstacle. Now keep in mind I'm built like a lil brick house..I weigh much much more than I look because I'm solid. I've been in excellent physical, mental and nutritional shape my whole life until my spine decided to wreck it. Talk about unpleasant: first losing the ability to run. Oh the pain. I cherished running. I gave that up for good after second fusion. Going into my fusion this coming Friday..I have been in bed pretty much for last four months. Now my good Hdl has done a nose dive followed by triglycerides. I'm getting lectured on food. Keep in mind I have actually lost weight during all this..because I lost my beautiful muscles. I gave up alcohol. But due to lack of walking and fitness I'm at risk for heart disease. Jeeeez...like I needed one more thing. Anyways, I am fortunate in that I have a fusion scheduled and hopeful it is last. Hopeful it will enable walking which should solve fitness and numbers. A nutritionist is invaluable and has been helpful.

A therapist has been helpful to me as well. Granted, I only went in last few months. I only went about four times. Instead of focusing on my chronic pain depression, she helped me work thru a death in my family (suicide) from many years ago. In doing so she actually handed me some grieving tools which in turn helped me to grieve my fitness. Now I can see patterns and feel capable of handling good or bad outcome of upcoming fusion. Therapy always a good idea. If it is a poor outcome for me this surgery, then I will pursue this as a solution to remedy.

Lastly, pain management diary. I think it was Sheila who mentioned in this thread, but William I think has too. What a great tool for you going forward..for all of us. When I walk into a brand new doctor or my year and a half old relationship with my pm..they always see me with it. Some days have epic entries, lol. Most days just a timed account of medicine. If I'm being smart I've chronicled my pain number I was in as I took the medicine. In doing so I can easily point to my pm the patterns of pain control during day but extreme issues at night. He then tweeked my meds to include having extra dose of gsbapentin by my bedside so if I woke in spasms in middle of night, I would be prepared and back to sleep in twenty or less instead of up all night and then the day ruined.

I get the feeling KATHY you already know this, but just thought I would share/echo what was being mentioned and worked for me. I especially liked your turning to this forum. Like I said, I could truly hear your pain and anguish...so I think you are an exceptional communicator. Now we just need to get that skill to your grrrr pain management doctor or hopefully across to new doctor to get you some relief. I'm sure this is a silly question..can the emergency room suggest a new pm Doctor? Do you have capability to get in car or on phone and interview some local pm's. I have to tell you..I've gotten an edge to me about pm doctors now..actually all doctors who are on my team have to meet my requirements, have to get thru my interview. I've been doing this so long I've Realized I'm the consumer. I'm choosing them to help me. After all, it is my life and body and I'm ultimately responsible for its care and remedy. If you can employ this attitude (not gonna lie, you have to have a good ppo insurance) you will get seriously excellent results and along with that, calmness and happiness.

breathing

PlumbTuckeredOut
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2dgs4cmpany

You area wonderfully supportive person! I remember writing this post when I first found out my pain doc was moving out of state and I was scared- maybe even devastated! Now though, I know I'll get through it! I get to email him all the time and that may continue. Also, maybe by 49 I have learned resilliance? (Sorry, with the space bar sticking I'm just giving up on spell check!)

Pain is horrible, nothing less but I have such wonderful, caring friends. I have been working on finding ways to lighten my load too. Being organized so things are not misplaced and are easy to reach. Taking time to take care of myself. About 5 minutes ago I was getting overwhelmed because- drumroll please!- the internet was not loading quickly! Now I realize what I wonderful thing to have the opportunity to complain about!

It would be SO easy to focus on those things I cannot do anymore. I have spent a lot of time in these last few years getting these kinds of people out of my life. I'm grateful that there are things I can still do, and things I can enjoy.

I wonder what I would do if I was given the choice, no more pain if I were willing to give up my friendships, my hobbies, my volunteer work, my dogs. I could have a 9 to 5 job every day with no pain ever or, I could continue on this path. I think I'd stick with this. I have hope there may be a break through in pain treatment. There may be even better doctors. Oh, and maybe there will be even more dogs!

Life is so hard but it could be so much worse! (And I'll have this post to look back on when the days are harder!) (I'm an administrator on another site and I am HATED! It's tough laying down the law!!!)

Thanks Guys!
Sheila

In three words I can sum up everything I've learned about life: it goes on.
-Robert Frost

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