Extremely frustrated with pain management

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KathyMeoowz
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Extremely frustrated with pain management

I am so frustrated don't know what to do!!! I have been having issues and was in and out of ER the last time I was admitted had several tests run and was diagnosed with my chronic pain not being controlled (which I have been telling pain management for months). Went to pain management where they refused to adjust meds telling me they will only change my Fentynal patch which causes extreme itching to Methadone which made me extremely ill. I saw the PA and she told the doctor and he agreed to see me in a week then 5 minutes after leaving the office they called and said doctor refuses to see me and will not change medication despite the hospital saying my pain isn't being controlled. I filed a formal complaint against doctor, but am stuck until they change pain management groups.
I am currently stuck in bed, well my recliner due to 6 back surgeries. Plus they changed my neurtostimulator to a Nevro system which isn't working and the rep has had me turn off to see if that is causing new pain.
I had gastric bypass less than 2 years ago and lost over 200 pounds and for the first time in my life I am underweight and malnourished because I am in so much pain I simply can't eat. My neurosurgeon is saying that since losing weight my body is now dealing with pain differently and pain management doesn't seem to understand or care. I just feel stuck, alone and in excruciating pain in tears.

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2dgs4cmpany
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Hugs

Sending you a hug dear Kathy. I can't imagine the situation you are facing. There is nothing, nothing worse than when pain is uncontrolled and no immediate relief. Until the pain management Doctor situation is solved, is your surgeon able to prescribe? Is your general Doctor? I just feel how much pain you must be in. And then to have to deal with this..

Several well written forum members have methodically listed the best course of action to communicate with doctors so that relief and remedy for you is achieved without emotion. It requires strict adherence to your pain management Doctor. Obviously this is not going to work for you, so hoping you can approach other doctor/surgeon to get you remedy until a long term relationship can be established with new pm.

Anyways, I was struck by your pain and felt so sad for you, sending you hugs.

breathing

William Garza
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Kathy

Sadly this is becoming more our lives
The extreme up and downs of docs dealing with us in certain ways,
Mine had to. Buck the system i was in because of inadaquate sense of urgency.
As 2dgs said, sometimes,we have to bite the bullet to get any reliief.your,not alone in this
Many here have walked in your slippers
If you can
Try and,first to find at least some,form of nutrition
Your,body chemistry is important to keep balanced.
A hand,full of,grapes,if possible to start?
Maybe an adult shake?
I,had to for,a while because of meds upsetting my systems.
Please,keep us in your loop and know we are here for yah!

KathyMeoowz
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Thanks

2dgs4cmpany thank you for the support. I am trying my best to hang in and wait for the response from the insurance for an out of network pain management group. The rep from Nevro even had me turn off the new system to see if that could be attributing to the additional pain which it isn't, but not providing relief either. My pcp does not prescribe any pain meds saying that is what pain management is for. My surgeon has not returned call which I am guessing has more to do with his office than him. He is the only who has discovered that since the weight loss my body handles pain differently. I'm just in a state of limbo.
William you suggested grapes or shakes which unfortunately my body is just not handling nutrition of any kind because of pain. This scares me because for the first time in my life I can't stop losing weight. I have lost 15 pounds in the last 2 weeks which puts me underweight especially if you subtract the 20 pounds of excess skin doctors say I have.
I am extremely frustrated with little energy to do anything beyond breath. I was fortunate to get social security disability, but then you get screwed with the insurance you have and are given little choice. Then it seems you are punished if you stand up for yourself. Hoping I can wait to see new doctor, but what other options do I really have????

KathyMeoowz

William Garza
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Kathy

Sorry for all the pain!!!
I hope the Insurance Company acts rikki tikki to get you relief.
I understand about the insurances....
High ans dry here..
Left out in the cold....

I i can,make,a,gentle suggestion,?
Having no nutrition is bad for anyone,,worse for us. With weight..i am around 150 to 200 lbs over my "ideal" weight
I try to keep a clean diet, with a once a,week cheat of real ugh food.
I soeak of ice cream n such, but it will put me down for a while.
If you could go to your doc and make,sure the lap band isnt a,factor?
Ime no doc, just concerned.
For now, maybe a adult shake, a little sip?

Pain is a ravenous,beast
It will cloud all,aspects of your life,

PlumbTuckeredOut
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If I may....

I definitely understand your being in pain. Anybody would be! May I suggest another alternative? You can certainly feel angry with this suggestion but anything that can help, right? How about going to a psychologist or a therapist? It would take some time to learn the methods to help alleviate pain but it seems like you're experiencing depression accompanied by anxiety too. Again, you have every right to!

A psychologist can be a shoulder to lean on and an advocate for getting to talk to doctors. While I work with many people needing a supportive ear I have my own psychologist who keeps my world on an even keel. If it were not for him I would have been too terrified to make that initial call to a doctor 5 years ago. He has helped me interpret what doctors are saying so I feel less victimized and he has gone so far as calling doctors for me so he could explain my anxiety.

Also, added to my pain meds I take the generic of Zofran. an anti-nausea med. The pain meds make me so nauseous!

I wish you the best and I hope you are able to take these suggestions in the spirit intended!
Sheila

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

KathyMeoowz
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William

Thanks for the suggestions. I actually had gastric bypass not lap band which has doctors even more confused due to the "altered anatomy ". When I got so sick from methadone they had no idea what was going on and actually thought about reversing the gastric bypass. This unfortunately may still be on the table since I can't seem to maintain weight.
I was able to keep some soup down, but unfortunately abdominal problems persist and am extremely dehydrated and muscle cramps are coming back from potassium deficiency. Adult shakes just seem to make me more nauseous as the surgery changes the way things taste.
Extremely frustrated.

KathyMeoowz

KathyMeoowz
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Sheila

Thanks for your advice.

Zofran works great, but the mint flavor makes me more nauseous. Since the gastric bypass I have been even more sensitive to taste. At one point had trouble finding a tooth paste that didn't make me throw up. Even the bariatric surgeon tells me I am extremely sensitive.

As for pain psychologist, let's just say been there done that. I have been to the pain classes both group and private. They don't seem to work well for me despite the fact that when I was able to work I actually worked in the field. There methods just don't seem to work on my pain issues not that they would now when I am getting zero pain relief. I had one great psychiatrist once, but he actually retired and I just haven't been able to find another therapist I can relate to. I miss my good doctor, he gave the best advice which has always stuck with me..."if you weren't depressed by all that has happened then something would really be wrong." That line came at a time when I really needed that validation of my feelings. I am on Cymbalta and an anxiety medication.

KathyMeoowz

William Garza
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Kathy

An observation
And respectfully.
Were you on opiates for a period of time before the methadone?
Opiate withdrawals, through no fault of your own as you would have been under a docs care
Can throw you for a huge ugly loop.

I lost my appetite,and,was,extremely...ughhh...my body was one way my emotions another and mentally couldnt concentrate.
I hope its something the docs can figure out quickly and get you back to a better level
Take care

Savage
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Hello jamiegrogan and Welcome....

Welcome to Spine-Health
Please click on link for helpful information!

I am not a medical professional. Anything I write is from my own experiences.

Savage
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Hello Kathy.....

Just curious if you worked with a dietician? Before and or after your bypass?
Since, as you said, your issue is different now, where you are unintentionally losing weight, maybe dietician has ideas worth trying.

I am not a medical professional. Anything I write is from my own experiences.

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