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  • TDS Moderators: AlphaMethylPhenyl | Eligiu | deficiT | paranoid android

Chronic Pain MEGA Thread

Okay guys- I called the patient advocates at my health insurance company and told them what was going on and they got me an appointment on Monday with a different Doctor. They also got me an appointment in March with a neurologist. That was the soonest available date a neurologist could see me.

But at least I managed to get two new doctors to have a look at me and hear what has been happening to me! Without a referral from my Pain Management Specialist! That is fantastic! The patient advocates even offered to help me find a new pain management doctor if I want. I'm thinking about it.

Pray for me my friends. I am scared badly.
Thanks to all whom answered here.
I appreciated it more than you will ever know.
God bless.

Ps: I am here for anyone who needs to talk about their problems also. I'm a good listener.
I know we are all dealing with a lot in one way or another here.
Love and hugs to you all.
 
:! Sorry, but much has happened since I posted here Thursday night.

BTW, I get "Chronic Pain Mega" and "Pain Management Mega" mixed up sometimes. I always kept in touch with PAIN PEEPS on PMM thread. When it went to the current version (VII?), Znegative made the thread update. It seemed that our PEEPS had problems being directed to the updated thread. Meanwhile, sadly Znegative (RIP) died. Our PMM kind of faded and we all seem to have disbanded.

We need a HOMECOMING, of sorts, to somehow bring together PAIN PEEPS for chat, laughs, cries, and most of all...SUPPORT.

I must admit, I don't respond to as many posts, because I've seen a pattern of "shit-posting" supposed "pain folks" since October 2016. No doubt, some are legit. Others are obviously NOT. I think there may be a connection to the shuffle over on the SOCIAL forum. I have no proof, nor do I infer malice on my part. I just don't understand why ANYONE would want to MOCK legit folks who are only looking for answers. People in pain are just trying to navigate this tough road of pain management. Many "shit posts" are long-winded and use the same vernacular in their extensive posts. I've felt, IME, trolled and made fun of...even mocked for whatever reason.

If my theory is solid, I ask WTF do trolls get out of this? Is your life that fucking empty of purpose that you get off by fucking with CPPs? If so, may there be a special hot rock in your future. Or better yet...May you live to know the degree of suffering that I (and so many others) exist in every miserable breath of every miserable moment of the day?

I try to be the change I want to see...far removed from Ghandi...just Dixi=) I try to give others what I'm looking for...comfort in the shit storm of life, encouragement to do all you can (and then some)...and the much needed dark humor and irreverence to survive. I'm here to listen and to talk. I'm here to comfort and hopefully to be comforted. I'm here to laugh and to cry. I've "met" MANY good folks and I am thankful to have BL. They let me be ME. I don't sugar coat turds and sell them for truffles. Never have. Never will. =D

My story is complex, even for myself and the surgeons who've brought me this far. I came to BL because other chronic pain boards didn't want me. They told me I'm too blunt, graphic and real about my disease. They told me that I scare the hell out of people with my facts. I also express myself in a very visceral way...trash talking, I guess...I don't even realize how much I fold the word "fuck" into my vocabulary. I have a potty mouth...shoot me, please. I could apologize, but it's just me...I won't stop. I am REAL. My disease is REAL. My suffering is REAL. My need for answers is REAL.

Rant over for now...Painful One, I'm happy to hear that you sought out an advocate. I look forward to your update upon seeing this new doctor. Ironically, your post (which I questioned authenticity) is very similar to what I've described. Again, no offense, if you are authentic. I'm suspicious, by nature...life lessons and all. I'm sure time will tell. I sincerely wish better days for all who exist in unrelenting pain. I send you (((HUGS))) too.

Meanwhile, my mom (91) died again on Thursday night, while my husband and I were called to her side. She'd gone into yet another insulin coma. Honestly, I pray for mercy through peaceful death for her. She came back though, full of the piss and vinegar that provide the will to FIGHT! Meanwhile, I'm still fighting my choked colon and bladder. My GI called in colon prep yesterday to try to move the partial blockage. (yay me)

Folks always tell me I'm full of shit. I can reply "Yes...I definitely am!"

Y'all have the best day you can have, whatever your situation. 8(
 
Dixi you ever got around trying that liquid parrafin i suggested? Lube a colon that stuff! Its like olive oil. Ever tried drinking olive oil? No its not a joke..
 
Dixi
Sorry to hear bout all that happenings...
Hope u feel better soon even just emotionally..
 
Dixi I am so sorry to hear all you are going through. I hope you can get some relief from these
digestive issues, blockages, knots. I really feel for you. Im sorry about your mom. That is a great sign that she
came back filled with piss and vinegar! Awesome!

I'm sorry if I have been too long winded or given the wrong impression somehow.
Rest assured that I would never, ever think of trolling people with chronic pain, disability or anyone else for that matter. No!
You will see- time will show that I am a true chronic pain/ disabled/ multiple illness sufferer. My life is not really a life.
I have only left my house for absolutely necessary appointments in the last 9 years. I'm pretty much home bound and a lot of the time bed ridden. I gotta go soak my ass in some Epsom salts right now. Damn bed sore things.

I have no one to talk to about my chronic pain and health conditions. Not a soul.
I have no support at all. I try my best to do just as you said- "Be the change I want to see".

I'm still having a very hard time with my feet and hands. I can barely walk on my feet. It fucking hurts- stabbing, pins and needles,
and burning. I have broken every glass in the house being unable to hold them with my hands.

I send comfort and love to everyone. I am very loving because I had an 11 day Near Death Experience when I had the Liver Failure in 2009. It has made me see things from another perspective. I also use humor to get me through. Those are the only coping mechanisms I have. Meditation has helped me a lot but it is hard to do with so much pain constantly.

I wish you all well.
 
:) Thank you, Steph! I send positive vibes to you as well. No, I've not tried the paraffin. Is it the stuff that hardens to wax to seal jars of homemade jelly? Surely it can't be, or it would be poop wax!

Something's gotta give. HOPE it's not the wall of my colon! Prep has NOT moved blockage. TMI, but just spewing swamp water and HURTING so bad! These apathetic fuckers are going to let me die a torturous death at this rate. This is the same GI group that assisted my major surgery in 1994, yet leave me hanging!

Painful One...You can tell I type much like I talk, which is MUCH! Chronic pain can be isolating, so we have to fight to engage in some semblance of life. I am here, if you need to talk or to vent...to laugh or to cry. Reach out anytime. I hope that Monday brings you some good news in your effort to get some answers/possibly new doctor.

Damn...I could use an advocate on all fronts. Good for you, girl!?!
 
Thanks Dixi. I appreciate that SO much. My God, I was an insurance broker for 8 years and I could not remember how to get myself an advocate for all these years! Fuck me! It is a good thing someone mentioned that to me. To call the health insurance advocate.
(Like I had done for a million other people).
I have had such a struggle finding a doctor even (I can't think)! That is why I gave that other person using heroin a tip to go to the patient advocates at the hospital. Having the insurance advocates help me reminded me of how I FINALLY got to a Pain Management Doctor!

I have my appointment in an hour and a half. I don't have any idea how I'm going to explain all that is happening to this doctor.
I'm nervous, anxious and feel nauseated. I worry about what kind of horrible tests they may put me through but I need answers!

Dixi I am so, so sorry to hear of your current situation. Damn that hurts. Turn away any of you sensitive ones, this is too much information but Dixi, if you have not tried "manual" so to speak evacuation. Get some gloves sister and get that shit out!
Shit Dixi, all we can do is laugh. I don't know how else to handle this mess.

Kill me! And don't no one be sending fucking suicide squad to my house. People in major pain just say that. We cannot help it!
Family members do not get it! They have police showing up if you yell out "Kill me" just to relieve some frustration!
 
Dixi- do not eat anything until you get things moving.
Try smoking a cigarette, the nicotine helps me in that way.
Sorry friend, I'm trying to think of anything to get you out of that agony.
 
Thanks, PO...I've been on clear liquids and applesauce since Friday. I'm drinking nothing but water, besides the prep and MC. I'm missing my drug of choice---caffeine! I don't smoke, though.

I'm not a big eater, anyway, or I'd be fucking starved by now!

The blockage is not in the descending colon, so even ET (the alien) couldn't manually extract! I've phoned home to the GI's office. I've just returned from CT scan of abdomen she ordered done at my local hospital. (GI is 2 hours away) I don't have results yet, but waiting for further instructions.

Good luck with your appointment. First and foremost, try to calm yourself, seriously. Damn doctors love to label women as "emotional, hormonal, dramatic" when it should be their job to find what causes us to get exasperated. Make clear and concise notes (bullet points) of your issues, without getting bogged down. Be kind and patient, but don't be intimidated. YOU hire them, not vice versa.
 
LOL Dixi- that is pretty bad if E.T (the alien) could not even help you. Gave me a chuckle.
I thought you might have already thought of that. I'm so sorry to hear the blockage is so high up.
That is true agony. They have you drinking that chalky crap huh? Sorry. I hope they get you some relief pronto!
Is your stomach swelling up? I worry about peritonitis. I have had that and it is the worst thing ever.
Not what you want to hear. Sorry. You are going to be okay! Right away! I COMMAND it!
Please keep me informed if you are okay. I will be praying for you. I wish I could do more.

I am waiting on test results and further instructions too. I found an AWESOME Doctor! He is really on the ball.
He listened well and asked a lot of questions. He was very thorough. His jaw did drop when I told him that I had been back to
my pain management doctor (the only Doctor I had- until now! Yeah!) and told him about the "attack" and that he told me that this
was my fault and nothing or no one could help me. This new doctor thinks I might have had a stroke. He assured me that he is not leaving me. We will find some answers together. He will help! That in itself is just such a relief. At least I have a smart person
(Doctor) who can help or find help! And he is not going to desert me! Thank God!

He took blood and is doing lots of blood tests, he is getting me an appointment for an MRI right away. He is also trying to get me in right away to a neurologist. He is going to be calling with results and instructions tomorrow - it sounded like.
Whatever this is- it has got to show itself somewhere.

I love you all. Sending much love and comfort to you all.
 
The fact that you are wanting your drink of choice- caffeine is a good sign.

When my dad was in the hospital he called me and spoke so urgently and seriously and he said
"Oh thank God you answered! Sweetie I NEED YOU TO BRING ME A COKE NOW!!!!!
He knew I would be the only one who would smuggle him in a coke. LOL!
He was pissed that I would not help him escape from the hospital. I told him I was working on getting him home.
I had to have some equipment installed and I had the guys working on it right then but he got such a look of disgust
on his face and turned away from me. :( he told me that "they come at night- the vampires."
I knew exactly what he was talking about.
I remember thinking they were vampires too when they came to take my blood all night.
It made me cry. My poor dad.
Needless to say, I had him home the next morning.

When he stopped asking for coke I knew we were in trouble.
 
What a shitty day. I'm awake again at 4:30 a.m sharp. No chance of going back to sleep. I'm so nauseated and still have a bad headache.
I feel so crappy and depressed. WAY depressed. It is so HEAVY. Like I think this worse depression is some after effect of whatever the hell has happened to me now.

Does anyone else feel like they are cursed or something? Like every fucking thing that can possibly go wrong does and it has been that way all your life? I tell you guys- this is my last life here! There is NO WAY I AM reincarnating here again. My worst nightmare is to die and find myself being born as a baby here again. Count me out for that shit! I will take dust in the wind over that.

Dixi are you okay? Worried about you.
 
:\ Hey PO...No, not okay. I'm headed to Jackson for barium enema (yay me!) this afternoon. Can't imagine how they'll get accurate (if any) images, if my colon is full of stool. I can't do colon cleanse...already tried the gallon, with no results.

I have an extremely high threshold for pain that I've developed over decades. I'm hurting, but nothing scream-worthy yet. I've got to find/fix this problem to free me up for the shitload (pun intended) of other health issues.

This isn't my first rodeo...um-m-m, barium enema...Oh, God the humiliation of this procedure! My asshole's so tight...I'm gotta wear SHADES! Don't worry about me. I will update when possible.

Take care of YOU...Try to get some sunshine, if possible. Don't isolate, as depression will grow darker. Find something funny and laugh!? Think of me in my elegant hospital gown, with a hose pumping chalk up my ass. You'll be HAPPY it isn't you!
 
Ah Dixi- That SUCKS! So sorry.
I can't laugh at that.
I sure hope they can figure out what is going on and fix it.
Just imagine you are somewhere else. That is not happening to you.
Disassociate. Hope it's over now!

I know, the abundance of health problems is just overwhelming.
I am hoping both of us can get some answers and some solutions real soon.
Hang tough sister.
 
Dixi- are you alive?
Did you get your digestion going again?
I'm wondering if you are still in the hospital.
Let me know how you are doing as soon as you feel up to it.
I hope you are feeling better and things are improving.

How is everyone else? All chronic pain people died on this thread or what?
Where you guys at? Is everyone alright?

Sending lots of love and prayers out for us all.
 
:| Sometimes, death would be welcome!

The gastrografin enema helped tremendously. It took 3 more days to get results. There's nothing they can do except change my bowel med from Linzess to Amitiza, continue Miralax 2 caps/twice a day. The Miralax doesn't help me but GI won't listen. I'm taking the Amitiza since Friday...not much success. Guess I gotta give it some time.

I wondered about you also. Have you started a new therapeutic protocol with your new doctor yet? I hope you've had a reasonably good weekend. We've had a quiet one, in front of the fire, watching movies. It's been nice, after several weeks of stress, tests and worry...if only for brief moments to relax.
 
I know sweetie, I know- sometimes death would be welcome indeed. I feel you. I understand that well.

I'm glad that you finally did get some relief. At least you will not go septic for now. I would keep taking the Miralax.
I learned that it works in a completely different way than the other kinds of anti- constipation medications.
It puts water back into your poops through your digestive tract directly which helps make it easier to pass and move.

You do eat a lot of fruits and vegetables right?

Sorry. I'm sure you know all this and have tried everything. I know how irritating it can get when people suggest you do this and that.
It's like- yeah, I have been dealing with this for years! I have tried and know about ANYTHING that one can try.
So I will not try to advise you. I'm just here to give you some support and a hug. I'm so sorry you are enduring so much.

I pray the new medication will be the one to help! Give it some time.

I'm happy to hear you have had a nice, quiet, stress free weekend after such a rough time. Me too. Just doing the same thing.
I need some time to relax and heal from that severe attack. I have appointment at the end of February for an MRI and I see a neurologist in early March. I have an appointment with my pain management doctor in a few weeks. So we will just have to wait and see. Good news is that I have not had anymore seizures or that total paralysis thing happen again, or my back going completely out.
I'm feeling better now from that. Those seizures hurt every part of my body badly for weeks. I have my medication back down to my regular dosage. Feeling better from that. I went through some opiate withdrawal. I can see that I cannot do that. It is hard though when it gets that bad. I have no idea what else to do.

Just taking some deep breathes and resting. I am exhausted.
Hang in there everyone.
I send you lots of love.
 
Hope everyone is doing well. Sending you all love, a warm hug, and encouragement.

I'm very frustrated with having slurred speech from the car accident I was in (I'm sure multiple concussions from passing out and hitting my head on concrete did not help) but I have injured the part of my brain where speech and movement and other things are affected. They call it post concussive syndrome.

It has gotten somewhat better over the years but it still sounds like I have had 2-3 hard alcoholic drinks at best.
I get treated like I'm just wasted and don't know what is going on and am not aware of how others treat me.
I do have memory problems but that does not make me oblivious.
My family will not let me drive and I'm so tired of being in this jail cell of a house.

It saddens me very much to see how so called friends and family would treat another human being that they think is unaware of their treatment. It disgusts me. I am ashamed for them. To me, this is akin to running up to an elderly person using a cane and kicking it out from under them as they hit the ground amd break a hip and they run off laughing.
NOT funny or cool stuff at all. Shameful!!

Having a brain injury is very difficult. The speech problem gets so much worse with stress, fatigue, self consciousness about the problems, not enough sleep, wrong diet, etc. etc. it is not caused from me being wasted.

Right after the car accident in like 2006- 2008? Somewhere in there. My speech was knocked out completely for a time and it was so badly slurred when it did come back. I was on no medications at that time.

I just needed to vent about this. I'm so tired of being treated like I'm retarded. I'm so tired of family and friends treatment of me.
 
Hey, post concussive, I have a prolonged version of such.

It's bullshit really, & my accident was only august 2015.

First time back here in a Loooong time.

Heya Dixi,

Rtp x
 
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