Chronic Pain From Liver Transplant
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broice1947 posted:
We'll all, here is the worst thing that has happened, I had another seizure, got taken to the hospital with a broken big toe (so I have to wear this monster thing on my foot) and I have a first meeting with another pain specialist tomorrow. I am bringing the dox from the hospital about the foot. But, nobody saw me have the seizure, and I don't even think I should tell him that I am having them. I am sick as a dog,. I never knew what withdrawal felt like, but these cramping feelings all over my body, the sneezing and yawning all must be part of it. Please pray for me tomorrow at !:00PM EST, that this doctor will help me otherwise I will be left hopeless, I am beginning to think I am worthless. I am hurting so bad and the only people who seem to care are all of you.
Joyce
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ctbeth responded:
Hi Joyce,

Call me if you want. I'm home.
If you don't feel like calling, make sure that you or Alexa calls or emails me tomorrow, ok.

Yes, of course we care about you!

XOXO,

Beth
 
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broice1947 replied to ctbeth's response:
Thank you for being so understanding and empathic.; You are a gem of light and I am battling a demon now. I just hope there is a light at the end of my tunnel. I couldn't write earlier I was in hospital getting my toe fixed. I fell down the stairs and woke up with a broken toe. Nobody was home at the time so I don't know how much time I lost. But both of my dogs were licking my face. I just want the pain to stop.I will be seeing the new doctor at !:00[, they asked me top come at 12.30, I have got to get some help. My scars on my body prove that I am not trying to get something I don't need. I will let you know tomorrow.

Much love,
Joyce
 
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ctbeth replied to broice1947's response:
Joyce,

You MUST tell about the seizures.

I'll talk to you after your appt, okay?

If you can't sleep, you can call me.

I'll have my phone with me all night, in case you want to talk.

I hope that it goes well tomorrow,

Love,

Beth
 
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77grace responded:
Hi Joyce,
I think I replied to you earlier but I don;t think we kept up a conversation,I would like to help however I can!!I have also had seizures!Mine were due to running out of medication I was on and stopped sudenly!!They are very scarey as you know!!!I have grand mal ones ,How bout you?What causes them???Please tell you r Dr.!Why would'nt you??Are you afraid of his respose???I'm here for you Girl.O,K.!!
Blessings 77grace
 
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ctbeth replied to 77grace's response:
Hi Gracie <3

I spoke with Joyce at about 4 this afternoon.

She was very tired.

Would you like me to give her your email address?

I don't do things like that without asking.

She is a total sweetheart- as are you.

Love,

BethH
 
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broice1947 replied to 77grace's response:
Dear Grace,
Thank you for being so kind in following my ride to hell. I so badly now that I went to a doctor who said my pain is muscular skeletal. He also said he never gave anybody methadone. He die, but not nearly as much as I needed. I was on a 350 mg dose. He gave me 120 mgs for 2 weeks. my seizures are not grand mal (at least not yet,. This doctor scheduled appointments for shots 3x weekly. He couldn't understand that the pain was internal. He just didn't get it. I wish I could find a real pain management group. That could treat e effectively. I 10ng methadone pill doesn't work for my pain. I asked him about the seizures and he said it was from withdrawal. This pain mgmt. doctor also wanted to put me in rehab.and in detox. Nobody understands medical maintenance .I wish could find a doctor who would just take me down on my dose. I just want to come down to a level of 200 ,mgs.a day . This is silly I am 66 years old, I really want to live my final years without pain. But nobody but you on this web page are helping me thru this. I wish I could find sympathetic doctor any where. I a very tired,
Those shots really did a number on me.
Thanks for all of your helping to hold me up.
Joyce
 
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broice1947 replied to ctbeth's response:
Dear Beth,

Just a quick note to tell u, I feel pretty lousy today. And my pain is not gone. I am at a level 9 in my pain. This doctor thought my problems were muscular/skeletal. They are internal. He could not understand that.
bye for now
much love and good feelings,
Love you.
Joyce
 
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ctbeth replied to broice1947's response:
Hi Joycie,

With the injections yesterday, I'm not surprised that you're feeling like road kill today.

I'll give you a call tonight, just to check in, ok?

I so enjoyed our phone chat.

TTYL
 
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broice1947 replied to ctbeth's response:
Beth,

I really don't feel much like talking to nite but, these shots didn't do S##t I am hurting more now than before. This doctor doesn't understand internal pain, he is a muscular/skeletal doctor. I wish there was someone in my area I could go to in or around the Albany area. I am stuck like a duck I a muddy pond, I don't have any idea. I don't want to go doctor "shopping" but
what am I to do.
This doctor I saw yesterday bought me down to 40 mgs a day, from 350??? WHAT WAS HE THINKING. He told me to go into a detox,, but they don't give pain killers I in detox and I would probably have to stay for at least 6 months. I don't think Medicare would pay for that. Right now I am in withdrawal, everything hurts, and I am supposed to go back to the sticking doctor on April 1st at which time he will count my pills and give me more injections. They don't work. I have internal pain and he just doesn't understand that. I am in quite a pickle so to speak. I need to find an understanding doctor who also understands internal pain.

Oh well, back to bed to sweat it out.

love you
Joyce
 
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rosielou replied to broice1947's response:
I hope you don't mind me cutting in, but I've been following this for awhile and praying for you. Then this showed up in the news, is this similar to what was part of your initial trouble, maybe not the eyes, but the syndrome? It sounds just awful and I'm so sorry for everything you've been through.

http://www.thedenverchannel.com/news/cu-doctor-uses-amniotic-film-to-save-sight-of-actress-afflicted-with-stevens-johnson-syndrome
 
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broice1947 replied to rosielou's response:
Dear RosieLou,

Yes, that is the reaction a get to contrast dyes. codeine, morphine, suboxone, and Amoxicillin. It starts oput like your are burning under your hands and feet. Then it starts blistering all over your body especially around mucus mucous membranes. It never hit my eyes (Thank God), but it swelled my lips badly and my genital mucous membranes. It lasted until I got to the hospital where they pumped me full of Benadryl and saline solution and gave me more methadone. And, that was why they chose methadone as a pain killer for me. I was in hospital for about two weeks. I still bare the scars of SJS.

By the way those blisters on the actresses face may never go away.
.
Thanks for your information and for caring enough to think of me..
Joyce
 
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broice1947 replied to ctbeth's response:
Beth I would call you but my phone isn't working properly.
But, wonder of wonders, He changed my prescription to 120mgs. per day. That is 3 pills 4x a day. But he stuck me again times and I go back again tomorrow for more shots.
He is trying to find the nerve to block the pain. Hasn't happened yet.
At least he gave me a higher dose of methadone. I am still going to see the other doctor. I had faxed over all my records from all the hospitals I had been to, and I should be receiving a call from their office for an appointment.

120 mgs is nothing to sneeze at, but it doesn't make the withdrawal symptoms go completely away. Hopefully tomorrow he will realize blocking the nerves in my back are not going to help me.

I should tell you that I know a lot about drugs, after my open-heart surgery (when I was 15) I was put on morphine for several years.
About 4 years later I was put on numorphan now known as Oxycotin, diiaudid but I was medically dependent for several years. Then I tried getting off all pain meds and the doctors gave me a strong hypnotic sleeping pill. Thad didn't work so they put me back on numorphan (now known as Opana). Then 30 years ago, I came upstate from NYC to stay, and I was still on dilaudid , finally I went to a pain mgmt. doctor who put me on methadone,
That is where my problems started. I have been in pain since I was 15 years old. Now that I am a Senior, they want me off all pain meds. They think that my problem is caused by the medications. Let them walk in my shoes some day, they would know how I feel,

Anyhow, tomorrow I go back for a series of shots, they hurt, one of them numbed my leg. The doctor says he has been doing this for 30 years, he doesn't think there is one person who he can't treat with needles in the spine at $20.00 per visit. I live on social security. How much money does he really think I have??

Anyhow, Beth I am still in withdrawal but not as bad. I might be able to sleep more than an hour tonite.

So my dear friend, I hope my phone starts working again later.

lovexxxxx
Joyce
 
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broice1947 replied to broice1947's response:
Hi my dear friend,

Well as you all know by now my doctor increased my methadone dose to 120mgs. per day/. Guess what?? I am still in pain and in withdrawal. Yes it is true that he had me originally on 40 mgs per day, that was bad. Now I am on 120mgs per day, I should be feeling better., but I am not. Didn't sleep, was rocking and rolling about all night. II don't want to tell you all the disgusting stuff that s happening to my body, So I will leave it up to you to figure that out. Lots of needs to go to the lue and it came out both ends. My pain is still an 8-9.. and yesterday as I saw the doctor for my shots in my back, he said "it just might be your liver". WELL WHAT THE HELL HAVE I BEEN TELLING HIM??? So today at 2:30 I am to get more injections in my back. He says it is for diagnostic purposes, he is trying to find the nerve that will block the pain. So I will go and get stabbed in the back 5x again today. And, if he sees that none of these shots are working, I still have to come down to a comfortable dose of methadone. He said to go into detox, but in detox they give nothing for pain. What a difficult place I am in. I am so shaky that my typing is going one letter at a time. When I am well, I type 80wpm. Right now, maybe 3 wpm
I am sneezing and yawning, but the funny part of this is I wear dentures and when I yawn my teeth pop out. Same thing when I sneeze. I am so messed up, I am just praying that something good happens for me. So keep those prayers rolling in.

Realize, I am 66 years old...never used illegal substances. The doctors call me a medical miracle, but they got me strung out on pharmaceutical drugs. Making me as they say "medically dependent. I hope today I will see some light at the end of a tunnel, and I am not talking about that" white light"
,, I have been there several times.

So off to Mengele's office again.

Love
Joyce
 
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smann68 replied to broice1947's response:
Joyce,

I have also been keeping up with you and I just want to tell you how sorry I am with what you're going thru! I will continue to pray for you.

You're doing very well considering! Hang in there, things MUST get better. I know these words do nothing for you, I just wanted you to know I care.

Susan
alwaysinpain