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Hi Everyone I am Miss Suzie. I am new!

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Posted 4/7/2009 8:28 PM (GMT 0)
this is my first post and forum. my son got me started.I have had chronic back and leg pain (and groin for the past three years) for so many years I've had multiple spinal surgeries and one hip replacement. Every morning the pain wakes me ,generally from 3 a.m. to 5 a.m. and i want to scream but the tears start rolling and i just cry and call to my husband for the ice bags. sometimes i use heat. I can't get up and walk for hours. There are times i stay in bed all day, especially if i take a lyrica. I was on oxycontin but came off it last december with the help of my pain doctor who gave me suboxone,which provided an easy withdrawal - only one day of a bad reaction. I'm still on the suboxone and lyrica. I have felt very depressed lately. The pain prevents me from doing the creative projects i love to do and i have a few situations that are causing depression. Today the pain was intolerable and I've had crying bouts all day. It is so debilitating and draining living with pain I have more, but I'll post again. I'm also lonely with this pain, so i hope someone responds. thanks, trying to see the sun, miss suzie my back pain has been approximately 15 years - the groin and leg have been 5 years now that i try to remember - but not that it matters. pain is pain , we all know that.
Posted 4/7/2009 9:32 PM (GMT 0)
Do you use just a primary care physician (PCP) or a Pain Management Clinic situation? (often pain is all the clinic environment does)

Since you already use the Lyrica, and included feeling depressed in your post, I would suggest you ask your doctor treating your pain if Cymbalta might be of benefit to you.

While its main area of use is as an anti-depressant, it is also known to enhance Lyrica for SOME people. Not sure how much Lyrica you take, whether Cymbalta is appropriate in your situation at all.

Know that your statement 'pain is pain, we all know that' is not true. I am proof of that, and likely you are took since Lyrica is used to treat neuropathic pain.

Neuropathic pain is 'ghost' pain. It isn't really there, your nerves are just sending signals to your brain that there is pain. And no matter how smart we think we are, our brains are really stupid in this area - our brains believe our nerves instead of the obvious truth.

All the best wishes to you that you find a quick resolution to your aches and pains of your situation, both physical and mental.
Posted 4/7/2009 9:58 PM (GMT 0)
Hi, Miss Suzie,
Welcome to the CP forum, although I'm very sad to learn you have pain. I've not been able to write many welcoming posts as I'm kind of sluggish myself right now.

We aren't doctors, but this is a great support group, and I hope you will join us.

I think I understand what your mean by saying "pain is pain". Yes, there are different types, but chronic pain of any sort unravels our lives. Tony's suggestion of an anti-depressant is worth discussing with your doctor. Many of us (myself included) take one because the physiology of pain acts to create depression - let alone the losses we have to deal with in life.

Again, welcome. Glad you joined us.

PaLady
Posted 4/7/2009 11:04 PM (GMT 0)
Hello Miss Suzie,
I too am so sorry about your C.P. but you have come to the right place for support. There are so many others here that are just like you and I here who understand what you are going through. The old saying "It takes one to know one" takes a little different meaning here. It's more like "It takes one who knows C.P. to know one who has C.P." Depression unfortunately goes hand in hand with C.P. I don't think there is anyone alive today who has constant pain who doesn't become depressed! I too take a anti depression medication and have taken many different ones over the years to help me deal with the lonelyness and tragity that is Cronic Pain! What happened with the oxycontin and how come your Doc changed you to Suboxone if you don't mind me asking? There are so many other pain med options or have you tried most of them with no relief?
Anyway, I hope some of our other friends chime in to say hello, I'm sure they will! There is something about having C.P. that makes people compassionet and that really shows on their Forum. I'm so glad you found us and please keep posting!!! I know you are new at it but luckily you have found the best C.P. Forum right off the bat! Welcome Miss Suzie.
Your new Friend,
Pete
Posted 4/7/2009 11:22 PM (GMT 0)
Tony, what I am experiencing is hardly "aches and pains", it is very serious, and no, there are no quick resolutions for it. My first post did not detail my situation well enough, so let me explain further:

From birth I have had spondolthesis which was aggravated by gymnastics all through my childhood and high school. I had my first spinal surgery when I was 16. Overall I have had 6 spinal surgeries. I am fused from S1 to T9 (from the bottom of the spine to the shoulder blades).

I have a degenerative spinal disease and I have had surgery for kyphosis, scoliosis, spondolthesis, and spinal stenosis.

My pain started in high school, just a constant pain ever since, but it did not become debilitating until 15 years ago. I have had 5 major spinal surgeries in the past 10 years, I have titanium rods throughout my spine.

I am having severe complications because my recent hip surgery is effecting my spine, resulting in even more pain.

I have tried Cymbalta, I did not feel it was effective for me. I mentioned in my first post that I take suboxone for the pain, but I also take dilaudid as well for when the pain gets really bad.

I did not explain all of this in my first post, I was experiencing an extremely bad bout of pain and could not stop crying. I was just rushing to get my feelings out hoping someone would respond. I wanted to explain it better so you guys can better understand my situation, and realize I am not suffering from just "aches and pains".
Posted 4/7/2009 11:33 PM (GMT 0)
Miss Suzie,
Wow. You have been through it all, haven't you? And having your spine fused at so many levels, then hip surgery....I truly feel for you.

Please feel free to vent here anytime. We do understand - especially understand those bad days. It just seems like several of us are having them together. Maybe we just need to hug eachother closer in that boat of pain, not that it cures things but it helps a bit.

There are many anti-depressants and I don't want to harp on it. Just mentioning it because it may help your mood some, although it may not help the pain. And there are many types of anit-depressants, cymbalta's only one. Many other classes of them. Sometimes even the older ones are more effective for certain people. All these mediation issues are so individual.

Today I think I may be crying with you, but this is your thread so I won't go into it. Just know you're not alone.

Hugs,

PaLady
Posted 4/7/2009 11:45 PM (GMT 0)
Hey Pete thank you for the warm welcome, and thank you to everyone else who responded.

about the oxycontin, I had been on it for 6 years and I got to the point where it was making me feel like a wet noodle. My whole body was constantly fatigued and I could not get out of bed, I felt like a vegetable. It was giving me memory lapses, I was forgetful, I felt loopy, it made me extremely emotional, and with all of these combined I could not take it. Not to mention the fact I have been trying raise three kids who lost their father 6 years ago. The medication was effecting my mothering skills and I did not want to live that way, my children needed me to be fully there for them and I wanted my mind back.

Suboxone was used by my pain doctor for the oxycontin withdrawals. I am currently taking dilaudid for pain. My doctor only prescribed 4mg a day, which is not nearly enough, I used to take 240mg of Oxycontin a day. I know I need to speak with my doctor about this, he has been very strict with medications because I told him I wanted to get off the oxycontin. It's obvious I need to talk to him, it's just my life has been so stressful with my pain and other VERY serious circumstances, regarding my daughter and my husband, and just life in general, which I will explain further in another post. So things have been pretty difficult for me, but I am very grateful that I found this site, you guys seem so generous and welcoming. Thank you all!
Posted 4/7/2009 11:54 PM (GMT 0)
PALady you took the word right out of my mouth WOW!!!!  Miss.Suzie may I also Welcome you to this forum!  and I will say it again WOW!!! you have been through allot! Well you sure have came to the right place! There are allot of very fine caring, compassionate, folks here, and we will listen and support and maybe sneak in some advice from time to time, if you want it! I like everyone else hate to hear that your having so much pain, but I to am glad you have found us at this fourum! I am sure if you come here often enough you will find us to be like family! But this family really does understand what your experiencing and going through, because we are all going through it too! The saying "Misery loves company"  well......what better company to have than company who is in Misery with you?? We can be just one big miserable bunch togethjer! rolleyes ...........   Well maybe that didn't come out quite right but ........You know what I mean? smilewinkgrin

Welcome to the forum. Miss. Suzie!

And wishing you only the Best

White Beard

Posted 4/7/2009 11:57 PM (GMT 0)
Miss Suzie, I also want to welcome you. I think you have found a wonderful group of truly caring and compassionate group of people -all who share a common ground-chronic pain.

You certainly have been through alot, with your history and the major surgeries you have had. I do not know your personal situation or your support system that you have available to you. I think you will find support here. You can feel how much they care !!!

I am sorry that you are having a hard time. I wish I knew the answers to lessen your pain. Are you in a pain management program.? It is possible your meds may need to be changed or adjusted to help you get some comfort and relief.

Please continue to post and let us know how you are doing.
Anice
Posted 4/8/2009 2:03 AM (GMT 0)
Are you still on Suboxone? Because it shouldnt be mixed with other narcotics, cause it blocks full opiods like diladid. And also if your taking high doses of the Suboxone it wont have the pain killing effect. It's usually taken in smaller doses more often to kill pain. I have been taking it for pain, and to get off of methadone, and it has helped me great deal in pain. I'm sorry it doesnt/didnt help you. But sometimes doctros will prescribe very small doses of other narcotics to suboxone for the plcebo effect. Cuase it's too small of a dose to do anything, but the doctor probably wants you to think your getting some narcotic in your system to trick your mind. Because if this is what your doctor is doing, then it's time to switch doctors to find something else that would work. But just be careful cause eventhough the suboxone is blocking the narcotic, you can still overdose on other the narcotics cause its still in your system somewhere.
Posted 4/8/2009 3:16 AM (GMT 0)
Miss Suzie,

I am Lindaloo and one of the moderators of this Chronic Pain Forum of Healing Well along with Chutz, the other moderator. I just want to say welcome, but to also tell you how proud I am of the members of this forum. These people are the most caring, most intelligent, most supportive, most intuitive and just plain wonderful group of people anywhere in the world. You have really come to a good place. I am so glad you posted, but I am so sad for your plight.

Your history sounds very involved and very painful, but I hope that you will get some much needed help in the near future. No one should be facing a future of crying because they can't get out of bed for hours. That's not living and I only hope that somehow you can find a pain management team or physician that can help you improve your medication coverage and overall coping skills with the pain. I hate --absolutely hate-- to hear of someone suffering like you are on a day to day basis in so much pain.

First of all, I send gentle hugs your way and secondly, I send you the strongest prayers for a better outcome. And third, I offer you my buddies, my pals, who have already welcomed you so graciously and opening. Listen to them, There is a wealth of experience and understanding here. At the very least you have a shoulder to lean on during your worst moments --someone who will listen and offer support.

Please keep posting. I am so glad you are here. I look forward to getting to know you and you getting to know us as well.

God bless.

Lindaloo
Posted 4/8/2009 3:19 AM (GMT 0)
Hi Miss Suzie:

I can't write much now cuz I'm reaching my end point for the day in terms of pain but I saw your post and did want to respond. I'm really sorry for everything you've been through and for your continuing pain. I feel for you and understand to some degree. Wowser..you poor thing..6 spinal surgeries?! Eek. And about half of your spine is fused?!! My goodness...that is serious.

Are there any other medications you could try? What was it about the oxycontin that you didn't like?

I take methadone and morphine for my pain and was on nortriptyline which was GREAT for nerve pain but it caused me to develop QT prolongation which is a pretty serious heart problem and can cause syncope and even heart attack..so I had to stop taking that med. ;( Bad, bad pain after that so I ended up having an SCS trial and perm. SCS implanted on 1/16/09. Has anyone talked to you about that possibility?? Or a pain pump? Not sure if that is an option with all of your fusions...

Well..just wanted to let you know that you aren't alone. You're among friends here!!

PS- are you young? I'm 29...are you in your 20s or 30s??

Hugs,
Danimal

Author of Chronic Stimulation- a blog about living with chronic pain and a neurostimulator

http://chronicstimulation.blogspot.com/
Posted 4/8/2009 3:51 AM (GMT 0)
Hi Miss Suzie:

I just wanted to say hi as well! I totally understand the uncontrollably crying bouts as it happens to me often too! I have had 23 back related surgeries and my husband calls me his bionic woman because of all of the metal used to reconstruct my low back and all of the implanted devices. I have been a member of this group for only a month or so, but I have found a lot of support and care from these wonderful people, and I hope that I have been able to help them a little as well. When I can't stop crying, the first thing I do is come here and post and very quickly I get wonderful responses from people who really understand what I am going through and I read them over and over until the pain subsides a little.

I will keep you in my thoughts and I pray that tomorrow will be a better day for you.

Lorie
Posted 4/8/2009 4:16 AM (GMT 0)
Miss Suzie, it is good to meet you but terrible circumstances. I am so sorry that you have had to, and still do, go thru all you do. Pain is never fun. If you take some time and read around I think you will find people are great here and have way more advice and experience than I do. I wish you the best and hope you can find some relief soon.
Posted 4/8/2009 4:17 AM (GMT 0)
Sorry, Miss Suzie.

You took 'aches and pains' as a literal meaning, and I intended it more general. That's why I specified 'aches and pains of your situation' not just 'aches and pains'.

My apology if my words upset you. I meant nothing degrading in my choice of words.
Posted 4/8/2009 2:38 PM (GMT 0)

 

 

Miss Suzie,

Just wondering....why did you get off the pain pills?  Was there a reason?  And did the Suboxone help at all with the pain?  I see many people write about Suboxone for pain relief and I don't see how it would help with anything but withdrawls...

 

Me.

Posted 4/8/2009 6:22 PM (GMT 0)
Miss Suzie,
Hello, nice to meet you, sure wish it was under better circumstances though,
there are a lot of nice folks here and we try to support each other..Hope you
get a low pain day soon...
{{{{{{{{{{{{{{{{{{{{{{{{{{HUGZ}}}}}}}}}}}}}}}}}}}}}}}}}}
Posted 4/8/2009 10:47 PM (GMT 0)
uniquelyme,

Buprenorphine, which IS a narcotic, is the main igredient in the Suboxone, but it's just mixed with naloxone to stop abuse. Kinda like how methadone was once just for addiction, it's now being used more and more for pain. They're doing clinical trials right now on Buprenorphine patches which will be just used for chronic pain. and this Buprenex which is also Buprenorphine for chronic pain also. It has all the same effects and side effects as any other narcotic, but it's made so it blocks out other narcotics cause of the way it sticks to receptors, and when snorted or injected, the naloxone stops it from having any effect. But when it's absorbed under the tongue like it's suppose to, the naloxone has absoutly no effect. Actually right now they're also doing trials on oxycodone and morphine mixed eith naloxone/naltrexone to stop abuse and tolerence also. I hope this helps some, it is a confusing drug to explain, it's actually very awesome the way it works, especailly that it works so fast cause it goes straight to the blood stream from under the tongue. And doctors are starting to prescribe it more for pain, cause they like that people cant abuse it and you cant get a tolerence to it. I really love the fact that when I take it at night, I know I will wake up in the morning not feeling any withdrawals like I did with other long acting narcotics. It is a very very expensive drug, but it is going generic this October, so more and more people will be able to afford it. I started taking it cause I had way too much of a tolerence to opiates, and it wasnt helping at all with my pain, and I tried to taper off, but it never worked, so I researched the Suboxone and decided to try it, and it hs been a wonderful experience for me. hope this helps some.

hellokitty
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