Hi Everyone I am Miss Suzie. I am new!

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Miss. Suzie
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/7/2009 1:28 PM (GMT -7)   
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.

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/7/2009 2:32 PM (GMT -7)   
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.
Wife: Liz, the choice of a lifetime
Dogs: Koshka & Chomp


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/7/2009 2:58 PM (GMT -7)   
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

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 4/7/2009 4:04 PM (GMT -7)   
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
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections every 2weeks . 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on the aircraft carrier USS John Stennis in port in Japan and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. I am one proud PaPa! 


Miss. Suzie
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/7/2009 4:22 PM (GMT -7)   
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".

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/7/2009 4:33 PM (GMT -7)   
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

Miss. Suzie
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/7/2009 4:45 PM (GMT -7)   
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!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/7/2009 4:54 PM (GMT -7)   
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


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 4/7/2009 5:59:26 PM (GMT-6)


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 4/7/2009 4:57 PM (GMT -7)   
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

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 4/7/2009 7:03 PM (GMT -7)   
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.
26 year old Female , single mother of 2 kids, on SSI for migraines, pain, pancreas issues
All the things broken with me: Migraines, Fibromyalgia, Chronic lower back pain that causes severe pain/numbness/tingling especially to my left leg,Arthiritis in my back, Genetic Pancreatic Divisum that causes chronic pancreatitas, Asthma, Depression w/Anxiety/panic attacks, Bipolar
Prescription Meds:Suboxone 24mgs daily, Cymbalta 60mg nightly, Lyrica 50mgs nightly, Imitrex as needed, Ibprofen 800 twice daily, Zanaflex as needed, Ventolin as needed for asthma attacks, Advair twice daily
Over the counter meds: Benadryl nightly for itching due to meds (not sure which one yet), and Biofreeze  
Surgeries: Gallbladder removed at 15 years old, 2 ERCPs, stent put in pancreas, countless upper GI scopes, marsupilized bartholin gland cyst
 
"Never go to a doctor's office whose plants has died."
 
 


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 4/7/2009 8:16 PM (GMT -7)   
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
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 4/7/2009 8:19 PM (GMT -7)   
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/

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/7/2009 8:51 PM (GMT -7)   
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

Jules22871
Regular Member


Date Joined Jan 2006
Total Posts : 142
   Posted 4/7/2009 9:16 PM (GMT -7)   
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.
Thirteen surgeries from motorcycle wreck. Reconstructed right pelvis, DJD left hip, trochanteric bursitis left hip, screws in knee, metal plates on right pelvis, spinal fusion to reattach right pelvis, metal plates right tibia and fibula, metal plates needs replaced on tibia, cannot walk without crutches, drop foot, nerve damage and pain, HTN, tachycardia, delayed sleep phase syndrome, PTSD, chronic atelactesis
Wonderful husband, 3 awesome children that are grown but still take care of me. Two dogs, Buddy- Cardigan Welsh Corgi/Borner Collie mic, Crash- Yorkie, 1 psychotic cat, Precious, 1 anti-social cat, Prissy.


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 4/7/2009 9:17 PM (GMT -7)   
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.
Wife: Liz, the choice of a lifetime
Dogs: Koshka & Chomp


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 4/8/2009 7:38 AM (GMT -7)   
 
 
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.

 
We are all in the same boat...unfortunatley it seems like it's sinking...
Post Lamenectomy Syndrome
Hemi Lamenectomy/Spinal Fusion(Lumbar)
120 mg. Methadone daily /15 mg. Oxycodone as needed
Type 2Diabetes : (March 16, 2009)
Metformin 500 mg. twice daily
ME. (Rhonda)                                                                    

 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/8/2009 11:22 AM (GMT -7)   
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}}}}}}}}}}}}}}}}}}}}}}}}}}
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 4/8/2009 3:47 PM (GMT -7)   
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
26 year old Female , single mother of 2 kids, on SSI for migraines, pain, pancreas issues
All the things broken with me: Migraines, Fibromyalgia, Chronic lower back pain that causes severe pain/numbness/tingling especially to my left leg,Arthiritis in my back, Genetic Pancreatic Divisum that causes chronic pancreatitas, Asthma, Depression w/Anxiety/panic attacks, Bipolar
Prescription Meds:Suboxone 24mgs daily, Cymbalta 60mg nightly, Lyrica 50mgs nightly, Imitrex as needed, Ibprofen 800 twice daily, Zanaflex as needed, Ventolin as needed for asthma attacks, Advair twice daily
Over the counter meds: Benadryl nightly for itching due to meds (not sure which one yet), and Biofreeze  
Surgeries: Gallbladder removed at 15 years old, 2 ERCPs, stent put in pancreas, countless upper GI scopes, marsupilized bartholin gland cyst
 
"Never go to a doctor's office whose plants has died."
 
 

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