Feeling Lost. In Constant Pain. Want Things to Change!!!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Apr 2010
Total Posts : 7
   Posted 4/12/2010 11:11 PM (GMT -6)   
I feel like things are getting worse and I am not sure what to do about it anymore. I have had between 12 and 15 surgeries mainly on my neck and back and I am taking several medications to just try and alleviate the pain on a daily basis. I used to be a positive, upbeat person but now I find myself wanting to isolate and I do not know what that is about? The more I isolate the more difficult it is to be social? Can anyone help me with this? I am frustrated with the pain and I am frustrated with my life in general. I really never thought I would be in this space that I am in!!!
I lost my profession due to pain. I just feel like I have paid such a high price because of the pain that I deal with. Can anyone relate?

Regular Member

Date Joined Apr 2010
Total Posts : 35
   Posted 4/12/2010 11:33 PM (GMT -6)   
Im sure alot of people can relate. If you think your in pain now, then I would stop being negative. Stressing yourself out releases cortisol which can actually make things worse. It sounds like you need to see a pain management doctor to get your pain under control.

Veteran Member

Date Joined Feb 2009
Total Posts : 999
   Posted 4/12/2010 11:35 PM (GMT -6)   
Pauliegirl, yes there are many of us that can relate. What you are describing is a very common part to life with CP. Many of us feel we have lost so much as we deal with the pain and the many changes in our lives. We start a slippery decent into depression and the result is we isolate and withdraw. First off, don't blame yourself. None of us woke up one day and said I want to live the rest of my life with chronic pain and lose life as I have known it. many of us take meds to deal with the depression along with the pain. The other area that we struggle with is sleep deprivation. That tends to help the spiral of depression and pain downward, leaving us to feel worthless. You will find some here that have been helped significantly by pain management specialists and pain psy. drs. There is some comfort in knowing that we are not crazy, just trying to maintain some level of  purpose. There will be others checking in to give you more encouragement. This is a good place to find that help.

Veteran Member

Date Joined Dec 2008
Total Posts : 773
   Posted 4/12/2010 11:39 PM (GMT -6)   


There are several of us who have also had to give up jobs that we loved due to CP.  With the help of a PMD and the proper meds life CAN be different and definitely more positive!

Do you have a PMD?


New Member

Date Joined Apr 2010
Total Posts : 7
   Posted 4/13/2010 1:09 PM (GMT -6)   
Thanks to all those who replied. I do have a PM doctor but I only see him once a year and my regular physician prescribes the meds he writes. I just feel as if I have run out of options. That is where I am currently at. I am new to the forum so hopefully this will be a big help. The one thing I want more than anything is to get my career back on track. I know that many of you can relate to what I am going through. Thanks again. -P

Veteran Member

Date Joined Jul 2008
Total Posts : 1559
   Posted 4/13/2010 4:08 PM (GMT -6)   
Oh goodness can I relate to you Pauliegirl!! I too have gone from a very outgoing person to isolation and hermitism (is that even a word??) I just wanted to tell you that and welcome you to the boards

I live to "Tame My Pain!" 

Veteran Member

Date Joined Jan 2010
Total Posts : 3557
   Posted 4/13/2010 5:05 PM (GMT -6)   
Welcome to HW Pauliegirl,

I am sorry that it is pain that brings you here...I can totally relate to chronic pain changing my life and over the years having to find a 'new' normal...

I am a huge adrenaline junkie and if there was something dangerously fun to do, I was there...rock climbing, sky diving, roller coasters, white water rafting, etc....

The hardest part for me is having to actually 'think' about being paralyzed from doing something too jarring now...just can't go and do things without having to weigh the costs...so I can't do half of the activities I used to do which is very sad..

I have learned over the years that you will find the true friends/family in your life that are there for you in the long haul..and also find ways that you can still help and be there for them, even if it's not something physical...but maybe call someone to say hello, or do some easy volunteer work for an orgnaization/church that you care about...this can help to 'get out of ourselves' at times and not think about the pain...

It is hard to not want to just curl up in a ball at home and not talk to anyone or go out...but our emotional health is crucial to our pain...Even just calling a friend to come and go for a nice slow walk if you can handle that...not only will that help with endorphins..but will help keep in shape to not lost our endurance...

I do allow myself my 'pity party' days...once a month for me...to just cry, vent, get angry, etc...to let it all out...because I learned that my pain is constant..and my choice to either just sit and think about day in and day out or still get out and enjoy life and all the joys it has to offer and help keep my mind off of it..

Those are just a few of my personal suggestions/thoughts...
We are so glad you found us here and hope you keep coming back to share about your chronic pain journey...we are here to listen and to share ideas and have a shoulder to lean on...

Sending you a hug (( ))
SB and "the pup who snores loudly" 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Dec 2006

New Member

Date Joined Apr 2010
Total Posts : 7
   Posted 4/13/2010 7:29 PM (GMT -6)   
Thanks to Snowbunny and Scarred for their posts!!!

Snowbunny21 everything you said i "know" in my head but at times I cannot help myself. I always feel better when I am out and doing things. "Better" emotionally that is. The pain grows and grows until I absolutely cannot take it anymore and have to pass out just to get away from the pain. I am sure all of you can relate to this. It is difficult at times when "normal" people do not understand what you are going through. They think that if you can do this or that then why can't you go back to your old profession???? If they only knew how my soul dies a little each day because I am becoming more and more separated from what once was and what will most likely never be again. Even though I hold out hope that one day I will return to my colleagues and do what it is I was born to do and truly love. Who knows??? I guess we only have today. Right?

Snowbunny it seems from your posting that we have a lot in common physically. I have had many cervical surgeries with hardware and without. And nothing has helped the pain.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 4/13/2010 11:36 PM (GMT -6)   
Welcome Pauliegirl!

I do hope that things will start to improve for you.

I can definitely relate to you; I am losing the job of my dreams right now because of chronic pain and illness. This is difficult for me to come to terms with...and I have become a very isolated person in some ways because of my illnesses. I feel your grief at the loss of the career that you love, as I am in the same boat. cry

You are in my thoughts and prayers.....
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3602
   Posted 4/14/2010 12:23 AM (GMT -6)   
Welcome to Healing Well Chronic Pain Forum! I want you to know that you are not alone in this! Not alone with your pain, and not alone with your dispair on losing your career, and not alone with your frustrations, most if not all of us here on this forum can relate to at least one one of these, if not more, or even all of them! After retiring from the Air Force I went back to school and became a Registered Nurse, I wasn't in this beloved career very long and I had to give it up and went on disability! It was a tremendous loss for me! It is a very bitter pill to swallow, I have been on disability for quite some time now, but I still try and keep current and up-to-date on Nursing and I stll keep my license renewed! Even though I know I will probably never be able to work in that career again, or any other for that matter! I just can not give up my license, not yet anyway!!!
Pauliegirl I will tell you, I think you have come to the right place for understanding and support! I think you will find we have the best group of folks anywhere to be found on the internet. The folks here are caring and compassionate, and can empathize with you, and will always be there for you!
Welcome to our forum and our CP family!

I wish you all the BEST

White Beard

Screaming Eagle
Forum Moderator

Date Joined Sep 2009
Total Posts : 5005
   Posted 4/14/2010 12:26 AM (GMT -6)   
Hello Pauliegirl! Welcome to the CP forum!

I'm going to jump right in here, and say that when I read your post, it was very alarming to me! In fact I read it several times, and your reply was equally alarming!

First off, can you tell us a little bit more about your self? 12 to 15 surgeries on your neck or back area? WOW! Can you tell us what led to those, and what they were for? Did you have fusions done? Epidurals?
Can you tell us what pain meds your PM has you on? I'm asking these questions, so that the membership can better advise you or point you in a better direction.
I just had a double lumbar fusion done on L4-L5, L5-S1, and am in my 5th week of recovery here. I cannot imagine having all of the surgeries you have had.

I realize you want to get back to your career, but it seems that your health should be your first priority. If you are having so much pain to the point to where you are passing out, you are way under medicated.
How often do you go to your PCD? And I'm a guessing he is aware of this pain?....to the point you are passing out?

Is your PM clinic one of those that only does injections, and passes the buck for your pain meds onto your PCD? Something does not sound right here, as most PM's will want to see you at least every two months or if not sooner.
Have you looked at the Pain Pumps?

I'm so sorry for all the questions, but I think we need more information in order to help you here.

I feel horrible for you, and hope that you can find some relief soon. It sounds like you may need to find a new PM or maybe a PCD as well.
Right now I have more questions than answers for you, and again I apologies for this.

I can tell you from my own personal experience, that working, and heavy pain meds are a tough way to go in the work force, and many company's will not allow it, and have a zero tolerance policy concerning it.
I have tried pain meds for over 6yrs and it showed on my daily performance. In fact my supervisor told me that if I didn't get something done soon, I would not make it. I had been there for over 32yrs, and had a reputation, and was often referred as one of the members of the A-Team. As soon as I started the pain meds, I quickly went down to the Z-Team, and I hated it.

Of course living in pain, is a nightmare in it's self! Yes, we do understand your plight, and sympathize with you. Many of our members have similar stories, so your not alone here.
I wish you the very best, and if you can , please do tell us more about your self.

You certainly came to the right place for help and understanding that is for sure. Many of our members have an extensive knowledge in many areas of Chronic Pain and the causes of it.
We also have several veteran members here, and I hope they will be along soon to advise you as well. I'm willing to bet they will have many questions as well, so you may as well start with some of the ones that I have asked here.

Good Luck to you, and please check here often for replies, and do keep us informed of your progress.

Screaming Eagle

PS: We also ask our members to read the Chronic Pain 101 article that has been posted by our moderator (Chutz). There is a lot of good reading there!
and please do take the time to read the forum rules when you have the time.
DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.

Post Edited (Screaming Eagle) : 4/13/2010 11:31:32 PM (GMT-6)

Regular Member

Date Joined Feb 2009
Total Posts : 487
   Posted 4/14/2010 1:21 AM (GMT -6)   
Hi Pauliegirl:

I just wanted to welcome you to HW. I am sorry that you are in such pain, and I can definitely empathize with all of the issues you raised. I have had a total of 23 surgeries on my back, and I am still in horrendous pain 24/7. I also had to give up a career I dearly loved, and have had to deal with friendships falling by the wayside.

I'm glad that you found HW as you will find that this is the one place you can come to and be totally honest about how you are feeling, and you will receive support and caring from people who truly understand what you are going through.

Take Care,

New Member

Date Joined Apr 2010
Total Posts : 7
   Posted 4/15/2010 1:05 AM (GMT -6)   
Thanks to all who replied especially Screaming Eagle.

Dear Screaming,
I am going to try and give you some of my history and attempt to answer some of the questions that you brought forth in your last post. I haven't thought about all that I have endured in quite some time. First of all you were asking about my PM doctor...... yes I do see one but I only see him once a year and he dictates what to prescribe to my PCD who I see @ every 3 months or so. My PM doc is at Thomas Jefferson and to go there every month to pick up a Rx would be a major hassle. I guess I have just gotten to the point where I feel there is nothing more they can do for me. So I go to my PM and check in as required but other than that what is the point of taking the train etc. I used to see a PM Doc every month and the wait was unbelievable!!!!!! I mean the whole entire day was shot sitting in the office waiting to see the Dr. I am sure you can all relate!!!! After a while it became the same thing just picking up my Rx. They would suggest epidurals and different procedures but I cannot even count how many of those that I have gone through with ZERO relief. So I figured WHAT IS THE POINT???? Maybe someone can tell me?

So now for a bit of my history......

Surgery on L shoulder (Mumford) - removed distal end of L clavicle
- I had broken both my shoulder and clavicle and they thought persistent pain was stemming
from these injuries. WRONG!!!

Cervical Surgery - Anterior Cervical spine fusion C4 - C6 (bone graft taken from hip)

Major Car accident - Fractured Pelvis, Bilateral Acetabular fractures (both hips), R ankle, L Foot
- Sternum -----Surgery for Greenfield Filter

Anterior Cervical Fusion - C6 -C7 with anterior plates and screws added some wiring

Cervical Foraminotomy - had a non-union at C5-C6 - repeat posterior fusion

Foraminotomy - took out wires added screws and another plate

Surgery on infected neck wound. Staph spread through body.
Surgery on L. arm due to Staph from neck wound. Picc line put in so I could give myself IV

Lumbar Diskectomy - Do not know which level

Cervical Revision of Fusion C4 - C6

Lumbar Fusion - L4-L5

Spinal Cord Stimulator - 4 surgeries all together involving the stimulator.
1st.SCS Surgery - thought I had experienced some pain in my days this was by far THE WORST PAIN I EVER HAD BEEN THROUGH!!! The Dr. told me I would be in and out in @ 24 hrs. I was in for over 5 days!!! Excruciating pain!!! I was cut everywhere (or at least that is how it felt). They had to reopen and make the incision larger that ran down the back of my neck but extended it into my head. The battery is then implanted in a large incision in my butt cheek. They have to make little incisions all over your back in order to pull the wires through. I also have a subcutaneous wire that runs to my scapula in the hope to relieve pain. Another scar for that wire. I am telling you it was AWFUL!!!

2nd.SCS Surgery - problem with the battery. Put a new battery in the other butt cheek. Can you imagine that.
Another scar. Well at least both butt cheeks match (they have the same horizontal scars)

3rd.SCS Surgery - Wires connecting to battery malfunction. Had to have a surgery to fix them.

4th. SCS Surgery - Battery "flipped over" unable to turn on stimulator. Surgery necessary to flip it back and they placed it in a type of pouch so it is sewn down and won't flip again.

Also had a trial surgery for the stimulator but that was no big deal.
I have had multiple @9-10 epidurals and facet blocks but I do not really count all of those. I just cannot keep track of all of those.

ANyone considering a stimulator should think long and hard in MY opinion. But that is just my opinion..... All that I went through and I have not used it in probably 3 years. The battery bothers me (I am kinda thin, not as thin as I was when I first had the surgery) But my point is it doesn't give me effective pain relief.

We have talked @ the pain pump but from what I have gathered. I would be able to get the actual pump but I would have difficulty in getting it filled when needed. Does anyone have a pain pump or know the drill?
I am making an appointment with my neurosurgeon (who I have not seen in at LEAST 2 yrs) so I can schedule to get this stimulator removed and as many of the wires taken out also. That same day I will schedule to see my PM doctor, since they are both downtown at the same University.

I hope I cleared some things up for you Screaming Eagle. Oh one other thing I wanted to address was when I said about going all day or doing as much as I can with those that do not understand(putting on a good face, while inside yo are crying from pain) and then coming home and just passing out. That was poor word choice on my part. I guess at times I do just go out like a light. But, it is not as if I am standing there and then I lose consciousness. I separate myself from everyone or sometimes I do not get the opportunity and the next thing I know I am out. But, from the way I see it there is only so much pain your body can take before it has to shut down. What do you think? Anyone?

If anyone has any ideas on how I should handle what I am dealing with I am open for any suggestions!!!!

Thanks to all in advance!!!
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 24, 2016 3:20 PM (GMT -6)
There are a total of 2,711,200 posts in 298,970 threads.
View Active Threads

Who's Online
This forum has 153538 registered members. Please welcome our newest member, ElizabethW.
368 Guest(s), 17 Registered Member(s) are currently online.  Details
sondraxyz, notsosicklygirl, NB236, AmyAzz, VLou*, rocckyd, Paxton, dbwilco, PA_grandma, janelise, wellness hailu, mjw11, Randy Eichner, Dakato, goodnurse53, ElizabethW, Snarf

Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer