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

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?

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.

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

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 (( ))

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.

You are in my thoughts and prayers.....
((((((((((hugs))))))))))))))
JoAnn

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.

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!!!