damn Fionab

excellent explanation
visual and can almost
feel it as you explain it
awesome

someone who cares

Fianab, thanks for sharing. Some of these problems (like the sexual one) I have had since before even the trial, it's just that the surgery implant made it worse. As for the urinary, I got nothing! I have spoken with both the neurosurgeon and the pain management doctors about it and they are both willing to write it off as just a side effect of the nerve damage. Sometimes, I wish - even if only for just a day - I could make the drs feel what I am feeling and go through what I have to live with. After an hour of sitting on the toilet feeling like your bladder was ready to explode only to have 8 drops come out, they might decide that something needed to be done! As for the SCS affecting any of these things, I have to write that off. I have tried days where I leave it on all day, part of the day, and off all day. No noticeable changes were made. Your statement about it taking a year before you felt like you recovered from surgery is one that I have heard many times before. Even my surgeon told me 6 months to a year. I just don't know if I can wait that long. My pain is getting worse - sometimes, turning on the SCS makes it unbearable. Unfortunately, as the pain increases, so does my depression. Thank you everyone for your help, comments, support, and assistance, but I am starting to think that there's just no help for me anymore. I am about ready to give up.

I tried calling the surgeon again today to get in for an appointment, but hit a brick wall. Had to leave messages that went unreturned. These peripheral neuropathy symptoms (not saying I have it, just have the majority of the symptoms) are getting worse. I really want to talk to him about it because I know its going to be a long road, even from there. I doubt he will put me on meds, but rather will send me to my pain mgmnt dr, not that I would blame him, but then I will have to wait for another appt to come around before I can get any relief. Also, I think I want to get back on Cymbalta, if my dr lets me. I want it for both its on label use as an anti-depressant because I need one, and its off label use as a long term pain reducer, nerve duller. Don't know. I just hate having to sit around and wait.

It's great to have you here
I so appreciate your openess and honesty. It's good that these issues get talked about, as it's an unfortunate reality to many of us.
You've received so much good input, I hardly know what to add other than I completely understand alot of the things you are feeling. Even just the chronic pain alone can rob us of the joy in life...not to mention the fact that the meds we take to battle the pain deplete our hormones, especially testosterone. Then, enter depression. It becomes an unending cycle, one that I'm all too familiar with as well. If it weren't for this forum, I'm not sure what condition I'd be in. It can certainly be a silent battle and very isolating, when left to our own lives and situations.

Scar tissue can be a menacing culprit. As it grows and changes form, it presses on nerves and can cause a wide array of side effects and interference with what the SCS is supposed to be doing for us.
I'm anxious to know what your doctor will have to say.
We are constantly looking out for one another here and the support is never-ending.

Glad to have you with us!

Rae

Rrae, I can't thank you enough for your response. Like you said, there really isn't much to add - BUT the simple act of having other people who can relate and show that they care can travel much further than one might originally think. I'm not even going to say where I would be if it were not for the group of wonderful people that happened to be online in a chat room a couple of nights ago when the depression and loneliness took over. If any of you who were there happen to read this (and you know who you are), please know that I could never find an appropriate way to properly thank you.

You are also right about all the things we are robbed of. It is mostly thanks to my inability to work that I have taken over the role of "stay at home mom" and "housewife" - I know, my Man Card was taken away a couple of years ago, but that's okay too. I should be thankful that I get to spend all day with my children 3,2, and 1 Not something I would recommend by the way! But when they come up and want to be picked up or sit on my lap, or even just have me get down on the floor and play with them and I have to tell them I can't, I cry when they start to cry. I know it's not fair to me, but I also recognize that it is really not fair to them. I'm trying to do something about it, and that is all I can do. They don't know that, of course, but I hope that by the time they are old enough to figure it out, it won't matter anymore because I will be at least more better. I realize that's bad grammar, but it was the best way to get my point across! It would be too much to wish for i'm afraid that I would simply be better, only somewhat better and something is something, after all. Once I get to some drs, I will update. Thanks again Rrae for your reply as well as your support!

Hey you. As promised, I read about your situation.
Here is how I can relate:
My neuropathy began by affecting my bladder. I always felt like I had to go, and sometimes went 30 times a day. I had several invasive cycstoscopies only to have nothing resolved. They thought I had interstitial cystitis. A side note, when I tried Cymbalta a few months ago, I had horrible retention and spasms after 5 days. Otherwise, it was helping my mood.
I had/have pelvic pain/Pcos/endometriosis that pretty much made intimate times with my bf at the time impossible. I really do understand that .
To make matters worse, once on oxycodone, I lost all desire and also the inability to..well..finish the job.
I have found that after being switched to morphene and the fentanyl patch, that problem went away.
I have had debilitating depressive episodes for about 15+ years, even before I developed neuropathy. They are incredibly draining, and I too have found that reaching out to others who understand is so valuable. Whether online, or a real life support group for mood disorders, as well as therapy with a pain psychologist and an intensive case manager.

I still dip into deep depression and hopelessness often. You know that, because you saw my thread :-)
I just figure that if I have made it this far after almost three years, I can live another day and do the best I can. I have the added burden of being denied disability and being single and very little income.

Anyway that's enough put of me.
Don't be afraid to write me.
I also like to read books and memoirs of people with mental illness. Another source of inspiration.
Keep your chin up.

Depression is a terrible entity. I'm sorry you too battle it.
As we lift one another up, it's just good to know that we aren't alone.
Thank you for sharing.....

Rae

I am at home with the new stim. It works, but dealing with surgical pain isn't a that fun. Can't handle narcotic medicines. Before i got crps i was never depressed always active always social. I set my own table. With nasty chronic pain, you lose control. Something that 99% of young - middle aged adults cannot understand. Pills and scs units are only part of the picture. I've seen psych folks but it doesn't help. I can't wait to get back to work. At least you are part of something even if you have to fake it. But it is good to have people out there who understand what this is like. It doesn't mean that life doesn't offer good things - it's just that you really have to fight way too hard for them. Being immediately post surg and telling my 5 & 7 yr old sons to not run into me / I can't bend - that's hard. Hopefully worth it in a couple months.

just in your sharing
experience strength hope
we have your back
this emotional crush of
spirit and capturing it back
mat it do so 10 fold
pain rob me of so much
changed my life in one night
but the depression that came
into my life is none other
me myself and i
as told when given lemons
time to make lemonade
that advice from a very
important person i have
come to know hope all
is well haven't heard
it is a community where persons
have each others back

someone who cares

The plate full of issues you live is hard to handle.... for you, for your spouse, for your children, and there are those of us, who having suffered some of the same, can relate.

That scs stim can be both blessing and curse as you work to become accustomed to its rhythm in your system. The "honeymoon" effect of "gee, I got a stim" just does not last forever, and beginning to realize how it functions best FOR YOU is key to living into the months and years which follow.

Elimination, both bowel and bladder, can be affected detrimentally by high signal use if you are given to pretty much leaving the unit static on a level all of the time. I had to learn this one up close and personal. Kind of awful it is when going to the restroom only not to be able to eliminate or void. THEN, this little light bulb "flashed" in my head as others have written...... turn it down silly.... and by gum, it worked. Without the strong signal rhythms, my body was better able to handle the challenges of something we each have done from the day we were born.

Depression.... oh how I know this one. I do not know whether it was a confluence of issues or any one issue, but after scs implant, within just a couple of months of realizing scs was working, Doc and I began to insert me into a regimen of withdrawal from the years and years of pain med use. This was no event for the weak of constitution. Compound this with the VERY hard work I was doing simultaineously at the time to regain my professional practice, as we were nearing financial collapse as a family. I used to earn several times what well off people earn in a year, and had been reduced to ZERO...... nothing. It was a catastrophe waiting to occur to realize I could not support my family in any standard of life.... at all. So, I had taken meds away, career had been taken away by the driver who had subjected my body to this in the wreck years ago, AND we were at the time realizing we either had to sell our home VERY fast or we would lose it.

Depression became my unwanted...... and absolutely HATED companion. I nearly lost, well, everything, including the blood coursing through my system because I felt inserted deeply into a very dark, damp, solo place called a well. Everyone around me became utterly worried. I was not, because I desired an end to it all...... and care was what ultimately helped me emerge after a conversation with God one afternoon on a lonely mountain road. Docs helped me, family and friends helped me, meds for depression and anxiety helped me, and God, yes God, helped me.

Today, I am back in practice again. Three days this past week [shhhhh, don't tell anyone, because they will climb on my back and beat me about doing too much ] I worked 13 hours each day. That house which had been so important to me???? Well, we sold it in three days from the listing, for more than asked, and due to multiple parties having interest..... God again gets credit [because this market was not one given to any home selling]. We have now bought another. We are not wealthy in money any longer, but we are overwhelmingly rich in the spirit and blessings!

For you, I pray all will be well, that the issues affecting your body functions will be regulated somehow, and that depression will be lifted from your spirit. You are a precious blessing to your family, and your wife and children can attest. Just look deeply into their eyes and you will know precisely whereof I speak. We will be here to help the best we can. You must make the very difficult steps of gaining control over the deceiver who would hold you fast in the clutches of depression down that dank and dreary well of isolation. BE among people, reach out and help others.... may sound pat and cliche' but I KNOW doing so helped me re-emerge from the slippery path to oblivion.

One who cares deeply,