Depression- Pain

Hi Everyone,

I am new to this forum, but not new to pain.
It all started with a fall 3-4 years ago, I never remember the exact year! And I started to develop some mild-annoying pelvic and lower back pain. It got progressively worse and after exhaustive search for answers I was FINALLY (30+ docs later) diagnosed with tethered cord syndrome. The syndrome is a neurological disorder, usually congenital where your spinal cord it stretched very low and does not move. It causes bladder nerve damage, leg nerve damage.. and severe pain. I had surgery last year and everything was great. However the surgery does not improve pain, and I was prepared for that. I am on morphine which controls the lower back pain, and Neurontin and Baclofen which helps with spasms and nerve pain.

Here's the thing... I have now developed something secondary- some kind of fibromylagia or?? I have severe all over pain, pain while sitting, stiffness... (among 10 other things)
And I am just beside myself trying to figure this out.

At age 34 I have lost all will to live. There is nothing that motivates me anymore, and it's not really clinical depression- it's more like I don't want to spend the next 10 years searching for an answer of what this is, and how to treat it.
I tried to find a physician that will listen to me, they say I should go and have massage etc.. well I go for massage already!!! Nothing is working- injections etc.. the only thing I have is increasing my pain medication.

Is anyone going through this? Is anyone just "at the end" of it?

Thanks... yes I have tried all of the above. I have 2 tens units. Nothing seems to help. I am getting very frustrated. I really feel like I am in a corner. My job is suffering, my relationships. It's very tiring. I have seen one psychologist a long time ago, but decided not to go back. I guess that is something I should look at.
Also I do go back to pain management next week, and I want to make it very clear this time that I cannot continue to do this ie. get up every day and deal with this.

Hi Chompers....

I hear what you are saying in your post.... and, by the way, welcome and I'm glad you reached out and posted. 

I'm almost 38 years old.  I had a wonderfully active life - full of raising kids, teaching classes, volunteering at church and so forth and so on.  I got very ill 8 years ago and remain the same, actually worse. 

I get what you are saying.  There are days when I don't want this anymore.  Just when I think I've accepted this "new life"....the dark clouds come in and I just don't want this anymore.  I think - if I feel this now (at 38)....what the heck am I going to be like at 45?  50?  etc.  I've been through the whole thing, too - physical therapy, massage, injections, nerve blocks - and loads and loads of meds.

All that said - I do suffer from depression - and it's a direct result of being young and dealing w/ a chronic illness.  If I don't take my meds, I stay in bed and can't get out - because, like you said, I have no will to go on.  I withdraw from the world.  My relationships suffer.  All the things you mentioned.   On my meds, though, I can at least function and put one foot in front of the other.  Some days, it's not easy.  On those days - I try to find "success" in the simplest things.  If I can pick up the house.... get a load of laundry done.... love on my children.... whatever it is - I just accept that it was all I could do for the day - and that the next day will be better. 

Life's not easy living with all of this, I know.  But I would really, really encourage you to rethink the whole "depression" aspect.  When a chronic illness/pain impacts your entire life - who wouldn't be depressed???  Have you ever tried an anti-depressant??  Therapy is good, too, but finding the "right" person is key.  I've seen some crappy therapists, too.

When many of us here have been at our lowest.... we lean on each other for support.  Please continue to reach out and let others here help you.  So many of us have been where you are - literally at the end of our ropes.  I wish I could do more for you... but I will hold you in my thoughts and prayers.... and hope to hear more from you....

Love, Tina

Chompers,
I feel for you. I turn 34 in a couple months & it's all just very hard at times. I've been dealing with this now for 13 years and it's just draining sometimes.

I'm not sure what your financial/insurance situation is, but if you can cover it, my suggestion would be to up the meds. I've fought that so often & it's just not worth it. No one can be happy when they are in horrible beyond belief pain. Get the help you need with that first. Beyond that, there are some good counselors out there. A pain psychologist can maybe give some additional suggestions beyond "get a massage". Also, seeing a therapist might also help; I know it helps me when I can afford to go. I've been trying to look at my condition differently lately.
I've been looking through materials about disabilities & came across one by a lady with Down's Syndrome. She said that separate from the fact that it makes many things more difficult & there are people who say really mean & hurtful things to her, that she sees Down's as a blessing. It took me a while to accept that, but having worked with children with Down's, I can see how that could be true. They have such pure hearts & a wonderful ability to read people's intentions. They are very kind.
I've realized that to a certain point my condition is the same. Not the painful part of it -- there's nothing that's a blessing in that -- but the limitations. It frees me up to do other things with my time and my life. I wouldn't have chosen to do so many things from home had I not had Chiari. And I realize now that would have been a shame.

I don't say these things to criticize you or tell you how to feel. Not at all. It is a process & I myself still have many years ahead of me to try to sort through this all. But getting counseling can help free up some of that negative, drag-you-down energy to do positive, enjoyable things with your life. It's too hard to see the good when you are right in the thick of pain & loss & the unknown. That's why it's helpful to have an outsider serve as a sounding board & a second point of view on things.

Of course, it is my hope and prayer for everyone here that they would find out the cause of their pain and be able to completely get rid of it without the cost or negative consequences that often accompany medication, surgery or other treatments. But I also pray that none of us miss out on the joys of living during the months, years &, sometimes, decades between onset and a resolution (if there ever is one). Life is so precious. Your life is precious. We all believe that & the people here in the HW community are wonderful about offering support and sharing each others' joys and sorrows. So, let me welcome you and encourage you to keep posting; I hope you find the peace and healing I have found & continue to find from the other members in this forum.

hugz & prayers,
tirzah

PS -- I also belong to the Depression Forum. Know you are welcome & invited to join us over there as well. :) The posts are a bit less frequent than in CP, but I have found they are always kind and gentle responses from warm-hearted people fighting the awful disease that is depression.

Chompers,
Have you seen a neuropsychiatrist? That was a good piece of the puzzle for me. I don't fully understand what tethered cord is, but depending on how similar it is to Chiari, that may be a piece of the "depression"/down feelings. The issues with CSF flow impacted hormones & neurochemicals, which made feeling positive that much harder. The neuropsych was able to give suggestions that took that into account.

There are some great new studies with ketamine. I have a topical solution that I rub on the back of my neck/head. It's great for pain, but also has shown a lot of promise for depression. I also use it for low back pain. It's a compounded med & usually isn't covered by insurance but I love it. It runs me about $75 for 3 months worth. Well worth it, imo!

Craniosacral therapy helped some. It is a specialized massage that is very gentle. It is for blocked CSF flow. Feels really, really good. :) There is special training for people to learn how to do it. Make sure you pick a therapist/osteopath/chiro who got the special training. Lots of therapists get maybe one class worth of training on it & are not very good.

Cervical traction sometimes helps me too. I got home units for cervical traction & lumbar traction. My insurance covered them. The rep came to my home to demo it & set it up. I love the one for lumbar pain. The one for my neck pain has been harder to adjust to. When I do it right, it feels great and even though it's on my neck it helps my mid & low back too.

I know none of those are answers, but I mostly try to focus on what will alleviate symptoms. Those are what's worked for me (besides oral meds). Thought I'd share them in case you want to discuss options with your doc. good luck! ;)

Nope. My first PM was the one who suggested it. My second PM didn't blink. I found out that the 10% solution was too high (it made me itchy) so the compounding pharmacist suggested an 8% solution. My PM had to call b/c he had never done an 8% solution before, but it wasn't a big deal.
Ketamine gels are not at all controversial in the pain community. In the mental health community it's totally different -- people have very mixed feelings. But if you bring it up to your pain doc, there shouldn't be any issues, especially if he's already writing for you to have morphine.

Hi Chompers, and welcome to the family.

Alot of what you had to say struck home for me. For over 3 years now I have dealt with chronic pain, my new best friend I love to hate, and all the baggage that it brought to my life ... or should I say my new life, as the one I knew is totally gone. Infact it wasn't even until a year and a half ago that I finally found a doctor who could tell me what was wrong with me.

I suffer from CRPS, an evil condition that causes incredible pain constantly in one affected location ... and it spreads with time. When I was originally hurt on the job it was supposed to just be tendonitis. But as time went on I didn't get better, infact I got worse. No one could tell me what was wrong, all my tests came back normal, and I was refered to doctor after doctor. Some of them treated me poorly ... like I was wasting their time ... one flat out told me "I can't find anything wrong with you, there for your fine." That one got my workman's comp case closed, but the pain wouldn't go away. I could sit there and show him my hands, and everyone else could see that one hand was a totally different color then the other and swollen severely, but he didn't see it, and one time he even said "You were obviously doing something to your hand before I came in here to make it look like that."

I have had one man walk out of my life, telling me effectively that he didn't believe I was hurt; I was a hypocondriac, I was faking it, I was lying, I was being lazy. I had a husband leave me after he said he never would, that he understood my condition and he'd take care of me. He was also the one that told me I had to give up anything I enjoyed doing that put me in pain because, and I quote, "Your pain gets in the way of my happiness". As a single mother I have tried to expain to my son constantly that I can not rough-house with him... I can't even play video games with him.

In over 3 years I have watched my pain go from just affecting my hand and wrist to include my elbow, and eventually my shoulder, and now part of my neck and an extended swath of my shoulder that travels down to include the shoulder blade and the clavical; all on my right side ... and I'm right handed.

I'll be 38 in a few weeks now, and depression is a daily battle. The narcotics I've lived off of for the last 3+ years haven't helped, nor all the emotional stress and physical stress. When I first learned I had CRPS I broke down and cried to a close friend of mine:

"I'm a single Mom in her late 30's who's permanently disabled... who will ever want someone like me? What do I have to offer to anyone?" His responce was touching. "Your love. Your caring, your fiery passion, your intellect, your companionship." He's right, but that does not comfort the guilt I feel at times for fear that I am a burden to those I love.

I recently had a surgeon tell me he can trace a path from what I suffer today back to my original injury, and suggested I consider re-opening my workman's comp case. I declined. He told me it would probably help off-set all my medical costs given Medicare doesn't have the greatest of coverage. Again, I declined, but when asked why my simple answer was enough to make him drop the topic. "Because I would have to give up seeing the doctor's I want to see. I've already seen their pain doctor, and he's the one who treated me as if I were a head case and just out to use the system or was some drug user/abuser." I have a good pain management doctor who understands my concerns for my quality of life; I wouldn't part with him for anything.

I worry that perhaps you do not have the same sort of relationship with your pain doctor, or whomever it is you see. If you are not getting the care you need to treat your pain issues you may need to seriously consider finding one that will work with you, to assure as best a quality of life as you are permitted.

Over the last few months my depression has gotten real bad, and I fully intend to discuss this with my pain doctor when I see him next week and ask him to add an anti-depressant.

I know how frustrating it can be feeling like you have no answers, that no one can help you, but please, please, do not lose hope! The future looks daunting, I know when I look at my own I am not always thrilled with what I see as a potential, but I try not to consider that. Instead I try to make the most of each day, to enjoy the little things. I can not do much, and certainly with the coming summer heat I will slow down on my productivity, but I know alot of us here have found little things we do as either a source of small income, or as just a way to feel good making things to give to others. Do you have something like that? Some people knit or crochet, make jewelry, one lady even makes teddy bears.

Know that you've found a good place here. An incredible wealth of knowledge and experiences, and a source of support and compassion that helps us all get through our darkest moments. The people here are folks you can laugh and cry with, and are always there even if all you need to do is vent.  Just remember, you're not alone. I know from my own experience that finding this place saved me, emotionally; finally, people that understood what I was going through and having to deal with!

Just remember -- Sing as if no one were listening, Dance as if no one were watching, Love with out fear, and Live each day as if it were your last.

*gentle hugs*

Chomper your post sounds like everyone of us by the time we found Healing Well's chronic pain forum. I think by the responses you have received from everyone, you now see there are a whole lot of us out there suffering with CP. CP has a way of making us feel isolated, that is just one of the many things that go along with CP. At least by coming here you know you are not alone. Every one of us at some point felt like we just could not continue on as we were but we realized we must. Unless a miracle happens, CP will be a part of our lives every single day.

Depression and CP go hand in hand for some reason. You may or may not know this. Most of us here at the forum have had to go on medication to help us be able to smooth out the rough edges. There are many stages of CP, all the issues and processes we go through getting from point A to point B and so on. Some of these are easy and some are hard. One of the hardest things to deal with is mourning our losses, loss of jobs, health, financial security, friends, our old way of life, this is just a few of things we will mourn getting through this process. I had to find a good psychologist to help me learn these things and learn how to cope and accept them. All I knew was suddenly I felt like my life had been snatched from me and I was not dealing with it well at all. Thanks to this wonderful lady, she helped me get my feet planted back on solid ground. It was not easy, but then nothing worth having is ever easy. In reality I am still the same person, I just have to do most things a different way and I sure do look at things in a different light now. I am quite sure there is a lot of good left in you and your life is not over, it just feels that way right now, but believe me, you still have so much life to live and so much to give. You just need some help finding your way. Acceptance is a big hurdle to jump and get over, once you get there, life is easier, realizing life changes and we must change with it is every day living.

If you were to line up every member on this forum and ask them if they liked having to be put on medications in order to have some quality life you would find none of us ever wanted that or ever thought we would be on medication. We do not like having to have our meds increased but that is part of reality with CP as well. You have to find what dosage works, its not a one size fits all situation. Never sell yourself short and think you should just suck it up and deal with the pain, that only leads to trouble.

You have been given some excellent tips here by the other members, I just wanted to pop on and tell you welcome aboard. Take care and keep us posted on how you are doing.

After reading these responses I am honored to be part of a group of people like this.
You have all inspired me.

I will discuss all this with my doctor tomorrow and be very frank with her as to what I need. I don't believe my pain is controlled at all because we are not really changing the dose. My friend who is an ER physician told me the dose should be increased by 10MG every month. I have not done that.

The thing that got me that day, which I never mentioned is that I was told I need to get approval in order to have a child from my neurosurgeon and high risk OB. I will have to be sedated (can't have epidural) and have a C-Section- if my physicians allow it.
It really got to me.

But after reading all this I know I need to be strong, reach out and conquer this.

CRPS is very serious, I know that your pain must be 10X worse than mine, and I really admire your strength and being able to reach out and support ME, who you don't even know :)

Chompers how did the dr appt go today, have been thinking about you. Please let us know.