← Return to Mental Health and Complex Regional Pain Syndrome after Cervical fusion

Discussion
Comment receiving replies
@saraliza

My heart goes out to you, Leigh. I’m 48-yrs-old, and I got hurt in an accident when I was only 37—right at the peak of my life and career. I was hit and partially run over by a car (while on vacation, of all things)! I had multiple injuries and surgeries, but the pain never went away. I was eventually diagnosed with CRPS and several other chronic diagnoses. Bottom line is I’ve lived with severe chronic pain for over 11 years and it’s been a hard journey, but I’m making it. You can make it too. ☺️

At first, I pushed myself to keep working because I couldn’t accept that this was my life. Finally, after 2 years, I had to quit work. I just couldn’t keep pushing myself through the hellish pain. I went on disability through my employer, and they required me to also apply for Social Security disability, so I did. I was embarrassed that I couldn’t work and I couldn’t stand to call myself “disabled” because I’d always worked hard and been independent.

I’ve seen tons of doctors, tried a gazillion treatments. I tried acupuncture, traditional Chinese medicine, water PT, hypnosis, and more. I went to the Mayo Clinic, but nobody could cure me. Doctors said I would have to just “manage my pain.” And my pain management doctor said my pain would be “life-long.” When she said that, it hit me like a ton of bricks. I was in denial at first. I was mad too. But as the years went by, I had no choice but to accept it.

It sounds like you’re struggling with denial right now, which is totally normal. Of course, you have to search for solutions until you feel satisfied that you’ve tried everything you can, turned over every stone, so to speak. And even after accepting chronic pain, we can always continue looking for things that help relieve it somewhat. For example, I love my heating pads and my hot baths... oh, and pet therapy with my cats! 🐈 🐈‍⬛ 😉 I hope something out there will work for you. But no matter what, just know that you’re not alone and you’re stronger than you think. 😊

It took me about 5 to 6 years to finally accept that chronic pain is my life. But once I did, I actually felt some relief to give up the fight. I had complicated feelings about hope… I didn’t want to give up hope, but at the same time, I was tired of the emotional roller coaster of getting excited about a new treatment, getting my hopes up, then being disappointed when it didn’t work. That ‘up and down’ is exhausting.

Here are a few things that have helped me:

(1) Talk therapy. I found it extremely helpful to have a therapist to talk to. It’s good to have someone to vent to who isn’t a family member. I know a lot of times, family members just can’t take hearing about it all the time. You need another way to vent your feelings, I don’t tell my husband everything b/c it makes him depressed. If you have health insurance that covers therapy, take advantage of it. If not, there are some cheaper options online like BetterHelp.com and others.

(2) Find a good pain management clinic. A good one will have real pain management doctors (MDs) and a stable history (not a fly-by-night pill mill). Having a doctor who specializes in pain and can help relieve it with a variety of methods is very important. Regular family doctors aren’t trained well in pain management. They’re often hesitant to prescribe opioids, no matter how much you might need them. I don’t like opioids, but I HAVE to take them because they are the only thing that consistently helps my pain and allows me to have some kind of life. Without them, my pain is so severe that I’m in bed all day, everyday.

(3) If you know that you can’t work and haven’t already applied, I encourage you to apply for Social Security disability. It takes a long time to go through the process (it took me over 2 years before I finally got a check), so applying sooner is better than later. Also, if you get rejected, don’t give up. Go through all the appeals so that you can get in front of a judge. And get a lawyer at that stage w/ the judge. Some people don’t get a lawyer b/c they think they have to pay for it themselves. But Social Security pays for it. You have a much better chance of getting approved if you have a lawyer.

(4) Exercise. I know…groan! Who wants to exercise when you’re in pain? I didn’t start exercising for my pain until about 3 years ago. Once you force yourself to do it (and talk to doctor about what exercises are okay for you), it can really help your mental outlook. And if you really get your heart rate up, the endorphins kick in and actually reduce your pain. I have to exercise a few times a week. If I don’t, I notice my pain gets way worse. Just a suggestion to try.

(5) I also read about how Eastern cultures see life—how it’s different from the way Western cultures (like the US and Europe) see life. In the west, we think everything has to get better, get bigger, keep progressing. If we have a problem, we MUST fix it. We don’t know how to accept things that are chronic and can’t be fixed. It really upsets us. But in Eastern cultures (Japan, Thailand, etc.), they see suffering and pain as a normal part of life. They don’t necessarily think everything can or should be fixed. They are more laid back about struggles in life. You probably know this, but many of our coping mechanisms, like meditation and ‘living in the now,’ come from Eastern culture. Changing the way I look at chronic conditions has given me some peace of mind.

I truly hope these tips help you. Hang in there! ☺️

P.S. Pics are of my loyal pet therapy providers!

Jump to this post


Replies to "My heart goes out to you, Leigh. I’m 48-yrs-old, and I got hurt in an accident..."

Omg you took the words out of my mouth, I’m in Australia so things are a little different here.
I am still having trouble coming to terms with the CRPS diagnosis, my pain is still very positional so even sitting upright in a chair seems to aggravate it, I keep hoping that if I see enough drs surely one of them will find they have missed something with my spine that potentially another surgery could fix, so far I have been through 3 neurosurgeons and 2 pain management drs.
I see a phycologist for talk therapy as my husband is sick of hearing about it, but half the time I sit there wishing I could tell him where to go, I’m not ready to give into this monster.
I work in disabilities, or did work… so it’s hard to accept I may need support down the track
I walk 3 days a week and pool therapy the other 2 days when it comes to the weekends I’ve used all my energy stores and feel extremely flared up with pain and struggle to get out of bed… I struggle of a night to sleep with the burning throbbing pIn down my entire right side, so I think lack of sleep is also contributing to the pain.
And your right a cat does help, I be lost without my little miss, she seems to know when I need a cuddle

Hello, welcome to Connect @saraliza. What an amazingly, helpful account of your experiences and how you got to this point. Words of wisdom and such good tips that many can use. Thank you! I admire you're outlook and determination to persevere. What have you found most gives you joy and distraction on your difficult days?

Hi! I really got so much help and info from your message. I’m so sorry about how you came to get your pain situation! My pain issues came because I got a rare endocrine disease called Panhypopituitarism which means I don’t have a working pituitary gland. It took me nearly ten years to get diagnosed. During that period I read medical books and finally figured out what I most likely had. So I read about a great endocrinologist at Mass. General Hospital in Boston so I called him and he had me fly up there. He diagnosed me really fast and I was started on all replacement hormones. However during my doctor search, my disease got me so sick that I couldn’t drive to work or walk very far. So I got a lawyer and applied for disability. I was then seen by a governmental group and judge and after just one session with them, they decided that very day that I was completely disabled and okayed disability payments. So I had to quit my job but would have had to anyway because my husband got very sick with Parkinson’s and died very fast. Since I’m unable to drive I cannot do many things that would be of help, like seeing a therapist because I have to rely on relatives to drive me places and they already feel very tired from taking me to all my doctor and medical test appointments.