In 2003 my life changed in a way I could have never expected. I gave birth to a beautiful baby girl, 3 weeks early, 5 days of labour and an epidural gone wrong. When I got pregnant with her, I was in the best shape of my life. I was healthy and happy and ready for the new bambino. My 6 lb, 9 oz bundle of pudge was dropped into my arms and ate right away. I had struggled to hold on to this baby. I had RH negative blood and she was RH positive. This means that my body thought she was a foreign object and was trying to get rid of her. In the first trimester, I was taken to the hospital to ensure she would stay with me.
She did. I made a promise that I would hold onto her no matter what. After 5 days of labour I was exhausted and ready to get the epidural. It was my 33rd birthday. I felt the needle go right through my spine. I said to the Dr. “you did it wrong”. He said “Nope”. It was my second baby and I knew what it should feel like.
During labour I felt the epidural tube twisting in my spine. After she came out – only 14 minutes of pushing – they pulled out the needle. My husband almost passed out. Blood and fluid shot across the room. It felt like someone had beaten me with a baseball bat.
My back felt bruised and a little broken. I went back to work 14 days after she was born. Took no help and pushed myself too hard.
In August (just about 3 months after her birth), I was walking my dog and children. My eldest ran out in the street. I grabbed her and all of a sudden felt like I had been shot. My legs went out from under me and I was blinded with white hot pain. It took me 45 minutes to walk home. Since that time, I have been on a long, complicated and hard journey to fight and stop the pain.
My family has been forever changed. I have lost friends, I have gained friends. My marriage has been tested and survived. I have struggled with mother guilt. I have learned what I am made of.
Here is what have I learned about pain:
- Pain is invisible.
- Pain is misunderstood.
- Pain is forgotten.
- It is hidden
- It is difficult to treat
- It is difficult to diagnose and prove
- Pain thresholds are different for each person
- Pain tolerance is different for each person
- Pain is misjudged
- Pain is exhausting
- Pain is an evolving monster
- Pain takes over your brain, body and soul
- It changes you
- It changes those around you
- Pain is dismissed
- Pain studies/medicine is underfunded and underpromoted
- Pain patients make professionals run in a different direction
- Pain patients are a liability, not a person
- Pain can happen to anyone at anytime
- Pain does not discriminate
- Pain changes
With the population growing older, the demands of chronic pain will increase. The Government has recently slashed pain clinics and studies. If you are in your 40s’ or 50s’ get ready to take care of your family members and their pain. Our health care system will not support you. Treatments and therapies for pain are expensive.
I am hoping by sharing my story, I am able to help someone else. A life in pain is lonely and misunderstood. There were few places I could go to find stories about coping with day to day life. Lots of sites offered treatments, advice and warnings, but not many where someone just said what it was like.
My family also did not have any resources available to them. How do you live with someone in pain? Where do you go? What about your kids, friends, in-laws or co-workers? What resources are available to them? I wanted to put in a section dedicated to these folks.
Readers are welcome to participate, contribute, distribute and/or share this Blog with anyone. If you have any ideas or topics you want to share, please contact me.
For what it is worth, I hope this is helpful for all concerned. If Chronic Pain affects your life, make sure you consult a medical professional. This site, is for social and supportive uses only and not in any way a substitute for medical advice or care.
I hope this provides you with a little help. We need all the help we can get.
Chronic Pain Journal 
REally great blog! Very well written. Isn’t it amazing how doctors think they know our bodies better than we do? Just as when you told him he had inserted the epidural wrong, he just outright says “nope”….so aggravating. I’m enjoying going thru some of your entries! I’m currently laid up with a broken foot/ankle, so have some extra time and am catching up on some blogs…this injury added to my already long enough list of health issues (antiphospholipid syndrome, adhesions/scar tissue, inoperal ventral hernia, short gut syndrome, ibs, fibromyalgia, ddd, osteoarthritis and IC)….gives me quite a bit of time where I can read some of my favorite bloggers! And allows me to be inspired by them and learn from them and to stop feeling like I am the only person suffering in the world! Thanks for sharing! xoxox
Tammy
http://spicyt.wordpress.com
PS….forgot to add the neuropathic pain to my list of illnesses! Due to the 16 abdominal operations, I developed several neuromas and nerve damage due to all the cutting and resewing, etc. Makes my abdomen feel like there are lit matches laying allover it….I just wanted to add that! thanks!
TY for sharing your story. My husband and I we’re just discussing the 2 spinal taps i had while hospitalized with Spinal Meningitus. We were wondering if they (the spinal taps) could have triggered my fibromyalgia? I also had epidurals with my 3 children. I suffer horrid intractible pain 24/7. it is from Fibromyalgia along with DDD, IBS and Diabetes. I’ve really had fibro all my life. I’ve never had good health. I always fell asleep while doing my homework and in school. At 40 I had a “very rare” condition.. A Ceicle vuvulus (my colon turned over on itself). I’ve had migraines since I had my first child at 21. At 67 Fibro has progressed to the point that it’s difficult to walk. I get completely drained from a small outing. Last night was the first time I could not stay up to watch the Oscars. This saddened me a lot. I’m an expert on Fibro and it’s treatments, meds. etc. I’m on FB to help..
I am a mom of 8 wonderful children via adoption. All of my kiddos have special needs and they are the blessing of my life. They are all still very young. And now I have been tackled by unexplained dibilitating chronic pain. I fear for our future. How will I raise my children to adulthood? What about the ones that will never be able to live on their own as adults? I feel terrible for my husband who is being forced to take on way more then his share. I can no longer even care for our daughter with severe CP because I no longer have strength to lift. I am angry and sad and most of all scared.
Hi Kelly, Thank you for your comments and sharing your story. I am so sorry that you have experienced such trauma, especially after bringing so many special lives into yours. The one thing you can think of, is this. You have a strong understanding of how the medical & social system works w/ people w/ disabilities. That helps you to navigate your new path. Your family has a semblance of understanding, as they too fight challenges. However, you have challenges that I could not even begin to fathom. Please take a look at my Facebook Group and on Chronic Babes. The link is on this Blog. They may have people who have similiar situations to you, which may provide you with insight and support, which I can’t offer in it’s entirety. I know that watching my children in pain, challenges and suffering would be and is worse than any pain I have or will experienced yet. My heart and my prayers are with you. Please use as many support resources that you can find to assist you and your family. There are some resources for your husband, not enough, but they are there. I hope that you find what you need, I truly do. I do know that I have found some pain relief since I had hormone replacement and naturopath treatment. Have you looked into your hormone and vitamin levels. Stress – elevated cortisol is what did it to me from stress and pain – will elevate your cortisol levels and you may be deficient in Vitamin B or D. Go have some blood work done w/ your GP. You have a LOT on your plate and your body may just be telling you to stop? I am not sure what treatments you have taken or what your pain is like – but please don’t give up hope and TAKE CARE OF YOURSELF. Your kids can’t be well – if you aren’t. Taking time for yourself is not a guilty pleasure it is a MUST DO. Trust me, I learned that one the hard way. I am sending you as many positive thoughts as I can.
HI Kelly, Prayers for you and your family are on their way…Hope a diagnosis comes soon.
GREAT COMMENTS TOTALLY TRUE .
I FIND THAT. NOBODY UNDERSTANDS WHAT THE HELL
CHRONIC PAIN IS . SUFFERED BURST DISC IN SPINE 4 YEARS AGO HAD FOUR OPERATIONS
SINCE THE DAY OF THE ACCIDENT .2 IMPLANTS IN SPINE LUMBER . MICRODISCECTOMY FAILED A COMPLICATION LEAVING ME WITH NO FEELING WHERE MEN DEFINE THEMSELVES FROM MACHINE . YES JUST BELOW THE BELT CAUDIA,EQUINA SYNDROME DUE TO DR EFFORTS . I AM IN PAIN NOW ALL TIME ON MORPHINE
THE DOC ARE ALL AFRAID TO DO ANY MORE SURGERY DUE TO LOSING MY MANHOOD INDEPENDENCE , SUFFERING ALSO FROM POST TRAUMATIC STRESS DISORDER .
PAIN IS HELL BUT I TELL YOU WHAT I AM REALLY AFRAID OF APART FROM OLD AGE . THE FEAR OF THE SPASIMS NEUROPATHIC PAIN BILATERAL IN LEGS
I KNOW MORE THAN THE FLAMING DOCTORS NOW . QUESTION WHAT GETS ME FIRST MY KIDNEYS GIVING UP OR MY LIVER FIRST ? INJECTIONS AND
MORE PAIN MEDS TO TAKE DOWN A HORSE . I DON’T KNOW WHAT THE WORD FUTURE MEANS ANY MORE I LIVE DAY TO DAY PILL TO PILL . AND NOT ONE DOCTOR WILL HELP ME .
YA KNOW YOUR SCREWED WHEN THE MOST SENIOR PROF OF NEUROSURGERY SAYS YOU POOR POOR CHAP YOU WILL HAVE THIS FOR THE REST OF YOUR LIFE . I USED TO LOVE TO TRAVEL I CAN’T . WALKING IS A KILLER WALKING STICKS . I WILL NOT GO INTO A CHAIR LESS THEY TAKE MY LEGS . WHICH WOULD NOT MATTER SINCE IT’S ALL FROM THE NERVE DAMAGE IN THE SPINE . GOD HELP ME . ONLY THAT I HAVE FAITH IN GOD I WOULD HAVE ENDED IT ALL BY NOW . YOU ALL KNOW DAM WILL WHAT I MEAN ..
ALL I AM AFRAID OF IS MY SOUL ENDING UP IN HELL .
THE AGONY I HAVE DAILY WOULD BE NOTING TO A ETERNITY OF
THE PIT .. GOD BLESS YOU ALL AND I PRAY TO GOD THAT SCIENCE
DOES SOME SERIOUS LEAPS IN PAIN .
SIGNED THE TIN MAN
Hello there,
You have a great & cool blog. I also have chronic pain since june 2006.
I have neuropatic pain in my right leg & Central sensitive syndrome in both my arms. My arms also get heavier since the beginning of each day. I can loose the functions of all muscles at once in my right arm. I can lift a glass of water & then suddenly , it falls on the ground. I am in total pain non stop, 24 hours a day.
Pain relief with medication is minimal but I use a lot my TENS machine = Transcutaneous Electric Neuro Stimulation.
Well said (What I’ve learned about pain). Am home tonight, been home for days, barely able to get out. Haven’t seen a friendly soul in months. My lower back pain driving me crazy, I decided to search the Internet, and I found your site. Well thought, well written. I’ve been suffering from chronic pain, on and off, for 8 years. Two years ago, it went out of control, and since pain has been a daily struggle. Lost my job. Doctors did not know what to do with me, and on occasion they had the nerve to question my mental health, to the point where I started to believe myself that I was probably a little nut. But I knew that it was not the case, that the pain was really attacking. So I pressed on asking for tests. Pain, which started in left arm, is now generalized. It went in one leg, the other arm, the other leg, in the upper spine, the neck, the head, hands, feet, toes… and my lower back. Today, although still in pain and on daily morphine for the last 2 years, I feel vindicated. It took time, but various tests have one after the other shown multiple problems, such as 2 herniated discs in lower back; cervical spondylosis, widespread arthritis, venous insufficieny in both legs, hyperosthosis frontalis (which causes the shooting pain in the head), neuroforaminal narrowings (from moderate to severe) in the upper spine, and I probably forget some others. The general diagnosis, at this point, is Chronic Multiple Neuropathic Pain, Reflex Sympathetic Dystrophy and……. (shit it hurts!) For those of you here who take daily morphine, pleeeeaase make sure to never run out of it suddenly for more than one day. I ended up in an ambulance sick like I had never been in my life! It’s only after they gave me a shot of morphine after a couple of hours at the emergency room that I gradually came back. Anyway, can’t write any more. But I did write a long article. If interested, it’s called “The Lessons of Pain”, and you just have to Google it. I’ll be back on your interesting site. Good luck !
andré r. gignac
Hi Andre,
I apologize for not responding sooner, my new treatments have made me exhausted. So much so, that no computer time was possible.
I am sorry that you have had such a difficult time, but it is important to keep fighting. Don’t you love how Dr.s immediately go to Mental Health issues; instead of dealing with invisible pain. I recognize that some people may fake it, however, why go to 1,000 different Dr.s and tests…..if you didn’t have to.
One time, my old GP left me for 2 weeks without meds…please read Dear Dr. letter….and I didn’t care about the withdrawal symptoms, but because my body was not capable of producing enough endorphins to kill the pain….I wanted to die. The pain was unabating and horrendous. If, I didn’t have my children and husband, I am not sure what I would have done. Thankfully, I had them and just got through it.
There are a lot of resources out there to help. You are not alone and cyber support has helped me get through this more than any other treatment. Finally knowing I wasn’t crazy and that so many other people out there had the same life as me or sadly worse, truly helped my mental health. Please check out some of the other Blogs and my Facebook Group. There are over 2,900 members and still growing….you may find some more support through there.
I am wishing you a pain free day…
Hi. Thank you for your reply. Among other things, you mention the fact that SOME people do fake it (the pain). It is probably true. But the medical profession – doctors in particular – should use their common sense. In my case, for example, I am 55 years old and I’ve worked all my life – and I even fought my employeur to stay on the job. I have multiple medical files in at leat three cities. I have been numerous times in emergency rooms in the last 8 years. My complaints have always been expressed clearly, and most of them have been vindicated later on by tests. Does all this look and sound like someone of my age would go through all this to fake pain? Common sense, I say again, doctors should use their common sense.
yours,
andré r. gignac
I really like what you are doing here. I also started a word press website to share my experience wanting to help others who are suffering. I had a bad accident that broke a vertabrea in my back. Please take a look at my site and the blog Pain is my Guru. I’m trying to figure out how to share it with more people. I’m still lost on word press and don’t know if my page is even seen by others?I googled chronic pain and found you. Any tips or suggestions would be welcomed.
Hi, thank you for commenting on this blog. The best thing to do is to attach the direct link to your site when commenting. Take a look at some of the other blogs on my links and some of the resources.
If you would like some WordPress training, you can let me know. Thanks and hope you are having a pain free day.
Hi! I stumbled on your blog from a comment you left on a pain website. It’s really comforting to hear others fighting to get what they need to function and lead a happy life. I just started at a pain management clinic, and I’m feeling really hopeful from my first visit. My doc is already talking about personal TENS unit, back brace, new MRI, and some type of study on my muscles in the arms and legs. I’m 29 years old with hypermobility syndrome, moderate to severe arthritis in the spine, and slipped discs. It is startling how pain impacts how you think, feel, and what you can do. I’m working full-time, but sometimes I don’t know if I’m going to make it like this. I’m happy to find people out there brave enough, like you, to share their stories. You are a source of hope.
Thank you Stephanie – I have been away so just am getting back in gear. I hope that your pain clinic works for you and that you like and trust your doctor. I am sorry that you are in pain at such a young age too – my second reader so young. Hope is what we need and we will beat this thing. I hope you are having a pain free day. K
Hi Kathleen,
I just saw your message, and thank you for your support. I saw the pain doc and it has been going really well. I feel like we’re on the same page. I’ve expressed worries to her, and she goes with them. I am having less ‘pain days,’ and I even went hiking yesterday. Today, I am paying for it some and my hips are crickety-cracking. I feel ‘bleh.’ However, I am so happy I was able to hike (about two miles). So, I’m going to keep going with this and try to manage side effects. I’m sleepier than usual and a little foggy. I also get nauseated…not fun. Thanks and I am grateful for your presence on this great blog-o-sphere. :hug: