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Degenerative disc disease, a disabling disease that disrupts daily life

Noémie is 23 years old and is a member of Carenity in France. She suffers from back problems called degenerative disc disease. The disease is not pathological for all patients, so it is often trivialized. But for her, everyday life is strongly impacted.

Hello Noémie, can you introduce yourself?

Hello ! I am 23 years old. I am a person full of joy and also  a little crazy, I love laughing, talking, I am a real chatterbox and I never stay inactive for very long. I am also a sensitive person and sometimes I take things to heart. I am a normal person with qualities and flaws.

When did your back problems start?

My back problems started at the age of 13. I have never had scoliosis, but I have always been sensitive to it because my father also has back problems.

Several factors come into play: I was carrying heavy things (shopping to help my parents, cement bags when I was helping my father with tinkering) and I experienced violent shocks: one in judo, the other when I fell from a hammock. My breathing was cut off and I had pain for several days.

My symptoms seemed to be like menstrual pain but were localized in my lower back, a feeling of tightness and as if my back was being crushed. It was unbearable but it wasn't as frequent as it is now.

Were you quickly taken care of?

Yes, I think that when you're young, you're better taken care of. Appointments with specialists are more accessible and finding a physiotherapist is easier. With my parents, I saw specialists who diagnosed me with spondylolisthesis with a slip. I wore a corset for a year, first 24 hours a day, then only during the day. An operation was considered once my growth was over, but a second opinion discouraged us because the results were not necessarily conclusive.

I then followed physiotherapy sessions that advised me to go swimming and cycling. I was exempted from all jolting or violent sports played at school. Looking back, I have the impression that the treatments I have been offered are those offered to all patients who come for back problems. It is the disease of the century that is unfortunately too quickly trivialized.

Your back problems then got worse.

I started working in oncology at the age of 19 with three hours of transport a day. After a year and a half, I wanted to take a break. I worked as a saleswoman and cashier: back problems have only increased. After a while, I missed the medical community and successfully applied for a position as a post-care and rehabilitation assistant. Given the workload and lack of staff, I did not spare myself and my back problems quickly caught up with me.

There is not a day in my life when I don't have any pain, but I live with it and there are some that I've gotten used to. My symptoms are pains that gs from my lower back to my legs. I feel crushed, my legs are heavy and the pain is intense.

Do you feel that you are being taken seriously enough by health professionals?

For many professionals, back problems are not a priority. I even met a rheumatologist who asked me why I came to see her when I was walking like a 90-year-old grandmother. I found her inhuman and insensitive. She manipulated me in all directions, she applied pressure to my legs to stretch them and hung at my feet to test their strength. I told her it hurt and she told me that she was not there to take care of the pain. Finally, she looked at my x-rays and said she didn't see anything. She said I had nothing, but she still admitted that I was very handicapped... Her solution? "A little pool and you're good." I came out more broken than ever physically and psychologically.

I questioned myself, I said to myself that maybe I did not have anything. When another doctor confirmed they saw nothing on the x-rays, I thought I was going crazy. Then I saw another specialist. The consultation lasted 10 minutes. He checked me and told me that I had scoliosis, slippage, pelvic tilt and degenerative disc disease.

Does your pathology have an impact on your social life?

Of course, this problem has had an impact on my social life. When I know I'm going to walk "for a long time", I take my crutch. I no longer drive, I walk very slowly, sometimes I can no longer climb the stairs alone.

I have already refused to go out or go to the cinema because it quickly becomes painful and the seat is not comfortable. I loved shopping, now I can only do a quick fitting. I have already put some articles down because there were people there and because the pain was starting to set in.
Apart from the swimming pool which is recommended (except for the breaststroke), many sports or activities are forbidden to me: horse riding, bowling, running, combat sports, ice skating, climbing too. As soon as there are tremors or shocks, I can't.

Do your family support you or do they minimize discopathy (which is not pathological for everyone)?

What is annoying is when people tell you it's not a big deal. I also liked doing things that I had to stop overnight. For example, I can no longer walk my dog who pulls too much on his leash... It's a sudden change.

As my whole life is changed, so has my boyfriend's. Some of my relatives have refused to say that it was a disease, simply because it is difficult to use that term when it is a condition that is not visible.

"There are worse things than you" is the kind of boat phrases I've heard before... But there are also better things than me at 23! It is easy for them to say that because they do not live with me and are not confronted with all the changes and concerns that this problem generates. They are not the ones who are in pain when they cook or sweep... I don't want people to feel sorry for me, but I just want people to recognize a problem when it is a problem. That doesn't make me another person; I'm me with a problem. I have to anticipate and be careful every day to reduce the pain as much as possible.

How could we better help patients suffering from disc disease?

For people suffering from this pathology, we should tell them that certain steps take time and that even if we can no longer do certain things that we used to do, we must look for other areas of interest. Even if it's not easy and even if at times, you can't resist, you have to be happy and enjoy all the little moments that life offers you.

And when we're old, everyone will have more or less back problems... we just have a slight lead!

What advice would you give to a newly diagnosed patient?

If a patient has just been diagnosed, especially if he or she remains positive and cannot find support, do not hesitate to talk to a professional about it. We must look for leisure activities that are feasible and that allow us to take our minds off things. Above all, anticipate the slightest action that can be taken to reduce pain as much as possible.

 

 

Thank you very much to Noémie for sharing your story. And you, do you have back pain? How do people around you react and how do you treat yourself?

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments

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on 4/7/19

Noemie, I understand exactly how you feel. In 2009, I over did on the Treadmill in the gym. I went too fast, on higher incline and for too long. The next morning, I had low back pain, and I thought nothing of it. Brushed it off as over doing in the gym. The backache refused to budge and increase each day. I have always had back problems since my 2 Road traffic accidents in both of them I fracture my pelvis in 4 places and healed with a deformity. I had steroid injections in my spine when the pain became unbearable since 1999. I still didn't think that my back pain was serious. After my 12th Steroid injection, my pain did not lessen. I started to have pins and needles down my leg. I got to a stage where I could not stand, sit or walk. After 6 months of my suffering, I was referred to a Neurosurgeon who after doing an MRI scan confirmed that my Sciatic nerve was solidly trapped between my L4 and L5 and that I needed surgery to free it. I was in so much pain and suffering so much, I opted for the surgery. On hind site, I wish I hadn't. Wish I had gone to a Chiropractor and tried some manipulations and exercises, but no one advised me to do so. Any ways, I had the surgery and had tremendous relief of pain, and I was convinced that I did the right thing. How ever, once you have a spinal surgery, multiple problems arise. In 2003 I was back in pain. i noticed that my shoulders and my hips did not align. My bottom was sticking way out and my shoulders were pushed way in front. I went to my GP who refused to believe that there was anything wrong with me. He was rude, considered me as a time waster and attention seeker. I started walking with one stick and it did not help my posture or pain. So used 2 crutches and the GP scorned at me and made believe that I was faking my symptoms, even though he knew that I was long standing, an experience qualified nurse. After several visits for 6 months, he decided to refer me to a physio, who took less than 5 minutes of looking at my back and was on the phone to GP and said that I had a massive pelvic shift and needed an urgent MRI scan. It was only then he started the ball rolling and realized that I had a slipped L4. Had to have another surgery, but due to surgeon's blunder who left a screw on my nerve, compression the nerve and used the rod that was too short and I was still bent and in pain and developed foot drop, which until this day is not cured. I was taken back to surgery to rectify his error, which in turn made my L3 slipped and I developed Scoliosis and I was bent to my middle and twisted to my right side. Back to the surgery for repair of the scoliosis where another blunder done by Back surgeon. I was not stretched enough pre surgery on the stretch test, with the result, I was untwisted, but unable to be stood up, as the rods used were too small. suffered this position for another 6 months and was back to the surgery and finally the metal work consisted of 2 long titanium rods, 18 screws 2 bolts and a cage. Now, although my scoliosis is corrected, after having had 5 spinal surgeries, I am maimed for life.  I am bent from my hips and need 2 crutches to hold me up to walk. In the house I don't need them for short distance walk and always have a chair to sit down when unable to stand up. But out on the road, I am unable to walk without crutches. I used to dance a lot and do a lot of aerobics. Now I can not even go shopping on my own as I can not carry any shopping bags with my 2 crutches. Although i am grateful that I can still walk, swim go the gym, I am maimed by medical blunders. Sorry this is so long, but my point is, for any one who has back problems, please please always look for options other than a surgeon's knife on your spine. Once the spine is touched with a knife, it progresses to other back problems.

Thank you for taking the time to read this long drawn out comment

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on 4/15/19

So sorry to hear how much you are suffering at such a young age. As you have many years ahead of you it is important to get as much help as possible, to enable you to live a reasonable active life. I am much older than you but have suffered since I was 42 with degenarative discs which have now bulged. I do find some are more helpful than others in finding the best course of action. I never have a day when i'm not in pain, some days are worse than others, but I do try to have a twenty minute walk each day. I do back exercises in my own home as and when I feel able as its important to keep muscles as strong as possible. Thank you for sharing with us and good luck

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on 4/18/19

@Hidden username @Hidden username Thank you both for sharing :) Back pain is a daily, difficult pain that can make even simple tasks difficult...

Do other members suffer from back pain?

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on 4/18/19

Hello Josephine

I have most certainly read this testimonial and found it very interesting. I have made supportive comments on those posts who are or had suffered with this disease. With me having had 5 Spinal surgeries with multiple slipped discs, understand only too well what they are going through.

Thank you

Christina

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on 4/29/19

Hello,

I finally had back surgery last February 2018 and was told that it would fix the issue after having been waiting for 7 years as at first I was told that it was all in my imagination and that as i also suffered with depression, it was this and not my back that was bothering me.  I went and saw a consultant who after multiple visits and 3 years waiting decided that i was suffering with degenerative disc disease in my lower back, So i was sent to see a pain specialist which took another year and a half.  I had injections done that at first did help but then stopped and was then sent back to my consultant, who in this time had retired and I was replaced on another's consultant list and then it took another year to eighteen months to actually see him, and he turned around and stated the exact same thing as the original consultant and that pain management was the way to go, so back to the pain specialist who then told me that there was nothing they could do that my only option was back surgery.  Now during this time I was going to my gp and she was lovely and she did everything she could to help but her hands were tied.

Now the pain was going from my back all the way down my leg and the spasms were killing me, I had to start using crutches as my ankle kept going from under me especially when the spasms were really really bad.  So I found it harder each day it get around and I am a single mother with depression and a teenage son, who is amazing, as he helps me around the house when I am unable to move or clean the house, which made me feel worse as it should be me as his mother taking care of him and not the other way around.  My parents and family were like stop complaining and just get on with things there are people who are in an awful lot worse condition and that you would not see them complaining.  Which made feel so so useless, and I started only leaving the house to bring my son to and from school and to done the shopping once a week, rest of the time I would stay in the house.  My gp kept changing my pain medication to try and get me better relief from the pain and i have been on difene, lyrica, cymbalta and currently I am on oxynorm and oxycontin as well as lyrica, panadol and amitriptyline.  

I had a follow-up visit with my surgeon six weeks after the surgery and I was fighting off an infection I had picked up after the surgery, and he checked me out and asked if I was still in pain and I said yes that I was still in agony and he informed me that there was nothing else that can be done, that the nerve damage was permanent and that I would just have to deal with the pain.  So I went back to my gp and she had received the report from the surgeon saying that the operation had been a failure and that the only thing left was to manage the pain.  So now I have to take on a good day only 12 tablets and on a bad day which are so much more than any good days I have so usually it is between 18 and 20 tablets a day.  So I have to try and schedule my days to get things done and I have not been able to take my son on holiday or for a weekend away in years because I am terrified that I will have an accident or my back will flare up and ruin the days away.  So now I barely leave the house unless it is to take my son to and from school and shopping, going to the cinema is always a challenge as I can barely sit for 10 minutes never mind the lenght of a movie.

But because it is not a visible injury my family and friends look at me like I am making it up and that as I cannot work that I am lazy which I wish I was, I would love to me able to work.  I feel like I am a disappointment to everyone starting with my son as he is getting so big and getting older and understands more and more and I feel like I am letting him down all the time.

Thanks

Kat

After two false starts as the operation was cancelled twice i finally had the operation