Fibromyalgia and degenerative disc disease: "I fight every day for my family!"

Hello Sandy, thank you for agreeing to share your story with us on Carenity!

First of all, could you tell us a little bit about yourself?  

My name is Sandy, I am 39 years old, I am a mother of 4 children and I have been living with my partner for 21 years. I am a house employee on a hunting estate, a castle owned by a private individual.

I like music, walks with my dog Naya, and fishing with my family.

You have fibromyalgia and degenerative disc disease. What symptoms let you know that something was wrong? What tests did you undergo to get a diagnosis?  

The pain started at work around the beginning of 2017, I had pain in my arms, elbows, and left hand. So I was put on sick leave. At first I was told it was De Quervain's tenosynovitis, I was operated on 3 March 2017.  

Then, the pain continued and was spread out through my whole arm. This time they told me it was Golfer's elbow (medial epicondylitis). 

In April 2017, I was involved in a car accident, a person hit me at 90km/h. Afterwards, I had constant neck pain, I had to wear a neck brace for 1 month. In addition, I was informed that I had frozen shoulder (adhesive capsulitis). After a few months of sick leave, I was back on part-time work for a period of 1 year. 

In February 2019, I had an accident at work: I felt a huge crack in my shoulder and right arm as if my tendon had ruptured. After several x-rays and MRIs I was told that I had a partial rupture of the right supraspinatus tendon. I was given an appointment with a surgeon who refused to operate. 

In April 2019, a specialist prescribed me a series of rehabilitation sessions. So, in July I go there for a consultation and the doctor on site examines me and tells me that my GP needs to send me for a scan because of the state of my cervical spine. My GP refuses and I start rehab for 4 months, from September 2019 to January 2020. Due to an injury I had at the centre, new tendonitis in my forearm, and also due to my weight loss, they decided I was too weak to continue the therapy, and discharged on 3 January 2020.  

I went back to my doctor because I still had this tremendous pain down my back and right leg. I put my foot down and demanded a prescription for a scan. I get it and do it on 14 January 2020. The result: I have degenerative disc disease. I went to see him again to tell him that the doctor at the rehabilitation centre was right and asked him if it was related to my car accident. He said no, but I was convinced of the opposite.  

I then spent a few months without a doctor, because he had a serious accident. I then finally saw a new one, who examines me and tells me that my life is not going to be easy and that I'll have to get used to the pain, and that he's going to admit me to hospital for ketamine treatment.  

I enter hospital from 26 August 2021 to 3 September 2021. At first I am on 25mg of ketamine in addition to my usual treatment. After 2 days, when I tried to get up from my bed, my back and legs were blocked, they were unresponsive, I couldn't stand or walk. I had massage therapy and increased the dosage of ketamine. The next day I felt better and was given a questionnaire to complete.  

The doctor came to tell me that I would have to learn to live with my pain and disability because in addition to my degenerative disc disease, I have fibromyalgia. He was certain of it. According to the questionnaire I filled out, I have 14 out of 19 points of sensitivity. Not cool. 

How did you feel when you received your diagnosis? Has your diagnosis changed things in your life? 

When I was diagnosed with my degenerative disc disease, I was angry with my GP, I went back to him to tell him that I didn't understand why he hadn't done the tests earlier because at the time of my work accident, I had told him about the pain, and on top of that, he had been treating me for 22 years!  

For the fibromyalgia, I told the doctor at the pain centre that if I understood correctly, I was going to be in constant pain and that I had to get used to it, he couldn't even reassure me about my leg to tell me that I was going to be able to walk normally, even though the pain was horrible.  

At the time in my life when I received both of these diagnoses, I was alone. Completely alone to process what the doctors had discovered.

What treatment have you received? Are you satisfied with it? Have you experienced any side effects?  

My treatment includes pregabalin, tramadol, and nefopam. I was also on amitriptyline before, but not anymore.  

Yes, I have side effects, I have a lot of trouble urinating, I can go almost 24 hours without having a wee and I have pain in my kidneys. I've also lost my appetite, I only eat in the evening, even my 8 year old son eats more than me.  

The pain is always present, it sometimes diminishes with medication, but it always starts up again. 

Long-term treatments can take a significant toll, both physically and mentally. How have you managed all of this?  

I think I have a strong mindset and I'm not depressed as the doctor at the pain centre would suggest. I fight every day for my family, I have children. 

But yes, I do have mood swings often because I'm sick of seeing myself in this state.  

Have your loved ones been supportive? Are you able to talk openly about your condition with those around you?  

No. My relatives don't support me at all, I feel like a burden to them. My children told me that I was ruining their lives with my illness and my disability. My partner denies it completely, he tells me that I have to live with it and that it won't get better. I don't see the rest of my family. My mother knows about it but she doesn't think it's that serious and doesn't care.

What impact have your conditions had on your daily life, your relationships with friends, family, and romantic partners?  What has been the most difficult for you?

In terms of the impact on my daily life, well, there are things I can't do any more. I need help all the time, I can't carry heavy things any more and driving is becoming more and more difficult. 

My family and friends don't understand, they accuse me of doing it on purpose as if I was the one who decided on being in pain, of being immobilised and not being able to walk or move!

How do you live with these two conditions in the day-to-day? How is your health today?  

I try to do things every day, or at least I force myself to do them. I try to keep my house clean and my partner helps me with the cleaning.  

As soon as I'm more active, it can trigger pain, so I take things one step at a time. I'm not sleeping well at the moment, I'm sore all over. And I've had operations for other medical problems (teeth and stomach). 

Today I'm happy, I've started balneotherapy and physiotherapy again. I'm delighted to be going back. It does me good to see people and it clears my head.  .  

What are your plans for the future?  

I can't project into the future, it's difficult for me, I wonder if one day my pain will go away.  

What do you think of patient exchange platforms like Carenity? Why did you become a member?  

I think they're great. I meet people to talk to, I participate in discussions and I feel like I'm not alone.  

Anything else you'd like to add?  

Happy New Year 2022 and all the best to you all!