Today we’re talking with Renuka Dhinakaran from the Netherlands city of Den Haag. She’s a 35-year-old, burned out, international lawyer, wife, and mother to an 8-year-old boy, who lives with fibromyalgia as well as several other chronic illnesses. Renuka was diagnosed in 2014 at the age of 29, after suffering for four years prior.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have polycystic ovarian syndrome (with pre-diabetes and hypertension), degenerative disc disease, gallstones and non-alcoholic fatty liver disease, leaky gut and GERD, mild dysphagia, generalized and somatic anxiety disorder. The irregular periods and severe hormonal imbalance impact my pain as well as anxiety levels severely. There have been times when I’ve had 3 periods every month (and I usually have a severe panic episode before every period). The gallstones, dysphagia and GERD make eating a living hell. The degenerative disc disease just makes my lower back and everything below extremely painful, especially in the colder months.
What lead up to your diagnosis?
When I started working in Amsterdam, while living in Den Bosch, I thought the commute was making me tired and I eventually quit. However, my pain, fatigue, fogginess and acid reflux just didn’t get any better – especially my lower back pain. Around this time, I got pregnant so everything else was forgotten. A few months after I got pregnant, I was diagnosed with degenerative disc disease. I was told that all my pain and fatigue was because of this. After countless medications and physiotherapy sessions, while my lower back pain improved, fatigue, and other complaints did not. I was repeatedly checked for arthritis and told I was fine. Finally, a kind specialist in a hospital in the middle of nowhere diagnosed me with fibromyalgia, following the tender point test and listening to my symptoms. I remember a huge sense of relief – that there was a name to what I was feeling and that it was not all just in my head.
What do you feel is the most challenging aspect of Fibro?
That there will, in all likelihood, never be a day in my life when I wake up in the morning and feel like I have actually slept for 8 hours, refreshed; or that I will ever go to bed without pain that a normal person would consider to be excruciating. After nearly 10 years, I still have not been able to wrap my head around this.
How open are you with friends & family about your illness & symptoms?
In the beginning, I was not very open – especially in my professional setting, as I did not want my competency questioned. I tried opening up to family and friends but was always told to try this or that or that it will be alright one day. I got fed up trying to tell people that this was a chronic illness and that is not alright, so I stopped talking. When I did talk about my illness, I would induce a positive word here or there (more for the benefit of others).
Now, I am pretty open, as I write a blog about it. People can take me as I am or leave. I am extremely grateful that I have wonderful friends and family who accept me, warts and all, and have formed a supportive network around me and my boys. I write my blog not just as a place where fibromyalgia or anxiety sufferers can come and find information that is useful – but also as a place for others to understand about these conditions.
How has fibromyalgia affected your relationships?
This has been the most difficult question to answer. To begin with, I had to deal with family and friends saying I didn’t look sick at all. Then, I had to deal with them throwing toxic positivity at me. There was a point when I just stopped talking to certain friends (and even family members) unless absolutely necessary.
The relationship with my husband was the one that was impacted the most by fibromyalgia. My husband, to his credit, never once doubted the diagnosis. He, like me, was relieved to know that my suffering had a name at last. In the beginning, he did his best to help me, but slowly the diagnosis sort of went into the back of his mind and we both carried on as though life was normal. However, he always did the school runs, and helped with house work whenever he could.
The real struggle for me in the marriage was feeling alone emotionally while I was in pain. It did not feel like my husband took any particular step to understand my disease and see how he could help me actively. Even though he was in the pharmaceutical sector, he did not really do any detailed research to see options that could help me. I started realizing that I felt alone at times in this struggle. Today, however, after several counselling sessions together, he is my ally in this fight. He knows every treatment I am undergoing and stands by side physically and emotionally. So, my advice to anyone in a relationship and has been diagnosed with a chronic illness is to get couples’ counselling.My advice to anyone in a relationship and has been diagnosed with a chronic illness is to get couples’ counselling. via @renudhinakaran Click To Tweet
My relationship with my son was very hard in the beginning, when he was a child. I couldn’t carry him whenever he wanted, take him to the park, or play with him endlessly. However, as he is growing up, it is one of the best relationships in my entire life. While I do worry occasionally about how my pain has impacted his childhood, he put it all to rest by saying that because of my illness, and how I handle it, he is a stronger child than anyone he knows. I am proud of teaching my child about resilience, above all.
Fibromyalgia has also taught me about the true value of good friendships. I have wonderful friends who have supported me in all forms – from filling up my freezer with food during bad months to babysitting me when I had anxiety episodes. I will be eternally grateful for these friendships.
Fibromyalgia has taught me about the true value of good friendships. via @renudhinakaran Click To Tweet
What (if anything) have you found/ done that has improved your symptoms?
Eliminating gluten, dairy and sugar (although I do slip up now and then) – this has improved my gut health tremendously. Doing restorative yoga, dry needling, a physiotherapist who knows the difference between trigger points and tender points and therapy – especially Acceptance and Commitment Therapy. Supplements, such as Vitamin D, a high potency B-complex and Magnesium have also helped me a lot.
What do you do to cope on bad days?
I take a paracetamol, fill up my hot water bag and get into bed with my headphones playing soft music or meditation. I cancel my appointments, if any and if I have to do something or get somewhere, I do yoga nidra and ask for help from as many people as I can. There are some battles you win and some battles you lose – a fibro flare is not one that you can win. Better to think like an accountant and write off that day!
What is the best advice you’ve received regarding Fibromyalgia?
Pace yourself. These two words can mean the difference between going to bed with a hot water bottle or ending up in the ER. Literally!
What is one thing you’ve learned about yourself since your diagnosis?
That I am not as weak as I think I am, but
I am not as strong as people think I am either.
What’s one good thing that has happened in your life since you became ill?
Regular exercising. I could never be bothered before I got ill.
What is it that inspires you to keep going, despite your illness?
Living a meaningful and purpose filled life.Pace yourself. These two words can mean the difference between going to bed with a hot water bottle or ending up in the ER. Literally! Click To Tweet
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Take a deep breath, allow yourself some time to be angry about the unfairness of it all, then sit down to research and find a doctor who actually knows about this disease in your vicinity. That will make the difference between surviving and thriving. I wrote a lot more about this on my blog here.
Do you blog about your illness? If so, what inspired you to do so?
Yes, at https://www.apainfulidentity.com
After sitting at home for a year following a near-death experience, and when it became increasingly clear that I could not go back to practicing law for the foreseeable future, I decided that I needed a purpose outside of my existence and my family. I realized that writing about my experience with chronic pain and anxiety might be cathartic for me as well as useful for others. Blogs like counting my spoons and Melissa vs. fibromyalgia are my biggest inspirations. I must say it has been a rewarding experience so far.
You can reach out to Renuka via her blog or on social media:
- Blog – https://www.apainfulidentity.com/category/fibromyalgia/
- Twitter – @renudhinakaran
- Email – firstname.lastname@example.org
- Facebook – @A Painful Identity
- Instagram – @apainfulidentity