Tell us who you are and a little bit about yourself.
Hello I’m Lisa. I’ll be 30 this year, I live in Exeter with my partner and I’m a fulltime nurse. I wanted to share my story because I was so moved by the other stories shared on Fibromyalgia Chronicles and they’re full of info and ideas, such a great help to people.
How does your fibromyalgia story begin?
Back in late 2019. I was what I call “me” up until Nov’19 when I began to feel burnt out following a really stressful family situation. I just seemed to go downhill from there. I was exhausted, pain all over my body, headaches, irregular and heavy monthly’s, just generally yuk, moody and depressed, crying a lot. This was all so out of character for me, I’m normally what I call a chilled type of person and quite healthy.
What were your main symptoms that prompted you to see your GP?
I think it was the emotional side of things, at times I literally felt I was losing my mind. The main symptoms were insomnia, fatigue, neck pain and headaches.
Approximately how long did it take and how were you diagnosed?
Not long, actually quite quick compared to some of the stories I hear. I had been prescribed anti-depressants and was having regular phone appointments with my GP, who is lovely and understanding. I think it must have been a couple of months in when fibromyalgia was mentioned. I was diagnosed in Feb’20 during a phone call with my doctor.
Out of 10 being the highest what level of stress and anxiety did this cause you?
I was already stressed out by then but I didn’t realize I was suffering with anxiety problems until much later, that’s when I made contact with the Fibro Clinic South West and spoke to Jok.
How did your diagnosis impact on family / friends / work / social ?
I think that this was one of the problems because I was too pig-headed about being given a diagnosis of a long-term condition, so I didn’t tell anyone, not even my partner. I just kept thinking I would get over it and recover, but in reality the pain throughout my body was wiping me out. I had to have time off work and kept having to let friends down. I was on painkillers by then and pregabalin which made me feel useless. I tried to hide this from people but now I realise that they avoided me because I was such a different person to the one they knew. My partner worked different shifts so we didn’t spend a lot of time together, I think I just slept through it all, drugged up to my eyeballs and I hated myself for this.
Did receiving a diagnosis of fibromyalgia
- help to turn things around for you and find a way forward, or
- did it create a debilitating label for you?
Definitely (b), at the beginning I just couldn’t accept that this could happen to me, I’d met quite a few patients at work in the rheumatology clinic who were diagnosed with R.A. and fibro, some patients were completely debilitated by the pain. I was really frightened by it and my anxiety levels started to go through the roof, that’s when I decided I needed to get support for myself, anonymously.
Have your symptoms worsened over time?
Definitely, when I have a flare-up I really notice it a lot more!
What medication were you prescribed? Any side effects?
I had terrible side effects from pain killers, tramadol and pregabalin. Most of the time I felt so spaced out, dizzy and sick and so tired. I put weight on initially but soon returned to normal weight when I weaned myself off the medications. I carried on with the anti-depressants because I was so afraid of going down that black hole again and they really helped.
Were you given any information explaining Fibromyalgia Syndrome and / or referred for treatment?
No to both. I thought I knew about fibromyalgia but obviously not from a specialist point of view. I soon found out how misguided I was about the condition when I had sessions with Jok at the clinic. It all began to make sense to me and was so helpful.
To this present day, has your fibromyalgia diagnosis caused you to make significant changes to your life and how has this affected you and those close to you?
Absolutely yes. Now I’m able to tell people how I’m feeling, my pain levels and flare-ups. My partner is so supportive even though he doesn’t really understand it but I have decided not to talk about it at work or to some of my friends who would just roll their eyes at me. I think fibromyalgia has got such a negative stigma attached to it, it’s easier for me to just stay shut.
What steps have you taken to cope with these changes in your life?
I think the main changes I’ve had to make is accepting my diagnosis as opposed to fighting with it, after all it’s not going anywhere soon. Also learning what my limits are, regarding my energy that is. I’ve also learned to say NO and that this is me giving myself self-care. I’m still working on the guilt trip and getting telephone support from the clinic. That’s another big change, is me feeling ok with reaching out for help.
Have your symptoms changed since your diagnosis and if so in what way?
I’m not sure if they’ve changed or if it’s that I am now able to recognize when my symptoms flare up. I’ve been learning how to recognize my triggers with the help from Jok and keeping a journal makes so much sense. I could see that things start to go downhill at the start of my monthly, so I know to take it easier and rest up at this time. I also keep up with yoga and Pilates which really helps reduce the pain.
What are your main triggers that exacerbate your fibromyalgia flare-ups?
When I’m stressed out. It’s a work in progress!
Do you take supplements or use natural remedies? (please list)
I’ve upped on magnesium supplements and Vitamin B’s. I’ve stopped drinking coffee, at last. I drink herbal teas and more water which has really helped reduce the number of headaches I used to suffer.
What type of support do you have?
I get a lot of support from my partner and we’ve just got a rescue dog, Tammy, and she is so loving and I really think she knows how I feel at times! It’s like therapy for me and making me go out walking and enjoy the outside a lot more. Friends are important and you soon find out who they are! I’ve had a lot of support from the Fibro Clinic and I’m thinking of joining their online group but I’m not a fan of Facebook in general. I’ll be showing up there soon I hope.
Do you experience sensitivity to environmental or emotional triggers such as noise, light, smell, stress, or certain foods and chemicals? Please list.
On and off. Sometimes I’m not keen driving in the dark as the lights coming towards me sends me into a panic. I don’t like loud or constant noise but getting used to Tammy barking.
Do you feel that in general people understand the daily challenges you have to face living with fibromyalgia?
In general I don’t think people do understand, I think because I look the same and they can’t see why I hurt, it makes it difficult, personally now I don’t care if they do or don’t, it’s me that has to get on with it.
What is the worst aspect of living with fibromyalgia for you?
Sex. It’s painful. I’ve gone right off it!
Has coping with fibromyalgia made you more mind – body aware, giving you a deeper connection with your body and emotional state? Would you describe this as a good or a bad thing?
I’m working on the mind-body awareness thing, I’m a trained nurse and so used to relying on pills to fix everything, except when it comes to fibro that is! Saying that I am more aware of how my body and pain affects my mood and vice versa. I’d like to learn more about this and looking forward to the workshops at the fibro clinic in Barnstaple.
Do you have any Fibro Top Tips you would like to share?
Yes, don’t be afraid to reach out for help and support and get knowledge-based info. And keep moving!
What advice would you give to someone newly diagnosed?
Learning to accept the diagnosis was key to my well-being, so I’d say that’s the best advice – acceptance ohh and call the Fibro Clinic South West as soon as you can!
Thank you Lisa, for helping others by sharing your story and raising Fibromyalgia Awareness