Fibromyalgia and Singing

” The only thing better than singing is more singing”, Ella Fitzgerald

The singer/songwriter Shelly Quarmby has just released  a six song EP entitled Change; the proceeds of one of the tracks will be donated to the  Fibromyalgia Association of the United Kingdom (FMA UK). Her own struggles with fibromyalgia inspired her to make this contribution. Shelly has a Canadian connection, as she lived in Toronto while she recorded her EP there. She has agreed to answer some questions for us regarding both her career and living with fibromyalgia. She is available for viewing on itunes and her music is soothing to the ear!  Her website is: www.shellyquarmby.com/shop.html and I urge those of you who need to be uplifted  to buy her music!

Lives that are afflicted by this invisible dis-ease are often spent in social isolation, but the stories of those who carry on with dignity are numerous. Shelly is one such woman. My first questions to you Shelly: When were you diagnosed with fibromyalgia? Perhaps you would be willing to tell us something about your early life and what you think precipitated this syndrome?

About Barbara Keddy

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology. I am married, a mother and grandmother living on the east coast of Canada. I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
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7 Responses to Fibromyalgia and Singing

  1. Shelly Quarmby says:

    This is hard to explain, but I guess I have to cut a really long story as short as I can!! I was finally (reluctantly) diagnosed with Fibromyalgia Syndrome by a rheumatologist when I was 18 years old. My Mom said to me the other day “you have been ill since the day you were born”.(!) I was born premature and was very accident prone as a child. They say that some triggers of fibromyalgia syndrome can be a fall or accident, after a viral infection or surgery. By the time I was 15 years old I had experienced all of these things! (to date I have had six individual operations). So, I can’t say for certain what triggered it but I think I have an acute awareness of my body being a performer. I danced from the age of four and played instruments and sang throughout school and went on to study both Performing Arts and Music.

    I have a slight hearing problem in my left ear, for which I had an exploratory operation when I was about 12 years. Damaged had been caused to the bones of my ear probably as a young child (due to the fact the bones had formed differently) doctors suggested through a fall involving hitting my head, the only thing my parents remember is me falling off my bunk bed and knocking myself unconscious when I was 2 years old.

    I also believe I have always had a weak immune system and although both my sister and I suffered from Glandular Fever (Infectious Mononucleosis or mono) I was the one who ended up in hospital on steroids with liver mal-function. Around about the same at 15 years old I injured my pelvis and hip whilst dancing. I had also previously suffered from unexplained neck and shoulder pains not due to dance, but it had been suggested it felt like a whiplash injury. But, a car accident is one thing I have never had.

  2. Shelley, it seems as though you had a difficult childhood with so many operations and injuries. It is little wonder you finally developed fibromyalgia. In order to save time (yours) I will ask you a series of questions, ok? Would you be so kind as to describe your personality for us? Would you describe yourself as highly sensitive? Everyone seems to have a specific role to play in a family. Could you describe yours? How do you keep going if you have a flare-up? What motivates you to keep up with a busy career? Do you believe that fibromyalgia is caused by a hyper-aroused nervous system? Phew! Lots of intimate questions here , sorry, I don’t mean to overwhelm you. Barbara

  3. Shelly Quarmby says:

    I wouldn’t describe my childhood as particularly difficult, apart from not being 100% most of the time, I was pretty normal.

    Would you be so kind as to describe your personality for us?

    I like to think I am friendly and kind and I know I can be stubborn sometimes. Even though I have no problem getting on stage and performing for people, I am fairly reserved in my nature and extremely independent. I am a bit unconventional, not too wacky; I sometimes make a point of being different just to play devil’s advocate! I would say I am idealistic in my thinking, which occasionally takes away from getting day-to-day things done!

    Would you describe yourself as highly sensitive?

    Yes, I am highly sensitive, but I’m working on trying not to be! And, I’m glad my family are not with me now or they would all be laughing and nodding!

    Everyone seems to have a specific role to play in a family. Could you describe yours?

    I am not sure, as I’m a singer probably the entertainer? I love my family, we are very big jokers, always singing and dancing around for fun. I am the youngest in my family (I have one older sister). We are close in age, just 18 months apart; she very much fits the role of ‘big sister’. It is quite hard to pin point my role as such but I’d say the rest of my family all feel a responsibility towards ‘looking after’ me, even now.

    How do you keep going if you have a flare-up?

    I know that as long as I have my hearing (fingers crossed!) I will always have music. Music is inspiring, it’s healing, it releases emotions and endorphins. So when I have a flare-up, initially I don’t slow down, I try and accomplish as much as I can in my own music. Then I take some time to listen to what everyone else is doing with their music. I loved Toronto for this, I met some amazing musicians and as well as a musician I’m also a new music fan, so when you’re not feeling great taking time out is like research! I do admit I play the martyr a lot. Sometimes having a flare-up actually inspires me more to help myself and to look after myself more. I always think what I should have been doing to keep myself well so I also throw myself into reading more about it and researching news ideas. If you meant how do I keep going with more practical means (treatments, etc…) I’ll expand on that if you like?!

    What motivates you to keep up with a busy career?

    The motivation to keep up with any career has to be the fact that you have to love what you do, if you don’t essentially have a passion for it, something in you will hold you back. Music is a difficult business especially now, things are always changing and sometimes I do feel like if I have any amount of time out, I miss out, so that’s the most difficult part. People only see what you ARE doing, not where you are or what you’re doing when you’re not around. I don’t see fibromyalgia as an obstacle anymore and actually the song ‘Change’ was inspired out of more than just fibromyalgia, it was constantly watching people around me use excuses not to do something, we all do it all the time. In terms of keeping up; for me it’s about balancing my mind, I can quickly become overwhelmed by all the physical reasons as to why I shouldn’t sing (tight diaphragm and breathing muscles, tmj, hearing problems etc…) but I use yoga therapy, breathing exercises and other exercise to help. My main issue is maintaining a timetable of all these extra activities! I am very passionate about healthy living and nutrition too. So, my motivation is when people take time to come and tell me they enjoyed a performance, or they email me to tell me their enjoying listening to my music. It’s also when I don’t feel exhausted after a gig or just having fun jamming with a band.

    Do you believe that fibromyalgia is caused by a hyper-aroused nervous system?

    I certainly think that when you look at the evidence and research into neurotransmitter and hormone levels it is interesting, but I still think that it is a combination of causes, it may be this coupled with a trauma or injury. I can obviously only talk for myself which as I mentioned before is confusing because I have had operations to my ear, nose and throat. I had my appendix out whilst on holiday in France when I was seven and some research is now showing that the appendix may have some immune function, but then everyone who has Fibromyalgia may not necessarily have had their appendix out, but then could this also count as a ‘trauma’? It’s very hard to determine one thing, but I welcome research.

  4. Shelly, you are indeed an inspiration. After reading your story it seems to me that all the surgeries and injuries certainly did overwhelm and traumatize your nervous system! That coupled with the fact that you are a highly sensitive person which may or may not have been because of the traumas OR perhaps the nature you were born with. Anyway, that would be my theoretical analysis!
    My final two questions to you: yes, the “more practical means” of helping yourself through (treatments) would be interesting for the readers as question # one and then finally what advice would you give others who have fibro if they do not have a passion like music to inspire them to keep going day after day with pain and fatigue?
    You have been such an excellent person to interview and I wish you the very best with your music and i am sure my readers will reward you with supporting your music! Thank you so very much!
    Barbara

  5. Shelly Quarmby says:

    “more practical means” of helping yourself through (treatments)

    There are some extra things I do when I have a flare-up, but I believe generally that maintenance is the key to staying well with fibromyalgia, so the treatments I use are for that. I recently started a blog (which can be accessed through the news section on my website http://www.shellyquarmby.com) and in it, I mention that there is no ‘quick fix’. It has literally taken me years to work out what works the best for me, therefore I have tried out a number of different treatments, things that I do regularly (nutritional support), some say every two weeks and some once a month or even quarterly (physical treatments such as massage/acupuncture/osteopathy). Mostly I believe managing stress and taking time out at the end or beginning of the day to relax (meditate, listen to music, exercise, breathe!) properly helps during your worst times. During my research and through some unfortunate side effects of medication I take a holistic and mostly natural approach and although I am not opposed to prescription medication I would like to see how people can get to a maintainable level of pain, fatigue and other associated conditions before going for the highest dose and that takes time and education. I have always been active and I only gave up dancing when I went on to study just music. Exercise is the one thing I could never give up, especially having fibromyalgia. It is so important. I don’t mean running a marathon, people get scared of the word exercise – it simply means to move! Even when have a bad flare-up it I keep up with some light yoga at least. Generally, I do some light aerobic exercise, pilates twice a week and yoga daily. I started with hatha yoga years ago and eventually got a little bored. Now I see a yoga therapist who designs routines specifically for the way I am feeling and what part of my body needs work. It is based on ViniYoga and I love it, especially for the breathing exercises, which are important to release stress. I have sinus problems and I have found Chinese acupuncture works well for this as well as supporting my general well being and immune system, it can also be used for pain relief too. I think patients with fibro though should get a recommended acupuncturist who is registered and be aware of the difference between traditional Chinese/Japanese acupuncture and physios or chiropractors who use dry needling. Like any doctor, with natural therapies, you also have good and bad therapists and I believe that it’s very important to have a good therapist relationship (I just left a great chiropractor in Toronto, who helped a shoulder injury I have with A.R.T.). After initially having treatment from an osteopath (many years ago) he referred me to a homeopath which I found (and still do) fascinating, and the results for me were amazing. Now I also use some over the counter remedies like arnica before and after exercise that is more strenuous or when I see the dentist! I take immune supporting supplements as well as iron and a calcium/magnesium combination. I love using aromatherapy massage and have an aromatherapy and homeopathic remedy kit for all times of the day, as well as the cleansing lemon, honey and ginger warm water (variations can include sprinkle of chili, cardamom in the winter or fennel) I drink every morning and immune boosting smoothies and soups (too many ingredients to list!) I prepare in our Vita-mix™. Like many, I also have IBS and I manage it mainly through diet and exercise. I haven’t eaten meat since I was about 12 years old anyway and I don’t eat dairy (and try to avoid wheat) now either for both my singing and IBS. I have an avid interest in nutrition and have also recently looked into Ayurvedic nutrition. I try to avoid all refined sugar and processed foods as well as carbonated drinks. Due to the fact that I am aware of my vocal health I drink herbal teas and honey (organic and/or manuka) too. I also avoid toxins in personal care products and now use chemical free ones in all health and personal products.

    There are so many more things I do, and although it looks like a lot, once you incorporate small things into your daily routine it becomes much easier to make changes to your way of life and I believe that’s what you have to do, adjust the way you live.

    what advice would you give others who have fibro if they do not have a passion like music to inspire them to keep going day after day with pain and fatigue?

    I would say don’t make fibromyalgia your main focus day in day out. It is extremely easy to get caught up into feeling bad. Use some of the ideas above and be excited when you find something that works – go out and tell everyone, it instantly makes you feel good too. Sometimes I wish I didn’t want to have music as my career, I always think it may be easier then. Get people around you involved in caring about you, help them help you. Isn’t there a phrase that says “find your passion”, I love passionate people, whatever they are passionate about, job, family, hobbies, TV, film, music – find it and tell other people! Obviously, with me, singing is physically hard sometimes and being sensitive the smallest thing can throw me off, but you have to almost train your mind not to focus on that. “Change” was written to help people start to think about introducing new ways of thinking and ideas into their life and living with them, not just to think about it. Whatever you want to do, do it now, today!

  6. Shelly, thank you so much for such wonderful information. Your tips on how to live with fibromyalgia without the demon becoming your identity is awe-inspiring! I hope the readers support you and the UK Fibromyalgia Association by buying your inspiring music. Furthermore, I will refer others to your comments as the tips you provide are extremely helpful.
    Very best wishes, Barbara

  7. Christine Donaldson says:

    Hi Barbara, thanks for your lovely informative site,
    I too having FMS among other things that may or may not be due to FMS,
    Would like to join you in thanking Shelly for her replies to your question.
    It has been very inspiring and re-enforces what I believe too.
    I am from Gibraltar but have been to conferences in UK and USA about FMS and met
    some of the FMA Team.
    Keep up the good work bot Shelly and Barbara.
    The more we educate ourselves the better the outcome of our recovery.
    God Bless you both
    Gentle hug xxxx

    Christine

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