Tips from my own experience of fibromyalgia
PLEASE KNOW THIS IS NOT MEDICAL ADVICE BUT SIMPLY MY SUGGESTIONS FROM MY EXPERIENCE. Your needs will be individual and will change as you travel through different stages of health and ill-health. This is a guide with some ideas in case you need a next step and to help friends and family of those who experience fibro. Also, given that I do still have and struggle greatly with fibro, this is by no means a complete list. And I understand that it can be very difficult to actually try something new, and to maintain a positive attitude about it. Things will vary and will go up and down.
#1 Even though you feel unwell, you need to take charge of your own health. This is because doctors tend to only treat part of you. There is a good chance that some form of 'alternative' health professions may be a help but doctors may not recommend this. Also, some of them will simply take your money so be careful. You also will need to try to try different therapies and treatmens out and see what helps you. It might be helpful to use an app like WebMD and Medicines List.
#2 Take your health improvement steps in stages. Try one thing at a time to see what helps. Allow it to take time and know that things will probably change - something may become less helpful that it was originally.
#3 If you are friends & family of someone suffering fibro, realise that it costs money - lots of money. If you can help, please do. If you're not sure what to do practically, then consider giving helpful gifts; gift certificates for 1) a massage or other alternative treatments they find helpful, 2) food; offer to do their shopping, clean the house, babysit, do the washing, cook some food, bring them a movie they haven't seen yet....something else nice they like.
# 4 Establish a good sleep rhythm - even if it is difficult and seems pointless sometimes. It may change over time and you need new patterns but keep working at it.
#5 Stretch & move - just very gently if need be but try to develop it as you can. Do some exercise - even if it just a little bit of walking. If that seems too much, go to a hot pool / spa or just walk in the water for a bit, or take a bath.
#6 Try to eat well - this may only happen when you are feeling well but try as much as possible. Be aware of how you feel after foods as you may have some intolerances. If you think it would be helpful, cook up mass meals when you feel well and freeze for times you don't. We only had a very small freezer so I bought another small one so I could make up extra meals and snacks to freeze for times I could not bear to think about food. I also have an 'emergency' food bag - this is so if I get bad but also haven't done the food shopping, there is always something in the house. I've also written about some of the things I've tried regarding food - it probably won't work for everyone but it's worth it to keep on trying.
#7 Give yourself a break. It will be slow and painful but it isn't pointless.
#8 Keep close those friends who stay around and don't spend your energy on those who don't. Unfortunately, this last part is often necessary. At the same time - reach out to people and give them the chance to be around to help you out. I've found that a private Facebook group with some very particular people for times when things are especially stressful has been a good way to communicate with people when communicating is hard.
#9 If you have some form of anxiety, it is ok. I had just a small (actually, MASSIVE) meltdown the first day I signed up for Facebook as I was suffering social anxiety and was so tired I didn't understand the process and so didn't use it for a long time. Later I signed up for a shop on Etsy but then it took me 5 years before I could bring myself to put anything up to sell. Do what you can. Don't pressure yourself about what you can't. If it is a significant part of your ill health, then look at steps to take when the anxiety is too much, including who you can call if things are getting too bad.
#10 If you feel a bit alone, then go to Pinterest and search for fibro / fibrmyalgia / CFS and you'll find many, many others who understand and will give you a bit of a laugh. There is now a lot online to connect people such as Sick Sad Girls on
Instagram.
My suggestions for therapies & treaments to try
The following is a list of therapies that you might like to try alongside whatever medication or health plan the doctor might put you on. Again, I am NOT a doctor and am not offering medical advice, just tips to try from my own experience. But also remember, that not everything will be helpful at every stage. I couldn't have started deep tissue massage straight away but now can barely survive without it.
Low Level Laser Therapy (cold laser) - It was 12 years before this was mentioned as a treatment for Fibro and I had to read it in a book. For me it was a remarkable improvement (not cure - I have to regularly use it to maintain its effects). I first read about it in The Brain's Way of Healing by Norman Doidge. I found an acupuncturist who did laser therapy so google it and see who you can find near you. It's probably best to go book into a few sessions and see if it helps at all (it was recommended that I do 8 sessions to really see if it was effective but I began to notice positive effects after 2). However, if it does help, it's probably financially best to purchase your own even though it is a big initial outlay. Look at companies like this (absolutely no paid officiation between us). More information about my experience here.
Counselling - I've been to someone who does CBT and another who doesn't but takes a very holistic view to managing life and health and had extensive experience with those who have chronic ill health. Overall I found the 2nd more helpful, but I'm not going to recommend one above the other. I'm certain that I didn't start counselling early enough. So much of your life is simply spent surviving that it's probably worth getting help for anything else in life, especially coming to grips with the chronic nature of it all. Ask the doctor if you qualify for a mental health plan of some sort - in Aust hopefully you can qualify for the 10 mental health sessions.
If you are not happy with your initial counsellor, try someone else.
Massage - at first I thought I could only deal with very light massage but then I experienced deep tissue massage from a myotherapist. It was the single most painful experience of my life and even she was worried I would pass out. However, a couple of days later (yes, it takes that long to recover) I realised that it was helping. It helped stretch and loosen my very sore muscles and was well worth it. I still rarely go 3 weeks without massage. It still hurts - it is not a relaxation massage - but I could not function without it.
Chiropractor - they can be very helpful, especially if you can work the therapy in with massage. They each help you get the most from the other.
A pain health clinic/naturopath - is generally VERY expensive but can be helpful in general health / good intolerances/allergies. However, be careful, don't just do everything they want you to, be prepared to say no and research supplements because so many of them do nothing and cost heaps. You might be interested in The Checkout and this one if you want to learn about how which supplements don't have much benefit.
Alexander Technique lessons - A lesser-known therapy. It focuses on the body as a whole and I found it helpful it realising the unhelpful habits I had developed in posture and the way I moved. It can be helpful for anyone has experienced any type of injury, has issues such as a sore back, wants to improve their posture or learn to bend, lift and stand helpfully. Lessons are individual (like music lessons) but can be well worth it to learn some new skills/techniques. Search for a teacher in your area. In Melbourne you might like to start here.
Useful Links
Low Level Laser Therapy
- purchase
About Fibromyalgia
- Mayo Clinic - An overview of fibro with links to more info
- A very good in-depth pdf of Fibromyalgia & recommended treatments. I highly recommend it.
- MedlinePlus - another overview with links to other information.
Less Medical Talk, More Real Life Experience articles
-Spoon Theory: This is a great little explanation of chronic ill health. You might find it a helpful way to try and explain things to others. And find a little video here
- In tandem with the above Spoon theory is this article The Spoon Theory Gave People The Wrong Idea About My Illness which I think raises some very important and relevant points that I agree with about where the Spoon theory misses.
- How to speak to Loved Ones about Fibromyalgia
- Seeing Through the Fog: Fibromyalgia and Slowed Responses
-The title is a bit over the top "10 Causes of fibro your doctor is ignoring' but it lists some good things to look into to at least improve your health, even if it doesn't 'cure' the fibro (or even if it isn't the cause of the fibro.
-11 Ways to cope with a lack of fibro support
-Food can be a help or a hindrance, it can take awhile to work out what's what - this might help 10 food rules for pain patients
-It can be difficult sometimes to know what's what - Chronic pain & fibro: What's normal & what's not
-A list of 24 Things No One Talks About When It Comes to Having Fibromyalgia article
- Mom with Fibromyalgia Writes Children's Book to Explain Chronic Illness
Practical aids