If you had to give a newly diagnosed fibromyalgia patient a survival kit what would you recommend?
Here is a list of mine, take from it what is useful and disregard the rest. We are all individuals but who knows you may find comfort from my kit list.
Hot water bottle
I may never understand how people can survive life without owning a hot water bottle. Since diagnosed with Fibro mine has become my best friend. Heat therapy is such a comforting way to relieve pain and muscle stiffness. When applied to sore areas of the body, heat helps to dilate your blood vessels and encourages blood to rush to the affected area, flushing out toxins and other wastes. This blood also brings oxygen to the site, which helps to repair soft tissue, encourage muscle tone, and relax muscles contractions.
Some people will try and convince you to avoid heat therapy and say it can make the pain that is caused by inflammation even worse. But because fibromyalgia pain is not caused by inflammation, heat therapy is an ideal choice for symptom relief so ignore them.
My water bottle has a coat so it is even more snuggly, may sound silly but small comforting details do also work.
For me, Tramadol is the best at relieving my fibro pain. We are all individuals and so our medications will be different. You can only discover what is best for you. Don’t be afraid to visit your GP as often as you feel necessary and discuss medication whilst you are well as trying to get out and about during a flare is no joy. Try and get the same GP if your surgery has many doctors, you will soon identify the one that is well read on your condition. Try and avoid the one who asks you to spell the condition and then look it up in front of you, this is a reflection of their lack of education in the area, you may as well talk to the stethoscope if this happens.
A symptom diary
A simple diary from the Pound Shop is a great way to record your symptoms and have it at hand when talking to medical professionals. Brain fog and time allocation for GP visits means you may not be giving your doctor all the information they need, plus you only really get to see the doctor on your better days, the only person I want to see during a flare up is Mr. Hot Water Bottle. This dairy will also help you to pinpoint pattern formation flare-ups so you can identify any trigger factors.
There is no magic food to prevent or cure a fibromyalgia flare-ups, but a few dietary improvements can make a world of difference and may alleviate even the most daunting symptoms. Preservatives and additives tend to have a negative effect on fibromyalgia so more natural foods are very important.
Protein-rich foods can keep blood glucose levels from fluctuating, which can increase your fatigue.
Experts believe that oversensitive nerve cells in the spinal cord and brain may be involved in the way fibro people process pain. Certain foods may trigger the release of neurotransmitters that heighten this sensitivity so again use your symptom diary well.
I am super sensitive to sound during a flare up and often spend my time telling my family to “turn that down” Motorbikes, emergency service vehicle sirens are way too loud for me now so time out in a quieter world at times is so much more fibro friendly, watch the roads though if you have to go out, brain fog and ear plugs is not a good mix.
A massage with a synergistic blend would be wonderful but packing a qualified therapist in the survival kit would be expensive so the next best thing is a qualified therapist telling you what to do.
What you need:
10 ml of carrier oil
1 drop of Lemon Grass
2 drops of Rose Absolute
2 drops of Ylang-Ylang
Gently massage the blend of oils all over your body in long sweeping strokes daily. This blend of essential oils is superb for mental clarity and relaxation. It will act as an analgesic (pain relief), antidepressant, nervine (acts as a tonic for the nerves and the nervous system in general) and sedative.
Free the puppies.
Comfort is a big part of treating a fibromyalgia Flare so a bra has no place in a survival kit.
Brain fog is a huge problem for me so I have to log most things on post-it notes or I will forget.
I have a notebook that I use as a memory log as my short term memory is mashed during a flare, well no actually it is most days now. After enduring months of misplacing items, forgetting important and simple stuff I decided to get a memory book. I log many things such as where I put an item to something I need to do. Putting an important letter in my bag as I will not forget it there can become a lost item the following day.
A thick skin.
Loved ones, friends, and family may not understand your illness as “you don’t look ill” so learn to smile and not take things too personally. You will find everyone seems to think they are an expert and some will even claim there is no such thing as fibro, just switch off.
One of my favourite books is called The Four Agreements by Don Miguel Ruiz. One of the agreements is Don’t Take Anything Personally. This has helped me a great deal since diagnosis.
“Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.” It is a great book we all should read at some stage in our life as its values are so beautiful.
This can be anything individual from a soft velvet pillow to the big fluffy dressing gown.
Money and provisions
I am lucky as I live with five sons who do not mind cooking or sorting a takeaway during a flare. Make sure you have a store of money at home if you need a dial a meal or to get loved ones to go for milk and bread. Hopefully, I would like us all to have at least one friend or family that would be willing to act as a lifeline when you need one. Put their number in your mobile contact list under " A…Betty Smith" this will ensure they are top of your contacts list. Don’t ever be too proud to ask a friend for help. This may be the one thing they enjoy and feel they are helping your illness.
Simple provisions like a carton of UHT milk in the cupboard or a loaf in the freezer can be great assets when you need them most.
Listen to your body
If your body wants to just sleep, then let it.
...and last but not least a hug.
The power of a hug and human touch is essential.