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I have a confession to make…

I have lived with a chronic pain problem since I was 18…..but except for my medical practitioners, family and close friends, no one knows.  It is just something  I have lived and dealt with for a very long time. I never wanted to be defined by it, hence keeping it on the down low.

But as I am in day 5 of recovering from #2 Pfizer vaccine, it is pretty hard to ignore whilst dealing with waves of overwhelming pain, fatigue, migraine, chills and so on. But, don’t get me wrong. I am so very grateful for the vaccine and I am getting through it and reminding myself that while my recovery may take a little longer than others, that’s okay.

Probably because I don’t discuss this aspect of myself much, I have rarely been asked for advice from other people with Fibromyalgia.  But recently the partner of my nephew reached out as he had just been diagnosed. As I gave him my two cents of advice and what works for me, I realized that I had learned a thing or two living with chronic pain for so long. After all, it is why I became a clinical/medical hypnotherapist and eventually a zen life coach—as I wanted to learn how to deal with my pain in a holistic and integrated manner, and wanted to help others do the same.

So here are my top 10 suggestions for those of you who may be dealing with similar chronic medical issues.

Living with Fibromyalgia

First educate yourself as much as possible about the problem. There were and still remain very few doctors who truly understand what Fibromyalgia is. I have spent many an appointment educating them!

Next, don’t be afraid to be your own advocate. If you aren’t up for advocating for yourself, get a patient advocate. This can be a family member or friend who joins you on a video call, or in person when allowed. They can take notes, ask questions, and bear witness to what is being suggested for your care.

If need be, get a second opinion and or change doctors if you aren’t happy or comfortable with who you have or what they suggest. That is your right and believe me, you will be spending quite a bit of time with them as you navigate your care. Finding a medical ally early on was a true life saver for me. In my case, it was a local rheumatologist, who listened, suggested, and was open to alternative approaches as well as medicine.

Get support

Join support groups whether online or in person, when being offered. It can be very comforting to know that you aren’t the only one dealing with this issue, and it is a great way to hear what others are doing to cope and manage, and to hear about treatment options.

Explore complementary and alternative health as well as western medical options. This could be massage or other forms of bodywork, acupuncture, forms of movement such as qigong, tai chi, yoga, pilates, Feldenkrais, vitamins, supplements, herbs, medical cannabis, and so on. My extra large gel ice pack and heating pad are very good friends of mine and are used regularly.

Should you take narcotics?

Everyone needs to make their own choice about this, but my choice from day one was no thank you. Besides the fact that they make me very ill, I couldn’t afford as a single Mom and sole provider for my daughter to be under the influence at any time. And believe me, it will be suggested and encouraged from many western doctors as it is very hard to treat fibromyalgia symptoms, and they will get frustrated with you! There is no cure yet, but hopefully someday. There are many non-opiate pain relievers. Believe me I know, especially as I am allergic to one of the best, Motrin!

Dealing with Stress

Manage your stress in a healthy way: For me, that includes regular breath work, regular energy work (I am a big fan of both Donna Eden and Amy B. Sher), self-hypnosis, meditation, walking our dog, getting enough sleep and rest, having regular downtime, connecting with friends, and so on.

Move daily even when you don’t want to. It can be gentle stretches, yoga, a walk, a little gardening, to more energetic exercise. You may need to modify or find alternative forms of movement when you are having a pain flare up—but the most important point is to be consistent and do something that you like and enjoy daily.

Acknowledge you have an invisible chronic pain issue. This may just be to yourself, or to family and close friends. To the outside world, you look normal, but you will have days when you feel awful, in pain and not your best. Do your best each day and don’t beat yourself up. You will get through it and will have days, hopefully many of them, when you are pain-free and functioning at 100%.

Lastly, you know your body better than anyone. Trust that inherent deep knowing and it will serve you well as you navigate dealing with a chronic medical issue. You are not alone.

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