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Is Fibromyalgia A. Progressive Disease?

A MyFibroTeam Member asked a question 💭
Lexington, KY

I don't understand itsome claim fibromyalgia isn't progressive but I know differently. I have progressive fibromyalgia,I sp3nd every day in pain and something new happening quite a bit. The only time I seem to be happy is when I am asleep

July 20
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A MyFibroTeam Member

Of course everyone has their opinion. I'm not saying we don't get worse over time. We do. But how much is from aging, and how much is lack of movement? I'm offering 46 years of advice I've been given by 3 excellent FMS doctors, physical therapists and my own personal experience. I did about 6 years of babying myself in the first 15 years of having fibro. Back in the 80s and 90s, doctors pushed pills to fight FMS. I napped, I didn't push myself, I ate normal food...I lived like I was sick. It got me nowhere! Then a different GP entered my life...a Buddist MD. (LOL, sounds like a Hallmark TV show). He pushed more gentle exercise, more PT, getting off Premarin and onto natural hormones. He suggested stopping gluten, sugar and processed food. He took me off statins and used fish oil, niacin and magnesium to control my cholesterol. He encouraged going back to Tia Chi. He gave me magazines on meditation and sent me to a Behavioral Therapist and a pain management doctor.

I got better! A LOT better. My life slowly changed, and it takes work and consistency. Whenever I start sliding back into an easier life, eating fast foods or getting lazy, I pay for it.

Look, I went from being barely able to work part-time, back to working full-time, plus overtime by following my GPs advice. If migraines from these strongly perfumed detergents hadn't taken me down, I'd still be working. I'll be 70 in a few months, but I'm doing more activities at home than I did at 20. I still hurt like hell, but I have a life. It's isolated, away from people, because of the perfumes, fragrances and polymers setting off my migraines, but it's a happy, busy life filled with gardening, cooking, baking, painting, playing music and movement.

Y'all can make your own choices. You can stay in bed, get weaker and sicker, or you can take control, get up and get moving.

July 22 (edited)
A MyFibroTeam Member
July 20
A MyFibroTeam Member

There are 4 phases. It is a nerve disorder. The only way to heal nerves is to exercise and move. It hurts while you do it but stiffness sets in if you don't.

July 24
A MyFibroTeam Member

There's a wonderful free online 8 week course to teach how to live in chronic pain without heavy medication. It's called PainTrainer.org created by Melbourne University. It gives dozens of coping strategies like mindful meditation, creative visualization, healthy thinking, distraction therapy, planning techniques, etc. You can go at your own pace. I found it extremely helpful. Even though I knew most of the techniques, having them all together, reviewing and practicing them again was so beneficial. It actually helped me go through 45 minutes in a MRI with a level 8 migraine when no medications were allowed...not even nausea meds. It's a miracle I didn't throw up, but instead, I actually fell asleep doing the creative visualization technique.

Try this instead of pain medication. If y'all keep taking pain meds, you'll continue hurting more and more. I don't know why, but everytime I give in and take a pain med like hydrocodone or oxycodone, I notice my pain hurts mor. Maybe because the temporary relief makes the next day's pain more obvious. But whatever it is, I avoid pain meds at all costs! I just went through a 9 day migraine. My migraine meds weren't helping so I broke down on day 8. I regretted it. Sure, the pain eased for 5 hours, but came back with a vengeance.

July 24 (edited)
A MyFibroTeam Member

You too Miss Nancy!! I love your strength 💪

July 21

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