Thursday, October 1, 2009

New To Fibro

"Hi Gen

I'm newly told I am Fibromyalgia. I'm thinking where to start can yuo help?"

Hiya J.

You didn't mention whether or not you wished to be anon, so I'm going to stick with just your first initial.

I would suggest that you first start keeping a journal. Jot down in a notebook as soon as you can when you first get up, how you slept, any nighttime incidents (dreams, nightmares, restless leg syndrome, Princess and the Pea syndrome, etc.) Then I want you to document your pain throughout the day. Morning, noon, evening, night. Also, write down what you're eating in detail and how your digesting it. (Are you getting gas when you eat certain foods? Stomach cramps?)

Not all Fibro sufferers have IBS (Irritable Bowel Syndrome) but I've heard a few FibroMates claim to notice flare-ups after eating something. Food allergies seem to be common with Fibro patients.

After you get your journal going, start taking some vitamins and supplements. I've compiled a good list with the aid of a few herbal remedy books. (This blogs March of 09 archive has a 3 part vitamin/herbal supplement series that can help you decide what to take based on your personal symptoms) It doesn't hurt to take doctor endorsed vitamins as well as a few herbs to see if you can keep yourself off the "big guns" (aka anti-depressants/anti-seizure/narcotic medicines HOWEVER, do not ignore your symptoms. If you need chemical meds, take them!)

Once you have vitamins pumping through your body keeping you balanced, it is time to insert some exercises which is probably one of the hardest things to do. Start slow and small. Nothing wrong with down 3 minutes a day and building up to 30 after a few years.

Those are good places to start in your treatment.

A couple of things I wanted to make mention that you can expect from your Fibro experience:

- You will fail sometimes, and that is okay.
- You have to constantly push past the negativity and find a goal for your life now. Gain focus and you will get through this.
- You will have days where you feel perfectly fine...and you will have days that you can't get out of bed. With hard work, you'll have more of the former than you will the latter and that is the greatest accomplishment.
- "You got to know when to hold 'em...know when to fold 'em." Use the journal to find a pattern or a reason for a flare up or just a reason for pain that day. Remember that FibroMates have delayed reactions to some serious pains. You might pull your arm funny while getting heavy luggage out of the overhead bin on an airplane and feel the muscle ache 3-4 days later.
- You will swing like a monkey from a tree in regards to moods. Everyone is different but we're all over-sensitive people. We hurt...a lot. Being cranky is to be expected. Make note of it, and try to keep yourself from clubbing those you love most with your bad attitudes. I personally, cry a lot. Which is sad when I think about how I used to pride myself in being a non-crier. lol
- You will be tested for everything under the sun, AND you should seek testing for everything under the sun, sometimes regularly. Fibro gives us all kinds of fictitious pain, so we have to be careful nothing serious slips beneath the radar or is attributed to Fibro.
- You will learn to survive this... It may take you a while but you will learn.

Some things you feel now, you won't even know to attribute to Fibro, so I suggest you go back to the April 09 archives and check out "The List". It's a mammoth list of Fibro symptoms that could help you determine more about yourself and the severity of your condition.

Oh and...try not to sign up for too many support groups if you can help it. Most FibroMates just want to help but as a new patient I would suggest doing a ton of research, get to what there is to know about Fibro from doctors and Fibro veterans before you start talking to the general public.

As much as I love my groups, I have to admit than when I was first struggling with understanding Fibro, I was thrown off course by well-meaning, but entirely misinformed, Fibro sufferers. (One woman in a grocery store tried to convince me that Fibro is an auto-immune disease. She claimed to have suffered most her life and to be an expert.) Just be very careful... Fibro makes it hard to love life and be positive enough without listening to a lot of misery and anger. In moderation it is good to be supportive for those having a bad day BUT too much will drive you nuts and keep you down.

I hope all of this gives you a good starting point, J. Feel free to email me with additional questions.

All my best to my friends new and old!

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