It has been some 15 years since diagnosis, and about 20 years since my brain started to turn to mush, my body even mushier…

The American Chronic Pain Association’s summary is this:

“Fibromyalgia is a medically unexplained syndrome characterized by chronic widespread pain and a heightened and painful response to pressure (allodynia). Other core symptoms are debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling (paresthesia) and cognitive dysfunction.”

I am one of these stubborn people who do not want to become puppets of the medical system and take “medication” for the rest of their lives. And yes, I’ve met others who are the same 😉

I am re-visiting, because I want to tell you of my own experiences about what worked for me so far, and a few little things that have not worked.

1) Pain, dealing with pain

Using pain medication for a prolonged time should not be an option, thankfully I do not have to go that route as I am severely allergic to pain killers and anti-inflammatories. Fibro pain, in my experience, does not get better by waiting for it to get better. It does seem to be in muscle and connective tissue. You already know, don’t go and get a massage, its a killer. As touch and pressure is so highly elevated in perception, even a gentle and well-meant massage is agony, don’t do it!

What helped me somewhat is that I accepted a new baseline of pain, some things just become normal and I accepted that as feeling ok! Good, that’s the mental part. If you have the same thing every day, it can become your new normal, the less you aggravate over it, the less it will bother you or have power over you!

Another part of acceptance is that there will be even worse days, and you’ll have to take it easy, these will pass.

I tried many suggestive mediation audio CDs, things like that, while very pleasant to work with, didn’t do a thing for me for the pain. Couple of beer or a glass of wine work quicker…

2) Movement/Exercise

The first 10 years: walk!

If you have been glued to your bed/couch, this will be hard. I’d like to tell you to start with short distances and work yourself up to longer and longer ones, like in any exercise. I found, that doesn’t work, you will each and every time just, uhmm, hurt more and be more miserable. I found that going for AT LEAST 45 minute walks at a time, WILL work in making you feel better. Getting up and out and getting over the first 10 to 15 minutes is the killer. Do it! Trust that after the first (daily) hump, you will feel much better and the rest of your day you will feel much better. Do it every day!

You may begin to notice that if you can’t walk due to time or weather or whatever, you miss it and your body will miss it, there will be less energy and more pain.

Look into other forms of exercise once you feel stronger. My weapon of choice was TaiChi, everything else just made me miserable. At first, TaiChi made me miserable… again and again. Whatever you choose, stick with it and make sure you have an experienced teacher (nope, not a DVD or book) who can observe and encourage you to go forward or ease off.

Glorious was the day, when I for the first time again, felt muscle soreness!! Like a real good sore muscle from working it, that went away a couple of days later! If you don’t have fibro, you can not appreciate how good that feels. Our “normal” is, you move in some way, you get sore, you stay sore, for weeks or longer. The pain is in no relation to what you have done, very mean, very discouraging.

Key for me is that I HAVE to get UP in the morning. Any prolonged lying in bed will bring me further away from comfort. Also, refer back to the definition “heightened and painful response to pressure”, yes, pressure from lying in bed is agonizing, so, getting up is a better option

Notes on progress:

Once I accepted that everything I try and do will take so much longer to progress than before or compared to other people, I was really fine. Just be patient!! If my teacher says, this might take you 3 months to get, I translate for myself to 3 years! Sounds harsh, but hey, what have I got to loose? I am still progressing, just much much slower. Repeat an exercise 100 times to get good at it? Make that 1000, and so on and on. It does seem to get “better” though, slowly but surely. Many years from normal for me, but I can notice improvement in this respect.

3) Diet

Very easy, it it doesn’t grow, don’t eat it. If it comes in a package, don’t eat it. Eat foods as unprocessed as possible, raw is good, gently cooked is better and easier on your system.

No brainer should be: avoid processed sugars, and they are in EVERYTHING! Read labels if you feel you have to buy something that comes in a package…

Do this as a suggestion, just slowly ease your tastebuds into more natural, unprocessed foods and don’t go crazy about it.

Start your day with a glass of water. Every day. Before anything else, starts your metabolism, works wonders for stiff arthritic joints to get them to normal quickly in the morning. Don’t forget to drink water as you go through the day. I am a coffee addict and like beer or wine, tea etc. Works well for me if I balance out any “not so good” beverage with at least the same amount of plain water during the day.

Cheaters:

Well, maybe not cheaters, but quick fixes: “green shakes” with anything but the kitchen sink in it. I base my shake with kefir, add green powder (nanogreens and/or Kyo Greens) frozen or fresh fruit, cucumber, chia seeds, baby, kale, spinach etc etc, blend the heck out of it and enjoy.

SUPERCHEAT:

Again, not a cheat, but even quicker results: add FRESH tumeric and ginger root (organic) to your shakes. No need to peel, start easy on the tumeric, some people’s stomach can react to it. After a week of a small piece, go a little larger, maybe pinky finger sized pieces.

Second cheat that helped me a lot at first, especially with exercise muscle recovery is Colostrum. Some protein powders have this added (nanopro) but you can also get it separately as powder or pills at the health food store.

best supercheat juice: pomegranate try it…

So there you go, this is what so far is working for me. Move every day, never stop, if you have a down day, move a LITTLE and at least walk, then plop down and “take a day off”.

Fibro Fog:

No help with this one. I am absolutely clueless how to combat this other than to avoid human contact (for obvious reasons..LOL) and wait it out and again, not stress about it. Fog does seem to be caused or enhanced by mental stress.  All I know is that with the improvements in my physical body, the fibro fog has stepped into the background most of the time. A few stupid days per year but not more.

Patience, Patience, Patience

today: Today I feel MUCH better, stronger, younger than 10 years ago, it has been a journey!

next installment: TaiChi and Fibromyalgia, or, how I met my own devil