Here is a space where all staff members are free to express themselves creatively, be it a short story, some advice or health tips, life experiences, or just whatever is on our mind that we feel is relevant.
Hopefully, you will think it is interesting too! ~ The gURLz ~
Living with Fibromyalgia
Fibromyalgia. What a strange word. Many people know very little about what it is and how it affects a person's life.
Almost half the staff of this publication suffer from this bizarre and painful disorder, which still seems to mystify even the best Doctors.
This time in Freestyle, we'd like to take a look at Fibro from the viewpoint of people who have to deal with it on a daily basis, and hopefully give you a few helpful tips for coping with it if you have the disease, or to give you insight and understanding if you know someone who does.
Symptoms and Diagnosis of Fibromyalgia.
By Robin Leonard
I guess I could start by saying that I really can't recall a time in my life when I felt 100% healthy and well. I had a lot of childhood illnesses, and my health continued to be problematic through out my teen years, which were extremely stressful due to circumstances at home, but I think I was around 23 or 24 when I really started thinking that there must be something "really wrong" with me.
I was feeling dead tired all the time, whether I got 10 hours of sleep or 2 hours didn't matter, I felt run-over and dragged down the road at my very best.
I had always suffered severe migraines, digestive troubles, and allergies, but it seemed that as I was getting into my 20's, my whole body just began aching periodically at first, and then more constantly until it reached a point where I was just simply in pain all the time. But I just carried on with my life as well as I could.
I remember in August of 1989, I was on vacation in Toronto and had visited Casa Loma, a lovely castle with a spectacular view of the city. The next day, my right hip was out of joint so badly I could barely put my weight on it. It stayed this way for 5 weeks until I finally saw a chiropracter and he managed to straighten me out.
After that, however, I began noticing more frequent and regular pains in my legs, in the day time, at night, and occasionally I would stand up after sitting for an hour on the job, and my hips would just about give out. I had many occasions when I just had no strength in my legs at all.
My lower back started getting worse, and the pain migrated further up until my upper back would lock up and hurt constantly too. Every time I move, something goes 'snap, crackle or pop' in my body.
A whiplash injury in 1998 and subsequent soft-tissue injury in Dec 99 to my shoulder and upper back area has now left me with weak arms that go numb and start to tingle at night, which is most disconcerting.
In November of 1999 I awoke one morning to find that both of my elbow joints had gone on me during the night. I had such pain in my arms, and no strength, yet somehow I continued working, suffering through agonizing pain day after day. I drove for a living, so I was not able to take pain killers when I needed them, and the pain grew significantly worse. Nothing helped it at all, and this went on for several months, then one day last year I woke up and my arms were a little bit better. (Go figure!) Now the pain comes and goes, but it is at least not constant, and I feel that this is largely due to the fact that I have had to give up my job I held for 11 years, because I simply was not strong enough to do it anymore, physically, or mentally...
When these things all started happening, I had never heard of Fibromyalgia. I just thought I was falling apart. My Doctor made it seem as if it was simply a matter of needing more excersize, so I tried that, but the more I did the worse I felt.
I had been suffering from depression for years, and the constant pain was adding to that problem as well. In addition to this, my sleep patterns went right downhill, and I was no longer able to get comfortable enough to get any quantity of sleep, and what little I did get was poor quality sleep, so neither my body had a chance to rejuvenate each night, nor did my mind, and my concentration levels suffered, and my ability to cope with stress of any sort has deteriorated to next to nothing. And when you have no restorative sleep, your memory also goes down the tubes. Sometimes when I'm out driving, I have to pull over and get my bearings, because I've gotten disoriented and can't remember where I'm going or how to get there... and I'm only 37 years old...
Believe me, this sort of thing is scary as hell!
Then one day in 2000, I was talking to a friend on the phone, and she told me she had recently been diagnosed with fibromyalgia. "What's that?" I asked, and she began to tell me some of its varied and sundry symptoms... about halfway through the call, it occurred to me that she was describing all of MY symptoms too, so I began to do some research on the internet.
Soon, I discovered that so many of the seemingly unconnected symptoms I was having, fell squarely into the category of the 'Fibro Five' (Chronic Pain, Fatigue, Migraines, Irritable Bowel Syndrome and Depression) ...and the list goes on!
I printed out about 4 pages of relevant information detailing the symptoms I'd been having, and presented it to my Dr. with my theory that this might be what was wrong with me. Since he had been able to find nothing "serious" to explain how I'd been feeling, he decided it would be prudent to investigate further, so he referred me to a rheumatologist who promptly diagnosed me in about 20 minutes, as having Fibromyalgia.
Nowadays, there IS an accepted standard of diagnosis for this illness/syndrome/disease... although Doctors are still out as to which category of those phrases it actually falls under.
Nobody wants to be diagnosed with an illness for which there is currently no cure, although, I suppose I should be happy that it isn't a "terminal" illness, but being finally diagnosed with SOMETHING was very liberating for my mental health.
It proved that I had been right, I wasn't crazy, It wasn't all in my head, and I wasn't a hypochondriac! It was something really wrong with me! It explained SO MUCH of how I had been feeling.
Now, I am learning to take little steps with everything I do. I am learning my limits to what I can and cannot do, and those around me are learning to cope with my ever changing moods and increasing need for their help for certain things. (I blame this Gazette issue being so late entirely on my fibro limitations.)
Learn your limitations! I now know that a whole day of shopping is out of the question, because after a half hour of walking, my lower back siezes up, so when my husband and I go grocery shopping, we split up the list and meet in the middle of the store, each of us getting half the items. This way, I don't need to walk through the whole store, just half of it, and the chore still gets completed.
Learn not to be obsessive with housework. So you do your dishes every second day instead of every day, you vaccuum once every couple of weeks instead of every week, the dust isn't going anywhere, it's not the end of the world, and why be in extra pain from forcing yourself to do these tasks more often than you really need to? I'm not advocating slothiness (LOL) just that you don't need to kill yourself over a few dirty dishes. Prioritize and schedule your strength so that you will still have enough of it left over at the end of the day to have a chat with your spouse without bursting into tears from stress and exhaustion.
My friends have had to learn to accept that, while I might be alright to make a lunch date with one of them for next week, when that day comes, I may not be up to going out and doing those plans. I have noticed that most of the people I know with fibro are much better at "spontaneous socialization" - if we feel up to something this very minute, we go do it, but most of us don't make too many long term social engagements. It takes its toll on friendships when you are the one always cancelling out, unless you are lucky, as I am, to have some really good, understanding friends.
I'm also very lucky to have a husband who is very nurturing and willing to help me out a great deal around the house, he cooks, he cleans, (sorry gurlz, he's mine!) I don't expect him to do everything, and I do what I can, but considering that he works full time as well, he really is a God-send to me. (Love you, dear! xox)
I think the most important thing that someone close to someone with Fibro can do for them, is to have a LOT of patience with them. We need lots of TLC, because it's more frustrating to us than you can imagine when you hurt all over, you don't get any sleep, and you feel like you are losing your mind. And its all very real.
Tips for Coping With Fibromyalgia
By Jan Bovee
The first step is getting an affirmative diagnosis, which is sometimes
the hardest part of the journey. Not all doctors are well versed in the symptoms. And as my internist told me 'Fibromyalgia is usually a
diagnosis by elimination. Everything else must be ruled out.'
Read, read, read!!!! Informing yourself gives you power. I had many disparate symptoms that were never "tied together". By reading and
researching I was able to tie the pieces of the puzzle together. And rather than being discouraged by the fact that I had Fibromyalgia, I was thrilled when the light dawned and I KNEW there was a name for all the things I was feeling. I wasn't crazy, or lazy, or depressed......I had Fibromyalgia. Okay, where do we go from here, what can I do to make my life better?
Talk, talk, talk!!!! Talk to your spouse, your children, your extended family, your friends, a support group, either in your community or online. Inform those around you not only of your limitations but of your capabilities. Those who love you will probably be relieved to know your
guidelines and will pitch in to take up the slack.
Exercise! This is the most difficult admonition.....you are tired, you are hurting.....but you must move your body. The very best form of exercise for those with Fibromyalgia is water exercise. The water cradles your body. You feel bouyant and light. Water gives you the
freedom to move in ways that are not possible for you on land, and it protects your joints. Swimming is great and if you cannot swim then
wateraerobics and aquafit classes are now available in most cities. In nice weather taking short walks will also lift your spirits.
Get enough rest. Form a routine for an adequate amount of sleep each night. And make room in your schedule for a nap each afternoon....if only for a half and hour. It will restore your body and your spirit.
Nutritional Supplements may be helpful.
These are the supplements that seem to work for me....here comes the DISCLAIMER:
** BEFORE you try any self-medication or supplements, consult with your own family Doctor! **
Sometimes it is a hit and miss, trial and error thing to find what works for you.
I am not a doctor or a health worker. I can only tell you what I discovered for myself from reading about Fibromyalgia.
A GOOD multivitamin.....I take the store-brand equivalent of Centrum.... it's multivitamin, multimineral, includes C, E, and beta carotene.
2 amino acids....L-Arginine and L-Lysine these should be taken together...they balance each other. 500 mg, each. People with Fibro seem to be deficient in amino acids which are the building blocks of protein......we tend to suffer from malabsorbtion of nurtients in general.
B complex 100.......for nerves, mental health, ability to handle stress, and helps to metabolise food properly.
Vitamin C.....500 mg.....I do get C in my multi-vitamin.....but people with fibro tend to have immune problems and I don't have any ill
effects from the extra.
Calcium with Vitamin D and Magnesium.
Vitamin E.....400 usp units....for good heart health.
Cranberry capsule.....some fibro patients tend to have frequent symptoms of urinary tract infections.......this helps keep this under
control.....you can also drink cranberry juice, but I neither like the taste nor want the extra calories.
Glucosamine and Chondroiton.....I have some arthritis in my knees so this seems to help this......this is not necessarily related to the
fibro......this is expensive so I wouldn't bother with it unless you know you have arthritis.
OK.......now I will simply list what I take and the dosage....without the comments.
Advanced Formula/High Potency Multivitamin-Multimineral supplement. 1 a day.
L-Arginine 500mg/daily
L-Lysine 500mg/daily
B-Complex 100 / 1 caplet daily
Vitamin C 500mg/daily
Calcium with Vitamin D and Magnesium
(dosage depends on how much calcium you get from food.....but the ratio of Calcium to Magnesium should be 2 to 1)
Vitamin E 400usp units/daily
Cranberry 400mg/daily
Glucosamine and Chondroitom
1500 mg 1200 mg
(check package for dosage.....most say 3 caplets a day.....but I do well on 2 a day)
You might not want to start all of these at once....in case you don't tolerate something well. I would try one supplement at a time for a week or so and then you could add another....and so on. But remember to ask your Doctor before starting any new treatments.
Good luck.....Read all you can....some books are more patient friendly than others.....some do not include alternative medicine (ie. supplements) in the regimen.....but "Fibromyalgia: a comprehensive approach", by Miryam Ehrlich Williamson.....was very helpful to me.
ISBN 0-8027-7484-9
* Editor's note: Another good book is Fibromyalgia and Chronic Myofascial Pain - A Survival Manual (Second Edition) by Devin Starlanyl & Mary Ellen Copeland
ISBN 1-57224-238-8
