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11 Replies
bburnie - October 23

Hi everyone...don't we all wish we didn't need a forum like this?

I am a 35 yr old woman who was 'dxed' about 5 years ago. My story is long, and probably similar to many of yours...suffered for years, told it was XXX or XXX or XXX; gave up on the medical establishment until it became so bad I could not even lift a coffee mug and hubby drug me back to the doctor. Theres the abridged version.

I work full time, despite all the pain, as a full day kindergarten teacher. Yes, I must officially be insane too! The kids keep me moving, which is important.

I am a mom to two kids, age 10 and 6. Married 12 years.

I do not currently take any meds to combat the FM, however I do have pain prescripts to take as needed. Because I am active, I rarely take them as I do not like to feel funny. I have tried a variety of alternative treatments with initial success, only to have them eventually fail for a long term solution.

I used to be very active on another FM forum years ago, but once I returned to work I lost touch there. So now, I am reaching out again because I need to know I am not alone on this crazy, albeit, painful journey.

Burnie

 

Noca - October 24

Welcome to the forum!

 

axxie - October 24

Welcome bburnie, to answer your question, no you are certaintly not alone and yes, sometimes we all think we are crazy when the pain is giving us problems.

As you know, the pain, not sleeping and depression can take it's toll. Then add the pressure of the job and a family life and somedays we loose track and freek. This is why we come to this forum and get some answers and a pat on the shoulder and then for a strange reason, we feel the fibro frenzy doesn't look as bad.

I'm 54, and I hold a job and I'm only on pain killers and sleeping pills. Somedays, I go see the chiro, there are days, I need a mental adjustment and other days, where I know I'm to take it easy, do to much and regret it when the pain takes an active role.

There is no long term solution, I think it's a trying your best to get you in a happy medium.

It intitles, excercise, talking to a physician accepting that you have to closely guard your emotion in check and constantly being vigilant about what you eat and what to stay away from and some medication to help you keep the pain at bay.

Does it always work, no, unfortunately, we all go through cycles of good times and bad times.

Some do get progressevely worst and some of us get progressevely better.

Keep in mind that the signs and symptoms vary widely from one person to another. Some people have only a few, while others have many. The intensity of symptoms is different in everyone as well, ranging from mildly annoying to highly debilitating.

While a lot of fibromyalgia treatments are available, you'll likely need to experiment with different options before you find what works best for you.

Fibromyalgia treatments include:
Prescription drugs
Complementary/alternative treatments, including massage and physical therapy, chiropractic, and acupuncture
Vitamins and supplements
Moderate exercise, but only if done correctly

Lifestyle changes, including diet, stress management, and pacing

Every case of fibromyalgia is different, and no treatment works for everyone. You'll probably need to work closely with your doctor to custom tailor a treatment regimen that helps you become more functional. Many people benefit from a multidisciplinary approach, which involves several healthcare providers.

While some people do experience long remissions, no one who's had fibromyalgia can truly say they don't have it any more.

As for the progression of the illness, it's hard to say whether your symptoms will get better or worse with time. Because fibromyalgia isn't degenerative, its course isn't clearly established like it is for many diseases.

Some experts say about a third of us will get worse, a third will improve significantly, and the remaining third will stay about the same.

Some studies have linked early diagnosis and treatment to better long-term outcomes, but other than this it's unclear what role treatment plays in the progression, or lack thereof, of fibromyalgia.

Welcome and I hope this forum helps you, I didn't go into what fibro is, because I think you know, what it entitles.

As for being a teacher with a pack of kids, is challenging at best but very enjoyable.

I remember I was a supply teacher and would teach about 4 days out of the week and loved it. Now I sit in a cubicle and hand cater to others, which is far worse then when I was teaching.

You may not feel that, and of course every class is different, but I also felt at home teaching. Instead I got myself to study chemistry, biology and I reasearch. It's fun, but I always wondered about being a teacher. My stint as a teacher, I have to say, I loved it, but then I didn't teach for a long time.

Keep active, it does help the fibro and keep your spirit high and do come to the forum to rant and rave we will love to have you participate.

Sandrivers

 

bburnie - October 24

thanks for the warm welcomes...

for the most part I just let myself suffer b/c, like I said before, I HATE feeling all loopy and with my job, it isn't helpful at all. Nothing like dealing with 21 little 5 year olds and feeling all hopped up on pain meds. Nonetheless, I do have them for its really bad.

Right now the issue is my neck. G-d it hurts something fierce!!! Been trying to spend more time on my inversion table to alleviate the pain some.

 

axxie - October 24

Hi burnie again, I don't know how the inversion table helps. I know of it, but does it really help to relieve the pain.

How about trying softouch massage or chiro?

Chiro can be painful at first, but the benefit after 3 or 4 treatments can be beneficial.

Where are you from? If in Canada, there is medication that once you get accoustume to, you don't feel loopy and feel better, as it does take the edge off.

I take ralivia (tramadol), I found that I can take the medication the night before and wake up with no pain, it's a 24hour time release.It comes in 100mg, 200mg and 300mg. I only take 100mg, but somedays I have to go to two.

Tramadol belongs to a group of medications called opioid analgesics. It is used to manage moderate to moderately severe pain for people who need several days or more of pain control. It decreases pain by working on the central nervous system.

Works well for me, and I'm not loopy actually the loopy happens only if you take it during the day, but if you start taking it, try the week-end and an hour or two before bedtime. It will make you sleep, but you wake up without the loopy side effect.

I can manage my work, very nicely.

 

bburnie - October 24

Tramadol doesn't touch the pain for me....I was on it for awhile and it really didn't do anything. Like taking a Tylenol. Notta. So...I now have a prescript for oxy but I only take it when the pain is really bad. I also have two diff types of muscle relaxers I often will take at night if needed. Ibuprofen (800mg) helps too for when I am at work.

The inversion table helps with spinal compression. Right now my c4 and c5 are all messed up and although it can be difficult, it also does help with spinal pressure.

For me pain is weird- I LOVE deep tissue massage. My husband will use what I call bongos to beat the heck out of my back every night too- it is almost like counter pressure will alleviate the pain...? It is not typical for most fibro suffers.

 

toots2889 - October 24

WELCOME TO THE FORUM!

 

Fantod - October 24

bburnie - Welcome to the forum!

I have some concern about your comments in regards to medication. The longer a chronic pain cycle continues, the harder it becomes to manage or stop. Have you considered trying the newest medication for Fibromyalgia called Savella? It was approved by the FDA in 2009 for use in the USA. Savella has been used in Europe for years.

I'm looking forward to your participation on the board. Enjoy the rest of your weekend.

 

bburnie - October 24

Fantod,

Concerns? Why? Honestly, I have suffered with the chronic pain since I was about 15/16. I was only dxed 5 years ago and really, I only have bad flare ups about once every 6 mos or so. For me it is more of a constant, dull aching pain that never goes away. Sometimes it will appear to not be an issue and then when someone touches me all of a sudden I will realize 'oh yeah, it never went away.'

The way I used to explain my chronic pain to hubby before dx was that I have felt this way for so long, it has shifted my brain's baseline defualt, if you will, for pain. It has become normal so even though I feel like I have the flu, or have been hit by a freight train, I am soooo used to it, my brain ignores it half the time, until it is brought to my attention or I stop and *think* about it. That might not makes sense many here....but after 20 years of this, it is my brains neurological coping mechanism. Therefor, because I am so used to it, the desire to feel no pain does not override the desire to not feel all drugged up. The only times I want meds is either at night, when I can go to bed, or during a nasty flare, in which I would usually stay home from work.

My job does not lend itself to being on medications that can possibly make me be in any level of an alternative state.

Mind over matter- I have to work to pay the bills ( I refuse to sit and do nothing all day) so I do not have a choice. I HAVE to live my life.

Hope that helps clarify some...?

 

axxie - October 24

bburnie, I know too well what you mean, about having to live your life, and trying to forget the pain.

I am in the process of taking a medical leave, this is going to be my third one since summer of 2006. I returned to work, about 10 months and felt good returning, I started as 3 days a week, and then went to 4 days and I can't for the life of me do 5 days a week, the pain, fatigue and the fibrofog or forgefulness has been too great for me. I have lost that footing that I used to have at work and now need to return home and lick my wounds at failure for the jobs I used to enjoy so much. I think the travelling is too much for me.

I am tired, physically tired, and cannot do a full day, without feeling so exhausted that I want to take a snooze in the morning and afternoon.

Been through all the test, and I presume what I need now is for me to get some rest and figure out a way to find a job that I can enjoy part-time.

 

bburnie - October 30

honestly, I think I haven't felt I have had a choice to not ignore it. You know? I mean, I have to work- not only for the the fact I have two children to provide for, but that fact that I simply refuse to live off disabiolity or someone elses bill. Maybe I am funny that way, but despite seeing nearly $1000 of my paycheck twice a month going to taxes, I REFUSE to be one who is on such programs. Mind over matter? I don't know. Some might say then, that I have not felt enough pain. I have...there are times, making it up the two steps from my family room to the kitchen is HELL. I cannot do with w/o hubbys help. At 35, that shouldn't be an issue.

But I keep going, simply b/c what choice do I have otherwise? None....so one day at a time.

You right- knowing we are not totally alone, is helpful. I used to be very active in one forum, years ago, but now am finding myself in need of the support again.

 

chefbeth - October 30

bburnie - my GP is treating me for FMS, but still yet to see the Rheum to rule out others...I'm 46, and have always been active...I totally understand the "mind over matter" mentality (when we can do it) I just "woke up" to the reality that my body pain and stiffness has been plaguing (sp?) me for years, but mostly the last 2 years, along with stomach issues. I used to work out regularly and hike & ski (my favorite hobbies). This past summer my husband and I spent 10 days in Colorado - hiking was very difficult - lots of aleve...I actually summitted a 14,000 mountain - first one - the next two days were in bed - but I was still in denial. I am unable to do step classes and conditioning workouts (anything with impact) and my endurance has drastically declined. I'm sure you can tell that I am having a hard time with acceptance- just walking the dogs 1 mile in my neighborhood leaves me stiff and tired...I am a personal chef and spend several days a week on my feet, lifting pots, doing dishes, etc. I've been on my heating pad every day since last Sunday, when my husband and I went to the golf driving range...big mistake for my back. SO, what to do...I need to find the place where I can do things without the big punishment (balance) I know that what I eat drastically affects the way I feel. Kuddos to you for being a teacher - I strongly admire teachers, but with FMS, I admire you even more. It must be EXHAUSTING! but also rewarding. Since I'm new to this whole FMS thing, I have learned so much from the forum members - thanks so much for the advice, feedback and compassion for those of you who have suffered with this for so long. God Bless,

 

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