[kaceycrystal]

Ok, so been having trouble recently with my horrid eating habits (i.e. not eating) and thought maybe I'd done something to myself. Then got to thinking, I have been tired and aching off and on for months now... hmmm... so went to doctor and ordered all these tests ( btw, i ocasionally am hypo thyroid so am on low dose) that came back fine, my ana was ok, and rheumatoid factor just slightly off. Bloodwork also showed that I am overing a case of mono ( guess its from gym since I havent dated in 4 yrs.) so doctor says I most likely have fibromyalgia, keep a journal and we'll be certain in a few months time. But we discussed it and told her all my painful areas and when and how it comes and goes and is sometimes so excruciating to just pick up a cat at work its crazy... this past week was back with my back and shoulders, had to pop Aleve and stay with heating pads but worked a 45 hr. week and did get my cycling classes in... I dont know what to do, i dont know much about this and am kind of scared. I'm only 21 and thought I'd be getting on my way into the world... am planning on moving next week and am finishing up my degree this semester then find out about this. help?

[kaplods]

the fibrohugs site was a huge help to me. I found it just before I was diagnosed (or rather, I suppose, in the midst of the diagnosis process, as doctors were considering it when the site ws recommended).

I strongly recommend three books:

MemoryMinder Personal Health Journal (A Wellness Diary & Symptoms Log) (Spiral-bound) - at least take a look at it on the amazon.com website as it
contains very helpful information - I'll say more about that at the end of this post

Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin J. Starlanyl and Mary Ellen Copeland (Paperback - Jun 30, 2001)

Fibromyalgia Advocate: Getting the Support You Need to Cope With Fibromyalgia and Myofascial Pain Syndrome by Devin J. Starlanyl and Hal Blatman (Paperback - Sep 30, 1999)
__________________

Both of the books by Devin J. Starlanyl (she's a doctor who had to go onto SSDI disability for severe fibromyalgia) are fairly comprehensive, however they also include alot of information on theories and therapies some may consider a bit far-fetched, or at least unproven. Still, the insights and anectdotal case histories alone are very helpful.

On a side note, sleep disorders are sometimes triggers or part of fibromyalgia, so you may find that making good, restful sleep a priority reduces flares. If you can avoid sleep deprivation, you may find this helps. Regular exercise also helps (even as it's so hard to accomplish during a flare). I'd recommend attending a support group, if there is one in your area for fibromyalgia or chronic fatigue (some doctors feel these are related syndromes or possibly different manifestations of the same disorder(s)).

There's no cure for fibromyalgia, but some people do go into spontaneous remissions. There are also a lot of treatments and therapies and lifestyle changes that will help, you just have to be your own guinea pig for a while. One thing that does seem universal, the better you take care of yourself (physically and emotionally) the more control you can establish over the symptoms. You will find what helps and worsens your symptoms (the symptom journal is really key).

For me, my biggest trigger is sleep issues. More than one night of insomnia and I am probably going to have a flare. Another for me is weather (unfortunately, completely out of my control). Barometric changes, particularly if they are sudden, tend to throw me into a flare. If I wake up feeling like I have the flu (you know that allover pain including not only muscles, but even the skin hurting), there's almost always a big storm rolling in.

Regarding the Symptoms Journal:

For ideas what to document in your symptoms journal (or if you want to use it, you can buy it), go to amazon.com and search for MemoryMinder Personal Health Journal (A Wellness Diary & Symptoms Log) (Spiral-bound) you can click "Search inside this book" (under the photo of the book), and it not only has a few pages of how to journal, but actually includes the two pages of journal log.

This was a GREAT help to me, and I still use it occasionally. The diagram of the body to circle where it hurts and rate how badly was VERY helpful (you can see what I'm talking about if you do the search inside). I never would have noticed the sleep and storm trigger if I hadn't been recording how long I slept or what the weather was like on the pages of this book.

[meowee]

Hi KAYCE . . .

Sorry to hear about the Fibromyalgia diagnosis. You are fairly young for that little nasty -- seems to hit more in the thirties and fourties from what I've read.

I'm not personally familiar with the problem but do know from a friend that you can pretty much expect good days and bad days; but that, over time, things do seem to get better.

Suggest that you surf around the net and do as much reading as you can on the topic.

Good Luck for an erly remission . . .

[meowee]

Thanks KAPLODS for a terrific bunch of information as usual -- I never realized there was a weather connection -- must tell my friend about that website.

[kaplods]

And not everyone does have a weather connection (but I've since learned of many who do). It's why I really believe that fibromyalgia is not one disorder, but several with overlapping causes and symptoms.

Fibromyalgia can strike anyone at any age. It's theorized that many children with "growing pains," may actually have a childhood form of the disorder. It may be diagnosed more in the 30's and 40's only because doctors tend to take the complaints of people in this age group more seriously. When younger, it's often attributed to depression (which doctors were trying to convince me I had, but with my Masters in psych I was strongly disagreeing with, because I didn't think the symptoms fit). Older patients generally have such symptoms blamed on depression, arthritis (even when xray evidence shows minimal damage) or the aging process itself.


My neurologist theorizes that fibromyalgia is often a sleep disorder. Which actually makes sense, because in sleep deprivation studies, healthy people deprived of sleep exhibit many of the symptoms of fibromyalgia. In fact, the symptoms were so severe, that the study was stopped mid-way and for ethical reasons sleep deprivation studies of that kind (deliberately depriving people of sleep for extended periods) really aren't done anymore. Rats, when deprived of sleep will quickly die of illnesss usually related to immunity or autoimmunity. I have an autoimmune disorder as well and am extremely prone to staph infections. Coincidence? Maybe not, as my sleep study showed that I had sleep apnea and never entered the most restful stage of deep sleep. When I had to go on disability it was after working a job for 5 years in which I worked ungodly hours at times and was on call 24/7 and sometimes had to go into work at 7 in the morning after having dealt with problem calls all night).

Addressing my sleep deprivation and apnea has helped a great deal (though I don't know if my sleep depth has improved).

Fibromyalgia is a complicated disorder, but there is a lot of good information and support out there. And a lot fewer medical professionals saying it's an imaginary or psychological disorger (though there are still a few).

[kaceycrystal]

It has been awfully rainy here the past few weeks and I've felt better the past few days now that it's cleared up... will definetly look into that journal, doc said to start keeping one everyday of how i feel and what im doing (for workout, eating, sleep and such) just to see if any of that is a trigger. And it's funny you mention growing pains because i remember being very young and having to have my mom rub my shoulders because they hurt so bad and her telling me thats what it was...? i also did Not sleep well last week, i hurt so bad it was ridiculous, debated on going to urgent care and i hate going to doctor. My cousin thrives on attention and is constantly getting "hurt" so growing up i shied away from it because i know it irritated the family and kept things to myself but i was really rethinking that the other day...

[mollymom]

I was devastated when I was diagnosed two years ago. However, I had to do a real tough look at my life and I made the following changes:

1) I was determined that this was NOT going to be "the end of me"

2) Worked with my doctor to find meds that work for me...everyone seems to be different. I take an antidepressant, an anti-inflammatory as I also have osteo arthritis on top of it, and gabapentin...newly approved as promising for pain management in fibro.

3) I revamped my diet...and did a lot of reading on inflammation factors in food. I used nutritiondata.com for info as it includes a inflammation factor in its analysis of foods.

4) I worked with various pillows and mattress pads until I found a combination that works for me. I DO NOT RECOMMEND TEMPURPEDIC...terrible reviews for people with fibro..worse pain than ever

5) I worked to create a regime of natural supplements. I truly believe that fibro has an auto-immune system malfunction as part of the syndrome. The fact that I had six surgeries and massive doses of antibiotics in the years prior to developing fibro makes me very suspicious...anyhow...I take: wild fish oil, glucosamine/chondrition, magnesium, vitamin E, probiotics, and Xyflamend and Holy Basil from New Chapter (Xyflamend was endorsed by Dr. Andrew Weill as well). I also save those receipts and claim them as a medical deduction in my taxes...no problems so far.

6) I work out no matter what..even on a bad day a walk gets done..may be a short and slow one, but I always find the pain seems better after some exercise. Use my heating pads and my ice packs as necessary.

7) If you have access to a pool and a hot tub...I belong to the Holiday Inn Swim club...use them. The pool is great for supporting your body and taking stress off your joints.

8) I worked on my sleep "hygiene" ...no coffee after noon, exercise early in the day, not before bed, dark room, etc.etc. I do have sleeping pills when I am desperate, but I have taken 9 in the past six months.

I AM GOING TO CONTINUE TO LOSE WEIGHT...the less weight I have to carry, the less I will feel my pain.

AND the good news is FIBRO is not a "progressive disease"...the degree you have it now, is the most you will ever experience. I consider myself fortunate..I place myself at about a 5/10 for severity of symptoms.

The one problem with fibro is it is an 'invisible" disease. If we used a cane, or limped or had something visible, it would be far easier for coworkers and family to understand. I try to gently educate people. My staff is going to find out that this year I am not being assigned outdoor yards duties...standing for 20 minutes in a freezing cold canadian schoolyard is NOT a good idea. I had to advocate for that with my boss, but I had medical support. I have been given an ergonomic keyboard and a better padded chair..again I advocated. My employers have a health and wellness officer..I used her services. You have to look after yourself..know your limits and plan on how to keep going on when you have to and it isn't a good day.

Research is ongoing...fibro is starting to be accepted as a REAL MEDICAL CONDITION..not something women whine about when they get a little ache or pain. Best of luck to you...it isn't a death sentence, which is something I always keep in mind..the prognosis could have been much worse

[kaceycrystal]

I appreciate that truly... I don't think mine is all that terrible, but really don't have anything to compare to except for i did crush my wrist when i was a kid- id rate that at pain of 10/10 bc i kept passing out and had to have surgery... i'd put this at 6/10 since I think i do have a high pain tolerance and ended up not being able to get out of bed and was rolling from side to side in pain with heating pads and naproxen. Trying not to use anything too harsh, when im achy use simple alleve but the naproxen is double that dose so when i hurt so bad took that... worried about the tropical storm coming and bringing that weather, havent hurt too bad since last bout of storms and am scared that this is gonna be bad when it comes, not to mention i moved last week and have been sleeping on an air matress till i can move my bed over after i unpack so that doesn't help matters. I always try to excersice, funny, I looked for ways to get out of it for 20 yrs. and now i relish it and am at the gym 2-3 hrs everyday and get diagnosed with fibro and hypothyroid the same yr! ( well to be fair, have been hypo on and off growing up - hashimoto (sp?))
but have def. noticed that excersice helps a lot when its my joints and such are hurting but its killing my upper back for some reason? so this past week only went to one weightlifting class (tuesday) and did yoga on wednesday and have just walked around the neighborhood since then ( and held my new baby cousin who was born thurs!) and so far I have lost 88 lbs. and 16% body fat! I am only 12 away from my big goal and 62 away from final!

[mollymom]

Huge congrats on your accomplishments regarding your weight. I have found the more weight I lose, the less my symptoms affect me. YOu are so young, I am so hoping that with exercise, supplements and decent informed medical care you will have many many years of happy productive and pain-managed years ahead!

[kaceycrystal]

Ok so i have moved out from home! o its so nice to have quiet and be by myself... but do have a question, been sort of down lately even though i am coming up on another weightloss goal (100 down!) is this something connected to fibro because ive noticed when im blue im also more painful...? Also, what supplemtns should i be taking? I am on a Apex multivitamin and Apex calcium and GNC biotin 500 mg ( because when i get stressed my hair tends to fall out some)