Does anyone feel that just Tylenol and excerise is the best thing for FM???? And that it's not a life sentence of a disabling disease????? That FM is not a daily problem, only a problem during flare ups???? I just read some articles from this web site saying these things. Well no articles, no doctors, no health web pages can or will ever convince me of that! I agree that some days are better than others, but the fatigue, the pain, the fogs, the problems of noise levels, dry eyes, the insomnia, did I mention the pain are always there, not just during flares. It's during the flares that it is almost impossible to endure. No one will ever convince me that Tylenol will handle my pain. I'm not one to give in, I stay busy and still work, probably more than I should....but I could not face each day with a little excersise and a few Tylenol. Not disabling, some days I just don't want to get up, face another day of symptoms. Some days I just wished I would not wake up. Not that I'm suicidal or anything, it just wouldn't bother me.
Sorry, must have a bad flare coming on.....just needed to vent a little I guess.
Last edited by Chef Elizabeth; 06-03-2006 at 08:54 AM.
wishful thinking ... that tylenol + exercise would solve the problem. you are certainly right in all your points my friend. I'm also not a case of giving up on myself, I work and will certainly continue, but whoever HAS fibromyalgia it goes like this : it never leaves you, it's always there, the pain, fatigue, etc etc. Of course, there are days when the fatigue/pain are totally unbearable whereas other days are very bearable and controllable. By the way, I've read in many sources that whoever has fibromyalgia should continue working and not quitting. Forget disablement, this disease needs management, this is what I know. And also cognitive behavour therapy ( which I haven't done ) but which I assume would be a great help cause it teaches you how to continue your life with chronic pain without the psychological hardship that comes with it. And also for whoever can afford it, help help help for house chores, shopping, etc. A person who suffers from fibromyalgia cannot handle work during the day and then manual work at home, it's impossible. And since not all of us can have the luxury of staying home AND complaining of pain, you must therefore find the most practical way to deal with your new sore you !!!
Well, you certainly are adament about it never getting better and no relief between flares. I can tell you that I AM symptom free most of the time. And i had many of your symptoms. Have you been to pain management? Have you read "Fibromyalgia and Chronic Myofascial Pain by Devin Starlanyl? This book saved my sanity. There IS hope. Don't give up before the miracle happens. I hope that you will seek treatment that will make you feel better soon.
I sometimes get very adament about things when I am about to go into a flare or during a flare.....but it really gets under my skin when big name web sites talk about using Tylenol and aerobics to fix your problems with FM. Thanks for the info about the book, I'm looking for it right now. You stated that you are sympton free? How did you get that way, what did you do? I'm real excited there is a way to be symptom free.
I was diagnosed 8 years ago...been through the holistic way with supplements of Mag, Q10,etc., of course through all the NSAIDS, PM clinic, cortazone injections in the jaw and back areas, chiropratic, massage (which was the best so far), hydrotherapy (which helps), new bed (which has helped), Ultram, Soma, Ultracet, Vicodin, Percocet, etc. and just plain cowboying up and dealing with it day to day. But the days are getting longer and my tolerance is getting shorter. I was a very active person before this, now all I can manage is to go to work, crash out at home. I had to give up my 18 year career in 911 because of the brain fogs (hesitation could get someone killed), so I turned to my next love, cooking (which doesn't pay very well, but it's a living). I'll never give up work as long as I can, a hard worker all my life....I'm a single person (desire or inclination to have a love life, you betcha...not!) and my only son is in IRAQ on his second tour and he stationed in Kentucky the rest of the time. I usually never talk about my problems and I'm not a quitter, this message board has given me a new perspective, someone to talk to, someone to listen, someone to share their problems and solutions. I know several chronic pain sufferers, but for the most part everyone (family included) do not have a clue as to what I'm going through although I've tried to educate them. Don't you just love that look when you tell a family member or friend about your FM...(hmmm, she looks like she's alright, but if she says she's in pain, well I guess so.....)..My youngest sister is a CP, having several back surgeries, the family just puts her off to just being a pill junkie, so it makes me withdraw and not share with them that I am becoming one too. I take so very little right now that they can't tell I'm on any meds at all. But those days are fast being over, I'm going to have to take more of something just to bare it.
So please share how you became symptom free, I would do anything to not have to be a pill junkie and a recluse.
Last edited by Chef Elizabeth; 06-03-2006 at 08:56 AM.
I think there are many levels of severity & presentation w/fibro. Some people just have trouble during flares. Others of us have day-to-day plus flares. Some people have the fog most of the time, for others it's not an issue at all.
Yah, it really sucks when this disorder cuts into livelihood. I was a former professional turned SAHM who was looking forward to doing something productive once my special needs kids got launched. Only to arrive at that point in time to find my brain ... well, that's just it. Can't find my brain, it's lost in the fog.
IME, the severity & presentation can change w/time, as can the need for intervention. Some people manage w/OTC. Others need narcotics. Some of us do everything alternative plus everything medical available. Others are firmly in one camp or the other.
The lack of social & medical validation complicates our lives immensely. If only there was proof that we're not just slackers! My Mom says, "you used to be such a go-getter & hard worker, what's wrong with you?" Well geez, I'm STILL a go-getter, a very bored, frustrated one! Getting dressed is a big accomplishment these days, what with the stiffness & pain. I'm fortunate to have a very loving & understanding, supportive spouse. But in the extended fam we have a doc ... one of those "fibro is all in your head" types. Now THAT's helpful!
Sorry I can't share "how I became symptom free!" I cope. And I hope. The things that have helped me most so far are: thyroid meds, EPA fish oil concentrate, MSM (oral & soaks), mag malate at bedtime, topical NSAID (Rx compound, I don't tolerate oral NSAIDs), & gluten-free diet (cured IBS component).
Oh, yeah, I do exercise! Most people wouldn't call the little stretches & range of motions I accomplish after 5 min under a hot shower "exercise," but they DO help me some. And I try to walk ... really it's more like a toddle ... about 1 mi per day, takes me 45 min., and I can't do it some days. However, this vigorous exercise routine has not yet cured me.
What kind of bed did you get that helped? My shoulders kill me, I swear it's our bed, and our mattress is due for replacement; however, I have trouble w/that memory foam (chemical sensitivity to the degassing). Would love to get regular pro massages but can't afford it; am stuck w/a handheld shiatsu massager, which is a little helpful.
I have hope that med researchers will soon find a cause & if not a cure, more effective treatment. Me, I don't tolerate tylenol at all.
I agree on the tylenol being worthless. At least it is for me, it does less good than a drink of water for me. My drug of choice (when I need it) is ibuprohen it helps me the most.
On the exercise subject, I am an advocate. It doesn't have to be organized aerobics but some sort of physical activity is very important to keep from just stiffening up and not be able to move. If you are a chef and work all the time, you get plenty of physical exercise so maybe doing some relaxing stretches of the muscles you don't use in your job would feel good to you.
I feel staying active in some way is important, because if I have those days where I just sit around I am usually in more pain and hurt more. I also feel drugs are needed to help manage this disease but that is an individual thing. Everyone has what works for them. I use muscle relaxers and sleep meds and I do take vitamins. I also take prednisone for my joint problem so that helps me keep going.
I think coming here and hearing other ideas and opinions and just venting sometimes does help all of us. We learn new ways to manage and cope and hear how others are doing it and we get the support so necessary from those who understand.
I have the sleep number bed.....I can change it from firm to soft with just a touch of a button. It takes a while to get use to it, but well worth it....it was expensive, but being alone I was able to get by with just full size. Also making my bedroom the most relaxing room in the house with curtains, lighting, soft colors and nice scents has really helped a lot. There is no tv, just a cd player and lots of books and magazines. But I think the most relaxing thing in my house is my little daushound. She just seems to know when I'm having a hard day, she curls up next to me and just wants me to pet and scratch her all over, she's such an attention hog, but it moves my focus completely onto her.
Fibro is different for everybody, but I think it's more typical that there is pain of some level there all the time and nothing makes it go completely away. I'm sure the fog results from our bodies constatntly trying to deal with pain. Sometimes it even hurts more to hear someone say they have times when they are pain free when most of us know that is something we cannot achieve.
I am a divorced mom of 3 also. My kids are 8, 7 and 4. I take oxycontin, soma, effexor, xanax, tylox, ritalin, topomax, and ambien just to make it thru the day. Trust me, I'm not proud. And with all that I still have pain. I have to be physically active because of the kids, but each movement is filled with pain. I have tried many supplements, physical therapy, biofeedback, massage therapy and accupuncture to no avail.
We do the best we can. If tylenol and exercize helped everybody, there wouldn't be research being done on other therapies.
We are all diifferent, but we are all sisters in pain. I understand your pain and I love ya for what you are doing despite your pain. Every day.
I had myofascial injections, physical therapy, myofascial release and took percocet all from my pain management doctor. I exercise, using a beginners balance balance ball dvd and i walk. I usually sleep all night with flexeril. I do not multi-task or stress myself out. Gradually, I got better. I think i had the chronic myofascial pain before the fibro, so when that was addressed, my body began to heal. I am just so much better. I hope it lasts. I know that its different for everybody. Just know that there is hope.
Hello Chef Elizabeth, welcome to the fibro board. Thank you for your
post. Sometimes I feel like I am the only person who can't find a pain
free day... At 75 I still do all my own housework,cooking and what yard
work I can manage, but the pain is still almost unbearable at times.
Today has been a bad pain day. This morning, one of the songs we sung
in church was ''It is well with my soul''.....it brought tears to my eyes because I
know that in the depth of my being, pain can't rule.
There are so many things I'd like to do. My husband of 56 years is in good health
and would like to travel like be did the first years of our retirement....it's impossible
for me to do, even if I loaded up on pain medication. What most folks dosen't
understand is that this disease changes our lifestyles. Thank you again for
your honest words; I needed them this week-end.
I pray that soon the cause of fibromyalgia will be discovered, only then can a cure
be found. I pray a special blessing for you Elizabeth!!!
Thank you for all the lovely words and thoughts, along with the welcome to this board, bilij. I am just so excited to be part of the board....to me it has become the home of the brave in the land of hope!