fibromyalgia

Hi everyone!

I am 47 years old.  In January of this year I was diagnosed with fibromyalgia.  I have been having symptoms for a long time now, but didn't really "suffer" until November of last year.  In November, my body just sort of crashed on me.  I literally felt like a 90-year-old woman had stollen my body and left hers behind for me to use.    I was so sick, my husband was afraid that I had a terminal disease.

Needless to say, we were both relieved when I was finally diagnosed with fibromyalgia, which is not terminal, but it is chronic and there is no definite treatment.  

Currently, I am getting ready to start a new job on Monday, trying a new treatment for the fibromyalgia (which actually causes worsening of symptoms for an unknown period of time before eventually leading to an asymptomatic existance), trying to lose weight and fighting desperately to maintain a regular work out schedule. 

I was wondering if there were any other fibromyalgics here and what you do for exercise?  I would also love to hear from others about any treatments they have found success with. 

Thanks!

I'm here! I was diagnosed with fibro about 5 years ago. What are you starting on? I found my diet has a lot to do with the pain level. Also not drinking ANY DARK liquids especially coffee and black tea and colas! Not because of the caffeine but because of the acid they have. I also take the Glucosamine/Conjointin Triple Strength. This helps a great deal.

I tried all the muscle relaxers and pain pills without much success.

Exercise??? What exercise!! I do what I can and stay as active as I can. I do stretching exercises 3 times a day. I also bike ride and walk on the treadmill as much as possible. Every day is different and we need to do what our body is telling us to do making sure we don't over do it. It's a fine line and when we cross that line we feel it! Ouch! Have a good day!

Your story sounds a lot like mine. I added you to my friend list. I hope you don't mind. I hope work is good for you. I could no longer work and had to quit.

hi!  I don't have fibromyalgia, but do deal with the physical symptoms of depression.  I am currently on Cymbalta and they use it for fibromyagia as well.  I don't know if this is something you have tried, but it might be worth looking into if you haven't.   One of the benefits of cymbalta is loss of appetite, so I find it's been much easier losing weight since I've been on it.  Good luck!

Hi Kathi, I'm here too!  I too was 47 when finally diagnosed.  You have described it perfectly.  Rinzy, my Dr. has been trying to get me on something for depression, but I keep telling her I am not depressed!  Hi Coffee!  I had to go part-time at work instead of full-time due to the sheer exhaustion, Kathi, I too hope work is still going well for you.  I take 1/2 of a 750 vicadin-twice a day.  It not only helps me deal better with the constant pain, but it also gives me a boost.  I also take a muscle relaxer before bedtime.  I have tried a few times not taking it before bed, and I can barely move the next morning.  I am supposed to be doing stretching exercises, but it hurts, I do what I can.  I am a freak about a clean house though and I consider that as light exercise.  All you can do Kathi, is just what you can do, no more.  I wish you nothing but the best.  Also, I am so pleased that your husband is as supportive to you as mine has been to me.

Thanks for all the replies!

The new treatment is called the guaifenesin protocol.   My primary care physician recommended it.  She has two patients that are doing this and having great success.  It is the only treatment I have come across that has potential to actually reverse the FMS totally.   Here is a link, if you are interested. 

http://fibromyalgiatreatment.com/GuaiProtocol .htm

I just started the protocol on Thursday night, and have no idea about whether it really works or not.   I have talked to several people who have been on it for years and swear by it.   At any rate, I thought it worth a try.  Anything that can get rid of the fibromyalgia is worth a shot!

As I said earlier, with this protocol you get a lot worse before you start to see any improvement.   That is what I am going through now.  This morning everything hurt, even my toes.  

I did start my new job today.  I work at home, so it is a little easier on me.  I tried to get up early to exercise, but there was no way I could with all the pain today. :(

Rinzy, I have been taking Cymbalta for a while, long before the fibromyalgia was diagnosed.  I take it for panic attacks.  It didn't do anything to help my fibromyalgia, but it did help to keep me from panicking.

Mindy, I am trying to stay away from the pain meds if possible.   I think I probably have a tendency for dependency and want to try not to go down that road unless I absolutely have to.   I am glad that you have a supportive husband too!  I think it is essential when dealing with a chronic illness like this.  My husband has been the best possible treatment for me!

Coffee, I added you to my friends list too.  Our stories are very similar.   I'll let you know more about the treatment after I've been on it longer. 

hey, me too!!


I was on heavy meds for about a year, but recently I am off most of them and feeling fantastic!! i've finally goten a handle on the pain through acupuncture! i was skeptical at first, now i am a huge fan!

another piece of advice- get orthodics in your shoes!!! this small little thing changed my life. really helps with the pain.  my doctor fitted me for them and my insurance covered.

Hi there,

I think that I am the baby of the group here.   I was diagnosed with fibro around the age of 20 and am the big 30 this year.    I have not tried the guaifenesin protocol.  Hope it works well for you.  I take the usual set of meds (flexiril, ultram, ld prozac, etc.)  and have found a balance that works for me for now.  Sadly, what works for one may not work for another and what works right now for you may not work in the future.   But I am still leading a semi normal life and getting close to finishing my PhD.  

I will have to admit that I am not so good with the diet regulation.  I have found that if you can get it started, exercise, rest and dealing with the mental/emotional aspects of it all helped me a lot though.  And I second kimO statement about the orthodics.  My doctor claims there is such a thing as a fibro foot.  Whether you believe it or not, my orthodics have been the best b-day present from the parents in a long time. 

 As for exercise, I walk 3-4 miles a day (can do some in the gym but get outside for at least some of it), do yoga every evening and keep an active schedule with my labwork.  I also lift light weights.  I think I am repeating what others have already said, but listen to your body and if you are not feeling well that day, do not push yourself.  Pushing beyond your limit will make everything worse for a while.   And I just assume that I will have one or two slow days a week and that is fine.  On the weekends I rest but am still able to cave, hike, camp or climb regularly.  

 The biggest thing I have found that is important is dealing with the emotional aspect.  Face it, we all were probably told we had some horrible disease and might die, and then found out we have a chronic disease that makes us feel like we have a permanent case of the flu (or worse.)   It will make you a bit angry.  It is fustrating when your friends call and want to go shopping or hiking or just to have dinner and you can not because you do not feel well or worried about what attack you will have when.  It is sad to think that you will have to deal with this the rest of your life and even if it gets better for a while with medication, it may be worse later on.   And it sucks that fibro is like an unwelcome distant relative  coming to visit, more than likely it will have friends (irratiable bowl, RA, depression, etc) that is decides to invite over without asking you, the host, if it can.   When I was first told I would be sick for the rest of my life, I was so pissed.  Granted, I was very young and still believed that life was supposed to be fair and happy.    But learning to accept that I was not perfect and could no longer be the best, fastest, strongest, etc, what a hard lesson that I am still working on everyday.  I am getting better at it with age, but do not ignore the emotional side of all of this.  It goes for the exercise too.  Do not feel like you have do it all.  If you can only do a few stretches that day, hey, you still did a few stretches.  I felt like I was just being weak because I did not exercise as hard as other people or as hard as I had before.  That is the way wrong attitude to have.  I guess that leads me to my second big discovery, for me, learning to be not compete with others was huge.   Don't compare yourself to others or beat yourself up if you are not doing as much (for the record, no one on this list sounds like they are very competitive.)

Well, I will be quiet now.  Thanks for listening and good luck.  

Hi, I am a 44yo RN who has fibromyalgia for about 13yrs, but diagnosed about 7 yrs ago. I have a big problem with maintaining exercise. In general I am always able to walk. I am able to use an exercise bike at times.  The daily routine is difficult for me. I work part time, 3-4 nights a week. I can get family leave intermittently if I have a flare up.

 In general, only moderate exercise is recommended. I have flares when I overwork, under stress,  temperature changes- esp. heat. Water excercise and yoga is something I have wanted to try but have not yet. The most important thing is learning to pace yourself. Never over do it. Schedule in rest periods, and learn to control stress.

 National Fibromyalgia Association has good info on the web.  I take cymbalta 60 which has helped tremendoulsy.  I also take lunesta and melatonin for sleep.  Non restorative sleep is one thing that makes FM worse. Lyrica has been approved for FM pain.  I am saving the pain killer for old age.  For me, the pain usually passes when I rest, but the fatigue never lets up. It drives me nuts because I am more of an acheiver, but this FM has slowed me down, and now I am much less productive.  I have to just take life as it comes and appreciate the moment rather than my natural tendancy to plan everything out. 

 

Hi,

I was diagnosed with Fibro at 17 after 2 years of unexplained pain and loads of tests. I am now 26 and in management mode. I'm currently only tacking OTC for my chronic headaches, however I have moved away from the home I grew up in because of the extremely cold winters. I am currently employed full-time in a job that has me on my feet 6-8 hours per day with breaks every couple hours. Usually 30-45 minutes at a time. I do notice if I miss even one break the next day I'm either in bed for half the day or if I have to work that I'm "movin' as slow as molasses". Thankfully the major contributor to those days is gone. 

Overall I'm doing okay, now I'm going to work on the flabby tummy since my BMI is acceptable. I'm going to work on adding a gentle cardio and mild excersize program into my schedule and also incorporate Max Muscle ITRX as a vitamin supplement as a coworker said it helps him sleep and eliminates the need for prescription sleeping pills.

Naomi 

Hi,

I'm new to this diet page but I've lost 5 lbs in 2 weeks.  My doctor keeps saying I may have fibromylagia but it is difficult to diagnose.  I have most of the symptons especially the pain.  I take Pamelor at bedtime which helps me sleep better sometimes.  My big question is HOW DO YOU GET DIAGNOSED?  Do I need to see a specaialist?  My doctor as an internal medicine doctor.  I live in a rural area but I am willing to travel.  And after the daignosis then what?  I'm confused!

Hi sallynbob, it is not difficult to diagnose FM. BUT the MD needs to know how to administer the test.  A Rheumatologist can tell quickly and also rule out other things. A good web site is the National Fibromyalgia Association. It will point out how it is diagnosed.  People think it is difficult to diagnose because it usually takes years of problems that wax and wane, and everything needs to be ruled out. Its a real hassle. Just go to a Rheumatologist and get it over with, then you can get the proper treatment. Good Luck! 

Hi,

My name is Cheryl and I was diagnosed with fibromyalgia  about 5 years ago and since then I have had a full hysterectomy for other reasons. I recently turned 33 years old and feel you pain.  I also suffer from RSL and a sleeping disorder similar to narcolepsy so needless to say.....I am hurting, exhausted, sleepy and tired ALL the time.  Family doesn't understand.  They just call it lazy or in my head which doesn't help.  I have been on Cymbalta and Klonopin at night and that has helped some but just getting up and getting moving has been my biggest struggle.  I have two wonderful children, 9 and 6,and I feel like I am robbing them of their mother because, lets face it, I am just to tired and achy to play much and I HATE it!  I have taken guaifenesin in 400mg doses daily but not much help their.  Exercise is such an uphill climb for me.  However, recently I have discovered ZUMBA.  It's a high impact aerobic/dance exercise that is helping me more than any meds so far.  It is so much fun!  It's just a bunch of us women dancing and having a great time but is excellent exercise.  I look forward to it everyday.  You may want to check it out and see if there is an instructor in your area www.zumba.com   It seems tough at first but after a few classes, it is like an addiction.  Anyway, just wanted to say "hi" and you are not alone in your struggle with fibromyalgia.

Hi dlucilled,

 

Well I went to the rhumatologist & she confirmed, fibromyalgia.  You were right, it wasn't hard for her to do.  I had already had everything else ruled out by my reg md and after an extensive history & physical she confirmed & explained.  It explains a lot about the last 20 years of my life.  I was already taking pamelor at bedtime for pain realted issues & she added cymbalta and some new anti inflammatory non steroid pain patch.  I'm not really sure if it does much yet but I will try it for a few weeks.

I pretty much just walk for exercise and maybe a little bike riding.  I have lost 16 lbs since Feb 26 and my body feels better because of that.  I would like to lose 15 more.  As you know some days are just so hard to get through.  I wake up at 4:30 everday to be to work at 6:30 and I get home at 4:30, so most days I can't wait to get to bed.  Luckily I have a wonderful understanding husband.

Thanks for listening.

Sally