Seeking Advice And/or Support from Others with Fibromyalgia

D.,
I think you may have helped me. Can you tell me what lead your doctors up to diagnose you with this? I read the symptoms online, but sometimes they all sound like you. Ya know what I mean? I am just wondering the details that I cant look up. Thank you for your time.

My mother suffered for years before a doctor finally diagnosed her with fibormyalgia. Since then she has tried everything from medication to acupuncture. The only thing she has found that works for her is pilates, and it has worked like a miracle. It does take plenty of motivation to go however, for her - the motivation is the way she now feels. Best of luck. I know my mom felt for years that she was alone in her pain --- know you are not.

HI D.,
I feel your pain. I also have fibro. I have a 6 month old son and after I gave birth my condition got worse. I went to see a doctir and he put me back on muscle relaxers. I take it only at night and it does seem to take the edge off. I have recently started yoga and that has helped with the pain. Before I was pregnant I also was seeing a rheumotologist and was getting treatments weekly.
Hope you feel better!

D.,
I too have fibromyalgia and I know about the days of exhaustion. And the pain and lack of sleep due to it.
Two things have helped me considerably. One is exercise. I was going to curves which is very beneficial and now I live in a different area so I use a gym and lift small amounts of weights and and use the exercise bike and walk. But the other thing that is amazing is a product called Xango juice. It is made from mangosteen fruit and you drink only 2-3 OZ daily. That has made a huge difference for me not just for the fibromyalgia but in several other areas as well. No sinus infections in a year. and my blood pressure is normal to low from being high. And no medications necessarey. If you'd like to learn more about Xango and even being a distributor I can give you my web site.
www.myxango.com/mjbattista

Hi D. :
I hope these sites help. Congratulations and don't let the diagnosis get you down, at least now you know what you are facing, from this point the only battle is to find what works best for you to alleviate the symptoms.
half the battle is to get one of our wonderful geniuses to do their job and stop telling us it's in our heads!!!
good luck.

http.//www.google.com/search?sourceid=navclient&aq=s0&oq...

http://www.fmaware.org/site/PageServer?pagename=community...

www.mayoclinic.com/health/fibromyalgia/DS00079 - 25k

www.nlm.nih.gov/medlineplus/fibromyalgia.html - 54k

Hi D., I do not know much about your condition, but have read about this women who has/had cancer(I believe she is now in remission)who was always low on energy and made her own "green" drinks. It consisted of blending spinach, lettuce, and other healthy foods in a blender and drinking them. She said it tasted good, and had many ways of making them. She said it was what gave her back her energy.. Maybe you could google recipes for such a thing and see how this works for you. As for the pain, I cannot recommend anything. Sorry. Hope that helps though. Good Luck, and Best Wishes.

I can absolutely, 100% understand how you feel....well, I guess I did not have the "used to" that you do as I was diagnosed before I had children!! I was diagnosed in 2003 at the age of 23 (although I believe it started years earlier and just went undiagnosed). My sister also has it, but we have opposite symptoms....she can't gain weight, I can't lose it....she sleeps all day, I always struggle with sleep....she has constipation issues, I have the opposite!!! It is a funny disorder because it often affects all the same areas of the body, but in different ways. Even since I have been diagnosed I have gone back and forth in treatments. While I was pregnant with both my kids my symptoms were slightly aleviated. After my second child was born I got worse than ever before, but I was not attributing it to the fibro and instead put myself through about a year and a half of blood tests, MRIs, x-rays, and treating all the various symptoms rather than recognizing that they were all a result of my fibro worsening. I got really depressed and couldn't figure out why I was tired and sick all the time. I FINALLY woke up about six months ago and said "duh!!"....and honestly almost immediately some of my symptoms eased slightly just because of the recognition and not getting myself all stressed out and overdoing it every day. I KNOW that when I am doing too much one day, that I have to clear my calendar for the next two because I am not going to be able to move. I have my husband massage my most tender spots every night before I go to bed to help me sleep and relax. I get massages when I can, but like someone else said, be careful they don't overdo it or you will end up even more sore. I have been recently experimenting to see if some muscle relaxers or anti-depressants will work, but so far I haven't found the right ones. I have a wonderful group of doctors working on my care now and I have been receiving prolotherapy (injections of what is essentially sugar water into your joints to stabalize them, which in turn stabalizes your muscles and causes less pain...email me if you want more details), chiropractic work, and just talking to some of them has really been a help. I have gotten some information on some support groups in the area as well, but I have yet to go to one. Let me know if you are near Albany and I can give you some of the details of all of the above. I think the most important thing that I can tell you is not to get frustrated with yourself because the stress that puts on you will only worsen your condition. Just know that you are not alone and if you EVER want to chat, just email me on here or at ____@____.com. (I am a SAHM so I am almost always around to answer quickly!!) I am blessed that I have my faith and a great support group of friends/family/church/doctors that are helping me through the worst of it and I hope that you can find the same!! Good luck and God bless!!
M.

D.,

My MIL has Fibromyalgia, it sounds like a horrible disease. I have no first hand experience, but she has said many times that when she eats healthy and avoids sugar she feels much better. Also, some light exercise like taking a walk also helps.

I admire you for being able to handle 4 kids and a full time job on your own, that's difficult even when you don't have a medical condition that is painful and depressing.

Best of luck,
R.

I remember back when the doctors had me thinking I was totally CRAZY because they didn't know anything about PMS therefore didn't know how to treat it....and boy did I suffer...had one good week out of each month for years and years...And boy did it effect everything in my life. I was in my middle 20's when a friend gave me a self help book on PMS...I spent a year working on all the suggestions until I found what worked for me....it wasn't easy but the problem improved a great deal and I was finally able to function in all areas in my life.....

I'm now a lot older and PMS is a faded memory for me.....I now suffer with a deteriorating
spine, a cyatic nerve (((oops, probably spelled wrong))that hates me, arthritis and COPD. The doctors told me to stop everything I loved doing and find other things to do that wont effect all my conditions... They might have well told me "Lady, stick your head in the oven".

I got motivated in adjusting HOW I do everything I love doing and I make sure I properly pace myself in everything I do. Every few years as my conditions get worse, I have to re-think and adjust the adjustments so I can still function in doing the things I love doing. Everything takes longer to do but I'm happy at the end to see my accomplishments...

Come to find out...One of the things that keeps me going and keeps the pain very much under control is: I'm in and out of Physical Therapy depending on how many appointments my insurance company will allow and when the therapest says we are done, they wont allow me to keep you here...see ya in a few months... I then go to a Pilates Studio and work out twice a week with a great instructor. Both types of exercises are gentle and very similar except the Pilates is a bit more advanced. I even set up a mini Pilates studio in my home, so if I can't keep my appointments over the winter months due to driving conditions, I can still do my exercises. Also know both Pilates instructor and physical therapist have taught me to breath properly through out the routines that actually help my COPD condition as well..know I'm an oxygen user as needed. ((((None of my pulmonary doctors over the years have mentioned breathing exercises at all...go figure.))))

I hear people say all the time "Oh I can't exercise because I'm in such pain etc. etc.." I say, " Yeah, it's painful to start...but the longer one keeps up with the proper exercises for them, the body gets stronger and the pain stops...I know, I've experienced it. I can actually do my garden chores, roller stake, ride my bike, dance, clean my home, carry and move things, I can even help my friends with their physical chores when they need help...all without causing me pain." I've also learned over the years that eating HEALTHY is just as important...getting constipated for example causes server back pain and urine infections. I'm now 61 years old by the way, a time in life when our bodies show down. I've surprised all my doctors who talked putting me out for spine injections and surgery after viewing my MRI years ago but couldn't guarantee any of it will help... and I said NO to it all.

I tend to think you need to start thinking positive and re-think and get motivated...you need to find what works for you so that you can function and enjoy your life again. Your children need you...your job depends on you as well....have faith and hope and get to work on yourself....
Healing Hugs........

{{{Gentle Hugs}}}

Oh hun, I know exactly where you are right now. I was diagnosed in 2000, just 2 days before I got married. Later that year my son was diagnosed with bipolar.... Bless my husband, he took it all on and didn't bat an eye over it.

A very good site to visit is fibrohugs.com. They have a lot of information there.

The best advice I can give you is to try to rest when you get a chance, don't over do yourself. You will be able to be there for your kids a lot more if you don't overdo.

Have your kids help out around the house. And don't feel guilty about needing to rest. Do a lot of movie times and such if you need to.

As for exercise, again, don't over do it. Your body will tell you how far you can push yourself, and when it tells you it's time to stop, listen.

There is a great theory out there called the spoon theory.

Each of us has a certain number of spoons to use in a day. So, we have to decide what we are going to do and how many spoons we are going to use for that activity. When you run out of spoons, then you are done.
For example, if you only have 10 spoons for the day and going out dancing used 4 of them, showering uses 1, work uses 4 and going for a walk uses 2, then you know you have to keep from doing one of those things or you'll over do it and use too many spoons. You have to decide which activities you can do without over doing it.

Getting massage also helps, just let your masseuse know you have Fibro and not to do deep tissue massage. If there is someone who can work on your pressure points, you should do that too. It will hurt like the dickens, but you'll find it will help tremendously.
Talk to your doctor about what he can do to help.
I take muscle relaxers, and I have pain medicine that I have to take to function everyday. Your doctor may decide to do that with you, or maybe not.

Just remember to take good care of yourself. And if anyone can help you with your kids, then take it.

K.

D.,
No you are not crazy, and don't get depressed. There are diets out there that help (maybe not 100%, but somewhat).

First elimination: poor cuts of meat (ALL fast food that is out there is poor meat), or meat altogether (I couldn't).

Scope things out on the internet. Fast food, and even a fair amount of restaurant food is poor.

It took over a year after I cut out fast food (no money = no fast food! and it's not really fast or convenient either) for me to feel better.

I _DON'T_ have a diagnosis. No one in my area touches that subject with a 10 foot pole that is covered by insurance. So be glad you KNOW what it is. That in itself is half the battle, as they say.

Next: try to go as organic as your wallet will let you - and be careful of what you buy.

Next: Portion control. part of it is eating too much for your body to handle. It's a little like the concept of diabetes, except your body is holding onto toxins. If you can go the 6 meal route, you might be better off.

Good luck! I'd say let me know if it helps, but you probably won't see (noticeable) improvement for a month or more.

M.

It is very tough. I too was diagnosed with this. Get really good rem sleep.Try to avoid anything that will interfere with sleep (caffeine,alcohol). Gentle stretching-I do active isolated stretching. You only hold the stretch for 2 seconds. Look up "The stretch book" by jim & phil wharton. If you google active-isolated stretches you'll get a lot of info and there may be video of it on you tube. Gentle Hatha yoga helps--but gentle. If you try a class make sure it is beginners or restorative and tell them you have fibro. Someone mentioned OPC-3 antioxident. I got some from a relative and I do think it makes a difference. After you feel a bit better walking is great. good luck

Hi D.:

My heart goes out to you - especially since I'm a working mom with a 3 year old little boy who is a bundle of energy except when he sleeps! Here is something that i do which helps me with a lot of aches and pains - sit comfortably where there is proper ventilation and where you can have 30-45 minutes of uninterrupted quiet time. Then close your eyes, and focus on your breathing. Take say, 20-25 long deep breaths through your nose followed by 40-45 medium length breaths (normal breath) and 40 - 45 short breaths (like you were panting - again through nose, though). Just repeat this cycle about 2-3 times and then stretch out and lie down quietly.

From the time you settle down to begin the exercise, make sure your eyes are closed and do not open them until after you've rested on your back for about 10 minutes. Do not worry about your mind wandering, let it - you just focus on your breathing. Also, do not try to meditate or anything, the idea is to only focus on your breathing and the counts. And if you find yourself drifting away to sleep somewhere along the way, awaken yourself by again coming back to your breath and the counts...

I find this a tremendous energy booster and pain killer and make it a habit to practice everyday on an empty stomach or at least 2-3 hrs after any meal. Hope you find this helpful. If you decide not to try it, I hope you find something else that helps.

Take care and keep your chin up!

Why don't you do a search and see if there is a Fibro support group in your area? Check the local hospitals for info and support groups. Also, try Yahoo Groups, they may have some Fibro support groups or you can start your own!

Also, it sounds like you're relieved that you have an answer but are depressed with that answer. So do you think that maybe you should should go on an antidepressant for a bit? It may help you to feel well enough to motivate you to do what you need to feel physically better. It might help you get your life back (mentally).

Good luck to you!!

HI D.,
I am sorry for your pain (literally). My sister developed fibro after her second son was born, and she was taking up to 6-10 Vicodin a day. What helped her, CURED her, as far as she's concerned, is not an easy fix, nor conventional, but if you are brave and determined you might consider it. She went through an holistic doctor and had a series of foot baths to strip toxicity, and got a mattress with magnets, parasite cleanses and colonics, but she credits her 'cure' almost exclusively to the liver cleanses she did. It is a day-long process which is not difficult but a little unpleasant, and you need to clear the next morning because you will not feel great. She has done about ten of these cleanses in all, and now, for pain, takes only a couple of Advil once a week or so AT MOST.
If you are interested in how this cleanse works, please contact me and I will send you the info.
Best of luck to you.
S.
____@____.com

Hi D.,
My mother was diagnosed with it last year and it has been very difficult for her with functioning everyday and all her children are grown and married so I can't imagine doing it with 4 children that require your attention. But she is part of two yahoo groups that help with information and support.

More support : ____@____.com

medical info/what to do : ____@____.com

Hope this helps you!

C.

D.
While I don't have Fibromyalgia ... I am a single mother of two with a full time job and no relief from my kids (their father is not involved in their lives).
I can't put myself in your shoes in the pain area, but I did look up Fibromyalgia and on several different sites they all read that you need to exercise ... so I think it would be best if you incorporate this into your routine, take tylenol after if the pain increases, but in time it will help you; not only with this syndrome but also with your depression and stress. I sometimes don't know how I fit all I do in a day .. but I do and I also make sure I find time for me in the form of exercise. I go to the gym 5 days a week and take a spin class or some other class. It's important ... it's an outlet ... and it also apparently helps with your Fibromyalgia.
Good Luck.

Hi D.,
I can't tell you enough how important it is for you to get toxic chemicals out of your home.Some doctors attribute fibromyalgia to toxic chemicals in the body. Also, can you do simple stretching or exercises? They should also help. You also need a healthy diet (like high in fiber and low in fat), lots of rest and good nutritional supplements. If I can provide further information call ###-###-#### and I would love to be of help.
L.

i had lyme disease which is also mistaken for fibromyalgia. please also check with your dr. that this isn't what could also be causing your pain and exhaustion.
good luck with healing!

Hello D., I have Fibromyalgia also. Their are alot of people with this terrible health problem. If you would e-mail me, I will share info with you. I never responded to anyone on this site, and I don't know if it would be advertising or what. My name is BJ, you can e-mail me, and send me your phone number, or I can call you. I know the pain your are going through, this sickness changes your whole life. Blessings, BJ ____@____.com

Having been a fellow sufferer for over 10 years I know what you are saying. The biggest key is SLEEP and I mean the deep kind..REM.. The second is antioxidants. I have finally had great releif with a product called OPC-3 but not just any opc. The one I use is from Market America and is pure and has not additives or fillers. I didnt believe it at first due to no immediate reaction but after about 3-4 months I began to get relief! And I was sleeping better! Actually dreaming again! (thats REM!) In any case this is not a promo for the powder but it worked so well for me in many many ways that I became a distributor about 2 years ago and am really happy with the other benefits of the same product! My blood pressure dropped and I now am off one of my meds for that, my cholesterol (which wasnt high to begin with) also came down 20 points! Nice side affects...check it out on my web page..nonamckeever.com. simply type in OPC-3 in search and read the science etc. Write to me anytime if you want at ____@____.com or call me ###-###-####. If it didnt work I sure wouldnt distribute it.

I understand. I was diagnosed several years ago. Make a chore chart and get the kids involved in the housework on an age appropriate level. Go to bed earlier. Anti depressants and walking also help me. You learn what your body likes and dislikes over time. Try not to let yourself get too down about it. You can google fibro and get more tips than you'll ever need or use! You'll have bad days (my fibro doesn't like the snow at all!) But you'll also have good days.