New to Fibromyalgia

Hello, I recently was diagnosed with fibromyalgia. I have been having pain ever since I had my daughter via c-section 3 years ago. My mother was terminally ill at the time, and I believe the stress was hard on my body. When the doctors tried to put the spinal-block epidural into my spine, it wouldn't work. They tried 13 times, and finally gave up and did a regular epidural. It is my belief that my fibro was triggered with the trauma the 13 pokes to my spinal cord. Since then, my low back started to hurt to the point that I couldn't sleep. This would happen once every few months or so. We did an MRI, and only found arthitis in the back. Then the pain traveled up my back, and became a little more frequent. About a year later, I hurt my shoulder during moving. Once I hurt my shoulder, it seemed that my back pain became more intense and more frequent. I had been doing chiropractic care and PT for six months with no real help. It is at this time that my doctor sent me to a pain specialist (rehab doctor). We did a new MRI, which of course showed nothing to cause the severe pain I am in. It was my second visit with the pain specialist when I told him that I hurt my hips and that pain wouldn't go away that he figured out that it was Fibromyalgia. Once I looked at the symptoms, it made so much sense with the severe fatigue, fibrofog, tingling sensation in the extremites, etc. The pain has been severe and non-stop for the last 2 months, coming to a head during a visit to NYC, where I fell a few times from the hip pain. Now, I am constantly in pain, the worst being the mornings and at nights. No matter what I do, and what meds I take (hydrocodone and flexaril) I still can't get rid of the pain to sleep well. I have been getting shots of magnesium from the pain specialist that help, but i can only get it in one area once a month.

So my questions are, when do I quit acquiring new pain? My brother-in-law (also diagnosed with fibro) said that at some point my pain would plateau. I am hoping that is soon, because I can't take much more. Does anyone know?

Also, how often do flare ups occur? I think that I must be in a flare up episode, because the last few weeks have been impossiable.

And lastly, do you have any suggestions to help?

Thank you so much!

By Toni2
Posted July 27, 2009 at 9:21 am
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I was diagnosed at 33 years old. After my daughter was born c section and 4 epidurals, I couldn't seem to recover from it. Most dr.s thought post partum but I never had an oz. of post partum. Finally I had a dr. listen to me. I could not push my daughter up and down the small culdesac without feeling my legs would collapse and the numbness and tingling drove me crazy. 10 years later I'm happy to say most days I run circles around the "normal" people and most don't even know I'm sick. Diet and excercise are my salvation. A balance of good protein, veggies and healthy carbs. I follow the principles of the abs diet for women and never ate so much in my life but it is food that together builds muscle which we need for extra strength. I excercise for 30 minutes on and eliptical or low impact machine 5 times a week and lift weight and do the ab excercise in the book 3 times. I have been working out for years but adding this diet and these excercises has made it that I can finally lift more weight (comfortably) than the 70 year olds that made me look 90. I also take 20 mg a night of Amitriptyline. If I do all that and watch my triggers I do more than most. I do tons of yard work and clean my 4 bathroom 3 floor house spotless myself. I think the key is finding out what works best for each person too. I can do all these things but still if I walk a lot my feet swell and my knees ache forever. I did build up to the excersie slowly and on a bad day I still go but cut back to what is comfortable, if I lose my range of motion again I'll have to start all over. Hope this helps people.
Toni

By SweetOrganics
Posted July 27, 2009 at 9:22 am
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Hi lilmiller,

My fibro was also caused by my pregnancy, only I didn't have a c-sec. I was in back labor though & they did do an epidural which they had no trouble with. That is also when my low back/hip pain started...that kept getting worse, then 8 years later (3 years after my fibro diagnosis) I pressed my doc for a Rhuematologist referral & it turns out that while I did have fibro, my severe hip & back pain was being caused by sacroliitis. He also found the cause of all my other joint pain that didn't get better after going on Lyrica, like the fibro pain did. Turns out that is a connective tissue disease which was progressively getting worse. Once you get diagnosed with Fibro, doc's tend to blame everything on that.
Whenever I have a fibro flare, it was frequently in new groups of muscles in the beginning, now that I'm on the Lyrica, I tend to feel the flares in my thighs, arms, & back muscles...of course I have other causes for the other pain.

By Hyacinths4
Posted July 27, 2009 at 10:53 am
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I find it interesting that several of you have had problems since having epidurals, which I also had during emergency surgery for an ectopic pregnancy and while giving birth to my two kids. I now have degenerating discs in my lower spine and the doctors are unable to pinpoint a cause.

Regarding the fibro, you may very well reach a plateau but pain levels and the occurence of flare-ups will probably never be consistent. There are things that I've found that help keep both to a minimum though, and it is possible to avoid flare-ups.

I agree with Toni2. Although I also have non-visible physical disabilities that affect my ability to exercise, doing stretches and using a stationery bicycle help.
Diet/nutrition, using stress reduction techniques and learning to maintain life balance have made major differences for me. I've only had two flare-ups in five years and only take one medication - lyrica.

Re: diet/nutrition. I avoid overly processed, prepackaged, fried, junk and fast foods as much as possible. I focus on healthy foods - whole grains, fresh foods, organics.

Re: stress reduction techniques. I use a variety of means to deal with stress since it is such a huge factor in my pain levels. Meditation, visualization, prayer and Reiki. I am certified in both Usui and Kundalini Reiki and use it for myself as well as give healings and attunements to others. I also purposely bring humor and beauty into my life, listen to uplifting/happy music and make sure I spend time each day in my garden.

Life balance is the trickiest part and requires that you understand what your triggers are and honor your body and awareness of them. Having a toddler will make this difficult for you, I know. But you need to know what your limits are; how much you can or can't do before your pain levels kick in. Stop when you need to stop and rest. Ask for help when you can. Pushing yourself will only lead to a flare-up! If you can afford it, look for a life/health coach with an understanding of chronic illness who can work with you on life balance issues. I was lucky enough to find a coach who took me on as a pro-bono client for 3 months.

Read "The Spoon Theory" at www.butyoudontlooksick.com. The Spoon Theory will help you understand your own challenges better, and it's also something that you can share with others in your life so that they have an understanding as well. It's difficult to live with fibro when the people around you don't really have a clue!

Talk to your doctor about your sleep issues. Getting poor quality sleep plays such a huge role in your pain levels as well as your experience of fibro fog.

I mentioned that I take Lyrica. While it's not directly a pain killer, it DOES help me get better quality of sleep and helps with the seizure type symptoms of restless leg syndrome and neuralgia related pain. I also take Vit B Complex to help with my energy levels, Vit D and calcium (a lack of both can increase pain levels) and Co-Enzyme Q-10.

I really, really hope that some of this helps! Sending you gentle hugs...

Cynthia

By Carrol
Posted July 27, 2009 at 2:31 pm
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I think that my fibro started from a car wreck where I was hit broadside b/c I never felt the same after that. It is true that flare ups are different for each person but you will most likely find that one thing will be the change in the weather. I was active in a group years ago that everyone was effected by weather changes. Sleep is very important but I know how hard having a toddler in the house can effect that. We had a 2 yr old here, but if you can manage to get something to help you sleep from your doctor then do. If you don't want to take a prescription drug then try simply sleep, I have used it and had some luck w/it. It is like tylenol pm w/o the tylenol pm. The other thing is that when you do feel good you try to do all the things that you have neglected when you felt bad, you have to pace yourself b/c all that will do is send you right back into another flare. The other thing is finding a doctor that is willing to take you seriously and listen to you, most likely this will be a pain management doctor or a rheumatologist in the end rather than simply your family doctor b/c he/she cannot adequately control your pain.

By TinaC
Posted November 23, 2009 at 10:35 am
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My mother had Fibromyalgia. I have fibromyalgia too. I was diagnosed in 1994. Over the years, I reached a good level of functioning through exercise, diet, stress management, and rest. I am now divorced and working full time. All that I achieved is failing now. All my symptons are resurfacing. I don't want to discourage you, but I think it will be a constant battle to maintain a good level of functioning. It is possible to feel better, but now I think it is lifelong grueling process. Sorry to sound so bleak! I am having to make some very serious life changes!

By ValVal
Posted November 23, 2009 at 1:06 pm
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Have you ever tried Deep Muscle Massage? I have and it does help!! My insurance won't cover it so I don't get to do it like I should but when I can go it does help. My flares vary in length and time between. I do notice that stress it a big trigger. I also take Lyrica 75 mg twice a day it helps some.

By Asurvivor
Posted November 24, 2009 at 2:42 pm
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The pain never leaves totally. What you take for the pain is what matters. I now take Cymbalta and Naproxen, but have been in a flair for over a week now. Everything hurts unless I take the Naproxen twice a day.

Today seems to be the worst. I am going back to bed.

Welcome to Inspire!

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