Newly diagnosed, now what?

rjoberg

For the past few years I have been gaining weight and becoming less and less active due to constant fatigue and pain. I was finally diagnosed with Fibromyalgia in August which explained alot but I'm still struggling through the exhaustion and aches that I get even just from a short walk. How did you get any momentum going? I feel like if I can just get started I'll start to feel better and then will continue to improve. I used to be extremely fit and active but now I'm just so frustrated and the extra 30 pounds I'm carrying are not helping. How do I start without causing the pain that makes me stop again?

ichimichi

Slowly. I've had fibro since before it was even recognized by the AMA. For me, the hard part is getting back on track after a flare up. I'm in a strong phase right now and decided that encouragement was the piece I was missing, hence, I became active on this site. So far, it's good for me. I can see that I'm not the only one who falls off schedule or can't do as much on some days. Of course, the right meds and tons of sleep are more important to fibro sufferers than for others. I found I couldn't get anything under control until I got a hold of my fibro patterns. After 25 years, I can pretty much tell when it's going to hit me. If you want to connect, I'm glad to be friends with you - just request it.

Michi

divone1

Calmly try to get a handle on it. I've had Fibro for about 10 years. I have gone throug crazyt weight fluctions from 137 to 201. I have found that the sleep and rest are extremely important. But also extremely important is the exercise. I have exercised consistently at least 4-5 days a week for the last 22 months and I really feel the difference mentally as well as physically. Even though recently I have gone through a bad flare period for the last 2 months ( or possibly a new autoimmune issue, waiting for test results) it has been the exercise that has gotten me though it. Tracking everything from calories to workouts and notes about how I was feeling has helped me to see the patterns of what works and doesn't work for me.

Also important is finding specific "triggers". For me it is stress, sugar, nutrasweet and excessive wheat. If I can keep stress low and not consume too much sugar or wheat, I can go for long periods without a serious flare and day to day aches are kept to a minimum. Unfortunately, the fatigue never goes away but it is more manageable when you are not in a flare. Also, I am on an antidepressant at bedtime and every so often I add a mild muscle relaxer at bedtime too.

For exercise I use the Leslie Sansone walking dvd's. This helped me get the excercise without over doing it and get the extra 50 lbs off. Walking is the best exercise and it can be done regardless of the weather with the dvd's as now I have no tolerance for high heat or cold.

Try not to let the diagnosis get you down. Just realize that you need to find a way to control it as much as you can and make time for yourself to be a priority.

Good luck and feel well.

tratracee123

Sleep- super important, finding ways to get quality sleep has really help. I'm on meds to help with sleep but I also try to go to bed early and restrict caffiene.
Pacing- you can't do everything, do what is important to you and plan activities that make you feel good about yourself.
Hydrotherapy- hot water is awesome! and wheat packs.
Exercise- so hard with fibro but despite the pain and fatigue it really helps in the long run. Just don't do too much too fast, again pacing is important.
Diet- I have really cut back on dairy, it helps the IBS and possibly energy levels too. Some people also cut out gluten and artificial sugars but do what works for you.
Support- you are not alone or lazy, it's a real medical condition.
Hope this helps.

Deanna149

i like to encourage others to keep moving....with fibro when we stop moving is when things get way worse...it hurts and is hard i kno..and i have to remind myself of this daily...just keep pushing forward, do what you can on bad days and take advantage and pace yourself on good days, also, find ways that help your body relax and ease the pain, don't be afraid to pamper yourself a little bit, fibro is a long and hard struggle, you deserve it! good luck!

themommie

i like to encourage others to keep moving....with fibro when we stop moving is when things get way worse...it hurts and is hard i kno..and i have to remind myself of this daily...just keep pushing forward, do what you can on bad days and take advantage and pace yourself on good days, also, find ways that help your body relax and ease the pain, don't be afraid to pamper yourself a little bit, fibro is a long and hard struggle, you deserve it! good luck!

I agree I quit moving over time and things kept getting worse and worse, i gained over 100lb due to meds, lack of movement and comfort eating. But start slowly and do what you can. When I first started I only walked 1/2 a block at a slow pace and i increased very slowly over time. Hang in there, get lots of rest, do some exercise everyday and find what works for you also having other people to talk to that have fibro or understand it is good

jacie87

I was running 15-20 miles a week when all the sudden in January, I stopped. Over the course of a week, I could barely walk around the office. After a few months of tests, doctors suggested it might be fibromyalgia. I was devastated and was convinced that I'd never be able to exercise again. However, after counseling, dietary changes, and adjusting to life as a "fibromite," I've realized that I *CAN* exercise. Maybe not in the way I used to do it, but on a smaller scale.

The biggest lesson I've learned is NOT to push it on good days. Find a break or a day of lessened pain, use that day to do some light exercise. I've found that working in movement on good days leads to more good days, as long as you don't push too hard. Work yourself up slowly.

And definitely as some have said, REST! Another factor could be looking at your diet. Many people with fibro are vitamin deficient and can benefit from eating a lot more fruits & veggies.

Little changes like that have made a HUGE difference in my life, and I hope that they can help you, too!!!

sillymomgirl3

i just found out i had fibro this summer. i am trying to avoid the drugs so i am working out. i am taking it slow and one step at a time. i have found that i do feel a whole lot better on the days i work out versus those were i dont move at all.

gavians

Wow! I figured the same things out. " For me it is stress, sugar, nutrasweet and excessive wheat." Along with poor sleeping habits is a guaranteed flareup. I felt horrible over Christmas as my folks house because of course my mother has nothing to eat but cookies, some cookies, and bread. I didn't move the day after Christmas and napped for two days because I couldn't move.

tazzy_toon

I've struggles with Fib symtems for most of my adult life, but was always able to stay fit, but could never fully push myself like some of my friends. I've always joked that i'm as strong as an ox for about 5 minutes but that after that i'm exhausted for 5 days. lol

I try to keep it light but consistant and keep the junk food down to a min (but i haven't figured out how to get rid of it completely.)

But alot of times i push myself to hard and end up crashing for a bit. Best of luck to you.

EdwardBarrera

Pain... is our greatest teacher. Though I had to endure it for some 17 years. You have the ability to master the pain signal.

When we learn to harness the power in our brain, we can actually reduce tension levels in our skeletal muscles which allow us to regain mobility, restore natural flexibility and then our muscles, fascia, joints and bones get to feel more comfortable.

Today we know neural plasticity is alive and well so you can in fact change the information in your body.

For myself, I continue to practice this on a daily basis thus living the past 15 years pain free. In the meantime, I never exercise - I know the heresy of it all. I do enjoy playing soccer, going skiing, riding a bike, walking with the dogs, etc.

Now before anyone jumps on me about exercise. Exercise can further one's compensations which prevents us from being able to move freely and easily. The building blocks to successfully exercise, if that's what you want to do, are our tension patterns which no longer serve us They need to change. The brain being the vehicle of change so we can move well for life and enjoy whatever physical pursuits we want to enjoy.

Mastering the pain signal will require conscious attention on the intention of how well or not so well you're physically moving today. You can do it since it is our birthright to move well.

You can get back on track more quickly when you use a system and set of tools and follow people who've paved the way. Good luck to you, there's a lot of great information here... wherever and whatever you start with it, the rest is practice and tweaking it until you are satisfied... you will be well on your way.

larabell69

Hi I just was seen my doctor today and she told me that my symptoms are thoses of fibromyalgia, I have been living with pain and thought it was joint damage for being overweight! well I started MFP in July 2012, and been working out and feeling so so...always had some kind of pain, and it has got more offten and stoped me dead in my tracks a few weeks ago!! wow! I had no Idea, and so happy to see this group, because I was thinking for the last few yeaars that this was all in my head... felt crazy at times about how my body just be good one day and bad the next!! I hope to learn more and to get my body to feeling better! Thanks for all the great info... please add me if you could use a new friend I know I can use the support as well!! Larabell

BunnieLR

I was diagnosed with fm 23 years ago. I was a jogger and ran every morning and evening for miles. I was in great physical condition when I started having pain. I thought I might have arthritis so I went to a dr. who diagnosed me right away with fm. I was so disappointed. I tried water aerobics and physical therapy and slow walking. They tried all kinds of drugs on me and nothing seemed to work. I have been struggling for a long time. 7 years ago I gave up on taking meds to help because of all the side affects and weight gain. I just recently went back to the dr. because of a day in the emergency room with chest pain and dizziness (I was told it was symptoms of fm) ... and I am again trying the drugs. I am sleeping better now and I'm not feeling so depressed or anxious. I just didn't want to live the rest of my life like this but I guess I have no choice. I try to walk a short distance everyday and I make myself do housework to keep it up. I am working on my diet also. Cutting out the fat and sugar as much as possible.