Afraid of Fibromyalgia

[DivaDiba0212]

Hello all, 

I am new to fitbit as of today and I am just starting my weight loss journey. It just so happens that my phone company was able to help me get a free FitBit and it is just the tool I have been searching for to get going! There is only one thing I am afraid of now that I have been wearing this today. Fibromyalgia runs in my family, and I have began to show all of the signs that my family members began showing just before they were diagnosed with fibromyalgia. My whole body is constantly hurting. Today as I checked in with my fitbit I realized how hard it is for me to get around when I am hurting. During the week I do not have a choice, and I am very active at my job regardless of the pain. In fact, when I am active the pain is duller than when I am at home. I know I cannot stay active all the time. But days like today, when I feel I have been ran over by a truck, it was very challenging to be active at all. I did manage to get up for a while and move about, but it is no where near what I should be doing. I guess what I am wondering is if there are any other FitBit users who have fibromyalgia and know how to cope on days like today? 

I have a doctor appointment this coming week to address this issue. I will either be diagnosed officially, or I will be looking with my doctor for other possible explanations for the pain. I am afraid of what will happen. Can any of you give me some tips? Thanks in advance

Tiffany 

[Odyssey13 · Accepted solution]

@DivaDiba0212  FM, as I call it, is an ugly beast that demands to be heard when it roars. I try to ignore it, but often the roar is too loud. I take no medication for it and no longer see the doctor.

When it hurts the most, I try to fight back. There are days when brushing my hair makes my arms ache and there are days when I feel as though I have boundless energy. Never knowing which day it will be keeps me on my toes. I've learned to listen to my body and know when to push and when to rest.

It's possible that feeling exhausted is due to the time of the month, which happens to us women. You may have a demanding job and a busy home life. Whatever your life throws at you, you're trying to juggle it all, aren't you? Problem with juggling is that if too many things get tossed into the air, it's easier to let one or two fall. You're only human and there are times you will need to rest and recover.

When I hurt the most, I count my blessings. There are many people in the world who are worse off and my complaining won't help. What I can change is my attitude and sometimes it's a struggle. Each day is a new chance to do my best.

Don't be afraid. What is fear? False Evidence Appearing Real = FEAR

We can be our own worst enemy. You're facing this and going to a doctor to see what's happening and that is a brave thing. You have it within yourself to face whatever comes and to handle it with strength you've never knew you possessed. You can do it. Believe in yourself.

Stay in touch and let us know how things work out for you. Keep stepping and don't look back.

Welcome to your new forum home.

[TCG]

I was diagnosed with Multiple Sclerosis in 1997 and for years I did not do much of anything because of the fear of how my MS would react to the activity. 3 years ago and after years of spending thousands of dollar I said to myself "there has got to be a better way" and I found it. I started walking, then I changed my diet, I started taking immune boosting supplements then I started bike riding. After a year of this I talked to my doctor and he took me off a very painful and expensive medication. This past February I joined a gym because I wanted to be able to exercise during the cold days when I couldn't go outside, after a few weeks I got a trainer and my condition has dramatically improved. I lift weights, I do cardio, I workout on the elliptical and treadmill. Yes there are days when everything hurts or I wake up in a fog but that doesn't stop me, it may slow me down but I do not stop. I am 59 years old, I also have Asthma and Lupus. Don't let the Fibromyalgia dictate your actions, work with your doctor and rest when needed but don't stop moving. I take turmeric when I feel a little pain from inflamation, it's a natural spice that works great and you can put it on your food. Look at the food that you eat, if you eat a lot of white flour, pasta, potatoes and white rice, they are big triggers to inflamation. Eat fresh fruit, vegetables, lean meats and fish. Also keep a log of when you hurt the most and see what cycle of the month it happens. Also look at how you sit or walk, if I sit too long it hurts when I get up, a bad chair can cause pain in your back and legs, if you sit at a desk all day and type on a computer, your shoulders, arms and back will hurt when you get up and walk around. Check your environment and see what triggers the pain. You look very young so don't let a diagnoses of Fibromyalgia make you old before your time. Enjoy your journey there are a lot of new things to learn.

[Odyssey13]

@TCG  Beautiful and inspiring story. Your words ring true.

Sometimes I think those of us with a diagnosis of a health challenge just need to be more determined and able to listen to our own body in order to keep on living.

Thanks for sharing.

[DivaDiba0212]

Thank you both so much for your guidance. I was hoping someone would reply. Your stories are so inspiring to me, and just reading about the two of you gives me hope that maybe life won't change as much as I think it will if I get diagnosed.

 @Odyssey13 you are right, my job is very demanding both mentally and physically, as I work with students (around 6th grade) who are severely disabled and wheel chair bound. I do all the lifting that they need and help them with the physical therapies they need on a daily basis. I am in college and getting married in March, so home life is constantly on the go as well. When I do have time to myself, I am always in pain. It is hard to explain to people why I keep shifting around in my chair at college because my body hurts so much I cannot get comfortable. I do wear a back brace at work for more support throughout the day, but I am drained by the time I get home. You are so right, and I really do need to work on having a more positive attitude on my current situation. I hope it is okay that I added both of you, and I promise to keep you updated on what happens this week.

@TCG Your story is so inspirational, thank you so much for sharing it with me. I too have asthma so I can understand your struggle with that. I will definitely have to try the turmeric! I am 23 years old, and I don't want this diagnosis to take over my life. I won't let it. I have learned from my family members how important it is to stay active, especially with fibromyalgia because even though it hurts at first, it will ease the pain when you are finished. Once again, thank you both so much for chatting with me.

- Tiffany 

[DivaDiba0212]

Just an update for my friends who were following this. I went to the doctor and I was indeed diagnosed with fibromyalgia. My doctor checked out the eighteen trigger points on my body ( you need to be "pain positive" on eleven of the eighteen to be diagnosed) and I had all eighteen. The weather has been rapidly changing here and it has been a hard time for me to keep up with staying active, but I am doing my best. Tonight we went on a nice little walk and it helped for a little while. One day at a time. Thank you again for your kind words. 

Tiffany 

[Odyssey13]

So was getting the positive diagnosis of fibromyalgia as bad as all your thoughts before you got the results? We can often be our own worst enemies, can't we?

One day at a time is right and often it's an hour at a time. The main thing is you know for certain what your enemy is - the FM. Try not to focus on the discomfort, but on getting healthier by staying active. You're looking at this head on and not running away. So many people hide from the truth when a doctor says they have something that they don't want to accept.

You don't have to always be brave. Sometimes you will give over to emotions and cry, rant or rave. Just don't let those hard times take over. A friend of mine used to allow herself five minutes a day, usually in the shower, to feel sorry for her medical condition. Once she stepped out of the shower, she  counted her blessings as she got dressed. She said it put things in perspective and helped her to face whatever waited on the other side of the door.

You have youth and determination in your favor. You have a wonderful, rich life ahead of you. Go live it to the best of your ability and know you have the inner strength to handle the bad with the good.

Never give up!

[NewDawn]

@DivaDiba0212 Fibromyalgia... got it... it is a challenge that I would not wish on anyone. I have been using a Flex since May and really improved... but... I remain way under the activity of the "norm"... all you can do is the best that you can and I would be more than happy to join you on your journey... slow and steady win my race and if you are working I expect that you are fried on your days off... I am sorry that this demon is with you but we can be active within our individual norm... gentle hugs

[NewDawn]

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@Odyssey13 wrote:

@DivaDiba0212  FM, as I call it, is an ugly beast that demands to be heard when it roars. I try to ignore it, but often the roar is too loud. I take no medication for it and no longer see the doctor.

When it hurts the most, I try to fight back. There are days when brushing my hair makes my arms ache and there are days when I feel as though I have boundless energy. Never knowing which day it will be keeps me on my toes. I've learned to listen to my body and know when to push and when to rest.

It's possible that feeling exhausted is due to the time of the month, which happens to us women. You may have a demanding job and a busy home life. Whatever your life throws at you, you're trying to juggle it all, aren't you? Problem with juggling is that if too many things get tossed into the air, it's easier to let one or two fall. You're only human and there are times you will need to rest and recover.

When I hurt the most, I count my blessings. There are many people in the world who are worse off and my complaining won't help. What I can change is my attitude and sometimes it's a struggle. Each day is a new chance to do my best.

Don't be afraid. What is fear? False Evidence Appearing Real = FEAR

We can be our own worst enemy. You're facing this and going to a doctor to see what's happening and that is a brave thing. You have it within yourself to face whatever comes and to handle it with strength you've never knew you possessed. You can do it. Believe in yourself.

Stay in touch and let us know how things work out for you. Keep stepping and don't look back.

Welcome to your new forum home.

---

---

@Odyssey13 wrote:

@DivaDiba0212  FM, as I call it, is an ugly beast that demands to be heard when it roars. I try to ignore it, but often the roar is too loud. I take no medication for it and no longer see the doctor.

When it hurts the most, I try to fight back. There are days when brushing my hair makes my arms ache and there are days when I feel as though I have boundless energy. Never knowing which day it will be keeps me on my toes. I've learned to listen to my body and know when to push and when to rest.

It's possible that feeling exhausted is due to the time of the month, which happens to us women. You may have a demanding job and a busy home life. Whatever your life throws at you, you're trying to juggle it all, aren't you? Problem with juggling is that if too many things get tossed into the air, it's easier to let one or two fall. You're only human and there are times you will need to rest and recover.

When I hurt the most, I count my blessings. There are many people in the world who are worse off and my complaining won't help. What I can change is my attitude and sometimes it's a struggle. Each day is a new chance to do my best.

Don't be afraid. What is fear? False Evidence Appearing Real = FEAR

We can be our own worst enemy. You're facing this and going to a doctor to see what's happening and that is a brave thing. You have it within yourself to face whatever comes and to handle it with strength you've never knew you possessed. You can do it. Believe in yourself.

Stay in touch and let us know how things work out for you. Keep stepping and don't look back.

Welcome to your new forum home.

---

Well said! I think we met due to our Fibromyalgia... one day at a time one hour one minute one second is all we can do... and .... not overdo it... stress is my biggest demon...

 

[DivaDiba0212]

Hello to you both. Odyssey, the positive diagnosis, although I was anticipating it, disappointed me as well as relieved me. I am relieved that I can finally have a name to all of this insanity that has been running my life. I now have a name for the constant pain I am in. However, I most of all am disappointed and upset. I have cried a few times already. I have watched my Mom go through this my whole life and I know what I am up against. At one point this past week, I woke up in the night with so much pain I was in tears. I am twenty three and never imagined this is what my life would be like. I love what you said about your friend, and how she gives herself some time each day to process then move on. That is something I am going to try.

NewDawn, I would love to share in my journey with you also and thank you so much for your kind words. I know exactly how you feel about not meeting the norm! Every day at the end of the day, I feel so good about myself hitting a new record of my own, but it is never the norm they specify here. If there is a day I can do that, I will be one happy person. I really am exhausted when I have time off but I try my best to stay active. I am getting married in March, and I want to look my best. Gentle hugs to you too. Thank you both so much

Tiffany

[Odyssey13]

@DivaDiba0212  Your knowing now is better than not knowing the reason for the pain and letting the imagination run wild. It's normal to be upset and there are times I give in and cry, too.

@NewDawnhad some good advice. Stress is a demon. We must try not to allow it to take over and cause us more discomfort.

I wish there was a cure for it and it hurts to know so many others are out there without any support or guidance. Together we're stronger than we were when we were alone.

Your doctor suggest you take anything for this? I don't take anything but vitamins and some days are much better than others.

[DivaDiba0212]

@Odyssey13 My doctor is sending me to see a rheumatologist for further counseling on medication to put me on, but they did say that they wanted me to go onto something. They had wanted to put me on Cymbalta but it conflicts with other medications that I am on for seizures. I will find out which path I will be taking meds wise when I go see the rheumatologist soon. I will do almost anything to find some relief. I could be laying on five pillows at night and still be awake with pain. 

I love the fitbit sleep tracking. It has really validated for me that I am not just dreaming that I am awake, but that I actually am. For instance, last weekend on one night I spent eleven hours in bed total, but slept only six of those hours. I told my fiance, it is no wonder I am always so tired. I've had my fitbit for almost three weeks now, and my highest sleep time so far was eight hours, just once,  and I felt so rested. 

Thanks for posting. 

Tiffany

[Heybales]

I've had friends with it that had I thought a good healthy perspective on it. Some reflected in positive comments above.

On some days, while pain was there, it was also at a level they knew that exercise was not going to make it much worse, and they mentally knew the benefit of exercise would out-weigh, even slightly, the possible extra pain gained. Might be benefit the next day or longer out, but that is more experiment to find your level.

So to that point, just don't let pain be an automatic disqualifier of exercise. Journal notes and experimenting in order.

Remove as many other stresses from the body. You hit on sleep already, lack of - good find. May also have some food sensitivities, but not to the level of allergies that stand out obviously. So they could be slight stress on body, but you want as little as possible. Again, journal notes looking at prior day's eating anything different or combo of things. Sometimes it was the interaction of foods combined that caused problems, not one food by itself.

Some exercise might be less stressful as far as pain, but perhaps not as enjoyable, but just as beneficial. Be willing to experiment with stuff you don't know, just to see. Whipping out some body weight exercises during a brief moment when you actually feel good could be very useful.

Sorry to hear about diagnosis, but I think for most the unknown is more stressful than having something known and you can learn about now.

[LilMac]

My Story:

I was diagnosed with fibromyalgia just over 7 years ago (I was in my early 20s). I tested positive for all 18 trigger points and still have the constant battle today. When initially diagnosed I was instructed to give up almost everything I enjoyed (i.e., dancing, soccer, hockey, running, most things active). I refused. There was no way I was going to be forced out by my body doing its own thing. I'm in control. I had a lot of rough patches. Eventually, I learned the importance of listening to my body versus push through it and ignore. Giving my body time to rest and not overwork has made a big difference in my struggle. 

Helpful Suggestions:

I find that, even on my worst of days, heat is my best friend. I invested in a low resonating heating pad which is designed to stay on throughout the night helps me feel better in the morning. It's all about sticking with it and something that I continue to learn throughout everything in life is to keep moving forward. The old saying, when life hands you lemons, make lemonade! 

Here's to moving forward!

~Lil' Mac

[DivaDiba0212]

Thank you all so much for your feedback! As I am adjusting during this time, your words of experience is guiding me and giving me hope that life isn't over because of my diagnosis. 

@Heybales I will definitely have to start journaling, that is a good idea I had not thought of yet. As far as stress goes, I really do try to eliminate as much as I can but that is hard right now because I have so much going on right now. I am getting married in March, working full time, and going to school full time as well. The little time I do have at home I am usually either trying to sleep, doing homework, or getting exercise in. It is hard to find time for me. The pain is a constant that I feel I can't do much about other than the exercise I am doing already. I think I will try to break it up into ten minute increments throughout the day, maybe that would help. 

@LilMac - thank you so much for sharing your story with us! I too was diagnosed with all 18 trigger points and I am 23 years old. The main thing I have cried over has been feeling out of control in my own body. How do you get that feeling of control back? I can't stand that. Every day is a rough patch for me lately, and my doctor is waiting to put me on meds to help until I see a specialist in a few months. I feel bad because I don't think it is fair to my fiance that he is constantly having to hear me say "this hurts today." I wonder where did you find the heating pad you bought and how much it was? That does sound like something I would benefit from. 

Thanks in advance for commenting back! 

Tiffany 

[NewDawn]

@DivaDiba0212 how did you make out at the doctor? You are in my prayers. Hoping that relief is found soon for you. Sending you love gentle hugs smile dawn

[kellyboud73]

Hi, I love this reply. I have Fibromyalgia also. I am 41 yrs old and was diagnosed in my late 20's. I was depressed for awhile and was put on alot of medication. For me the medication made me feel worse and I gained a ton of weight which didnt help also. I ended up stopping all the medication and just take motrin 3 times a day now. I am still about 70 lbs overweight. For me I just try to fight it also. Walking really helps even though some days I dont want to do it. There are some days I really cant but I try my best. Just dont let it get you down. Now that the winter is here I will be using a walk at home video. I have been using the Fitbit since April and I love it. It is really good motivation. I just today started looking at the forums and I dont know why I didnt do it sooner, such good information and people :). I would love some new friends if anyone would like to friend me and am interested in doing some challenges to keep motivated. I am currently doing the monthly and the weekly ones. Best wishes 🙂

[MeikeD]

Hi, My mom has had fibromyalgia for years. (She does not have a fitbit, but I do.) What she does is: goes to the gym at least twice a week; she and I take short strolls daily around the neighborhood (when the weather is nice for 20-30 minutes; now that it's winter, about 10-20 minutes) at a slow pace; and she uses a heating pad every night. She does have medicine for the fibromyalgia but she tries to stay as active as possible. Yes, there are some days when she cannot go to the gym or take a walk due to the pain but she has found these days are few and far between since I got the fitbit and have taken her for walks and to the gym. My advice to you is to take each day one at a time and don't fret if you don't make your daily goal. Listen to your body and if you are in horrible pain, don't force yourself to walk/exercise.

[Odyssey13]

@DivaDiba0212  How are things?

2015 is your year. Just hold on and take it one step at a time.

[DivaDiba0212]

Hi Odyssey13, 

Things have been off to a crazy start this year. My wedding is fast approaching and there is so much to do! Every day is different - my flare ups have been pretty consistent lately as the weather here has been rapidly changing going from rainy to cold to hot to cold to rainy and so on. I have been trying to stay as active as possible, as I know how important it is to help in the flare up times. I am still without medication that I need due to the insurance arguing with my doctor. In the meantime I am anxiously waiting, hoping I can get control over my life back. I will not let FM run my life. How are things for you? I hope this note finds you well. 

Tiffany