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Ladybug914 posted:
After months of going through pain, sensitivity, numbness and so many other things, I get a diagnosis, Fibromyalgia. Fantastic, I look perfectly fine yet I can't be touched, have problems walking, and can't even complete a simple household chore. Some days I wake up crying and don't even get out of bed. How do you go about getting a job if your not sure that you can get out of bed in the morning? How do you explain to your family what this does to you? I feel like I am being judged when I am not looking. I have always been the person that would get up in the morning and look in the mirror, smile and say good morning to myself. Lately, I can't look at myself and most mornings, really not good. I think I'm angry at this point, maybe sad and disappointed in myself as I cannot push this pain and fatigue back. It's overwhelming. Am I over reacting?
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dollbug responded:
Hello Ladybug and welcome....MiMi in NC...sorry that you are dealing with so much right now. No, you are NOT over reacting...I think we have all been there done that. It does take time and effort to learn to *accept* the wrath of the dragon and its invasion into our lives. Things will get better for you. The worst thing you can do to yourself though is to stay in bed. Get up and move...no matter how you feel. Sure, you will probably move slow to begin with on most days...but that is ok. Move your muscles no matter how slow you go. Do some gentle stretches and/or some exercises...(gentle being the key word here). Learn how to pace, pace and pace even more. Your body and your mind will thank you

I would also encourage you to ask your doctor to check your Vitamin D level which is important to a lot of people these days. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well.

As for explaining your condition to your family and friends...they are NOT going to understand anyway. Those who do not walk in our shoes have no clue how we feel and what the mean and ugly illness does to us. Because we do NOT look sick, for the most part, no one thinks it can be as bad as it is. But I think we all know how we feel...some days we feel like we have been hit by a mac truck. Other days is might be even worse.

Don't be angry at yourself or anyone else...that will NOT help you at all. Try to have a positive attitude. Remember that this too will pass, no matter how you feel today...learn how to *dance with the dragon, instead of draggin the dragon, as Nana B. says. She is one of our oldie goldie members and she is a nurse and still works. She is a smart lady and has lots of good info to share with everyone.

Things will get better...as the more you know and learn about what others do that has helped them...you will find what you need in your own *toolbox* which will make a difference for you. It is a trial and error process...as you will find what works for one person may or may not work for you. You have to try different *tools* and figure out yourself what helps you cope better. You will find all kinds of good *tools* to try here.

A heating pad is my best friend. Taking a hot shower at night using lavender bath salts in a stopped up drain helps my body to relax so that I can sleep better. Sleep is really important for all of us FMers. Eating right and drinking plenty of water is also important for most of us. Water is so good for our body...the more the better.

Anything and everything is a process...but things will get better for you.

I am one of the FMers here who has learned how to *control my FM pain by taking vitamins and supplements and doing other things as well. I have found that Fibro Response and Magnesium Malate help me, along with Omegas and a good multi vitamin. I also take P5P which is a processed form of Vitamin B 6. Some people take s Super B Complex, which might work for you as well. I also take a B 12.

As for the fatigue...I wish I could tell you what might help with it...but I have NOT found anything yet. Some days are better than other days but I do NOT know why. The doctor tells me that there is nothing that helps the chronic fatigue that I have. But I am still searching for the *tool* that will change this.

Hang out here with us for a while and learn all you can about what and how other FMers cope. With time you will feel a difference. There are no quick fixes or magic pill cures for dealing with the wrath of the dragon, aka FM.

Take care and please remember that we all understand what you are faces each day.



MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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Ladybug914 replied to dollbug's response:
Good Morning Mimi,
Thank you for your response. Your words help me to realize that I will have go to "tools" yo help me through the rough days. I am looking into whether or not I have vitamin deficiency, and looking into support like this one to get info and ideas from those that have been dealing with this dragon. I know that one thing that really helps me is music. For me it is a focal point that takes me away from the pain. I wish it made a difference when I do house work! House work is a whole other nightmare! If I do housework I pay for it for the next few days. Thanks again, This has amde my day.
 
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booch007 responded:
Good morning Ladybug...

How cute is that name you chose. We just had one yesterday and I put it in my grandaughters hand...everything was fine until it moved and then she screamed!

The good news here : YOU WILL NEVER BE AS OUT OF TUNE AS YOU ARE NOW! The future is open to you. Get knowledgable and eat well, hydrate and care for this body.

For me, this was the hardest thing to deal with. I fought it forever. Saying I will not take off my boxing gloves to find a fix, or a cure..that i will not be like this the rest of my life....
I am better, so much better with the right meds, therapy and hydration/nutrition....so, this is where fighting the dragon and dancing with him came to be....

I know when I wake he is there....I begin stretches IN the bed before I get out. (The muscles are warm and tight and need to be asked to open up...) then to meds and coffee and here...then to the hot shower for more stretch and massage with the bar of soap....and I can then start the day.

Working towards a window of wellness for yourself is the goal. I don't know anyone who gets the full day (even with pacing)
Muscles are tired easily so you can ask just so much.

First thing is diagnosis and right fit with MD then next step is the medication choices for the tune up (this can take a while) both you and the MD can struggle...then it is looking at the day and what are the triggers in it that hurt you. STOPPING THEM or changing the way you do them is the key here.....
As I stated yesterday, I changed just about everything that I had as a trigger so I can survive in this.

Corelle dishes were a biggy..they don't break and they are so light to handle. A front loader washer for the pulling of wash... B I G pain that was. And many more things that were identified and adjusted if I wanted to keep them. I am an independant person and hate asking for help, even to now.....

That push and refusal to give one more inch of me to this mess I think is how I am doing so well with fighting this. After >10years of trigger point therapy and 18 yrs of problems...I have a good 8-10 hour of wellness and work full time. He is always with me and I watch every muscle during the day to be sure I alternate the use...but I get a life.

With a flare I give it 2 days of rest and then OUT and UP (myhead) I get depressed if I lay around and laying around is the worst for increasing the pain and stiffness. I use massage frequently 1-2 a week if needed.

Look to the right in the resources section and look for the MEMBERS TOOLBOX....it is full of ideas and help from all the members. So much information here on this page to get you started to be better. .

YOU CAN DO IT.......and we are here...24/7 never closed!! Where can you find people 24/7 who understand and walk your path....nowhere I know*....

Good luck, glad you found us.

Nancy B
 
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DublinGirl replied to booch007's response:
Hi Ladybug, I can only echo the sentiments of Mimi and Nancy, it's true, the worst you'll feel is at the beginning when it's all so hard and new and it's hard to see the light at the end of the tunnel. But you will find a way to cope and it will get easier to manage.

One of the best things is being part of this group, there are so many people with great advice and support who know what you're going through.

Be strong, this is a fighters illness, don't let it pull you down. You sound like a strong and positive person, don't let go of that, it will be your main-stay.

Use all the resources you can get your hands on, including a great letter that's linked to on this site explaining the illness to family and friends. It was great for my family and gave them an insight into what I was going through.

The best and hardest piece of advice I got was from a physio who told me to exercise through the pain, and that may sound hard and at times it is, but we're not talking high impact, try and walk or swim or do some light exercise every day. Pilates and yoga are great.

Mind yourself, and keep positive, keep looking in that mirror and tell yourself you're strong and wonderful and you'll find the strength to get on with your life and your FM

Hugs,
Rachael
 
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TurtleRunnerNC responded:
Hi Ladybug,
I am newly diagnosed and understand what you are experiencing. I work full time and have 2 busy kids. It's been a struggle.

There is hope. Like everyone else said you have to get up and move. I know it doesn't make sense and it is hard and painful. But it helps. It helps the pain and your brain. Start small and work up. Just a little walk and gradually increase.

Talk to your doctor about meds. Mine gave me Trazodone for sleep and it has helped a lot. I actually had to cut my dose in half. I also started Savella. It has given me some nausea but my pain is improving and I'm feeling better.

Now if I could just learn to not overdo it when I feel good ( like yesterday) because today I feel like hell. But that is how it is with Fibro. Live and learn.

Turtle
 
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bette_kaffitz responded:
Ladybug,

Please find a doctor you can work with. The specialty does not matter as much as the willingness to work with you and try different meds and explore some other ways to help you live your life with a little less pain, a little less fatigue, and a lot more hope.

It's been 41 years since my late-pregnancy backache didn't go away. I won't lie to you, there have been some pretty bad days. But there have been some wonderful days too. Every day you (ever so slowly and gently) get out of bed is a victory. Every time you find a way to relax your muscles through exercise, heat, or any other means is a step towards helping you manage this disease.

Your compassionate doctor should be able to help you with some medications that will take the bite off your pain. Be patient. Some times the first med you try doesn't work for you. But then the sixth one will. Or perhaps it's a combination of meds one and four. Be willing to try. Somewhere out there is something that will help just enough to make life better.

As you probably know, there is no known cause for fibro. The changes it makes in how our brains regulate pain are just beginning to be studied. Amazing studies are underway that have the potential to help all of us. But they are in their infancy. Until they can bring us better treatments and perhaps a cure, we have to work together here, and you have to work alone at home to find ways to make each day better.

Your job today is to find your way to a better day tomorrow. Then you can share your discoveries with others here. That's how it works--one day at a time, one patient at a time, one idea at a time.

Bette
 
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booch007 responded:
Oh and Ladybug.

When you meet the right doc and get things in line. Bring your significant other with you to see the exam, hear the doctor explain and get them in the loop for real. For you to share or teach is not like the doctor validating you.

The minute my DH saw my trigger point injections and how many spots were in trouble...he was floored. He then became my advocate for the family and TOLD them of my problems and how well I deal with them. The posture of the whole family changed after that.

So many years of my teenage son's making fun of me (many a tear session in the shower) but I myself didn't know what was happening to me.

So it got better and better as time moved on. I learned me, my triggers what to do about them and take the right meds for the issues at hand.

First part is the doc......then it all falls into line when the trial and error of meds is done. Good luck, you can so do this.....

We are always here. Come here and drop your burden not in the house for the family...they are not interested right now. They can't see the box you are in, we can.
You have a dragon following you eachday and he bites bad...you need to get him trained a bit and we can help with your MD.

Good luck, Nancy B
 
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Ladybug914 replied to booch007's response:
Nancy,
Thank you for the words of encouragement. When my doc checked trigger points, he was floored as well. He said he needed 11 to 18 for diagnosis but found well over that amount. I appreciate that I have a place to go and vent! I am also creating a journal; to release my feelings, it has made a difference. This dragon will learn not to bit so hard daily!

Ladybug


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