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Not Handling this fibro well
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HappyPatty72 posted:
I just had the most awful year! Left a crumbling marriage ,had several hospitalizations, just moved a few towns over. I'm currently in so much pain I want to cry. between the pain and the depression and the lack of understanding I am totally overwhelmed. I am feeling VERY SORRY for myself too. My husband left me financially crippled. I have several therapists but it's not really helping. I single handedly supported my family of 4 since 2007,working 60 hours work weeks while getting screamed at by my husband for being tired.(while he didn't work).
anyone have some words of wisdom here? I'm barely hanging on. I have very little joy in my life.
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jillylin responded:
Hi,
firstly, gentle hugs. You sure are having some bad stuff thrown into your life right now. Not sure I have any words of advice beyond telling you to remember it is OK to feel like you do and also to try and be as gentle on yourself as you can be, under the circumstances. Do you have children old enough to help you with chores and stuff? Wish I had words that would help you.
Hugs
Jilly in the UK
 
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HappyPatty72 replied to jillylin's response:
Thank you for your kind words. I remember to be gentle with everyone EXCEPT MYSELF. some good things are happening ,though! My friend introduced me to her horse whom I consider my new therapist My son who is 24 has been a big help ,especially moving into new house. I live out in the country now which I find soothing.
I'm considering putting easy open caps on everything I own
My hands hurt the worst some days. How are you coping?

Hugs back to you!
Patty
 
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jillylin replied to HappyPatty72's response:
Hi Patty,
Sometimes we need to remember to put ourselves first instead of last,
It is great your son is helping and that your new move is adding to some sense of calm for you . Animals can often provide us with support because they are totally non judgemental.

Easy open things are good. I have had all my faucets adapted,use gagets to open jars, cans and bottles, etc. It's just medicine containers that get me .
Not doing great here. Depression is worse, I lost my mom two months ago and think a flare is erupting. Still, it could be worse.
 
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BetteK responded:
Patty,

The dirty little secret about fibromyalgia (one that you very seldom see in print) is that the number one cause of death for those of us with FM is suicide.

Do not let this disease win. Do not let your loser ex win. Do not let depression win.

The woman who supported her family for 5 years working 60 hour weeks is a fighter and a winner. If she could do all of that while she had this denegrating chain around her neck, she can do it again--and much more easily without him weighing her down.

You are a strong woman. You just need a little help, a little reassurance. We want to give you that help, that reassurance. Let us.

Check our "helpful tips" (in orange towards the bottom right). Try some pampering with a bubble bath while you listen to the music that soothes your soul. Try to remember the last thing that you did that made you feel lighter than air, then do that thing again.

(I get my hair done or buy a pair of the kind of shoes I can only wear for a few hour at a time--but what glorious hours. Sometimes I check out an old favorite from the library and indulge in an orgy of reading while my family fixes their own dinner plates for the microwave.)
 
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rosielou replied to BetteK's response:
Hi Bette,

I'm kind of surprised that our number one cause of death is suicide, don't remember seeing that before. But "Remembering" isn't my strong suit these days LOL!

So anyway, can you please give me the source for that? That's something that my support group might want to have as a topic. Thanks for your help.

RL
 
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BetteK replied to rosielou's response:
RosieLou, I read that a LONG time ago. It was 1990, and the American College of Rheumatology had just come up with the name "Fibromyalgia" and the criteria. It was also the year I finally got my diagnosis. Being a premed, biology, and chemistry type of person, I devoured the scanty literature.

I really do not remember what journal this was in. I think it was written by that Robert Bennett who does the Oregon "myalgia" website. It could have been Modolfsky--the irritable bowel guy. I know it was ONE of that group of 10 or so rheumys who got together and declared us a syndrome.

These were the same people who proclamed the magic of Prozac and Amitryptaline as a wonderful combination for FM.
I read the whole paper--not just the abstract. These doctors were shouting "Eureka!" for a treatment that improved pain levels--on subjects who were able to tolerate the treatment (and WE all know how many THEY were) for several months--by ALL OF 16 %! That's right, there was a SIXTEEN PER CENT DECREASE IN PAIN LEVELS! Well, whoop de do!

At that time, reading the abstracts only--the abstracts that touted "signifigant" improvement in pain scores--I expected the improvement to be about 50%. Wouldn't you? That the most respected rheumys in the world felt a 16% reduction in pain was a great stride gives you an idea of where the science of fibro was in 1990.

Is it any wonder that, at least at that time, suicide was considered the best choice for pain relief among fibro sufferers?

Luckily, we know a lot more now. Nowhere near enough, but more. And I heard some wonderful news today. Read my next post for more.

BetteK
 
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rosielou replied to BetteK's response:
So let me see if I understand this. In the year that the word fibromyalgia was created, there was already a study of deaths of people who could not have been diagnosed with fibromyalgia?

Hmm, interesting.
 
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dollbug replied to rosielou's response:
Hello....just wanted to comment here and say that there is more on the subject of FM and suicide if you google it. I think chronic pain caused by most anything affects people....I know that when my DH was fighting cancer, the doctor said that him doing so well was due to his mind over the matter at hand. Having a positive attitude is so very important and I also think having good support from people who truly understand can make a difference in how we FMers cope.

Pain and suffering is a vicious cycle....it is hard, very hard to deal with....no matter what is the cause. We have to remember that *this too will pass with time*....it is kind of like having surgery....the recovery is hard on our minds and bodies as well....but with time and effort we do recover....Our minds and bodies are very strange anyway.

My dear aunt told me many years ago that the older she got the more confused she became about things to do with her body. Yes....I can now know just exactly what she was saying. Our bodies and minds can do strange things sometimes....and so many times it is things we do not understand or know how to manage what is going on with us. We have to allow time though to get pass the rough periods....which hopefully will be short spans to deal with.

Learning how to pace, pace and pace even more is important for me. I try not to panic and I try not to allow myself to get stressed, if I can control this. I think we all know that sometimes we do not have the *control of some things* anyway, no matter what we do. We have to deal with it anyway. Keeping a positive attitude is important regardless of what we are faced with.

Hopefully we all will have more good days than not too good days.


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

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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rudyandirmouse responded:
Hello happyPatty72. Linda R here and I've never replied to your posts before. I'm so sorry you have had so much unhappiness, medical and financial issues to deal with.

People, husbands, children, doctors, etc. can be mean and non supportive to those of us with medical conditions ( fibro ). The old adage of You'll never know unless you lived it.. is really true. If they don't walk in our shoes they'll never feel the pain of our bunyons. How can they. Knowing that you tend let the dumb things people say and do go. You can't explain Fibro to anyone. It's like trying to explaine the color red to a blind person. They'll never understand so why die trying to get them to.

And Life can be a beach sometimes. My aunt used to tell me when I'd be down, hurting and complaining, she'd say " WHO ever told you life would be easy? " Every time I start to think my life is just not worth going on with I think of her and just let the saddness go.

I make my life what it is. It can be either good or bad, it's the outlook from me that gets me thru a bad day, week or even months. And as for support and understanding I have had many firends over the year who don't get what I'm going thru and when they start to complain that I don't do this or that, or can't do this or that, when they get negitive I know it's time to move on from them. I put them in my rear view mirror and move on.

Having negitive people in my life only hinders me. In the end only I have to answer to a higher power about how I lived my life.. what others say or do is on them, knowing that I move along with my life, doing it my way.

Sounds like you've moved on too and are doing things your way now. And you have gotten your hurfult, negitive people out of your life, YOUR BETTER FOR IT. Now you can turn your eyes back to you and what you need. When you find that happy place you'll be able to make your days so much better.

I hope to see your posts here often..When you are having a hard day please drop by and visit with us, we are here to support you, listen and hopefully post back to you some words of encourgement.

Gentle hugs,Linda R
 
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HappyPatty72 replied to BetteK's response:
thank you for your kind words Bette K. I will keep them with me in the darker moments!

Yes! Here's to pretty shoes.
I also found a new doctor who put me on some new meds for foot pain,made a big difference in the fibro as well.

Life is getting better. slowly,slowly, but BETTER.
 
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HappyPatty72 replied to rudyandirmouse's response:
Thank you Linda R. what a nice lady. I am so glad i found support here. It means everything to me. I am also learning to put negative people firmly in my rear view mirror. Thats where they belong,and thats where they'll stay.
My life is getting better. I'm making some real changes. It's kind of a " EVERYTHING MUST GO SALE"!!! everything i thought i really needed is out the door. yes,sometimes SWEEPING CHANGES ARE NECESSARY. And this from me of all people...i usually fight change tooth and nail--even if it's GOOD CHANGE. Chalking that up to my PTSD. Gentle hugs to you,my new friend. Nice to meet you.
 
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Debrichard replied to jillylin's response:
Hi jillylin
Just thought I would share a little know secret with you as far as medicine bottles. Most of them have threads on the top of the covers so you can turn the cover upside down and screw them on to the bottles hope this helps some of you.
have a great day


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