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Fibromyalgia
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Posted 6/11/2010 5:10 AM (GMT 0)
So, hello everyone.

I guess I should start by introducing myself and briefly explain what brought me here, right? Let's see - I've got some other things going on mentally, but nothing really physical. about a year and a half ago I was rear-ended in a car crash and had three cracked vertebrae. Since then I've had crazy awful back pain which radiates out through my body. It's terrible. I thought that it was because of the accident and residuals from my mental stuff, but finally after a couple of shouting matches with my s/o i went ahead and started doctor roulette.

A couple of MRI's, some x-rays and bloodwork later, we're going to start treatment for FM.

Here's where I'm at, and I'm going to be as honest as possible because everyone here seems supportive, the information is awesome, and I doubt that anyone posting here fits into it. Plus, I feel it's important to start off honestly. Yea, it's the interwebz and y'all don't know me from adam, but what can I say? I'm a stickler for these things.

The people in my past that I've known who had FM were just ... not very good people. It was like they shopped around for excuses to start the SSD claim and were victims as opposed to people living with and coping. I admit - I also didn't research it because what I heard was very negative and I believed it - that FM's not a "real" disease, that only "lazy people" claim to have it, blah blah blah.

Lo and behold, I wind up with this diagnosis, and I am taken aback. I now have to re-consider everything that I know about FM. So I start researching and reading. The Fibro 101 thread you guys have is great - the spoon theory article really helped put some things in perspective. I feel like that every day. I wake up and realize I've slept for two hours and now, I have to stand up, take a shower, find clothes, do housework, drive to work, go to work, work, etc - and it's overwhelming some days. I hurt ALL the time, everywhere - and nothing seems to help. Hydro sorta helps me get through work by reducing my pain to a distraction. I do have good days where it's like a nagging headache, or a pulled muscle - but those are so far apart that it's frustrating.

I guess the questions part is now:

How do you guys deal? I mean, how do you negotiate with yourself that it's okay to not vacuum today and not beat yourself up? How do you explain to your friends that you love hanging around them but it's just an exhausting concept today? How do you tell your s/o that you want nothing more than to watch a movie but the thought of going to the theater, standing in line and then sitting in an uncomfortable chair is almost an insurmountable feat? How do you appreciate the good days instead of berating yourself because you didn't feel like this last week? I know it comes with time, and I know that it gets easier and I need to take it day by day, but I'm.. well.. I'm scared. I'm 27 years old. I've taken care of myself and am absolutely terrified that it wasn't enough. I used to run five miles a day and now I celebrate if I can sit at work for eight hours in a row. I hear my bones grinding when I take the stairs up one floor and honestly have started using the elevator more and more often. Instead of parking out in the back row, I cruise looking for a close spot because walking through the store is exhausting.

I don't want to lose to this - not this, not after everything else.

Whew. Sorry for the wall of text - as you'll learn (hopefully), I'm just not one for brevity.
Posted 6/11/2010 2:57 PM (GMT 0)
Hi and welcome to the boards. Just wanted you to know that when I worked I would get home and could do absolutely nothing. My house was a disaster and my kids were no help at all. I ended up leaving work because of the fact that working, taking care of my husband who has Multiple Sclerosis, and maintaining a healthy environment for him was impossible. I have finally gotten my house back to the point where it is livable for him and me. Sometimes we have to prioritize things in our life as to what matters the most. For me it was the health of my husband and that is why I am no longer working outside the home. My youngest son said to me the other day mom you might not be working outside the home anymore but you still work. It made me feel good that he was noticing.
Shirley
Posted 6/11/2010 3:24 PM (GMT 0)
Hi dorkasaaurusrex, welcome to our fibro family! You will meet lots of people who do
understand the ups and downs of living with fibro. The people here are friendly and caring.

Your question...How do you deal?"...one day at a time. When I first got my dx's, I went
through a grieving process, I was upset and angry. Finding out you have a chronic illness
that may never go away is upsetting. Eventually I accepted this fact and it became easier.
I was not happy and couldn't see myself living the remainder of my life sad. I decided I
had to do what I could do to make my life the best possible.

Learning to pace myself was difficult at first, it still is at times. Learning what is really
important...so maybe my house isn't as clean as it used to be...I do what I can and try not
to worry about what I can't. Learning to ask for help was a biggie...I was always
"superwoman" felt like I could do it all...now I ask hubby for help. He does my vacuuming
and does help around the house. My friends know I can't go galavanting all day shopping.
They ask if I need a break. Don't give up invitations to do things...explain fibro to friends
and family. There are activities I can no longer do...golf and tennis, but i can still walk and
enjoy that. I can still garden, paint, write poetry, read and alot of other things.
Surround yourself with people who care for you and are willing to learn about fibro.
Living with fibro is easier when you have support from family and friends.

Last but not least, know you can still have a wonderful life with fibro... the secret is
accepting and believing it! I'm not trying to sugar coat fibro, no doubt pain and fatigue
can be part of your day but as time goes on it does become easier to cope.

I'm glad you have joined our family. We are always here to help because we care!

hugs, Robin
Posted 6/11/2010 3:55 PM (GMT 0)
Hi, and welcome to the forum!  I'm so glad you found us and joined the family.  I'm also glad you have been reading Fibro 101.  Have you read,  "Doctors Respond to New York Times Article", yet?  It's good and it helps to explain that this really is an illness!  You could print copies of that out and pass it out to friends and your s/o.  Let them know you care/love them a lot but some times you won't have the energy or you are in a flare and can't do what you used to do.  This will help them to try to understand the illness.  No one REALLY understands this unless they have it themselves.

 

I have found some supplements that have really helped me with pain and fatigue.  They are malic acid/magnesium supplements and vitamin D3 supplements.  These really have made a big difference in my pain and fatigue.  There are links about these in Fibro 101 and how these vitamins and nutrients work in your body.  I did ask my doctor about the malic acid/magnesium and he said it wouldn't hurt me but he didn't think it would help me.  I tried them and he was wrong!  smilewinkgrin    So you might talk to your doctor or pharmacist about this.  These gave me more mobility.  This was wonderful because the more you move, it helps with the pain....gentle movements, that is. 

 

I also am taking CoQ10.  It's an enzyme that is found in nearly all the cells in the body.  I started taking it because I was on a statin medication but have since found out it is a benefit in many ways.  Since I've been on it, I seem to be sleeping better and even having a few dreams now.  I NEVER had dreams before because I couldn't get in th REM sleep.  I'm not sure if the CoQ10 did this but I'm not stopping it. 

 

You do need to keep moving.  Even though you think you can't, you really can as long as it's gentle movement.  There are some good stretching exercises on Fibro 101 that are useful.  My gentle exercise is walking and I swim.  Both are excellent forms of exercise and should help with the pain.  This helps keep you more flexible because if you sit or lay too much, you will be stiff as a board.

 

Hot showers help a lot along with a Bed Buddy.  You can find these at Walgreen's and other places or you can make your own by taking a tube sock, filling it 2/3's full of raw long grain rice and tying a knot at the end.  Pop it in the microwave and it gives off moist heat due to the moisture in the rice. 

 

Don't hesitate to ask questions.  It must have been a real eye-opener to find out this "all in your head" illness is really real!  BUT, you can have a full and enjoyable life in spite of it.  I  know I have.  I am in control and not the illness.  I find ways of working around fibro to do the things I want to do.  You should be able to do this too.  Keep trying things until you see what works for you to get in control of the pain.  You won't be pain-free.  I've had fibro for decades and have had pain every day but I'm in control of it now.  I truly feel the exercise and supplements were the biggest help for me.  I also take ibuprofen with food and extra strength Tylenol, too. 

 

I'm happy you are here and I hope to hear more from you soon!

 

Sherrnine

Posted 6/11/2010 4:13 PM (GMT 0)
Karma gets us all in the end doesn't it?
I don't like football or Trucks, and I recently had to move to Texas.

I deal with things by doing as much as I can when I do feel good.
Posted 6/11/2010 5:22 PM (GMT 0)
=) Thanks guys, for your welcome. I'm glad you made it through the post. I realized when I re-read it after I posted that it might seem snarky, but I decided against changing it because, well, you guys need to know where I came from, I suppose.

I appreciate the advice, especially about the supplements, the heating pads/bed buddy thing, and the re-occurring message of "One day at a time, as much as you can when you can" and I think that's what I'm having issues with. I love that I'm not the only one who's had these feelings of anger and frustration upon being diagnosed. I know for many it's a sigh of relief, of "Finally! Now, let's get better!" after years of frustrations building and misdiagnoses and I geninunely hope that those people find relief and help. I can't imagine having that struggle for decades - and I thank you for going through that so it's a little easier for people like me just coming into it.

Whew. Thanks again guys, and @ White - oh yea, Karma totally bit my butt, big time.
Posted 6/11/2010 6:50 PM (GMT 0)
Hi, 10 years ago my GP doc mentioned fibro and I thought it was just a catch-all for when they really didn't know.  Boy was I wrong, many tests and doctors later I have a formal diagnosis.....fibro. 

There are worse things to deal with is the way I look at it.  And I do not vaccum everyday unless the dog is really shedding tongue

Welcome to the group

Posted 6/11/2010 7:25 PM (GMT 0)
Hi there,

I too would like to welcome you to the forum. You are going to hear a lot of "one day at a time". It keeps us grounded and centered. Especially with fibro. I found that it actually did me good to have to take life one day at a time. I constantly worried about the future. All this did was deplete my energy. Plus it keeps you from dwelling on the past.

In time you will find what works for you. But do try to keep moving. And don't beat yourself up if you have to spend a day in bed. A lot of us do, and that only defeats the purpose.

Keep asking questions and keep reading. I am glad that you have already checked out fibro101. It is a wonderful and helpful thread.

Take care my friend, and again, WELCOME!

Hugs, Karen
Posted 6/11/2010 7:47 PM (GMT 0)
Sweetie, there's no such thing as accusing Karma for all the pain you're going through. :-P I don't want to do disability but week by week lately I'm coming to the thought that I may just have too. I'm only 29. I had my Crohns dx at 27. Then at 28 I got the fibro dx when the pain never went away and spread throughout me after the surgery that gave me the Crohns dx.

My husband's a wonderful guy. Its the only thing I can say about a guy who comes home to a mess of a house and proceeds to clean after working a 12 hour shift without saying a word to me. I still get up and work about 8-12 hours a week. But sadly sometimes, like lately, my body is hurting me a lot. I come here and I read about others problems or I consider the information I read here. And when you're having an awful day...type it out if you can here and they listen if nothing else. Someone reads and you know you're not alone dealing with this disease.

Also, a great advice from someone here, who I can't recall. Call around to each local hospital. One will have a monthly meeting for people with fibro or with chronic illnesses. I have a coworker who I chat with about how awful it is and she tells me things she's done in her life to distract herself. She also has fibro and sometimes just talking to someone helps so much when you know they understand.
Posted 6/12/2010 4:31 AM (GMT 0)
I understand your fear...I was about your age when my health started really going down the tubes, and am twice that now. Like you, I was someone who exercised a lot, ate well, etc. There was no single trauma that could explain it, and MANY doctors gave me the brush-off back in the 80s.

I still feel as though I'm living Life Lite. And I resent it - why me? (Why was I, who could do more pull-ups than any other girl in 6th grade, unable to swing my toddler around or even carry her without extreme pain later on?) There is no why, at least not that they know of. I keep tweaking different things to see if it helps - right now I'm not eating gluten. You just go on, because what choice do you have?

Sorry to go off like that, I'm on the pity pot tonight because I overdid it and am in more pain than usual. But I have found things that help me a lot, as most here have. It's trial and error. What works for one doesn't for another. Good luck with your treatment!
Posted 6/12/2010 5:53 AM (GMT 0)
Hi and welcome!

I see you've met the first wave welcoming committee...lol This truly is a great group and I'm glad you have joined us. There's one thing you said you have had to rethink...that people with fibro are NOT lazy, etc. We did an informal question/survey one time in here and found that the vast majority of people with fibro are just the opposite. We are perfectionists, over achievers, givers and just never seem to stop.

But when we are knocked down by this darn disorder we have 2 choices. We can give in and stop living or, we can just DO IT! I'm lucky to have a doc that has a similar attitude. He said that I am to live life the best I can and he'll do his part to keep me as comfortable as possible, within reason of course. My choice has always been to live life the best I can. I'm going to hurt no matter what I do. If I sit or lay down too long...sometimes over 10 minutes...I'm in pain. If I go outside and work in the gardens I'm going to hurt. So..might as well get a few things done and enjoy life since I'm going to hurt either way.

Do read and learn all you can but be wary of those who promise a cure or fast relief from fibro and, by the way, they want a pile of money to help you out too...lol

Chutz
Posted 6/12/2010 11:33 AM (GMT 0)
Hello little Dorky Dinosaur (I love your real handle, but couldn't resist this!),

Glad you found us! There are many here who were probably in your same shoes one day...it's amazing what happens when you experience something that you thought didn't really exist!

I've had Fibro for probably 30 years now...my other chronic pain issues are far more recent. For a long time, I went thru dealing with Fibro as a single mom, then I was married to a man who thought I was just lazy, and didn't hesitate to say so. Fast forward to now, 20 years later. I am married to a fantastic man who treats me like a Queen and sometimes has to be told to back off a bit and let me do something, so I don't turn into Jabba the Hut!

Seriously, I think having a loving supportive partner is a key element in dealing with this long term. Even if you're single, having family members or friends who support you is a huge advantage to managing. I'm lucky in that my kids are grown and gone, so it's just Ray and I at home. He takes care of most of the cooking, pretty much all of the cleaning (I sweep the floors and dust, he does everything else), all of the laundry and generally anything else that needs doing. I am on long term disability and in addition to everything else I have going on, chronic fatigue is a huge problem for me, so I spend a lot of time resting or sleeping.

Pacing yourself is one of the best things you can do...only you know how much you can do before your body starts to protest. So what if there are dust bunnies in the house...people who come to see you are there to visit and if they don't like it, they're welcome to pick up a broom and sweep. :-)

Seriously, listen to your body, pace yourself, eat well, do some gentle exercising, get a good night's sleep (use a Warm Buddy if you need to) and don't be afraid to ask for help. If you're not on something to help you medication wise, you may want to ask your doctor for something. Many here take Lyrica or Savella or Cymbalta - you'll find something that hopefully works for you.

Good luck to you, glad you're here and hope to hear more from you soon.

hugs,
Pam
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