Topic : Living with Chronic Pain

Is it possible you might have thoracic outlet syndrome?  Look it up online and you'll see where the problem might be.  Of course there's not a whole lot you can do, but knowing is half the battle. 

Good luck in finding out! 

-fight : ) 

 Thank you so much for the wonderful "Welcome". And the awsome advice and great directions for myself to travle on. 

I just have to smile about your trip though Wy.. My husband always says if the wind were to quit blowing, he would fall over from leaning so long. 

I am so blessed to live between the Bighorn Mtn's and the South Dakota Black Hills. So one hour East or West, life is Grand.. 

Also was so releived to read that someone else has been having a "melt-down" as I call it, I have not been out of the house in 5 days. Just no energy and "hurting" is at a higher level. I am totaly blaming it on the weather. The wind has been blowing for over a week and it has a bitter bite to it. 

Again, Thank you so much for the wonderful welcome and great advice. 

Diana 

i have been down with this for over a year now there is not a day that i'm not in pain if you take call the meds they put you on you sleep all day I have been trying to get my disability approved i haven't been able to work for two year my fiance really doesn't understand what i'm going trough the kids just drive me more crazy because my mood swing are like a roller coaster they just always hit when i'm on that downside plus I deal with two kids that have a adhd kids so thats even makes my days hard just doing the housework is so hard no one I'm around understand. the only thing that has help is getting stronger in my faith with god . I would not wish this disease on my worst enemy. I wish it wasn't so hard to get help for this my dr keep telling me to lose weight how can you lose weight when your in so much pain to walk I just keep praying that god is going to work everything out. I'm glad to know that I'm not the only one going through this i just wish people would understand more the pain we're in everyday no matter what your not alone. shelly 

This too is the first time I have ever read a message board or have even thought about posting anything.  But I think it is time to find a place for support. 

I was finally diagnosed with fibromyalgia about 6 years ago.  I went through the "million dollar" work-up as my dear doctor calls it after being completely bedridden for 7 weeks - my employer wasn't too impressed with that.  LOL   

My Social Security disability was finally approved last July, thanks to a wonderful attorney and 2 years of fighting the system.  I am still trying to figure out the Medicare "thing."  But that eventually will clear itself up - I hope. 

As of 2 years ago, I became the primary caregiver for my 84 and 87 year old parents.  My mother is pretty much wheelchair bound. She needs help getting in and out of bed and she is no lightweight.  My father is still fortunate enough to be able to remember his name.  The discs in his back are shot.  After taking Mom to the doctor on the 5th and then becoming completely down and in excruciating pain from Friday until Wednesday, my doctor who also happens to be her doctor read me the riot act about pulling and tugging on Mom and taking her up and down the ramp.  Fortunately, my sister who lives an hour away came and took care of "the parents" until I could get back on my feet..  By the way, I am only 52 and this is certainly not the way I pictured my life.................in pain all the time. 

I wouldn't trade this time with my parents for anything, but.....I get sooooo down, physically, mentally and emotionally.  I don't want pity.  It is what it is. 

It has been said that fibro is not progressive but I disagree with that.  each episode seems to be worse than the last. .....or is that my imagination?    

That's it for now....if I go on, a pity party could develop......  Thanks so much.  Oops!  The most positive thing in my life is my wonderful, supportive husband who loves me and my parents.  What a guy!!!! 

Sandy 

Don't be bashful about posting.  I am glad you have found your way to this board.  If you have read previous posts, no everyone has fibromyalgia but everyone does live with chronic pain from one or more sources.  Post whenever you feel the need AND post whenever you may be able to help someone else who is going thru a difficult time--even if it is just to say, I know how you feel.  It is such a big help!!!!! 

My doctor did call back today and told me not to hold back on taking my pain meds so much.  Physically I don't feel any better but emotionally I feel more relief.  Now they're talking about more ups and downs in the weather for the next week.  Well, I'll just have to accept it because I sure can't change it. 

Knowledge is power.  I really believe this.  The power may only refer to the power over one's own life but that is the most important life in my opinion.  Therefore, I will share with you three web sites I recommend.  Of course there are many others but stick with the ones supported by a professional organization.  The American Pain Foundation addresses pain for all of the conditions I have seen in posts on this message board.  It also has lots of links.  You can find it at www.painfoundation.org.  For those with fibromyalgia look at the National Fibromyalgia Association at www.fmaware.org and National Fibromyalgia Partnership at www.fmpartnership.org.   

Sandy, you are correct that the thinking "used" to be that fibro is NOT progressive but more recent findings are that, at least for fibro as a result of serious trauma, each event triggers fibro which is indeed more severe than the fibro that already existed and there is no way to turn the clock back.  Dr. Mark Pellegrino has addressed this in several articles and in his books on fibro.  He, and others, have studied this phenomenon.  Each flare is not worse than the previous but each traumatic event results in a more severe level of fibro.  It is NOT your imagination. 

LasVegas, you have lots of people who know exactly how you feel.  Oh, if only so and so could understand.  I'm not sure how to get others to understand.  I found a couple of short pamphlets on fibro many years ago and gave them to a friend to read.  She said it helped her.  But many people do not like to read or do not learn easily by reading.  If you can liken how you feel to something specific that another has experienced and then ask the other to imagine that feeling as a daily feeling that won't go away, some may understand.  Again, check out the web sites above.  You may find something to help you. 

I'd like to hear from Sandy and LasVegas and others. 

okay -- today, i took the needed sleep and rest of this whole board on my shoulders:  slept 8 hours uninterrupted, woke for coffee and a sandwich [turkey], back to bed, slept for 6 more. i'm gonna do 20 minutes on my bike and then... back to bed.  i am for some reason exhausted.  so... everyone has a little time to get your sleep requests to me. 

marcellyn!  vent away!  you, especially.  

hyper-cycling through stuff -- that's what i do when i know i am febrile but the thermometor only reads 97.4 degrees.  

pain goes with no sleep; no sleep goes with pain.  pain and insomnia go with fatigue.  fatigue goes with insomnia and pain.  oh, lord , woman! 

toss in those tangibles from the new med to the weather and you've got a totally rotten day. 

i am doing the serenity prayer on your  behalf for a change. don't worry, i can say it over and over and i will. 

one thing -- it's MLK jr. day and maybe that's why the doctor didn't respond? 

love, 

prof-de-rien 

well, little miss sandy, you won't be getting any stinking pity parties from me... 

because i think you are more likely to be a saint!  what you are doing is *very* physical work and it's bound to also have psychological challenges as well. 

your parents are so lucky to have you [and your sister!]. 

sincerely, 

profderien. 

Thanks so much for the encouragement. 

profderien - I am certainly no saint.  Trust me!!! I was blessed with wonderful parents.  I do so enjoy them.  My mom and I have some pretty wonderful talks in the mornings and nights.  I am a daddy's girl and he worries about me so much.  But you are right in that the role reversal creates some pretty challenging situations. 

mffowler - thank you so much for the websites.  Two of them I aready know about.  And it was cool to hear someone echo my "knowledge is power."   

Now, I want to tell you about some of the joys of my life - other than my parents. 

1.  My husband, Charlie.  He is the kindest, most gentle, loving man I have ever met.  Many days he works all day and then comes home and takes over for me.  He has developed into a really decent cook.  He does all the wash because he doesn't want me to have to travel up and down the stairs (we live in the basement of my parents' home).  I can't say enough about him. 

2.  My 2 daughters.  Jennifer just turned 30.  She is married and has a daughter and son.  She does training for the McDonalds Corp.  She is a beautiful woman inside and out.  They live in Michigan so we don't get to see them too often. 

Katie will be 29 next month.  She has been in the Navy for 9 years.  She is here in Louisville doing recruiting so she can be close to her Granny and Gramps.  She and the Navy get along really well.  Hopefully this is the year she makes chief.  She, too, is beautiful inside and out. 

3. Our grandchildren - Brittney will be 8 in March and is so so smart.  She is the first grandchild so, of course, she holds a special place in our hearts.  She is the spittin' image of her mother at that age.  Michael is 4 and he is something else.  One night I got a call at 10:30.  When I saw the number on the caller ID, it startled me.  Naturally, I thought something was wrong.  It was Michael.  He had gotten his mother's cell phone and decided to call me to tell me that he loved me.  His mother had no idea that he had done that. 

4.  Our German Shepherd, Max and our 2 kitties, Winston and Susie.  Max is quite the character.  We got him at 8 weeks old at the Humane Society.  He is too smart for his own good.  I swear that understands everything we say.  I know he can spell  <BIG LAUGH> Susie was a stray that came to the place where my last job was - starved and pregnant.  Winston, we adopted from our vet's office.    Winston clings to me when he knows I don't feel "up-to-par."  He sleeps with me - wherever it is I am sleeping and Max lays on the floor next to where I am.  At 100+ pounds, he's too big to lay on the couch or in the bed.  :-)  Susie, however, is Charlie's cat.....but we won't go into that.  LOL 

Those are only 4.  These joys are what gets me through.  Our kids and grandchildren keep in constant communication with us.  The weather has been horrible this winter for my fibro.  It's raining today and the temperatire is falling so it's a take-it-really-easy day.  I will lay down at 1 as I do every day whether I sleep or not. 

Thanks again. 

S 

Thanks, prof.  You really did good!.  The doctor did call back later in the afternoon.  I knew he would-I was just in a really "funky" mood.  He also gave me some reasonable options.  He is the "ideal" rheumatologist.  Graduated valedictorian of his medical school class.  He is obviously very intelligent but he is every bit the perfect physician--listens, answers questions, educates, reassures, provides alternatives, is interested in me as a person.  I really found a "keeper." 

I have a 100% down featherbed that after several years of abuse had a "downfall" [groan] but was told if I could send it back to the company, they could redistribute the down and return it for only the cost of the postage.  Well, I finally got that in the mail this morning.  It was difficult.  It weighed less than 14 pounds but it was so bulky it took a lot out of me. 

Then I got my body massage, came home and rested for 3 hours, then went to a professional meeting.  Although I am retired, I am still trying to keep up my professional credentials and work part time--on my terms.  But since I didn't sleep last night either, I am exhausted this evening.  The first thing I did after preparing for the evening is to read the messages on this board.  I really have found them a big part of my life. 

Thanks again, prof-de-rien.  You are a good person. 

Sandy, 

Thanks for letting me know that you, too, believe in knowledge.  Sometimes I think I have an insatiable appetite for knowledge--others look at me like I am crazy.  Do you experience this? 

We also share our four-legged family in common.  I have three cats.  Princess is a blue-eyed seal point Himalayaan about 12 years old.  My boss at the time found her as a stray.  Apparently she had been abused by a man with a rolled newspaper (or similar).  She was so afraid of everything and everyone initially.  Now she is the most beautiful, loving, and intelligent cat that is with me almost everywhere especially when she knows I am not feeling well. 

Cuddles is a laid-back pure-bred blue/cream Persian with copper eyes.  I got her from a breeder as a kitten for her personality so she wouldn't clash with Princess.  Cuddles is so sweet.  Her purr is so loud the vet has difficulty listening to her heart and lungs.  She, too, lays with me for hours.  She loves to be combed and demands it several times a day.   

The third is a white Persian who was a show cat.  Her name is Angel [what else?!].   I got her at 7 months from a breeder.  She had just won a blue ribbon for best in color at a cat show.  After 8 years she still has some of her show cat "sophisticatedness" but she is more like the other two now than she was.  She also likes to be combed but she can't stay with it for more than a few minutes. 

That is my family in the home.  Sister and her family in MN & AZ; I am in MO. 

Take care.