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Posted 7/28/2008 7:20 PM (GMT 0)
I'm new around here, have had FM for 7 years.

I'm having new symptoms after all these years...for about a year now and been referred to rheumy after rheumy....they think some type of inflammatory arthritis.

With FM, where is your pain? In the muscles, or in the joints? All over, or somewhere specific?

Just curious?

kaymac

Posted 7/28/2008 9:33 PM (GMT 0)
Hi Kaymac,

My pain is always in my neck and shoulders, though I have it in other places too. It can feel like it is in the joints often because of it being in the muscles and tendons.

I often get pain in my back and legs. And in my arms. But it is always in the neck and shoulders, I have just learned to pretty much live with that.

I hope that you are having a wonderful day,
hugs, Karen
Posted 7/28/2008 9:42 PM (GMT 0)
my pain is from my jaw to my knees, on both sides. my rib cage and hips hurt the most. sometimes i have pains in my feet but that doesnt last too long. there isnt a day that I dont have pain, and it moves up and down and down and up. Nope, not a fun thing, but we have to do our best, and its not easy.
please feel better

hugs
Posted 7/28/2008 10:38 PM (GMT 0)
On most days my pain is from base of skull, which causes headaches, to lower back. However, I have osteoarthitis in my right hand that can be more painful on somedays than the fibro pain. It does feel like the pain is in the joints especially in the shoulders and shoulderblades. Sometimes it feels like my shoulderblades are being pulled apart in different directions.

 

I hope they get to the bottom of your pain soon.

 

luv and hugs

Marlee

Posted 7/28/2008 10:54 PM (GMT 0)
Always at the neck and upper back. I've had that for most of my life, so I'm used to it. y face has been hurting to varying degrees since May. My legs come and go, mostly it's achy thighs. My hands less often, but they hurt all in the joints with heat.
Posted 7/28/2008 10:57 PM (GMT 0)
I never know from day to day where I am going to hurt but I always have pain in my neck and right shoulder. I have a burning feeling in my muscles and in all of the tender spots. I never felt them before, now I know right where they are, ouch. As I sit her typing both of my thighs are burning along with my left foot, it aches. Sometimes it does feel like it is in the joint but it changes so it's hard to figure out. I always have the burning feeling somewhere.

With Fibro you just never know!

Meggie
Posted 7/29/2008 12:34 AM (GMT 0)

Thank you for responding.

My FM pain began suddenly and took over my entire body. I suppose the worse was the tender spots, legs and arms, lower back and hips. Everywhere, and then it would flare off and on for the first few years and then came and stayed with me. I guess it liked me. LOL

The fog took over and now I can't remember how long I've had the joint pain too. Seems the Lyrica helped the FM and the muscles, but now the joints are flaring.

kaymac

Posted 7/29/2008 12:24 PM (GMT 0)

I feel as if I'm getting worse as time goes by. My legs are by far the worse and now aside from hurting at night they are hurting late in the afternoon. My left groin feels stuck in a cramped position and pain shoots down the thigh of my leg making walking painful. I feel as if I need to carry an oil can around like the tin man in the widzard of oz. Where there is a joint there is pain. A year ago I was not in this condition. I feel as if someone robbed the quality of life from me when I was looking. How can I get worse as time goes on, I don't get it. I'm having a terrible time coping and I'm still not believing this is fibro. How can one hurt so bad all over? I feel sore to the bones. I try and take a hot bath and the cheeks of my buttocks (sorry) hurt. I'm so tender all over and I'm scared. I don't want this. I've excercised all my life, I eat healthy; I dont' want this!!!!! 

I'm sorry, I'm just venting. I need to let it out because I'm holding it in and I'm screaming inside. I find it hard to believe that within 12 months I seem to have spiraled down hill. I have a full time job and it scares me that every day tasks may become near impossible on days.  I want to find joy again, I want to not hurt, I want the me I used to be back!!!

Is this what fibro is? do you hurt all over and feel as if you are slowly dying? I'm sorry to put it that way and maybe I'm over reacting so please forgive me. If this is fibro then YES I'm grateful its not terminal. Its just the way I hurt I'm scared.

Thank you all for listening and I apologize if I'm coming across harsh. I just needed to let some of this pain out.

Hugs

Kimb

Posted 7/29/2008 2:26 PM (GMT 0)

((((Kimb)))))) I know exactly how you feel. Few months back I wrote such long entries in my journal describing my life just as you said.

I get tired of others telling me to be thankful it's not cancer and not terminal, but it doesn't take away the fact that I still hurt and grieve the loss of life I once enjoyed. Chronic pain stinks! To have one day without pain or fear that we will not move or be normal again!

I also hold down a job and it takes all I have to get up daily and go. I have gone downhill since my diag 7 years ago. I am not better, I am worse! I don't understand where others say FM can go away or get better???

I"m sorry for all of us who suffer from FM. You are so not alone. Vent all you want. Those of us with FM will ALWAYs listen!

kaymac

Posted 7/29/2008 3:48 PM (GMT 0)

kaymac,

 

First of all, welcome to the family.  You'll always find great info from some of the most wonderful people you've never met! LOL tongue

 

Anyway, my answer to your question-"Where is your pain?"  Where ISN'T my pain?  Seriously, I hurt everywhere. sad    I feel like my whole body is one giant bruise.  My back, knees, hips, legs, hands, feet, head, and neck always hurt.  More recently, I've been having "migraines" so bad that I feel like I'm about to die.  Also, last year I broke my leg at work (long story) and lately I've been having severe pain in that leg, all the way down to my foot.  I've been having strange swelling below the fracture site, too.

 

Basically, I'm a big old mess! eyes    Yesterday, I began physical therapy-but I really didn't do anything.  I just met with my therapist and we went over my history and she gave me exercises to do at home.  But, even though I didn't do anything physical-other than try to bend over and touch my toes and she bent my legs in order to see if I had pain in my hips, etc-I am in agony today.  It scares me that just a little manipulation of my joints causes me that much pain. sad

 

OK, sorry to use your thread to vent.  LOL-the longer you stick around, you'll realize I am one of the ramblers in the family! tongue    But, again, welcome to fibroland!  I hope you enjoy the ride! :-)   

Posted 7/29/2008 4:22 PM (GMT 0)

Hi Kaymac and welcome!

Where is the pain? Everywhere. Mostly in my upper back, neck and shoulders.

Kimb- Sorry that your having SO much pain. I got fibro 4 months ago and I thought I was dying the pain was so bad- I thought "you've got to be kidding!??" I would rather have a baby! I am now starting to feel better and realizing life is getting good again- even with fibro. Your body may be telling you that it can't work fulltime. My Dr. let me know that I may never again be able to work full-time. Time is going to tell.

Your not coming across harsh, your coming across as someone in severe pain and frustrated! Vent, vent, vent if you need to. This can get scary! We'll all listen-    GamJill

Posted 7/29/2008 5:29 PM (GMT 0)
GamJill, I like what you said.....

 

"Your body may be telling you that it can't work fulltime. My Dr. let me know that I may never again be able to work full-time"

 

I wonder if I would feel even a little better, with a little less pain if didn't work full time?? I mean sometimes working keeps me sane and my mind off the pain.....any thoughts on this???

 

kaymac

Posted 7/29/2008 5:38 PM (GMT 0)
I don't work full time.  I'm a retired teacher.  My hearing impairment kept me out of the classroom and now my age is added to that.  But, I keep busy.  I have to or my pain is worse!  If I sit too long I get stiff as a board.  If you have a desk job, make a copy of the stretching exercises on the Fibro 101 thread and take them to work.  Do them as often as you can.  They really do help and feel good too!

 

So, my advice to you is, if  you can work and want to work, then keep on doing what you are doing!  Life is too short to let fibromyalgia dictate your life!  You can learn to work around fibro and enjoy doing the things you want to do.

 

Sherrine

Posted 7/29/2008 9:33 PM (GMT 0)

thanks everyone.

(((((Kaymac))))) thanks for the hug. I can use it.

I know I need to control the pain instead of the pain controlling me; a work in progress. When you are hurting so much it's difficult to see past the pain. I had a good cry driving home today (I know I shouldn't cry at the wheel) only private place other than the bathroom! Accepting that your life is and will be different is not an easy thing to comprehend. I think in the back of my mind I'm waiting for the doctors to tell me what's really wrong so that they can fix it for me. I've not accepted this yet and I know it's making it that much harder for me.How can so many areas of your body hurt at one time? I still find it hard to believe.

I can't handle the thought of not working full time; I do work one day a week from home and that is a life saver for me. My career is a part of who I am. I love picking out clothes to wear, doing make up, listening to music in my car as I drive to work, stopping at the bagel place in the morning for coffee; I love all of this. am I nuts? Recently I got a promotion at my job. I've worked so hard to reach the point that I'm at and it scares me to think I may lose it all. I love being independent. I love working. 

Have a good everning all and pain free

Kimb

Posted 7/29/2008 10:31 PM (GMT 0)
Kim, that makes perfect sense to me.  I loved working too.  You won't lose what you have if you want it badly enough.  You are doing it right now in pain!  The more you live with fibro, the better you are able to control it.  When you have a flare, yes, you will be in more pain but you will learn how to work around it. 

 

You know, one of our moderators, Jeannie, has a cake decorating business.  That, to me, seems so difficult!  I just can't imagine bending over cakes and squeezing the pastry bags to make these elaborate cakes that she makes!  (Just click on her name and it will take you to her profile.  Her business site is posted there.  You won't believe the gorgeous cakes she does...with fibromyalgia and diabetes!!!)  This is something she likes doing and has learned how to work around the pain.  It can be done if you really want to do it.  So, don't worry!  I really don't think you are going to lose what your hard work has earned you!

 

Sherrine

Posted 7/30/2008 12:55 AM (GMT 0)

Thanks Sherrine

"Flare Ups" this is a phrase I need to remind myself of when I'm in pain. I lose sight quickly and drown in "what if". I allow the fear to get hold of me. Trust me, I know fear can rob me of joy. I need strength to fight. The past 2 nights I slep 4 hrs each night (this is actually good). If I can consistently get sleep I will be able to manage this condition better. Thanks for reminding me about "flare ups"; I think this is important to remember. Your right, I can work around it. I think down the road if I had to work more than one day a week home, my boss would let me. One moment at a time is what I keep saying. Just get through the moment. Don't worry about tomorrow until you've had a chance to get through today.

Have a good night and thank you

Kimb

Posted 7/30/2008 7:56 AM (GMT 0)
Hi kaymac

As I tell anyone who asks about the pain, it is different everyday and everywhere. One day I wake up and my ankles and feet hurt so bad that I can not walk. Another day, it is my hands and wrists. I can't even pick up a cup of coffee. Mine is joints and muscles. It is sort of playing Russian roulette with my body during the night. Which joint or muscles were shot during the night. Sometimes the FMS plays tricks and waits until I am up and moving around before something starts to hurt. I think FMS should also be called "the keep you guessing disease". Then you have the flare ups that intensify what you feel on any given day. So much can cause a flare up that again it "keeps you guessing". I just live by the credo that tomorrow is another day, and it might be better. I am always looking for the better days and coping with the bad ones.

Here's hoping for a better tomorrow,

Tootiemoose
Posted 7/30/2008 2:51 PM (GMT 0)

Wow, so many responses.. Thanks so much for participating.

Some mention joints and muscles. Example, feet, or wrist....I'm experiencing so much joint pain since the lyrica helped the muscle burning...I'm wondering if this is still the FM instead of an arthritis?? I guess my new rheumy will be able to determine that.

Anyway, thanks so much for the answers. As always it helps knowing more about others and how they live with FM.

kaymac

Posted 7/30/2008 4:46 PM (GMT 0)

Kimb said...

I know I need to control the pain instead of the pain controlling me; a work in progress. When you are hurting so much it's difficult to see past the pain. I had a good cry driving home today (I know I shouldn't cry at the wheel) only private place other than the bathroom! Accepting that your life is and will be different is not an easy thing to comprehend. I think in the back of my mind I'm waiting for the doctors to tell me what's really wrong so that they can fix it for me. I've not accepted this yet and I know it's making it that much harder for me.How can so many areas of your body hurt at one time? I still find it hard to believe.

Kimb, I could have written that myself just a few years ago. It really does take time for all this to sink in and learn how to deal with it. It didn't happen over night for me. There are so many aspects to fibro it is a big pill to swallow. But your not alone with dealing with it and that is what is so great about this forum. We never have to be alone with fibro.

 

Hang in there girls.

 

luv and hugs

Marlee

Posted 7/31/2008 2:11 AM (GMT 0)
I have the most pain in my legs, knees, back and neck. Tonight I'm have severe pain in both breasts. It's very uncomfortable without a bra and with a bra. This has been going on for a couple of days but tonight it's really bad. It hurts when I walk or move. I hope it goes away soon. I have been having sore breast off and on for about a year. Mammograms show nothing wrong. I'm guessing it's related to the fibro. Anybody else have breast pain with fibro?
Posted 7/31/2008 3:54 AM (GMT 0)

kaymak,

It took me a long time to accept my state of having fibro.  It is like mourning.  I had to mourn the person I was before.  I will never be that perky puppy personality again, but in a way, I think I am a better person. I take more time for the people around me because I am not chasing my next adventure. 

Work has always been a big part of my life.  I hurt of course, and still have my flare ups, but with exercise, eating healthy, nutritional supplements, etc.  (basically finding what works best for you)  You can still work.  I work ten hour days.  I wrote a book which I promote and speak about and started making wine jelly, which I sell and have two young children.  It gets easier.  Hang in there.   I know it seems overwhelming right now.  I remember my first few years.  I wondered if I would ever see light at the end of the tunnel.  It takes a lot of perseverence.  My ex always said I was mean as a snake.  Sometimes that stubborness pays off.  I will not be an invalid.  I will fight!!!!!!! tongue

Posted 8/1/2008 12:53 AM (GMT 0)
((((((Marlee))))))

Sorry, I just read your response to me, thank you so much for your support. The past several nights 3 total I have slept at least 5 hrs straight, woo hoo :-) . Now I'm not sure what is doing it but I'm glad its doing it!!!! lol. After 11 months of leg pain I now have 3 nights without the pain. Trust me I was on my knees thanking the good Lord above (hope thats ok to say). Truly I was. Psychologically I feel better. It's amazing what sleep will do for you.  Please remind me when I'm in my down spurt that I will smile again like I am now!  On another note, I've been having pain in my left groin and the doctor thinks maybe it's a hernia so he is sending me to the surgeon to get checked. I think its joint related but we shall see. I'm smiling today and I've slept well the last 3 days so I am a happy camper!!!!!

thanks again for your kind words.

Hugs

Kimb

Posted 8/1/2008 3:46 AM (GMT 0)
Hi I am new to this although had fibro 3 years, my pain is intense burning in neck and shoulders and muscle spasm in thighs.

The strange thing is although always in neck area the pain moves. my doc thinks i am crazy.  I sympathise with anyone with fibro

especially in neck as I think its most sensative area. My pain worsened when lying down and i am now on Lyrica and on an opoid

Norspan. I am now much better but I worry about being reliant on any meds and become very depressed when thinking long term.

Dont know how you all fair with thinking of future.  Does it go?  anyways I have been made to feel crazy  and i just want to say

the pain you all feel is real as i have it to.  And it does move around.  And to anyone who has the tiredness, i slip in and out constantly

all day., even though I try to get up every half hour and do an activity.  Up to now had no one to talk to, I have no extended family

or friends and it is comforting to know that the forum is here.         from   sue2z

Posted 8/1/2008 5:46 PM (GMT 0)
Hi, Sue, and welcome to the fibromyalgia forum!  You had come to a good place.  We have some wonderful people here that will help you with good advice and ideas. 

 

I don't think about the future with fibromyalgia because no one knows what the future will hold.  Doctors are working on finding out what is causing this miserable illness and then they will be able to help us more.  In the meantime, I'm just taking one day at a time.  That works best.  No sense worrying about something that may not happen!  The worry and stress will make your pain worse, too, so try not to do that.

 

If you have any questions don't hesitate to ask.  Someone will be along to answer it.  I'm so glad you joined us and I hope to hear more from you soon!

 

Sherrine

Posted 8/1/2008 8:00 PM (GMT 0)
neck, shoulders, forearms, upper arms, fingers and hands sometimes, tops of feet, knees sometimes, sometimes feels as if it's my bones, but I think it's really my muscles
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