Welcome new faces and old,
There are so many new faces here and it is hard to reply to each of you. I have had fibro for many years. Not sure how many. Does it matter? No. I have had 4 strokes, have 2 kinds of arthritis, degenerative joint disease, hardening of the arteries, etc. the list goes on and on. Know what tho? I donít care. No matter how long the list gets I will not give up my joy at being alive. Sure life hurts. My body hurts. There are days when the biggest plus in my day is getting a shower. And I am proud of it!!
And then there are the days I can do all that I used to do. Differently perhaps. Again, who cares? Not me.
I spent 9 years with a shrink. I learned about living. My shrink was a cancer survivor. I have not seen him in over 2 years. All I needed to learn to continue learning I have gleaned from his mind and all his psychology books.
Each day when I wake I feel the pain and I am grateful for it. That pain reminds me I am here to enjoy another day. I don't have good days and bad. I just have days. Each is different, just like when i was healthy.
Each of us has illness and adversity in our lives. We find our way, in our own way. For me it was a good shrink and a lot of determination. I have attitude, as my mom puts it. Finally I am using that attitude to my advantage. Do I have an attitude about fibro? You bet I do. Fibro has become my best friend so I protect her. When she is sick I comfort her. When she is feeling frisky we play.
I am still me. You are still you. We spend our whole lives evolving from infant to old one. Change is an aspect of living none of us can do much about. Adapting it realistically the only path back to sanity and acceptance.
Grieving over the old you is normal and to be experienced. With help this experience can be less stressful and shorter. Learning new coping skills for the stresses of life eases the trip to the new you.
Family and friends will show compassion or resentment, according to their ability to adapt to your changing self. Gift forgiveness to those who cannot grasp this new reality. Also, if possible see those people as seldom as you can or want. For those who show compassion be cautious that you do not overload them with your fears. This is where a shrink comes in so handy. You can dump it all on them and go home. Protects your family from the worst fears and anger you feel. Also helps you stop being afraid and angry.
You can do anything you set your mind to so long as you understand that you may have to alter how you do those things a bit. I went from a wheelchair in 95 and weight of 198 to today. I am 125 pounds, I kayak, hike, walk, garden, paint, carve, swim, and dance once a week at a sleazy neighborhood bar. Donít drink, just dance. Gave away my wheelchair. That felt soooo good!!!
Do not give up on yourself. Sure doctors are at a loss as to how to help us. Did you know for ever 12 new diseases that are discovered only 1 has an answer found for it? We may never know how we got it or why. We may never have a magic pill to stop it all. Counting on the doctors and science to help us must be secondary to helping ourselves. We know our bodies better than anyone. We know when we hurt how much we can get away with doing. So mostly we are our own doctors in a sense. In the end, doctors and shrinks aside we are firstly responsible for our bodies and minds. Remember, any doctor can be fired and a new one found. Never settle for a doc who does not hear you.
My dad always said life would be hard. He also said it would be the most interesting ride! How right he was. I read somewhere, a saying. It went something like this.
When I die I want to slide in all used up and worn out screaming WOW! What a ride!!
Our bodies may be sick but we decide the health of our minds.
Know that you can do this. Know that you have it within you to find peace and joy as you are.
The following user gives a hug of support to bluelakelady: pokiesue (05-16-2011)
Thanks Bluelakelady for that wonderful reminder that life is life and to deal with it an move on because we are or should be grateful to see the sun rise or to hear the birds sing .And to smell coffee brewing and to see your kids grow. im thankful even tho fibro makes my body hurt and swell I am thankful to get out of bed to make another dinner or to comb my lil girl hair and last but not least to be able to work 8 hrs. still
Hi all, I am new to this so I may need help, but I will do my best first. My life since 2000 has been one long series of tragic happenings. I really don't want to whine here but these situations I believe where the cause of my getting fibro. I have been experiencing this terrible pain for about 4 years and for 9 months was seeing an MD who kept insisting that my diet was the cause of this pain. I guess he like so many others didn't believe this thing is real (all in our heads, they think). I told this MD that if this is what he thought I would wish that he would experience it for just one day!! As I wouldn't wish this "syndrome" on anyone for more than that. I have just been diagnosed within the past 6 months. We all must know how debilitating this thing is , I've spent many a morning in tears nothing helping the pain. There is so much more to my story, but it's not good news. So now I want to share the good news, and my friends there is really good news about this thing we have.
At my appointment with my GYN (really) I was filling her in on my new diagnosis . Her became really excited, for she had just been to a conference where she learned that most people with fibro are deficient in Vitamin D, after blood work to check my D level it was discovered that I was indeed deficient in D. The normal level is between 30-50 and going higher, and mine was 11. She put me on a mega dose, 50,000 IU once a week. I have been taking the D for a month now and must have blood work monthly. My reason for all of this is to encourage all of you to have you D level checked. I have had 80% improvement in just one month. My GYN was thrilled and I could not express my gratitude enough. I even said to her that this might be the cause of this dreadful thing that we have, she thought I might be right. I still have some pain in the morning, but nothing like I had been experiencing. Nor the depression that is so bad that comes with this thing.
Please give yourself the gift of a blood test!! I am so grateful to God and to my GYN for helping me to get out of this HELL. God bless, I'm not sure that I have posted this properly, but it is my wish that all of you will benefit from this
I was just diagnosed with fibro which the doctors said was from an accident I had involving my neck,chin and head. I have has severe burning sensation mostly in my face, neck arms and armpits and terribe tingling and burning on my head too. I didn't have any of these symtoms before the accident. I have'nt been able to work and just going out and about is hard. I am currently on gabapentin in the day and at nighti I take lorazepam, remeron and nortriptyline. The neuronton is not working . I do get relief at night.
Do others have this nerve pain. I don't get any other aches or pains except in my neck and shoulers. I also have tmd. I have tried acuputure, crainial sacral,chropractor. I have heard the nerve pill lyrica has helped. What has heled with all of you. floundering,
I was dxed in 1984 after going through the gammit of tests. The Dr. that dxed me told me you must keep as active as possible and that is the key to my not being in my bed, I can always hear him saying that.
I can be in pain and clean and feel better sometims other times worse. There is no rhymn or rhytum to this dd at all. We have no choice as Blue said other than to except it, keep trying to do what and when we can and smile.
I just adore the other tidbits that go with the dd, IBS, spastic bladder, ringing in the ears, etc and etc.
Myofascal pain syndrome
Arthritis, cervical and thorastic
so glad to see you here in this sanctuary.
since i had another stroke about a month ago i am off for another ct scan and back to physical therapy. getting fibromyalgia release therapy done at the same time. YIPEEEEEE!!!!! love it.
the time to pay for all my play is here. needless to say with fibro, lupus and r.a. acting up i have decided to do a three day cycle of steroids. this will be my first time trying steroids. we see. now you know i am one hurting puppy if i am willing to do steroids. i dislike them intensly. they bring out my agressive side. not my prettiest aspect. giggle.
i am really looking forward to the p.t.
my vacation and the time i had to be good after bladder/rectal surgery in april has left me mushy muscled and i don't like that one bit.
i eat veggies loaded with vitamin D as well as whole organic milk and do my time in the sun, our finest form of vitamin D. for myself vitamin therapy is too extreme for my body with it's other goodies and all. so i eat mine. i love the sun, gardening, swimming and of course my lovely kayaking keep me out and in her light.
depression is not always an aspect of fibro. it can be for some. doctors blanket this aspect of fibro by saying it goes with the territory. i disagree. sadness, yes. we all get that experience.
as one of the fortunate ones who do not suffer the horrors of cronic depression my heart goes out to all my sisters and brothers who do live daily with depression. while i cannot understand i can empathize.
i am off to see the newest harry potter movie with my man friend and his lovely granddaughter later today. her treat. she is 8 and adorable. think i will adopt her. she is a magic child. one day she will be a great healer.
anybody sat in a theater lately? last time for me was 1990. sure hope i can keep from squirming, giggle. heck there will be tons of kids so i doubt my squirming will even be noticed. tee hee. wonder how soft those seats are???
Hi Hooverah, After reading you ****, I was so relieved to know that some else experiences that burning sensation. I was very concerned that it was something unrelated to fibro and no MD seemed to know what it is. I've tried to find info on this to no avail. Thank you for your sharing. God bless!
Last edited by kayo65; 07-13-2007 at 06:47 AM.
Reason: Re: hooverah
i think most of us have had that burning sensation. for myself it lasted about 6 years and then went away. haven't felt that in i can't remember time.
perhaps for some of us it stays and for some it is a time thing and passes. i hope for you that it is so.
Hey Blue..I dropped in the other day and had a chance to read your unbeliable post..once agan you have put into writing a beautifull post..very inspring for me. dag nab it..gave me chilly bumps and brought a tear to my eyes..huuummmm dont tell anyone! as I said before and will say again and I really mean it this time..hehe, WHEN I grow up I want to be just like you! LOL
anyways..I have been having doc problems and med problems so's a little side tracked for a while with the health issues and above mentioned problems. I wanted to post the other day but, had to go lay down and sleep for four hours!! I managed to get a short post in on something about potatoes..ahhhh yes..they make my tummy swell and it only took me 3 years to figure out that they were the culprit..and I am starting to look very hard at wheat bread!! dont trust it now either..LOL
Take Care ~ Cantell
Last edited by Administrator; 08-17-2007 at 06:14 PM.
Hi blue, great post you know I loved it. You know my attitude....keep it going and never give up!
I forgot who commented on the burning pain, but boy do I have those! They started out small but lately have been BIG! They go mostly from my rib cage down. Now I know how blue feels when she has to just sit down even if it is in the floor of a store. Sometimes I just have to get off my legs or do something that helps till the pain stops. You know what though like blue says at least I know I'm alive and it doesn't stop me from trying to get as much done as possible. The only thing that puts me down for the count is fatigue, sometimes I just have to give in and have a restful day, for me that means just sit around, maybe take a nap and enjoy the day.
Like blue says just keep going, I finally got my windows washed the other day at 7:30a.m. no less, I have been trying to get that done for the longest time but I didn't give up it is finally done....yea!
Bravo Bluelakelady !!!! You have said it all. I am new here and found this perfect well said post of yours. Thank you Thank you.
I've never been one to give up and strongly agree we must use our own judgement when it comes to taking care of ourselves. Meaning, yes we all have numerous doctors but only we know how we feel. At times we need to be our own doctor too. Another day living with Fibro and life goes on.
Pain lives with me daily, would like to kick the pain out.
Hope everyone has the opportunity to read your post !!!
Absolutely very well said. Thank you again.
my first post-ever. so here goes. bluelake your words are music to me. can i add alittle nc humor. you know how expensive hospital cafe food can be.
i walked the lobby with pizza in hand and little lady said to me do they have to charge us so much for it and i said i guess it goes along with thier room service rates. She said what a good attitude about it. i don't know anything else. living with fibro,too
I'm new here, and would like to add my "thank you" for the beautiful post by bluelakelady. I, too have had FM for quite some time. I fought to stay working for many years until, finally, pain medication every 4hrs. was having no effect, and I was falling asleep, sitting up, between customers! I was down to 28 hrs. by then, but even that proved to be too much. I would go home, hungry for dinner, but in such pain, that I could not even stand long enough to make a sandwich. I'd lie down for a bit, to let the medicine work, but would wake up at 3AM, grab a sandwich, get into bed, then try to get up & do it all over again the next day. I finally had to face the fact that I could not work & still take adequate care of myself, and grudgingly made the decision to apply for disability. That, in itself, was a very long & trying ordeal.
All that being said, yes, I have times when I get nostalgic for the things I used to ba able to do... BUT, for as much as I have given up externally, I have chosen to seek that much deeper within myself. I have a sense of connection to the Creator that, while very informal, is very close and with me all the time. I appreciate the little details in life, whether it be the details in a petal or feather, or the miracle of watching a butterfly emerge from its chrysalis. I wake up happy & positive every day. I try to find the blessing in every situation because, truly, ALL things in life are both blessing and curse, depending on which side of the coin you look at! Life is one giant Universe-ity, a classroom, where there are things to be learned about oneself, as well as the big picture... as long as we don't choose to sit in "class" with our fingers in our ears, so to speak.lol I think some of the most unhappy people I've met, are those who keep trying to swim "upstream", against the flow of life, which does nothing but foster anger, frustration, and fatigue. (and we already have enough of that, yes?) And the thing is....the river?..... it still flows the way it's going to flow! The blessings this "ride" on the river of life has given me are: learning to take care of myself, (instead of always putting everyone else first); finding out what a true friend is... painful in some instances, but good); how to slow down; how to enjoy the simple things in life; how to prioritize my energy and, along with that- how to say "no, I can't do that". I am constantly aware, when tempted to have a pity party, that there is ALWAYS someone out there who is worse off than I am. My legs might ache, but- I have them, and they work, etc.., Blessings are everywhere, if we choose to look! Blessings to all of you in your daily walk!
~ Jody ^. .^
linda you brought tears to my eyes. sweet baby max. you posted this on sunday. i was on the mountain. all day i saw/heard the bald eagle flying and calling. now i get it. a messenger bringing joyous tidings. family gathered together around a child. can there be any greater moment of love?
iraq. i shall dance every day twice as hard that she comes home to all of you well and emotionally balanced. perhaps one day there will be no need for any country to have a military. it is always my dance prayer.
welcome jody! glad to have your happy self here. you have found the silver lining. it is a wonder, is it not? life is good. really good. a doctor once told me pain is your friend. he was right. with pain guiding me i have journeyed to lands i had passed by in my hurry thru life.
Last edited by Administrator; 08-17-2007 at 06:17 PM.