Let me introduce myself<mother of 5> with FMS - Fibromyalgia Message Board

fibromomof5 · 06-01-2005, 10:35 PM

Hello all, I just found this brd and felt I needed to post to vent and get support from others who I am sure can relate to this never ending pain. I am a 28 yr old mother of 4 ages 9.5, 7. 5.5, and 3, and also serving as a mommy to my 16 mth old niece who lives with us. I have been dxed with fms for over a yr but had to spend several yrs waiting for the dx. If lesions had been found on my Mri, the drs would have stuck with the MS dx. I have seen 3 specialists, and am now looking into a pain specialist, because the pain is unbearable. I ache all over and most days have trouble getting out of bed, moving hurts, and actually so does merely breathing. I have trouble with numbness in legs, hands, and feet with burning, pins and needles. This keeps me up most nights. Maybe that is why I feel so tired all the time. My worst symptom besides the above is that my scalp is so sensitive that it brings me to tears everytime I brush my hair. My husband now does it for me because I cannot bear the pain. Sometimes he forgets, and I go days with my hair rolled in a scrunchie just cause I cannot make myself brush out my hair. Beacuse Of this my long once healthy hair is now breaking off and very dry. I will need to cut most of it off but cannot force myself to go to the beauty parlor for fear of the pain. Most people who do not have FMS cannot understand how painful it is and I worry that the person doing my hair will hurt me. I also have a weight/self esteem issue coresponding to the fms. My problems started after birth of 4th child, and during the long process to diganosis, I gained 50 pounds. I am so embarassed by the weight<I used to be a body for lifer> but due to pain and fatigue I keep ignoring my need for exersize. This is such a vicious nasty cycle. I am hoping to meet and make online friends to help get me through this. Thanks for listening, Jennifer

bluelakelady · 06-01-2005, 11:31 PM

welcome jennifer,
you have come to the right place. we all go thru the same issues and bizarre pain. i have been on this journey for over ten years now. i want you to know you will find your way. how much you weigh is not who you are. nothing can touch who you are inside. not fibro and not weight. you know the true you. so do those who love and know you. they see your spirit much more than the shell that carries that glorious spirit. you will learn to see your inner self. it is the gift that comes with fms. insight.
there are meds you can take for the restless legs and arms so you sleep better. i take neurontin at bedtime. have you tried it?
i hope you have a good doctor who listens. that is paramount to any healing. and yes, exercise does make a difference. i drag myself to physical therapy twice a week. sure it hurts. but hey, i hurt anyway. might as well be the good burn of muscles and tendons coming back to life. i have massage therapy also. deep tissue fms massage and myofacial release. they hurt. alot. for a couple of days every inch of me is daggers. then the third day dawns and i am without pain, with energy and ready to be the best me i can. smiling and laughter help so much. mostly i laugh at myself and the silly things i say or do.
if you could go thru childbirth 4 times you can do this too. 4 times. i take my hat off to you. once was enough to tell me i never wanted to do that again. i love my son. he is so sweet and special to me. he is 26 now. with health issues raising children is hard. not impossible, just hard. you have a rare opportunity to teach your children compassion for sick people. so many children do not know this. another gift fms gives you. this rare chance to create compassionate little beings who will become compassionate adults. much is learned thru illness. we find the things we thought were so important really are not. and we find the things that do matter. patience, compassion, tolerance, love, most of all love.
again i welcome you to our unique and wonderful family.
peace,
bluelakelady

bluelakelady · 06-01-2005, 11:41 PM

ps. me again. i shave my head bald. hair hurts so i got rid of it. by the way i am 50 years old. i have a lovely shaped head and love my no work hair doo. giggle. now i only have to do my hair once a week and the pain of my hair being on my head is gone. can't brush what ain't there, giggle.
i shaved it the first time for a friend who was going thru chemo. that was almost 7 years ago. her hair never feel out. well not that time. she had it 3 times before she left her body. amazing woman. every time i shave my head i think of patti. she showed me how short life is and how much it matters to say and do all that you can. never leave till tomorrow words you can say today. she would get a blood transfusion and hop a plane to mexico for the day of the dead. or to new orleans for mardi gras. she packed a whole life into her last 5 years. so, tee hee maybe you could shave your head too? just kidding. however it did solve my problem. my head is less sensitive with the hair gone. shaving my head is easy and does not hurt. like shaving my legs only rounder.
sweet dreams,
bluelakelady

hangin · 06-02-2005, 02:35 AM

Jennifer,

Welcome to a place of comfort and compassion. You will receive that here and more.

So sorry to hear you are suffering so. Taking care of your children 9 to 16 months old while going through this must not be easy.

I just want to say in the simplest way that my heart goes out to you and I cannot help but think that you must be an amazing woman, having your children and all. So many on this board understand and are here to listen, talk, laugh with, whatever you need...

You will find a lot of caring people here. I care.. Keep sharing and letting us know how things are. There are times in our lifes when we have to reach out and talk with people who get it.

Hang in there.

Peace and love, Janet

dpaz · 06-02-2005, 04:39 AM

Hi Jennifer, so glad to meet you. Sorry it had to be here, no one wants this pain, but we are glad to have you. You'll find the support you are looking for here, I know that I have. Hope to hear much more from you.

Peggy