Make Fibromyalgia Your Friend

Hi,

I was diagnosed in june of 2008 FINALLY! I am sure you know that story!  You mention exercise...

well  I find it so hard to do this. If I move too much I pay. Plain and simple.   I am retiring early from my job of nearly 33yrs.  I simply cannot do it anymore.  There are days where this is much more devasting than others.  I have learned EFT (tapping) , do deep breathing, get regular massages, chiropractic care.

But, you are so right...there are some days that are MUCH better than others!

Moderation is a difficult aspiration for someone who is type A!!! But, I am learning, learning ,learning!

I look forward to checking out your website...information is a valuable thing!

Linda

I find Linda's comments very interesting.  It's the SECOND TIME today 'Type A' has been brought up by women with FMS.  Suffice it to say it's something I had noticed with my patients...  moreso that we were all almost OCD about neatness in the past.  What do YOU think ?

I also wanted to respond about exercise.  With my patients with FMS when I was seeing them as an OT in a clnic, I would start with selecting three machines they would work on ... say treadmill, UE bike, eliptical trainer, and then they had to MONITOR their fatigue and STOP when they were STARTING to get tired.  AND.... they couldn't go beyond 2 minutes on our first session, 3 minutes on their third, etc.  They all thrived and were appreciative.  I recall one 17 year old who had been an athlete in high school before getting ill saying 'I went out for a 20 minute walk and I thought that WAS being moderate.'  It is all relative.  So set the bar low and hope to succeed over it rapidly.  And then remember that every day is not 'more' and 'better' like it was before for us or it is for other people.  

Hi I'm new here and could write a book of the events in my life that has no doubt in my mind that contributed to this Stinky debilitating illness. I almost died when I was 7 with Brights disease known as Nephritis. The funny thing is my sister who was two years older took it at the exactly same time . We spent 2 months in hospital and doctors told our parents if they were prayiong people they might want to start praying :) Then when I was a couple of years older I had a bad influnza that made me hallucinate from the high fever and I prayed to die. I had rhumatic fever from it and now have three different heart valves that are a problem. When I was 12 I was in a terrible car accident and pushed to sidde as they triaged at the scene. My eyes were rolled back in my head they said no paulse and no bp. I could hear them and see the red ambulance lights and was trapped and couldn't move. The screaming around terrified me. I was also again with my sister but the older sister was also with us. They lefy=t the hospital at a month while I spent 2 months there. I had a left pelvic break and right clavical break. I was given a wheel chair to practice in and told I may not walk again to get practicing. When no one was around in the dark I would slip my arm out of sling and get out of the crib and walk around it holding the bars and thought There was no way I was going to accept that. In the years following My leg dragged and tripped me at times but in High school I even went out for track and field. Couldn't go for speed went for distance. 10 miles being the frutherist. The pain was terrible and by 12 grade I was missing lots of school because of pain in my lower back and groin. I had three c-cerean sections again was told most likely would not be able to have any. Again the 1st was just so making me sick and fell down stairs at a McDonalds resturant where I worked. I went to get checked as I was dissy and knew I split my tailbone and refused an xray as I knew I was pregnant.. second one came along 8 mths later and again told not preg as hemmoraging 5 times. They did an ultrasound because I was so sure and they were so sure I was wrong. !st took rubella when I was 2 mths along and  put in hospital most of 8 mth that I carried him habing a preg test every Am to see if he was dead. He was so not going to give up and me either his cord didn't need to be cut it broke when they lifted him out... he was on ventilator and 100 percent ox and I never knew as they kept me druged. The 3rd I had growing outside womb so it was gone and 4th a lump vcame out in rt shoulder blade size of grape. Iy grew to siz of large apople and you could hold it in your hand. I was od much intrest tio med students. They did surgery to remove what thry thought was a lypoma benigh tumor encased. IT wasn't it was a huge mass of muscles going inn lumps. They straightened them out all the way to the chest wall. The strength in my rt side was really bad neck pain shoulder pain and lost strength . It wuickly spread to both sides and then below the waist as well my whole body was so bad I didm't care if I lived or died. I started dropping things and memnry was getting bad and couldn't remember my own name at times. I was told it was abnormal Fibrositis go home suck it up and get on with my life they couldn't help me. I was not excited by the diagnosis and it didn't make any dif that it had a name at all if they couldn't help me. I had three kids under 5 and was in bad shape with a husband on three shifts at work. I did pick myself up and kept going tears often from the pain and lonliness as I didn't have any strength to even carry the new baby I was 28 and a meess. I went from one doctor to another and finally asked for a pshyc evaluation as I couldn';t do it any longer. They though it was MS and gave me baclofen a muscle relaxer that was terrible side affects. I decided to go back to collage and get a life. My husband was taking his teaching degree and I had the three kids in school at that time. I did I became super m,om that crashed and got back up and went again. I became a COTA a Occupational therpist assiatent. My professors told me I was wasting my time I wasn't goint to be able to keep going. I got myself a pep talk which I still do and did graduate with a B on the boards. Only one student out of 40 failed and the teachers were sure it was me... it wasn't. Then I went to work in a nursing home and couldn't remember any thing I took in courses. They terminated me in 4 months sayiong I was at risk of doing some thing we would all regret so they gave me a medical termination and said If I got help and

was ok they would rehire..I was devastated we had just picked up three kids and moved 10 hours up the road for that job. So I went to volunteer at the PTA doing things for the teachers and school making and baging popcorn... They were looking for a COTA and I said I'm one and they begged m to come work in the 11 schools with 55 students needed seen for an hour a week aome for 2 hrs. That lasted for a year and a coulpe months into the next year and again I crashed. Ok enough of my back ground eh :) Ok One thing after another started happinging in my body and it still hasn't stopped . I have so many diagnoises that if you want to read them ask... I won't boor you all any more. My point is I never stopped and indeed was an A personality. I was going to succeed beyound any one wildest dreams and there were times that I worked two jobs. I remember laying on a flithy bathroom floor for my lunch breaks too tired ans in pain to go on. I tried chriopractors, Tens, PT, heat, ice , muscle manipulation and mmassage. It hurt so bad I couldn't let any one touch me. I am fighting and geting constant canker sores in mouth, headaches combo of tension and migraines as well as silent miagrains. I have IBS. Hypothroid that started as hyperthroid. There is againm the sister who got sick with me got diagnosis a couple of years ago. She is thought to have Sorgens as well. The other sis has hypothryoid, Perniccious annemia like me and RA. I inherited several conditions as well and haew myo fascial pain syndrome. One leg is 2 in shorter then other. I have there spine curves. Orthostatic hypotension. raynauds, I'm freezing all the time. Sittine here in fleece with winter coat on and gloves, three pairs oif socks and slippers. I can be freezing till my teeth chatter and sweat ting at same time. I'm over doing tylenol and have so many things wrong that It scares the pants of me. MY favorite phrase is don't touch me. I have a spine that the vertabrae are flattened and inverting, my muscles are satropied and I'm compensating with muscles that are not made for the reasons I use them so double the pain. My ankels pronate and mt arches collaspe when I walk. I have severe muscle cramps in toes and instep of foot. The ball of feet swells up so I walk on my heels to give it a break and kicks the sciatica in. Look all I have to say I have been though the mill and haven't come back but you have to learn to grieve for yourself but get stuck and walloe in it pick yourself up and gpo again. Pacing is great sounding but so hard to do. My house is disasterious and I hate itbut I love my grandkids more so have to look away. I can't do any thing I once loved and dremt of but I do things and know the consequences. I inherited Fuch's corneal dystrophy and just had to turn my lisence into the State because my vision is 20/400 both eyes. So I'm sure it is even dirter here then I imagine . Any way I can talk on a very wide topics of the syndrome as well as TMJ... so ask away and please come join my group and read my info there and pass it onm to others as well. So sorry this is so long won't happen again:) gebtle hugs and rub on creams and pills. I now have a med cab full of pills and hate every one of them.

As Lumigrate's Creative Director, it has been a pleasure talking to and learning from several of you out there who have Fibromyalgia. Looking back on when I first came to Lumigrate, I'm amazed at how much I've learned. Like so many of you, I spent years going to my doctor with symptoms and was never properly diagnosed (with Hypothyroid). So many times we don't take control of our medical issues and we just trust that our doctors know what's best. And how many people out there are like me, and thought, "I'm just going to give up. This is what happens with aging and there's nothing I can do about it." I commend all of you who haven't given up and who take control by visiting sites like Lumigrate to get better educated, and to share your stories providing hope and inspiration to others. I invite all of you to share your stories in the Forums area of our website and please feel free to start comments in any other forum that would interest you or where you have information to share. Because so many of us have more than one condition, for example Fibromyalgia AND Hypothyroidism AND CFS, we have several different topics in our Forums section so you can share your stories and ideas on several issues, ALL at the same website. Thanks so much for your comments, and please continue to share! :)

Another OT person with fibromyalgia.  Welcome.  I got an email yesterday from someone who also had a long but interesting story.  I'm thinking that it might be appropriate to have a separate area for 'Fibromyalgia Stories' here.  Perhaps we'll set that up as a new topic.  As I read over what you wrote, I wonder if you and your sisters have looked into food allergies.  Thanks for sharing your story in our forum area and don't be surprised if we move it over to a new area inspired by you and the other people who like to write their story.  (Myself included). 

I so agree that you have to "make nice" with your fibro.   I finally had to let myself grieve my old life.   The dreams I had, the career I envisioned, the nice life my income could provide, and just simply, the dream of health.

Once I worked through all of that (I LOVE therapy!!), I was able to start looking ahead.   What gifts has fibro brought into my life?   What new and exciting things can I do?   I have noticed a huge trend of people who have fibro were once Type A personalities.   I know I was, I worked 75 hour weeks by choice!!   

So now I have to slow down and enjoy more.   And wow, what amazing things I have learned!   I am much calmer, I actually see those flowers I'm supposed to stop and smell.     I had to give up working, but have been able to increase my volunteer work, and what a blessing that is.   Most important, being at home has allowed me to care for my parents through their 5 joint replacement surgeries in less than 2 years between them.     I never would have gotten that priviledge without fibro.

I have learned who I really am, not who I thought I was.   I have learned to love every day, they are so precious.   I have learned to focus on the good and let go of the fluff.    Having life is an amazing gift.  It might take me an hour to walk around the block, but I will enjoy that hour!  

Because of fibro, I have started and moderate two support groups.   I needed one and couldn't find any in my area, so I took that as my hint to start one.   My therapist then suggested I keep growing, as people certainly need the comfort of safety to express your pain, without fearing judgement.

And most of all, I have learned to live a completely honest life.    Fibro is part of me, and so it's never hidden or shamed into the corner.    If you know me, you probably know that I have fibro and I hope that through that, I can help raise awareness.    Every day is a new adventure, a new lesson and likely a new pain!   But I'm grateful, because of sites like this that allow us to learn and push forward and become stronger people!

Thanks Mardy!

Aimee