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Posted 8/20/2009 8:45 PM (GMT 0)
I am curious about what each person's story is.  What I mean by that is this: what age did you start to be affected by fibro, what age were you diagnosed, how bad how fast, what age are you now (up to you if you want to include that one), do you have to use a cane or some other device to assist your movement now, etc.

I guess I would like to know what is in store for someone like myself.  I am 35 and haven't really had a day without pain since January.   I have had symptoms since I was about 25 but it was much worse the past two to three years.  I was diagnosed this spring.  I tried Lyrica - worked pretty good but made me fat, cymbalta did nothing, now on my first day of Savella.  I take vitamin D, Topamax - and something else that I can't seem to remember for the life of me right now.  Imagine that.  I am your typical fibromyte. 

I am just wondering where this will end up for me 10 years down the road.  I can hardly make it thru a 40 hour work week right now.  I know everybody is different but I am just wondering where this long road has lead other people.  You talk about your canes and I just can't imagine that I might have one 10 years from now - or sooner.  At the rate my pain and fatigue are going and guess I really can imagine it to tell you the truth.  I so am hoping for a cure for all of us. :-)

Thanks.

Posted 8/20/2009 9:06 PM (GMT 0)
I know exactly how you feel. While I've had fatigue and brain fog issues for years now, the last month or so have been the worst of my life. Exhaustion, pain, being unable to do more than a little housework without dropping-I haven't worked for six weeks, and cannot imagine going back to work. My NP is considering changing my diagnosis from CFS to Fibro, or sending me on to a rheumatologist. I'm terrified I'm not going to get any better, and wonder if life will be worth living if I don't.

The positive is, though, that folks who have problems much worse than mine keep going on, and their posts about assistive devices and stratagies give me hope that I, too, can adapt. I've already picked up hints on making daily life easier for now, so that I can spend less energy on things I have to do, and perhaps have some left for things I want to do. I miss my hobbies-gardening, quilt making, stained glass. I even have a wonderful kiln, and had hoped to learn thrown pottery-just as this scourge hit me so hard. As frustrated as I am right now, I'm not giving up.
Posted 8/20/2009 9:08 PM (GMT 0)
I think I rambled a bit on that last post. Sorry.
Posted 8/20/2009 9:27 PM (GMT 0)
I developed fibromyalgia a few weeks before my 40th birthday...right out of the blue.  I am now 62. 

 

I do use a cane at home and have carried it on trips but haven't needed it yet, except every night.  When I get up in the middle of the night, I need to use it because I'm too sore and don't want to fall.

 

I got my handicapped placard at age 42.

 

I have not been without pain all these years except when in the hospital on morphine.  But I've been able to control the pain with over the counter meds, supplements, vitamins, stretching, gentle, massages, and gentle exercise.

 

My summertime flares are worse than they used to be but the rest of the year is the same as it was when I developed this.

 

Keep a positive attitude...keep as active as possible...keep informed of this illness...and enjoy life!

 

Sherrine

Posted 8/20/2009 10:28 PM (GMT 0)

Hi Austin,

Sorry to hear you are not doing well at this time.

Here's my story:  I think I've had fibro since my 20's.  I'm an A-type personality, always wore out fast but kept on going.  I married young had two kids and divorced after 14 years.  An emotionally wrenching time for me.  I also had an auto accident at 27, whiplash and the pain that goes with it.  I remarried and acquired a wonderful DH and three more children that I helped raise.  Pain and exhaustion getting worse but I just keep on keeping on.  I wasn't dx"d until I was about 45.  I went to college at 48 then worked until I was 60 and just could not do it any more.  How bad is it--I think my name says it all.  Yo-yo.  I have good periods and not so good periods.  I don't use a cane but I do have a handicap sticker and I use it when I need it.  I don't use any meds, I have major sensitivities to most meds, I  use suppliments , work with a NP, exercise when I can, and pace myself.  One of the best ways I've found is to set my kitchen timer on my range for 20-30 minutes, and move around doing housework etc. and when the timer goes off, set it again for the same amount of time and go do sitdown stuff.  I read, use the computer, pay bills, and other quiet activities.  The timer seems to motivate me not only to move around so I won't stiffen up but to get me out of my easy chair or away from the computer( it can be addicting!) and also to actually get someting done ---ahh! a feeling of accomplishment to my A-type personality. 

Yes, you will have hard times but you will have good times,too.  Keep  coming to the forum, you have friends and lots of support here.

Mary Lou

Posted 8/20/2009 10:48 PM (GMT 0)
I developed fibromyalgia symptoms when I was perimenopausal in my late 40's.
Back problems were another concern. I learned I had degenerative disc disease.
After I had my back surgery when I was 50, my symptoms became more bothersome.

I went to a rheumy who dismissed my symptoms ( migranes, brain fog, fatigue,achiness)
to menopause. He did believe I had early onset osteoarthritis after taking xrays.
My PCP requested I get a bone scan. The scan revealed osteoporosis.
Again my fibro symptoms(migranes, brain fog, fatigue and achiness) were dismissed.

My husband and I moved to another state due to a job change for my husband.
Another new PCP, another rheumy. Both doctors were good listeners. I told both
doctors I believed I had Fibromyalgia. They asked alot of questions and tested me for
tender points. My rheumy also ran lots of bloodwork. I am sort of in a diagnosis limbo.
I do have fibromyalgia. I do have scleroderma, but I may have an overlap of Lupus
and RA as well.

So my fibro symptoms began when I was 48. I was diagnosed at 55. I now am 57.

This year I have been through 2 bone marrow biopsies and 1 breast biopsy. I take
one flare at a time and try to keep a positive attitude.

I have been on lots of differant medications. Fibro meds include Savella, Flexeril and
vitamin supplements. I stay as active as my body will let me. I try to keep my
stress down using relaxation therapy.

Live Life

Robin
Posted 8/21/2009 3:12 AM (GMT 0)

Austin 73

I had growing pains as a child. My Dr's warned my parents of a CNS problem that would develop later in life. I was sent to Urgent care locked up in fetal position a youth. I would get locked up huched over too when I was younger. Had mild Scoliosis. Went through life with migranes since my period. I would cry during them. Unbearable. Felt like I had arthritis during my period times on my legs. Never had cramps or other PMS symptoms. Stayed active. Exercised a lot. Felt fatigued in college. Had to take naps. My fatigue and legs would hurt with migranes daily then on. Saw many Dr's. Just recently got diagnosed with FM. I'm in my 30's using a cane. That's about it.

Posted 8/21/2009 4:15 AM (GMT 0)
I was just recently diagnosed, but the really bad symptoms seem to have come on about 2 years ago. I thought it was some kind of a parasite at first because it seemed to be a skin thing but then it got worse and so I did a search to find what it could possibly be. Well I know now and realise it could be a lot worse than it is...although they really don't know what it truly is yet do they? lol

I'm 59 now but think as you do Danib that I've had this most of my life. Or felt it coming on for the most part. I've never had the energy that most people do. I always put that off as a symptom of my thyroid as I did alot of this when it got really bad, but my thyroid has been regulated for quite some time and usually all through my life.

Maybe some day they'll find that what we have really is some type of flu virus...wouldn't that be a kicker? lol

Anyway...my motto is "there by the grace of God go I" and even though I'm not "healthy", I still believe it to be extremely true and I'm grateful!
Posted 8/21/2009 5:58 PM (GMT 0)
I think I've had it since my early 20's.  I started having migraines all of the time, then tingling-numbness in my hands.  I tried to play tennis but then my neck and shoulders would hurt so bad for days.  I noticed that none of my friends seemed to have these problems.  I did have children by then and a lot of stress.  I too am a type "A" person.  There were car accidents also but the symptoms had already started before them.  Maybe they made it worse.   Dx'd with Raynard's in my 30's and also had surgery for thoracic outlet syndrome.  I still had all of the usual pain--neck, shoulders, arms, thighs and migraines and still numbness in hands.  In my 40's I really started to notice the constant stiffness and started an exercise routine which included yoga and Pilate's.  Being a type "A" I was religious about working out and stretching.  I believe this is one of the reasons that kept me going so long without seeking a diagnoses.  My 50's were about the same but then my sleep problems became much worse.  I had been getting up at night for years and soaking in the tub because the pain and stiffness was so bad.  By my 50's it was every night.  I was only dx'd this year.  I am 63 and the pain in my rear end had become so bad I could not sit for even a few minutes.  The fatigue for me started about the same time.

 

I don't use any aids right now and am only on 2 prescriptions-amitriptyline and voltaren daily and also the malic acid/mag. combo and also fioricet for headaches but I do wonder what I will be like in an other 10 years.  I continue my exercise routine but I feel I have slowed down in general.  Maybe I would even without fibro.  I really feel although it is not suppose to be a progressive disease that my symptoms just got worse each decade.  I try to keep a positive attitude and stay as active as possible.

 

Throughout the years I did go to chiropractors and sports medicene doctors.  They helped with the pain temporarlily but no one suggested fibro.

 

Puppylover

Posted 8/21/2009 6:28 PM (GMT 0)
Well, I am 21 years old, and I was diagnosed a year ago. But, I was told by my rheumetologist that I had likely had this my whole life, but it was in the background because I hadn't suffered too much trauma. He told me that it went into full swing because of the birth of my son. I do sometimes have to use a cane to get around, but that's only on really bad days.

I take a lot of medications. I take Lyrica, Lortabs, Robaxin, Trazodone, Fioricet, Luvox, Prilosec, Reglan, Zantac, and some over-the-counter medications like Advil. I don't really know what to tell you about ten years from now because I don't know myself. But, that's my story in a nutshell I suppose.

Posted 8/21/2009 6:50 PM (GMT 0)
Hi Austin

I was diagnoses with fibro in March of this year.  It was a long journey to get to a diagnosis though.  I went through many tests for all the other ailments that have the same symptoms as fibro.  It took almost a year to find out it was fibro.  I thiink I have had fibro for quite a while because for the last few years my energy level has been real low and the pain and stiffness has been real high.  I think it all started with me when I was in my mid 20's, when they told me I would probably never be able to conceive a child.  I was devestated!  Then by some miracle I got pregnant and miscarried and again it was almost to much for me to handle.  I had a good dr. and he told me not to give up because if it happened once it could happen again and it did.  I was a nervous wreck for 9 months, always afraid I was going to loose this baby and thankfully I didn't and he is a wonderful young man today.  I think during this time is when I started having some symptoms but of course nobody really knew that much about fibro so it wasn't even considered. I believe all this came to a head when my brother passed away in March of this year from cancer.  It was a very hard time and I was always feeling very sick and fatigued but I thought it was just stress.  Six days after my brother died I was diagnosed with fibro.

  I do use a cane and it is an American Flag cane and I use it proudly.  I've even gotten compliments on it.  I had to leave my job 2 years ago and I am now on disability but that is for the arthritis.  I'm now 55 and even though this is not what I thought my life would be like, it is what I was given and I try to keep a positive outlook and take everyday as a gift and be thankful that I can still get around even if it is slower than before

I hope the best for you and I also hope there is a cure for this, if not in my life time then hopefully for you.

Stay Positive

American Woman

Posted 8/21/2009 8:15 PM (GMT 0)
hi austin,
i've had fibro all my life and was told it was everything from growing pains to chronic fatigue.

I was officially dx about 6 years ago( can;t remember) and i am one of the few who'e symptoms can subside for months on end and enjoy sports and activities i never get to to with a flare up.
My current flare started last october, but i can pinpoint what set it off.

If you can find your stressors it'll make it that much easier to manage.

I'm 32 now and it has gotten a little worse each time i get it, but i have to just take it really easy and try to ride it out.

Don't get too bogged down in what the future holds for you, only envision yourself healthy and walking cane free. I has a cane in my twenties but haven'e used it since i found a better way to cope, i'm now back working even with a flare up between 30-35 hrs a week.

Try to stay positive, i know it's a horrible condition but it's manageble. Don't be too hard on yourself.
boo
Posted 8/21/2009 9:09 PM (GMT 0)

I really appreciate so many of you responding.  Thanks!!  I really don't dwell on what the future holds for me as far as my fibro is concerned but it does cross my mind. I suffered from severe growing pains when I was a kid - don't know if that has anything to do with this or not but I know that somebody else mentioned it. My father passed away from cancer when I was 13 - major sleep issues since then - that reminds me of the other medication that I am on that I couldn't remember on my first post - Trazadone. That is a life saver for me also.  I really think that traumatic events are what set off my fibro, abuse (sexual as a young kid but not by parents) and later physical and emotional abuse by 2 boyfriends and then I was attacked and severely beaten by a drugged up chick who thought I was somebody else - this was all by age 30!!  I guess those things put together plus being a type "A" person might have just put me over the top.  Who knows??

I am hoping that the savella will work and sooner than later. Only on day three but so far no side effects.  Hoping it stays that way.  I was also given an rx for some flexeral (sp?) that I need to pick up after work.  I heard that makes you really tired so you basically just need to take it at night??

Thanks again!!

Posted 8/21/2009 11:24 PM (GMT 0)
It started when I was 7 with JRA in my feet, over the next 15 years it took over most of my body. I was in so much pain

when I was 25 that I swore I would be in a wheelchair by the time I hit 35. I had times when I could barely walk.I started running and it went into remission for a few years and came back full force. I've had most of my "female" parts either removed or realigned. I went to a rhumey who blew me off because I have a heart specialist so she sent me back to my PCP. Fibro was dx 5 yrs ago but symptons much longer ago

Some of the meds I've been on over the years are:  Clinoril, Amatriptolyne, Noratriptolyne, Mobic, 800 Iboprofin,

morphine, hydrocordone, predisone, depro medrol, niasprin, topril, allegra, claratin, zyrtec, oral nystatin, flagyl,

rhinocort, nasonex, z-pak, med-pak, tons of antibiotics, darvacet, percocet, flexoril  and quite a few more I can't think of.

Now I take Co Q-10, Super Cissus RX, Bio-Sil,  Hair vitimans, Multi vit, Colustrum, Hylaronic Acid, CMO, HMB,

primrose, bromelain, ech-goldenseal, Usnea, HGH and a few other herbs for various ailments. NO prescription

drugs anymore. Tylenol or Aleeve if it gets bad. Definately checking into the melatonin.

I can now work a 12 hour day without much problem. Sometimes I get achy after a 12 but the 8 hr. days no longer

bother me. I'm finally sleeping most nights and have minimal tolerable pain before bed. I can kneel down on the

floor without putting my body in shock for the first time in years. The  pressure points are healing and the calcium

deposits in joints are disolving. The popping and cracking are now reduced. I'm glad I met the body builder who

introduced me to some of these wonderful cures.

 

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