How or when did your Fibromyalgia start

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kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 6/18/2010 7:39 PM (GMT -7)   
For me I had it very midly as a child nothing major.
Then one New Yers eve I was admitted to hospital with viral meningits after that was the end of my normal life.
I was active I used to mow our acre of lawn with a push mower walk 2 miles pushing a stroller 4 days a week to help at our sons school. It was all uphill so very trying.
Then I got sick, boy did I pay for that. I was almost unable to walk in days and was told I only had 6 months to live at one stage that lasted a week. I was told it was some type of cancer and I spent 10 weeks on chemo. In the end I opened the phone book and looked up local doctors picked one out and the first visit he knew what was wrong. I mean by then I had been tested for everything know to man I have even been gene tested now that was interesting.
So then the pain relief started thank goodness. Also the answers as to what was wrong the specialist I had seen who was one who lied to be when I went back he was still not a believer in FMS.
I ended up going to see another one as I walked in he said the morphine has to go. After he had seen me he increased the dosage. He was not big on painkillers.
We tried hydrotherpy  never again it put me in bed for a week unable to move. I tried physo they told me too never come back they where making me wose. A tens machine has me screaming in pain.
I went to a pain clinic in Brisbane the only one around when I went Well that was 10 days of hell the first few days where great they drugged me up I felt nothing. But after that it was hell, for starters the beds where as hard as rocks they would not let me have the special mattress they had. I was allergic to some of the medacations they gave me. In general they where useless. We did classes on nutrision [sorry I just can not spell today] now I knew more then the woman teaching the class. the it was off to see the head shrinks they where great as soon as they found out I had gone 3 years study to be a pastor they treated me well.
When I arrived back the first thing my Doctor said to me was "You lasted longer then I expected" Great he could of told me that before I went
and so it went for years until the doc retired then it was fine a new doc. Well we are very thin on the ground here for doc's so I found a doctor who changed my meds weekly umtil she almost killed me with with drawls the chemist could not believe what she was doing so it was find a new one. By the time I found one I was at 98 percent chance of a heart attack. That shocked me she was wonderful she also suffered with fms and we battled it together she would look into new things for me each week until she found the answers. It was with her help I got off the morphine I did it in six weeks and went through withdrawls for a year afterwards. Then for 2 years I went into remission when the pain started again it was nowhere as bad.
That is my story.
 
Kathy
FMS,CFS,IBS,Migraine

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 6/18/2010 10:48 PM (GMT -7)   
Dear Kathy, I was diagnosed about 10 years ago with the fibro, but I think I have had it since I was very young and lived on a farm. Not sure if it was caused by being sexually and emotionally abused by my brothers or from falling off of horses. I was never very good at horse riding lol.
but I do know that from a young age I had alot of back problems and other pains that normal kids dont have. Then it was finally diagnosed as fibro first by a bone specialist then by a sleep study. I have had alot of wonderful doctors along the way and I have been so lucky that none of them have ever thought that I was just a drug seeker. I never took morphine except after a surgery and it almost killed me. The nurse said if she hadnt changed the way she did rounds that night I would have been dead by the time she got to my room. (Sometimes I feel like I missed my chance of dying peacefully in my sleep. lol) Anyways I have been on a lot of different meds but since this same surgery I have become intolerant to most pain medicines. The only thing I can use for pain now are fentanyl patches. My doctor has no problem perscribing them for me because he knows that I will make them last longer than what the directions say to use them for. I also recently started using valium again at night to help me sleep. I had gone off of it for a year when I was still working because I never had any problems falling asleep because of the exhaustion.
Now I have nights where it is hard to fall asleep so I take one valium at night. Never more than that. My doctor always says to me you are not an addict you are dependent on them for your health. I hear of so many that the doctors think they are just pill seekers and I find it so sad.
I wish all doctors were like mine. Well that is enough rambling.
That is my story.
Shirley

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/18/2010 11:59 PM (GMT -7)   
Looking back, I had some symptoms as a kid...sensitivity to sounds and lights, nausea,
headaches, growing pains and insomnia off and on but I never let anything stop me. I
was super active, participated in everything. When the childhood illnesses went around,
I really got them good, I remember my Mom tying a diaper around my head to support
my mumps...chicken pox covered every inch of my body, including inside my mouth.
I remember having flu-like symptoms alot and I had anemia. My Mom said I had a
nervous stomach. I wasn't the healthiest kid and my 5 siblings didn't get sick like me. I
had my tonsils and adenoids taken out at age 5. Growing up I was always the skinniest
kid in class.

I first saw a rheumy when I was 50, by then I already had a diagnosis of Osteoporosis
and Degenerative Disc Disease. He took x-rays and added Osteoarthritis to my list. He
ignored my complaints of achiness and fatigue and attributed it to menopause and
because of my prior back surgery. He noticed my hands and feet being discolored on
visits and I was told I had Raynauds. Bloodwork was done a couple times and my ANA
was negative. Two rheumys later and five years I was told I had Fibro and a connective
tissue disease. Almost two years ago I had a biopsy and was told I had Scleroderma.
More bloodwork was done and was told that I had Mixed Connective Tissue Disease
(MCTD) an overlap of Lupus, Scleroderma and RA. Getting a diagnosis took forever,
but I am glad to have a wonderful rheumy now.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


myjoy
Veteran Member


Date Joined Feb 2009
Total Posts : 686
   Posted 6/19/2010 6:33 AM (GMT -7)   
I was always going to the chiropractor for years before being diagnosed (didn't help). But in July (2006) one night my finger swelled up, I couldn't move it and it was very painful. A few days later my whole body started hurting, and I could barely move. I went crying to my GP doctor, and she suspected fibro right away, and sent me to a rhuemy. The rhuemy did tons of tests, and by January of 07, I was diagnosed with fibro.

I take Nabumatone (Relafen) as my anti-inflammatory, and Hydrocodone (vicodin) for break through pain. I don't take the vicodin every day - my doctor says I do well with that. I now have an Internist here in MI....I had to give up my wonderful rhuemy in WI when we moved last year.

I feel blessed that I was diagnosed so quickly, as others suffer much longer many times.
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), welbutrin, trazodone, lorazepam, nabumetone, hydrocodone, c-pap machine.


damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 6/19/2010 6:58 AM (GMT -7)   
I was only recently diagnosed in Feb. of this year, but I know I have had fibro for awhile. I think that a car accident that I was in when I was 18 is what may have triggered it. I know that is what started my headaches. Although sometimes I wonder if I didn't have it as a kid because I too suffered more then my friends with "growing pains" and other aches and pains. It took me a long time to even realize how much my body ached because my headaches and migraines were completely out of control! The pain was unbelievable, it totally consumed me. After many doctors and tons of different medications we finally got the head pain somewhat controlled and then I felt like I had been run over by a train! Everything hurt and I was exhausted. I always assumed the fatigue was from having horrible headaches all the time and never getting proper sleep. I had never even heard of fibromyalgia when I was diagnosed. The first thing I did when I got home was google it. When I started reading about it, everything made sense, including the headaches. I was actually relieved when I got my dx because I realized I wasn't crazy! I am very lucky to have a wonderful and understanding doctor too, my life has improved since I was diagnosed and now get proper treatment. Take care everyone and have a wonderful weekend!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


KellieJo
Regular Member


Date Joined Apr 2010
Total Posts : 382
   Posted 6/19/2010 7:00 AM (GMT -7)   
I haven't been formally diagnosed yet, the doctor mentioned fibro several times this week, however other test is being performed to rule out things.


I did get into a car wreck 2004, rear ended by a drunk driver. I thought I was fine until several months later my neck became so tight I couldn't move it and had to go to PT. They did a MRI and found a bulding disk, I have problems there ever since.

2007 got a major sinus infection waited to go to the doctor, no insurance. Ever since when a front comes in I get major pressure and pain in my right ear. It can't be touched.

This winter something went haywired, I remember sitting at the computer desk and had this horrible sharp pain shoot through my shin. Prior that, I wasn't feeling good, fatigue and loose bowels for 2 weeks. Never ran a fever tough. I was sleeping in the day off and on, not sleeping at night, I was a mess. Ever since then I have sharp pains shoot through different areas in my body. Muscle stiffness, aches, pin/tingling sensations, odd skin sensations.

I don't take pain med. on a daily basis because I can ignore it. The only time I take medication is when I get headaches or when multiple places hurt at the same time and the pain isn't going away.

I'm love being active and outside but I'm still trying to learn not to overdo it. I can't avoid the weather and that usually knocks me down.

I think there is something going on with my family. Sisters have issues and I remember my mother locking herself in her room for 2 or 3 days at time not feeling good.

I just had a talk with her and she told me last week make myself several rice buddies, she has. Hmmm, once again that makes me suspcious.

hisfaithful1
Regular Member


Date Joined May 2010
Total Posts : 167
   Posted 6/19/2010 7:24 AM (GMT -7)   
I want to thank you Kathy for posting this question.
It's interesting and encouraging to hear other's stories.
 
My diagnosis is not official yet, however I know I have so many of the symptoms. So I will wait to share all of my story.
 
I just wanted to say please everyone who can share, please do. It will help so much to hear what you all went through, especially for us newbies.
 
Thank you ladies, and gentlemen. Hopfully the guys on here will share to.   

Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 6/19/2010 9:07 AM (GMT -7)   
I have never felt good. Use to go to the dr. a lot when I was younger. My parents never believed me, still don't as far as that goes.

I was diagnosed 5 years ago. Prior to getting sick I had been working out 6 days a week and was losing weight for the first time in years. I was in pain all the while but just blew off the pain as a sign I was working out maybe too hard. Eventually the pain stopped me in my tracks. I thought I was dying. Went to see a reheum. cause I was hurting so much in my joints. She said FM.

I have pain everyday. Right now it is pretty bad.
Fibromyalgia,arthritis,raynauds syndrome,gastroparesis,IBS,depression and roseca
 
God and Family is my life.


cattlover
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/23/2010 10:28 PM (GMT -7)   
I just joined the forum, and I'm not sure where to jump in. This is probably a good place. However, I'm not feeling very good right now. I had a horrible fibro-fog day (in the store and I can't even get my words out to the cashier -- ack!) and now I'm having flare-ups.

I would like to say that I'm thrilled to find you all. Also, my fibro began after I had surgery for a benign tumor on my spine. The surgery was in July, 2006, and my diagnose, finally, came in October 2008 (though we knew for a year before that I had it - "we" = my general physician). My new neurologist made the diagnosis.

I look forward getting to know more of you. I have learned to do thing to help myself, and that has help, but I also have a disc problem and myofascial pain syndrome. You know.. just a carefree lady. HAHAHA Oh, I have to laugh or I'd cry.

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 6/25/2010 1:38 PM (GMT -7)   
Welcome to the boards catlover, sorry you have the fibro but I am glad you found us. There are a lot of good people on the board and you might want to put in a new post introducing yourself so that everyone can welcome you. Hope you are having a good day.
Shirley

cattlover
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/25/2010 9:06 PM (GMT -7)   
sotiredoffibro said...
Welcome to the boards catlover, sorry you have the fibro but I am glad you found us. There are a lot of good people on the board and you might want to put in a new post introducing yourself so that everyone can welcome you. Hope you are having a good day.
Shirley



Thanks Shirley. I plan to do that. I've just been a bit tired lately and the fibro fog is going like wild so I want to wait until I can be a bit more rested and make sense. blush

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 6/26/2010 11:31 AM (GMT -7)   
Gotta love that fibro fog and the exhaustion right. I totally understand. It is so frustrating for me to do things like making a pot of coffee then going to get some and realizing I didnt put the water in or I forgot to turn it on. Another one is starting to say something and then forgetting mid sentence what it was you were going to say. Or walk in a room to get something and cant remember what it was you were going for. My husband used to get so mad at me when I would do things like that but I think he finally understands its not something I do on purpose.
Hope to hear from you soon,
Gentle Hugs
Shirley

Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 6/26/2010 2:11 PM (GMT -7)   
I think I have had it for a little over 2 or 3 years.  I can tell the difference from my first trip to Europe.  We walked up to 10 miles a day every day for a month, up and down stairs in the metros and up and down hills.  We did a lot of standing and I did just fine until the very end.   That was in June 2002.  So it happened sometime after that.  I tried to get my doctor to figure out what was wrong and he tested me for RA and lupus and thyroid and a bunch of stuff.  The ana came back positive, but he did not follow through.  He muttered and mumbled whenever I asked for help.  Then three years ago (was it 3 or 4?) I went to Italy with my husband.  We did walking tours in Rome and it hurt so so much.  Then a year later we went again with friends and I could barely walk at all.  Even the first day I was in so much pain, I could barely stand it.  I hated Venice because it is against the rules to sit in certain places and the benches were almost always taken.  I sat on the steps in St. Marc's square anyway and risked being scolded by the policia. 
 
I had recently fired my doctor and selected a new one who knew Chinese and Western medicine.  I e-mailed her from Venice and saw her when we got back.  I did research on symptoms.  They were sort of like lupus and sort of like RA, but not exactly.  Then I found fibro and this forum and asked my doctor.  She diagnosed me and sent me to the pain clinic where it was confirmed.  I finally got some help and learned pacing and got some medicine.  I also got the myofascial pain syndrome diagnosed.  I never knew the horrible pain in my neck that had been there for years even had a name. 
 
I am still learning to pace myself and not fall into the cycle of overdoing on good days.  This forum is really helpful.
Sue

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40575
   Posted 6/26/2010 4:09 PM (GMT -7)   
Hi Catlover,
 
I just wanted to welcome you to the HealingWell Fibromyalgia forum.  We are so glad that you have joined us, but sorry that you have fibro too.  I think that you will find that this is a wonderful place to come and visit. 
 
I hope that you are feeling better soon.  Keep posting and let us know how you are doing.  As was mentioned above, when you are up to it, please do start and introductory thread so that we all can get to know you.
 
I wanted to mention there is a thread called fibro101, please do read it.  There is a wealth of information on there.
 
Take care,
 
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


cattlover
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/27/2010 1:39 PM (GMT -7)   
Thanks for the welcome, Karen. I'm so tired this weekend. I hope to post next week. I seem to not be sleeping well lately.. so frustrating!

I think I have tons of info, but I'll most definitely check where you said. Thanks. I also have myofascial pain syndrome and a disc problem. Oh such fun.. oh, and I suffer from bipolar disorder. Whoo hoo! eyes
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