New here, and Fibro diagnosis

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Amber Jo
New Member

Date Joined Feb 2007
Total Posts : 16
   Posted 1/30/2009 2:24 PM (GMT -6)   
For 20 years I have been putting off my pain issues. Then they thought I had Lupus, so I figured it was time to see a specialist. Well no Lupus (thank heavens) but I have fibro. My pain has always been in my bones of my legs, arms, and neck. I have a lot of other health issues, so for me fibro was a relief. I now have a doc managing my pain issues, and am quite pleased with this doc. I have had some bad docs in the past.
The only thing I can say after 20 years of unbearable pain is find a good doc. Get the right meds. I have been on a hundred meds it seems like, but I finally feel better. I just don't want to become addicted to the oxycotin. But nothing else works.
I really believe finding a good doc is very important. I now have a cardiologist, neurologist, rheumatologist, not to mention primary care, and gyn. But I love everyone of my docs. They listen and make me feel like a human being.
I still have a bunch of test to go through over the next month, my hair is falling out, and I have a bunch of other symptoms. But my outlook is good, and I am full of hope. Even if I end up with no hair I intend to tackle life head on, at least that is how I feel today.
This looks like a great forum, and I look forward to reading other's experiences.
Does anyone else suffer from bone pain in thier legs and arms? Just wondering...
Fibro, Hemiplegic migraines, Seizures, Abnormal Heart rhythms, Sleep apnea..... Trilepital 1200mg, Keppra 1000mg, Ativan 3mg, Klonopin 3mg as needed, Oxycotin 20mg 2x daily, gabapentin 600mg, Altenenol 50mg.

Regular Member

Date Joined Jan 2009
Total Posts : 55
   Posted 1/30/2009 3:44 PM (GMT -6)   


HELLO!! and welcome.

I didn't go for quite 20 years, but at about 13 or so I was diagnosed boarder-line lupus and was treated as if I had lupus. It turns out I didn't and have always had pain and other symptoms. Anyway, long story short, I was diagnosed with Fibro in August of 2008. It is definitely relieving in a sense to know at least what you have. I think that is half the battle. We can have a plan of action now, because we know what we are dealing with. I love your positive attitude. It will do more than drugs will ever be able. Oh, real quick, I wanted to also say that I have thinning hair. I havent lost it all, but I can tell that the fibro/drugs haven't done good for it.

As far as the pain in the bones, I actaully had it pretty bad in my right leg last night. I am not sure why and the only way to describe it to my husband was like ants crawling on the inside of my leg, like up and down the bone. it was a numbing feeling from inside out. I do also get random "stabbing like or arthridic" pains in my joints a lot. I honestly think this is just part of fibro.

You mentioned other tests...if you want any feedback or are nervous, there are plenty of us that have problem gone through it and we'll be able to calm the nerves. The people around here are great and supportive.

Welcome! Happy Friday!


24. Diagnosed with Fibro in Aug. 08 and Seasonal Affectiveness Disorder in December 08. Gluten free since Nov. 08.
Surgeries: Compartment Syndrome/Medial Tibial Stress Syndrome Dec. 05; Lap Nissen Fundoplacation Aug 06; Exploratory Lap Feb. 08.
Played college soccer. Going back to school to be a Registered Dietitian.
"I control the disease, it does not control me."

New Member

Date Joined Jan 2009
Total Posts : 8
   Posted 1/30/2009 4:05 PM (GMT -6)   
Hello, Amber
I also get what you describe as "bone pain" in my left arm, both legs, and bottom of feet... hard to walk now.  In fact.. that is how I described it to my doctor..  like you said "bone pain"...   I was diagnosed with Fibromyalgia about a year ago.. have had symptoms though for two years now.. I dont have lupus.. I dont have MS thank goodness..  I'm still getting some tests as well..  go to cardiovascular surgeon for legs and feet next week..    Good luck with your tests...   This does seem like a good forum...  There are no support groups in the area I live...   neares is almost 2hours away...   so this forum is a good start for support...

               "Everyone needs warmth and sunshine"... wether its from the heart.. the warm touch of someones hand... or the warmth of the sun that god has given us...  Breezie

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 1/30/2009 8:46 PM (GMT -6)   
Hi Amber and welcome!~

Glad to have you join our family. It really is like a wonderful and large family here as we all are here for each well as our selves of course...but whenever someone needs some TLC others will be there right away.

I agree that having a great doc is the most important part of your care. Without it you're sunk when you have chronic pain. I do love your outlook on life!

Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
Happiness is something to do, someone to love, and something to hope for."

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 40386
   Posted 1/30/2009 10:49 PM (GMT -6)   
Hi Amber,
I just wanted to pop in and welcome you the fibromyalgia forum.  There is a wonderful group of people here.  So very kind and compassionate.  We also like to go for a good laugh now and then.  I think you will find that this is a fun forum.
There is a thread on the first page of the forum that is called fibro101.  It is the second thread.  I think that you will find that it is interesting.  There are a lot of shared experiences on that thread.  And it is very informative.
I hope that you have a great evening.
Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 1/31/2009 1:56 AM (GMT -6)   

Hi Amber!

I was recently diagnosed with Fibro, so I don't have a great deal of experience with this lovely disease.  But I was diagnosed with Crohn's almost two years ago now, and I too lost a lot of hair.  My doctor at the time said that it was my body's reaction to everything it had been through.  After some research I learned that some of my meds interfered with the absorption of Folic Acid, and that can make your hair fall out.  I started on a suppliment, pushed my doctors into prescribing stronger meds to get the Crohn's under control, and my hair stopped falling out.  Over a year later, and a lot of my hair has grown back, but it's grown back curly!  I haven't had curls since I was a baby.  A lot of it also grew back gray.  Apparently, it's not unusual for hair that fell out due to poor health or medication to grow back a different texture or color.  Highlights cover the gray, and with a good hair cut it looks better, and is easier to style, than ever.  My best hair loss advice to you is try not to worry (it may seem like it at times, but it probably won't all fall out) and do a little research on your meds.  See if there are any nutrients they might be blocking and then check with your doctor about suppliments.  It's funny how in the whole scheme of things, the hair is probably the least important problem we have, but it can be the most distressing!

I also know what you mean about the importance of finding good docs and the relief of finally getting a diagnosis.  For the last six months my medical team kept telling me that my extreme fatigue, aches, and joint pain were all caused by the Crohn's.  They acknowledged that my current meds weren't taking care of those symptoms, and that there were other treatment options available, including increasing the dosage on my current meds.  But they "weren't prepared" to make those changes.  Well, I wasn't "prepared" to continue feeling this way, and paying them for the privilege.  So I found a new medical team, was immediately diagnosed with Fibro, and started a treatment plan that actually makes a difference.  In the last two years I've been through two PCPs, two surgeons, three GIs and two Rheumys.  I feel pretty good about my current docs, but I'm getting less and less patient with people who mess around and drag their feet about getting me the help I need.  Yes, I know that it takes time to figure out if a treatment is working or not, but in the mean time I'm the one suffering.

Veteran Member

Date Joined Jun 2008
Total Posts : 716
   Posted 1/31/2009 3:21 AM (GMT -6)   
Hi Amber, welcome to the forum.  It is a really good one & everyone is so helpful & knowledgeable.  It is nice to meet you & I look forward to getting to know you.  Some days this forum really pulls me through the rough spots.  I love the laughter we can find here, as well.  Come back soon.  Hugs, Denise

 I have:  Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression, TMJ

Meds: Ibuprofen 600mg every 4-6 hours, Cyclobenzaprine 10 mg, Simvastatin 20mg, Citaloram 20mg Melatonin 5mg Sublingual, B12 sublingual, B Complex, Folic Acid, Omega 3

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 1/31/2009 9:07 AM (GMT -6)   

Hi there Amber,

Welcome!!!  You mentioned hair loss and my eyes (ears) perked up.  I was thinking of running a thread on that today!  I can't go anywhere in my house w/o finding my hair all over the place.  I'd blame hubby for it but that guy's hair just keep getting thicker, so its me!!  Fortunatly I don't have any bald spots (yet).

This is an awesome group of friends.. we think of eachother as family.  I've learned so much since I've been hanging around.  Everyone truly cares about us. 

I'm always amazed how long many of us go without a dx.  I have been battling this syndrome most of my adult life, but didn't get a dx till just a few weeks ago, though I've been basically treated for it years.. I didn't have the official dx till then.  I'm on new meds now and they really are helping.  I'm not nor ever have been on oxy.  Hope I never need it.

Anyway, welcome!! And warm hugs!! 

Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel. 
Meds = Elavil, Tramadol, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 1/31/2009 10:02 AM (GMT -6)   
Hi Amber and welcome. My hair has been thinning on the top and sides the past few years and it seems finer. Stress can cause hair loss and when you live with pain everyday and everything else that goes with fibro it's enough to make you pull your hair out. smilewinkgrin
Read the fibro 101 thread, second on first page, it contains a great deal of info.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
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