Hi newbie looking for some advice.

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Charly
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/17/2009 6:55 AM (GMT -7)   
Hi I'm new to ths forum and I'm just looking for advice. I've been suffering with a lot of the syptoms of fibromyalgia for quite a while. Severe pain in four quadrants, fatigue, headaches, restless legs, numbness, waking up feeling as though I've not had any sleep etc. I went to see my GP who told me he thought it was Fibromyalgia as all my blood tests have all come back normal. My GP then refered me to a Rheumatologist who I've been to see today. The doctor then told me they don't think its Fibromyalgia as I'm not having sleep disturbances and that is the main characteristic of this condition.
 
I was just wondering if anyone else had received a diagnosis of Fibromyalgia who doesn't primarily suffer from sleep disturbances as I'm sure I have read somewhere that not all sufferers have this symptom.
 
Thanks Charly x

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/17/2009 7:04 AM (GMT -7)   
Hi, Charly, and welcome!  Have you had a sleep study done?  It seems to me that's the only way they know for sure you don't have sleep disturbances.  I never have done a sleep study but I rarely dream and I wake up many times during the night.  Most times I'm tired when I wake up in the morning, too.
 
Be sure to check out the Fibro 101 thread...the third thread on the forum.  There are links to good info about fibromyalgia, including a list of symptoms.  You just might see yourself there.
 
There is a world of information in back posts.  Also, don't hesitat to ask questions.  We are here to help you.  I'm so glad you found us and joined in.  I hope to hear more from you soon!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
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God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 7/17/2009 7:15 AM (GMT -7)   

Hi Charly..I too thought I was getting a good nights sleep but would wake up in aching pain.  My Rheumy told me that it's the level of sleep and not remaining in a sustained REM state that affects fibromites.  Waking up several times to change position or going off to the bathroom interrupts the sleep cycle.  I have a friend who is on disability for fibro and she sleeps like a log.  I personally would not rule out a dx of fibro based purely on sleep.  We all have strange and different symptoms with this disorder.  For some of us the Fog is worse than the pain.  I am sure others will welcome you and give their opinions.

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 7/17/2009 7:30 AM (GMT -7)   
Hi Charly and welcome. My dx was based on elimination of everything else it could be (listed in the fibro 101 thread) and the tender point test, I had no sleep study done. Some mornings I feel like I have slept okay and some mornings I don't feel like I've slept at all.
 
I think you need to find a new rheumy that is more informed about fibro. Before I went to the rheumy I have now I spoke to his nurse to get his views on fibro and to make sure he believed in it 100%, there is no sense wasting your money on someone that is not educated on your problem. Then I asked my GP for a referal to the rheumy I chose.
 
I hope you get a firm dx but you are more than welcome to hang out with us anyway, there are others that have not gotten a dx yet.
 
luv and hugs
Marlee
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
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/17/2009 8:31 AM (GMT -7)   
Welcome Charly!

I have to agree with those above! Just because you don't 'seem' to have one of the many symptoms of fibro doesn't mean you don't have it. I would disagree with this rheumy in that sleep problems is not the defining factor in a diagnosis. I am going to repost an old thread that has a list of fibro symptoms. One of our members compiled the list which has been backed by the Arthritis Foundation as symptoms that you may have if you are someone with Fibromyalgia. I hope this helps...

Chutz
Co-Moderator Fibromyalgia & Chronic Pain Forums ~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis, collapsed disk, and a few other side dishes.

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If you ask what is the single most important key to longevity, I would have to say it is avoiding worry, stress and tension. And if you didn't ask me, I'd still have to say it.
George Burns


SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 7/17/2009 8:33 AM (GMT -7)   
Hi Charly,

Welcome to the forum!

I am curious about how the Dr. determined you were not having sleep disturbances? I don't have sleep apnea or trouble falling asleep or trouble staying asleep (usually-sometimes I do wake up really early, like 4 or 5 am, and can't get back to sleep), and sometimes I wake up feeling terrific like I got tons of sleep, but yet I have fibro. Although many people with Fibro do have official "sleep disturbances" (and most of us don't get really deep sleep, like Donna said) I've never heard of sleep disturbances being the main characteristic of fibro. I've always thought it was widespread pain on both sides of the body plus at least..11 of the tender points, I believe? (somebody feel free to correct me if I'm wrong on that number)

Definitely check out the Fibro 101 thread as Sherrine said-especially the list of symptoms. If you find that you have many of the symptoms there, definitely go back to your Dr. and see if you can get him to refer you to a Rhemy who will listen to you!

Welcome again!
"The ideals which have lighted my way, and time after time have given me new courage to face life cheerfully, have been Kindness, Beauty, and Truth"~Albert Einstein


confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 7/17/2009 8:43 AM (GMT -7)   
I had a sleep study done because i never felt rested. My body tensed up every 6 minutes during the study. I only woke up once during the the night. DX with alpha-delta sleep anomoly. Just because you sleep doesn't mean it's the right sleep.


If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.

Post Edited (confused Okie) : 7/17/2009 9:56:07 AM (GMT-6)

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