Fibro the king of misdiagnosis!

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New Member

Date Joined Dec 2008
Total Posts : 13
   Posted 12/7/2008 2:38 PM (GMT -6)   
Fibro is very very real for a lot of people and is a terrible disease. Unfortunately like many diseases when they first get introduced to popular medicine they are either massively ignored because doctors either don't know enough and or don't believe it exists or also in a lot of cases it is over diagnosed masking the real culprit underneath. Im writing this in hope for answers and also hope that it might actually help someone.

Hey everyone my name is Jon and Im new to the forums. Im seeking help for my fiance Sarah. Medically she is a mess... We live here in Portland, OR which I now know as the central hub for fibromyalgia. Im sure you are all pretty familiar with the symptoms of fibro and the controversy surrounding it. Well unfortunately this is where the fun all started. In our experience it is an uphill battle to find a doctor who recognizes as an actual condition but on the flip side, once you find one, they don't want to test for anything else. Its the "here's a bunch of pills that make you feel like crap" game.

It is well known that fibro usually develops in adults 40+ but that didn't stop them from diagnosing Sarah when she was 15. While she displays many of the symptoms associated with fibro, some of them are simply from unknown or theorized origins. She competitively rode horses for years when she was younger but had to quit because of her deteriorating health. On top of this she did spend a lot of time in NY and NJ living there for periods of time. We don't know for certain if she was ever bit by a tick but do remember that when she was young did have what resembled a ring worm on her shoulder. In hindsight this could have actually been a tick bite. It finally got so bad that she had to finish high school at PCC because she wasn't able to attend normal school due to her poor health. Many days she couldn't get out of bed. Ever since she was diagnosed, they have pumped her full of everything from seizure medications, pain killers, anti inflammatories, and anything else you could think of. She is currently on a high dose of percocet immatrex and ultram.

The symptoms rapidly change and come and go in cycles of around 3 to 4 weeks it seems. We actually associated some of them with pms, but there are a number of them that are persistent and have been present for years which include severe migraine headaches "which are not usually directly associated with fibro", sever constant full body muscle pain, pain in her joints, severe back and neck pain which she has to constantly pop and crack, low fever, flu like symptoms such as fever, nausea and diarrhea, fatigue, abdominal cramps that cause her to double over and hyper sensitive hearing. Last one is kinda funny seeing how she used it to her advantage, she is one of the leading record producer/sound engineers in the NW. Unfortunately she has been unable to continue even that due to conflict of the need for long hours and her health. We did also always find it pretty odd that her and alcohol just don't get along. She can only have a drink before she's plowed and then gets a bad headache. The next morning looks like something out of a horror movie lol.

But then just the other day I stumbled across Lyme Disease. We have been forced to start researching everything and anything we can find. She just lost her doctor of 5 years who is a fibro specialist and have also seen nothing but the same and worse from her condition over the past years. So I glanced at the symptoms list from the lyme disease association's website and out of what was listed, these are symptoms she exhibits often and severely at times...

*Persistent swollen glands
*Sore throat
*Sore soles, esp. in the AM
*Joint pain:
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
*Joint swelling:
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
*Unexplained back pain
*Stiffness of the joints or back
*Muscle pain or cramps
*Obvious muscle weakness
*Confusion, difficulty thinking
Difficulty with concentration,
*reading, problem absorbing
new information
*Word search, name block
*Forgetfulness, poor short
term memory, poor attention
*Speech errors- wrong word,
*Mood swings, irritability,
*Anxiety, panic attacks
*Light sensitivity
*Sound sensitivity
*Vision: double, blurry,
*Ear pain
*Increased motion sickness,
vertigo, spinning
*Off balance, “tippy” feeling
wooziness, unavoidable
need to sit or lie
*Tingling, numbness, burning
or stabbing sensations,
shooting pains, skin
*Dental pain
*Neck creaks and cracks,
stiffness, neck pain
*Fatigue, tired, poor stamina
*Insomnia, fractionated sleep,
*early awakening
*Excessive night time sleep
*Pain in genital area
*Unexplained menstrual
*Irritable bladder or bladder
*Queasy stomach or nausea
*Heartburn, stomach pain
*Low abdominal pain, cramps
*Chest wall pain or ribs sore
*Head congestion
*Breathlessness, “air hunger”,
unexplained chronic cough
*Night sweats
*Exaggerated symptoms or
worse hangover from alcohol "we actually joke about this one quite often"
*Symptom flares every 4 wks.

I repeat, these are the symptoms she does have on a regular basis... In fact there were only a total of 13 symptoms on the list that she didn't remember experiencing, and those were along the lines of heart palpitations and loss of hair. So she's been dealing with these for years, remember she was 15 when diagnosed but around 13-14 when she started experiencing symptoms. She said they seemed to come out of nowhere.
Doctors have never actually even mentioned testing for Lyme disease believe it or not. She has been tested for quite a bit else. The most recent test they did showed that she had extremely low vitamin D levels and she has also been "diagnosed" with hypoglycemia via her way out of wack sugar/glucose levels.
The more I research the more freaked out I get. It seems that the systems in Oregon and Washington are utterly doomed when it comes to diagnosing and testing for Lyme disease. It has actually been documented that doctors had lied to patients in efforts to dismiss Lyme even after showing the bullseye rash and tick bite. It seems nobody will properly test for it and every one want's to simply write it off to Fibro or Chronic Fatigue Syndrome. I know the feeling, I was diagnosed with Touretts Syndrome, ADHD, and OCD when I was young. It took moving to Tampa FL to get that diagnosis.
She's just getting worse, and we are so tired of the non answers. We don't know if it is in fact Lyme or possibly something else but it does seem to fit a million times better then Fibro. This apparently is a country wide problem. If you have been diagnosed with Fibro don't stop looking for answers. It is still very possible that it could be something else and too little is known about the disease to 1 be able to effectively treat it most of the time and 2 there are a lot of things that either cause it or mimic it which are the real culprits for the disease. If anyone has any advice please share. We are desperate.

Thanks if you read all of this.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17060
   Posted 12/7/2008 3:07 PM (GMT -6)   

Jon, welcome!  We do  know your frustrations.  Fibro mimics many other illnesses.  Check out the fibro 101 thread...the second thread on the forum.  There are links to a lot of good info about fibromyalgia.  One of the links is called, "What Else Could It Be?"  I think that will interest you greatly.

Good doctors will do testing to rule out lupus, Lyme, Ms, and others before giving the diagnosis of fibromyalgia.  There is a tender point test they do, too, that helps diagnose fibro, since there is no lab test for fibro.  It's basically a guessing game but that is all medical science knows about it yet. 

We have many on here from the midwest with fibromyalgia...more so than the northwest area so actually this miserable illness is all over the place!  

My advice to you is to find a good rheumatologist.  Ask, before you make an appointment, to be sure they treat fibromyalgia, if it turns out that is what she truly has.  Look for a board certified rheumy.  They should run her through a battery of tests to rule out these other illnesses that were in the link I sent you to.  Once these illnesses are ruled out and a tender point test is done, the diagnosis of fibromyalgia is given.  

I hope Sarah will come on and ask some questions.  We have a wonderful group of people here that have good ideas as to how to live a full and enjoyable life with fibromyalgia.  She shouldn't hesitate to ask questions because that's why we are here.  

I'm glad you found us and I hope you get the correct diagnosis soon.  Hope to hear from you soon!


Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

New Member

Date Joined Dec 2008
Total Posts : 13
   Posted 12/7/2008 6:04 PM (GMT -6)   
Unfortunately we've already been down this road over the last couple of years. She has been aggressively treated and tested for FMS CFS tons of other illnesses as well. We live in the nations fibro capitol Portland OR. We have the OHSU fibro clinic here. Im not sure about the midwest but here in the northwest 1/2 of the doctors say it doesn't exist where the other half will insist that it is fibro and don't want to take their time to test for other illnesses. She has everything from the tender point test to a spinal tap. Everything that they have given her simply makes her worse. She has been a trouper and stuck with everything that has been thrown at her but there is no change in 8 years except negative ones I think the road has gone past its end. Keep in mind she was diagnosed when she was 15 years old. How many 15 year olds have you come across with fibro? Im sorry if I sound frustrated. Im just mad at the disease and the doctors for passing the buck and not doing their job. Wether its fibro or CFS or Lyme or any one of the other dozen illnesses, doctors are in and out in 5 minutes and half just simply say its all in your head! arrrghhh!

Regular Member

Date Joined Feb 2008
Total Posts : 233
   Posted 12/7/2008 6:15 PM (GMT -6)   

Hello Jon,

Welcome to our family.  I am sorry that your girlfriend is having so much illness and that she hasn't been able to find the right doctor for her.  You are right, fibro is a devatating illness that is very real and those of us here know that all too well.

Unfortunately, I have found that there are too many doctors out there who are all too willing to jump on the fibro bandwagon.  I believe that there are a great many people out there who have been mis-diganosed.  It sounds like your girlfriend is one of them.  Fibro does not run in cycles, other things like MS do however.

Let me correct you on one thing.  It is very possible for children to have fibro.  I have had it since I was 4 and am now 56.  Some symptoms of juvenile firbro are fatigue and continuiously complaining about sore muscles and joints.  Most doctors sluff this off as childhood growing pains.

I hope you both find some help and some relief for her.  It can be just as difficult for those who love the one suffering as it is for the one who is suffering.

Gentle hugs,
Fibro, Osteoporosis, OA, RA, DDD, IBS, Vertigo, Tinnitus, Carpel Tunnel, Epilepsy, TMJ,  Hypothyroidism, Familial Tremors, Spasms, Neuropathy, Trigeminal neuralgia, heel spurs

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 40405
   Posted 12/7/2008 8:44 PM (GMT -6)   
Have you checked out the lyme forum? You could probably get some information on there. You might want to do that, or just read.

We do have young adults who have fibro. It is so hard for them, to have known nothing but pain.

I hope you get some answers soon.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 12/7/2008 10:20 PM (GMT -6)   

welcome! although i am sorry you had to find us under these circumstances, i am glad that you found us. hopefully you will be able to get some information that might help sarah.

the list of symptoms that you've posted sound SO much like me. however, i have tested negative for lyme disease. i am not saying that sarah doesn't have lyme (that is definitely something she should be tested for!), but i do know it is possible to have lyme-like symptoms without actually having the disease.

a couple of questions for you-has she ever been tested for ms? lupus? i ask only because i know these are two diseases that have symptoms like those that you listed. also, does she have the "tender points" most commonly associated with fibro? i'm learning that it is possible to have fibro AND something else in conjunction. (which is what i'm becoming more convinced is going on with me, but that's another story all together!)

i truly understand your frustration with doctors. i definitely don't live in a fibro friendly area of the country, but yet once i was diagnosed, my gp was more than willing to throw tons of medicine samples at me! i have opted NOT to take any prescription drugs, in part because i have no insurance, and in part because i am highly sensitive to drugs and so avoid them as much as i can. to be fair, though, i do know that a lot of fibro patients are helped tremendously by the medications that they take, so i can't say that they are all bad. that said, i do truly understand your anger and frustration with the "shut up and take this pill" mentality that so many doctors have, especially if they aren't helping sarah at all.

i am sorry i can't give any concrete answers here, but i did want to step in and share my thoughts. i do want to applaud you for taking the time to come here and ask questions for your fiance-that shows great love and dedication! i also sincerely hope sarah is able to get a doctor to listen to her and give her some more concrete answers instead of just chalking it all up to fibro and giving her prescriptions. please hang in there, both of you, and please keep us posted on how things work out.


Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 12/8/2008 12:37 PM (GMT -6)   
Welcome Jon. I agree that Sarah needs to find a good rheumy that believes in fibro and treats it but that may not change the diagnoses. They should rule out MS, lupus, RA and lymes before giving a fibro dx. People do have multiple disorders and sometimes it is hard to tell where one stops and the other one begins. I think a lot of the frustration people have with fibro is that there is not a blood test that shows we have fibro and it is a process of elimination and we have to accept that dx after all else has been tested. I had all the tender points plus but not everyone does which makes it even harder.
Sadly, 15 yr olds are dxd with fibro, we have several on here. Actually, we are getting more and more young people with fibro. I'm all for your gut feeling that something else is wrong and that should be addressed but sometimes as hard as it is we have to accept that this is what it is and there is no cure for fibro. My husband had a hard time accepting the fact that I had something that couldn't be cured and he about drove me crazy over it in the beginning. Men feel they have to fix everything but somethings can't be fixed easily.
Good luck
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
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New Member

Date Joined Dec 2008
Total Posts : 13
   Posted 1/10/2009 12:16 AM (GMT -6)   
Well update, Sarah was clinically diagnosed with Lyme disease as of 12/31/08. I understand where you guys are coming from fully. She's had "fibro" for 8 years so trust me when I say their was acceptance of the disease and a lot of effort to aid in coping with it. Unfortunately nothing they had done for it had helped. On top of everything, with her background history and symptoms Lyme was 100 times more probable than Fibro. I mean half of her symptoms aren't recognized as even being associated with fibro, cramming a square peg in a round hole. What Im trying to address for those who live in the west coast is that politics have forced many other prognosis's such as Lyme, Lupus, and many others into a dark corner. "Every one" here has fibro and nothing else... Infact they have gone so far as to try to argue that lyme disease does not exist here. There are several documented cases of doctors losing there medical licenses for attempting to give the diagnosis and treatment of Lyme disease even after a positive blood test and clinical diagnosis. Keiser is behind a lot of the problem. To get tested properly for Lyme over here, is almost impossible unless you order the labs yourself which many shy away from considering that they are rather expensive.

To clarify about the blood tests as well. In the state of Oregon, in order to get the blood test through your doctor, they must have conclusive evidence for lyme. Only then will they order the test. There are 2 accepted tests to detect lyme disease. The ELISA and the western blot. 75% of the people who tested negative under the ELISA actually test positive for lyme under the western blot which is the reason the western blot is the only widely accepted test by m.d.'s throughout the country. However in Oregon, the only test that doctors can order under the states medical guidelines is the ELISA. If one tests negative for lyme under the ELISA the case is considered closed and lyme is "ruled out". In short, its a freaking joke. The only reliable lab in the country to test for lyme is through the lab Igenex. They are the only lab with a good record and sensitive enough equipment. Unfortunately they don't work with insurance companies and are private practice so chances are if your m.d. is ordering the test, its not through them unless specified. Long story short, if you are fortunate enough to even be tested by your doctor, chances of a misdiagnosis and a false negative are through the roof leaving it up to the patient to find it on their own... if they ever do.

Let me clarify one last thing... Fibro is very very real and millions of people suffer from it everyday. Im just saying don't stop searching if that is the first diagnosis because as we all know, doctors can often be wrong. When you are in the Fibro capitol they are more often then not.

New Member

Date Joined Dec 2008
Total Posts : 13
   Posted 1/10/2009 12:21 AM (GMT -6)   
One last thing... thankyou to everyone here for your advice and concern, I wish we had more of you in our area. I do hope the best for all of you and thankyou so much again for the support and advice!

Regular Member

Date Joined Dec 2008
Total Posts : 176
   Posted 1/10/2009 1:02 AM (GMT -6)   
OH MY GOODNESS! I HAD "RINGWORM" TOO WHEN I WAS YOUNG... I totally forgot I ever had it.. I wonder if it could've been lyme or even if it could have ANYTHING to do with why I have this now.....
You really made me think, Jon, lol.. it is nice to meet you, I'm glad you found us and we do understand your concerns for your fiance. This illness does mimic so many others.. and I have read your thread VERY carefully and I have every single symptom that she does (I was diagnosed with Fibro in Dec. '08) EXCEPT FOR persistant swollen glands (not that I know of anyway - I think you can feel when they're swollen, right??? confused ) and mentrual irregularity - actually I get it every month on time but it's been BAD since I've had Fibro, very very painful!!!!! And I get mood swings because I am bipolar though, have ALWAYS had mood swings growing up. But I can relate very well to your fiance, let her know that she is NOT alone.
I hope you get the answers you are looking for!
21 years old
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 1/10/2009 11:25 AM (GMT -6)   
I agree and I think ruling out Lyme Disease as part of the routine testing for Fibro. 

Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Heart Disease, Bi-lateral Carpel Tunnel.  (Still being tested for other disorders/or whatevers).

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