I don't want to be labeled crazy....

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SheTiger68
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 11/2/2008 8:59 AM (GMT -7)   
Hi, folks, I am new here, and though I have not been officially diagnosed, I believe I will be. I see a rheumatologist this Tuesday, Nov 4. Allow me some background. It started with the exhaustion...
 
Five or six years ago, during a routine annual physical with my family doc, I told him I felt tired all the time. I would sleep for 7-8 hours a night, but wake up yawning, and some days felt like I was walking underwater, the exhaustion could get that bad. He sent me to an overnight sleep study, and that doc told me I had "mild" sleep apnea and made me use a CPAP. It not only didn't work, it made my migraines worse (I've had those since I was 13, and I'm 40 now). Frustrated with me for not using the CPAP anymore, the doc sent me packing with no other answers-yet I was still exhausted.
 
Another doctor, an internest (I don't remember why I was sent to him), looked at my test results about a year later, and asked me how long I had the Restless Leg Syndrome. I asked him why he thought I had it, since I was never formally diagnosed with it. He said the sleep study results clearly indicated RLS, not sleep apnea, but said nothing about a treatment plan. I was furious! The sleep doc NEVER told me the problems with my legs were RLS, though I told him I thought maybe I had it. I was put on Mirapex by the internest, but my exhaustion was coupled now with a horrible brain fog. I almost plowed into a couple of cars on my way to work when I fell asleep, WITH MY EYES open, driving at 50 MPH through a red light. I thought I was awake, but realized after hearing the honking and screeching tires, I couldn't account for 6 miles of my drive! I immediately stopped the Mirapex and resigned myself to being tired for the rest of my life.
 
I had been seeing the same neuro for the last 4 years for migraines, but nothing seems to work. I am on FMLA, and have to use it several times a year because I can't stop the migraines. And the neuro stopped prescribing me the only thing that got rid of the pain once it started, Tylenol with Codeine, because he was worried I was becoming addicted to it and was only seeing him to get narcotics. Okay, he would prescribe 20 pills with no refills, ONCE A YEAR. Yes, I had to make 20 Tylenol with Codeine stretch 12 months. Is that an addiction? I was still having the exhaustion, and worried this was what was causing my migraines. Neuro said no, it was hormonal, and to take Pamprin. In the last 2 1/2 years, I developed upper back and neck pain that caused a lot of headaches, just about every day, and oftentimes the headache would trigger an outright migraine. Neuro said it was probably a pulled muscle and not to worry. I complained at every visit, every six months, he said the same thing every time. Just take some Aleve, you'll be fine. More than 2 years of almost constant Aleve, and no change. At my last visit in May, when I complained again, he sighed loudly, rolled his eyes (yes, he did!), and said "Okay, fine, you win, I'll send you for some physical therapy to see if THAT helps"! I walked out of there crying and cried for several hours at home. My hubby ordered me to find another doc. By now, I was tired of seeing doctors that not only didn't help, but gave me different diagnoses of what I "probably" had (I heard that word a lot! Pain in my back and knees was "probably" arthritis, the pain in my arms was "probably" tennis elbow, pain in my neck was "probably" a pulled muscle, etc). One doctor even told me my problem was, get this, I was just an overworked mom and needed to learn to de-stress better. Huh?
 
The doctor I saw for my hit-and-run arm pain even looked me straight in the eye, and said "you probably have tennis elbow, but it's definitely not fibromyalgia, so don't even consider the idea, just put it out of your head!" I didn't even know what it was, let alone think I had it. That was almost 5 years ago. Nowadays, the pain in my arms, around the elbows, front and back, gets so bad I can't even lift a piece of paper. I finally broke down and scheduled an appt with a new neuro, knowing I had to find one so I could at least keep my FMLA for migraines. I filled out a 4 page questionnaire, and 20 minutes after walking into the room, he looked at me and said "you have fibromylgia". I said I couldn't, because I didn't think it was real, it was just something doctors said to hypochondriac patients to get them out of their office so they would stop bugging them. (My mother in law was diagnosed 2 years ago, but she IS a hypochondriac, so I dismissed it. And a sister in law, before she died unexpectedly, was diagnosed 3 years ago. I dismissed it too, since she weighed more than 400 pounds right before her death, and I figured her pain was simply due to the stress she put on her body for being morbidly obese. Her pain, however, got so bad, she bummed some pills from her brother in law, which turned out to be Methadone. She accidentally took too many and died of methadone overdose.) New neuro laughed, said it is most certainly real, and he is almost 100% sure I have it. For a second opinion, he is sending me to a rheumatologist, and a neurophysiologist for the cognitive and memory problems. He said he would see me again after those appointments and we would go from there.
 
All this time, all I really wanted was to simply stop being bone-weary exhausted all the time. After reading some of these posts and reading lots of articles on FM in the last couple of weeks, I am coming to the realization the doc might be right. On the list of 59 symptoms on this forum, I have 45 of them. The pelvic pain and pressure drove me to an ob-gyn recently, fearful I might have fibroids. All the tests came back negative, including a sonogram. She thinks I might have IBS. Now I see that is one of the symptoms. Looking back over the last 5 years or so, I can recall so, so many doctors visits for problems that the docs said they couldn't find. My worst fear recently has been that maybe I'm not really having the pain, the swelling, the muscle weakness, and the headaches are of my own doing somehow. Up until 2 weeks ago, I was afraid I was literally going crazy. I thought, what if it is really all in my head? I can handle a FM diagnosis, as long as I know for sure that there is a real problem-I can't handle being treated like I'm crazy, or a drug-seeker (which, by the way, I'm not-I don't like taking ANY pills unless I truly have to, even pain meds!), or a hypochondriac. Before being diagnosed, did anyone else doubt their sanity?
Live, Love, Laugh. We only get to ride this ride once!
 
Shannon


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17098
   Posted 11/2/2008 9:19 AM (GMT -7)   
Hi, Shannon, and welcome!  Your story is so familiar.  We have heard stories like that many times on this forum.  I'm so glad you stuck to your guns and kept hunting for a good doctor and it looks like you found one!  This does sound like fibro to me, but I'm not a doctor.  I'm anxious to hear what the rheumy has to say.
 
I see an internist for all my medical needs, including fibromyalgia.  Many love their rheumatologists, too.  You just need a doctor that believes in fibromyalgia and you work well together.  THAT is tricky, as you have found out!
 
If you haven't already, check out the Fibro 101 thread...the second thread on the forum.  I see you found the symptoms of fibro but be sure to check out the link called Doctors Respond to New York Times Article.  You will see learned doctors explaining all about fibromyalgia and that it truly is real.  You might even want to print it out and send a copy to that dumb ex-doctor of yours.
 
Be sure to let us know how your appointment goes on Tuesday.  I'm so glad you joined us and I hope to hear more from you soon.
 
Sherrine
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


Green Grove
Veteran Member


Date Joined Oct 2008
Total Posts : 2424
   Posted 11/2/2008 10:08 AM (GMT -7)   
Hi Shannon!!!

Nice to meet you. . . I'm sorry you have had such a run around with all the docs. . . I think most of us have over the years, and it does get very tiring and depressing after awhile. You will get great advice on this forum. . . There is many people that have had fibro for years, that will be able to help you understand things better :) And yes, the doc run around has made me question my sanity more than once:) Now I sometimes question theirs :) After all, they are only human too :)
God Bless!!!
Sam


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/2/2008 11:45 AM (GMT -7)   
Hi and welcome to our family. Shannon your story sounds only too familiar. My problems started with anxiety and fatigue 10 yrs ago, I was 48. My doc and myself kept coming up with reasons for the fatigue I was in peri-menopause, on meds for anxiety, under a lot of stress and doing too much. At that point I wasn't having enough pain to even mention it to the doc, I had back problems for years. Like you the only person I knew that said they had fibro was my SIL and she sure didn't seem to have the fatigue I had so I really didn't know anything about it. I thought it was a few aches and pains. Finally, I told my doc something was going on so we started testing and it took a long time before I went into a flare and my whole body felt like it had been beaten with a baseball bat on a day I had an app with him. He did the tender point test, which I had no idea what he was doing but I knew he was hurting every part of my body and I kept grabbing his hand. He asked me if I knew what fibromyalgia was and I said not really and he told me to go home and research it. I was devastated when I started researching it and realized that was what was wrong with me and there was no cure. Yes, I wanted a dx but something I could take a few pills for and it would be gone.
 
I was lucky that I had a doc that believes in fibro 100% and as soon as the pain developed it all clicked for him. He did send me to a rheumy to confirm but I fired him and have found a new one for my osteoarthritis that also treats and believes in fibro. Before I made an app I asked if he treated fibro and MPS (myofascial pain syndrome). It doesn't matter what kind of doc you go to as long as they believe in fibro 100%.
 
You are not crazy, this is for real. I'm sorry so many people have to be made to feel crazy before they find a doc that believes in fibro.
 
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


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 11/2/2008 12:00 PM (GMT -7)   

Shannon,

Welcome to the fibro family.  Your story sounds all too familiar. eyes   So many of us have had to play musical doctors, been accused of being drug addicts, or have been called hypochondriacs.  I have gone to doctors since I was 15 years old (I'm almost 37 now) and been dismissed as depressed, crazy, drug seeking, or just needing to lose weight.  Finally, I found a doctor who would listen to me.  I was seeing him for chronic back pain when I found out that my sister had fibro.  I never really knew what it was, and when I mentioned my similar symptoms to my doctor, he suggested bloodwork.  I might also have Lupus, but after tons of visits with him and a rheumy, I was finally given the wonderful dx of fibro.  LOL-my sister and I have never had anything else in common, so why this? rolleyes

After years of begging from my family, I just moved back home to SC, and I'm trying to live with my parents again.  I was on CA state disability, and I foolishly thought that every state had it's own state disability (it has nothing to do with Social Security).  Now, I am in SSDI/SSI limbo.  Anyway, I do have a new doctor (well, he's not really new, I saw him when I was about 13 years old) here who seems to listen to me and is willing to work with me.  He told me that he would help me try to get the Social Security.

To finally answer your question, yes, I doubted my sanity.  In fact, I usually doubt it on a daily basis.  I think I'm going crazy from the fibro fog, and my mom has a hard time understanding my pain and the "system" of Social Security.  I still find that strange considering she is a nurse who deals with painful patients.  But, I really think she must be in denial with me.  That's what I'm telling myself, anyway. sad

OK, I really hope that you'll feel comfortable enough to talk about things here.  We truly are a family.  LOL-sometimes we may annoy each other, but at the end of the day, we'd do anything for each other. wink


FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


SheTiger68
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 11/2/2008 12:21 PM (GMT -7)   
You all have been so helpful, even if I get the diagnosis, I know I'll be able to handle most of it, as just knowing is such a huge thing for me. I do worry, though, that since most of my symptoms have begun to snowball, basically, in such a short period of time, that perhaps they will get worse and worse over a short period of time. I used to have such a high pain threshold, that even after lumbar diskectomy in 2000, where my herniated disk was so bad they had to cut out the left half of two vertebrae and replace it with artificial bone, I was completely off pain meds, voluntarily, 5 days after surgery (which ticked off my surgeon to NO end, lol!!!). I wanted to feel the pain so I could guage my recovery. Now, though, I can get a burning pain in my hand and I'm curled up like a baby on my sofa, begging for the heating pad, lol! A big concern I have is that while my job is not too physically demanding (I work as a telephone customer service rep for an insurance company) that fibro would complicate things. I am already having problems hearing in my right ear, with hearing loss and tinnitus, so I can only use my headset in my left ear. I should take out insurance on it the way I protect it, ha ha ha! But sometimes it also hurts to type, which is a huge part of the job, and some days just sitting hurts. Once in a while I'll get pain in my hips or lower back so bad I am literally jumping around in my chair. In the last 6 months, I have gone home in tears almost a dozen times for one pain or another. I don't want to have to go on disability, since I love my job and have worked hard to make Senior Representative, but now can't imagine doing this with this kind or pain, or worse, for the next 30 years. When I told a coworker that my doc thinks I have fibro, she said, "Really, are you in that much pain? You don't look or act like it". How is one supposed to act on the job when they are battling daily pain, but don't want to worry their bosses? And if it is FM, at what point should I inform my superiors? Is this something that would be covered by FMLA?

Kelly, what part of SC? I was an army brat, so my parents moved around a lot, but after my father retired, I lived in Charleston for many years. I do miss it, especially the old parts of the city, where the Battery and Old Slaves Market is. Have you ever been to the Spoleta Festival? If you're going to have to fight this, SC is a gorgeous state to do it in. I'm jealous, lol!
Live, Love, Laugh. We only get to ride this ride once!
 
Shannon


leemadd
Veteran Member


Date Joined Sep 2008
Total Posts : 532
   Posted 11/2/2008 12:24 PM (GMT -7)   
Hi shannon
Welcome .
Lee Ann

Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 11/2/2008 12:48 PM (GMT -7)   

Welcome Shannon!

Yes, I questioned my sanity!  I even asked my physical therapist if I was losing my mind.  She said definilty not and told me about fibro.  I had never heard of it and really wasn't sure I had it.  It took two more years before I could get my doctor to take me seriously.  I heard the same as you "your a mother of three small children, of course you are going to be tired".  My FM started with the fatigue and progessed to severe brain fog and pain.  I'm now on meds and feeling better.  I think part of the healing for me was hearing that I wasn't alone in the way I was feeling.  I know I'm not crazy!  I do believe in fibro and it pains me to think that there are so many people out there that (especially educated people like doctors) don't think it's real.  I don't like having attention directed at me, I usually suffer in silence, so there theory that I'm a hypocondriac doesn't make sense.  Educate yourself and listen to your body, you are not crazy!

Meggie


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 11/2/2008 5:06 PM (GMT -7)   
Shannon,
 
95% of the people I meet who have been to SC always bring up Charleston.  I have been there before, but I live in the complete opposite part of the state (Nothwest part, very close to the NC line) in Spartanburg.  No one I've met knows where it is.  But, when I was choosing moving companies to move back here, out of at least 50 different ones, I chose the one with the guy who used to live here.  Talk about a coincidence! shocked
 
SC is a beautiful state.  After being in CA for 8 years (and in GA for almost 7 before that), I am in awe of the leaves changing colors and the crisp fall air.  I always hated Xmas in CA.  I'm sorry, but what is "Christmasy" about 75 degree, sunny weather?  It's not like it snows 10 feet here (it doesn't snow much at all), but at least it feels like the Xmas I had growing up. :-)
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


Smiley123
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/2/2008 5:38 PM (GMT -7)   
Hi Shannon,

I too, went through the doctor search. My GP does listen to me and did send me to a rheumy. He took some x-rays of my hands and knees, returned to the examining room afterwards where I was waiting and literally tossed a pamphlet on fibro at me, told me I had fibro and walked out of the room, seemingly annoyed! I asked him to wait and asked what fibro was.... he said he didn't treat that and was releasing me to my doctor! I was at a loss for words at that point and he walked out -- he made me feel ashamed and dirty. It was awful. I'm glad your doctor believes you. He is absolutely right to send you to a specialist so he can rule out RA or something else. Then you can begin your journey toward relief. I do believe fibro can be managed -- I haven't found the ideal treatment for me yet, but I am working on getting there! I wish you all the best,

Juie

Leeriesan
Regular Member


Date Joined Oct 2008
Total Posts : 90
   Posted 11/2/2008 9:11 PM (GMT -7)   
Hi Shannon!
Like everyone else has said - the story is familiar - I went through a lot of doctors before I found one that listened to me. I had a doctor tell me my pain was because I babysat kids - didn't bother even looking at me - just said "oh you work with kids? that's what it is." I had a doc put me on Xanax when he ran out of any other ideas of what to do with me and another was convinced my chest pains that brought me to my knees in pain was just acid reflux and had me on every different form of nexium you can think of for an entire year. I'm so sorry for the trials you've had to go through but hopefully now you have a doc that will listen to you and understand what you are saying and you will be able to get the care you need. These forums are a great help too. :-)
~~Asthma, Reactive Airway Disease, Allergies (to nature), Fibromyalgia, Kidney Reflux Disease, Chronic Migraines (docs currently working on those), Generalized Anxiety Disorder, Depression, Restless Leg Syndrome, and a few others that remain undiagnosed because I don't feel like being on anymore medication than I am already on. ~~

~~ I'm 21 and trying to be optimistic~~


SheTiger68
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 11/4/2008 9:34 AM (GMT -7)   
Well, I saw the rheumy today (and he had no real bedside manner, lol!), and he confirmed it's FM. He has given me scripts for Flexeril and Mobic, and is sending me for 4 visits of PT. Then, I have to see him for a follow up on Dec 16. He also said he believes I have a pretty bad case of osteoarthritis in my left knee (it sounds like Rice Krispies every time I move it, ha ha!) and feels I should see another doctor for testing. He feels I would benefit from knee replacement surgery.

When he confirmed the diagnosis, I asked him what was next-he handed me a pamphlet, told me to take my meds, and we'll talk more at my follow up. When I questioned him about the "fibro-fog", he said that according to the report faxed to him by my neuro, that is why I am being sent to a neuropsychologist. Apparently, my neuro felt so strongly that it was FM, he was confident the rheumy would diagnose it, and the neuropsychologist will do further testing to determine the extent of the memory and cognitive problems and begin a treatment plan for me. I never even knew that there was such a doctor until I met my new neuro.

Thank you, all, for jumping in and providing me with such vast information and encouragement. When I first walked in there, I was crossing my fingers in hope it wasn't FM, but by the end, when he told me about the diagnosis, I was actually relieved. Now I know what demon to try to stare down, lol!
Live, Love, Laugh. We only get to ride this ride once!
 
Shannon


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/4/2008 12:51 PM (GMT -7)   
Shannon I'm glad you got a dx at least. These doctors make you want to scream.
 
Kelly, one of my grandmother's family came from Spartanburg and that is the one place I have not gone to do genealogy research. We are taking a winter vacation this year so maybe we will make it down there. Our oldest son lives around Ft. Bragg NC.
 
Wouldn't it be strange if you are related to me. turn Do you know any Cannons, Bryants, Dillards or Wyatts??? Geez, you have nothing better to do you can go do some research for me, do you like cemeteries??? smilewinkgrin
 
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


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 11/4/2008 6:16 PM (GMT -7)   
HI Shannon,

Glad you are here.

I just wanted to tell you about the cognitive testing. Do not worry about it. Even with my fibro fog, not having my regular meds for 3 days and my exhaustion, I tested in the 90th percentile. When the counselor read my statistics I saID "really?"

lol I could not believe that this brain functioned so highly.

I just visited a pain specialist who seemed to think I was an ignorant drug seeker. She sucked.

Take care.

Donnaeil

SheTiger68
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 11/4/2008 7:48 PM (GMT -7)   
Thanks, donnaeil. What kind of tests get done? In my neuro's office, he tested my memory by having me repeat 3 words, then he did all of the rest of the tests, and at the end of my visit, he asked me if I remembered the words he gave me. I could only remember one of them, and he had only given them to me 15 minutes before. I felt like such a dork, lol!
According to some paperwork I got in the mail, for my visit with the neuropsychologist, the office visit will take approximately 4 hours. Geez, that's gonna be a long day, lol!
Live, Love, Laugh. We only get to ride this ride once!
 
Shannon

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