Doubting Fibromyalgia Diagnosis

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

miscast
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 12/18/2009 12:29 PM (GMT -7)   
Hi, I'm hoping that one of you can track your path to Fibro, and help me out. I was T-boned in a car accident over a year ago, and have progressively been going downhill - but still functioning! I suffered whiplash and a minor head injury, with vision and visualization problems. Fatigue and pain have been my most unbearable symptoms. Every day is a wild card, but I'm not ready to accept my rheumatologists Fibro diagnosis (via tender points).
My cardiologist (I checked out fine) explained my tachycardia and low blood pressure (now at 70/40) as being due to post traumatic stress / sympathetic nervous system on 24/7 since my car accident (another Fibro hypothesis).
From what I understand, Fibromyalgia is a central pain syndrome. I can take pain pills, cut into quarters, and still get relief on bad days. Central pain syndromes, due to the disturbance of pain pathways, are believed to respond poorly to opioids.
My question is, can one be 'on the way' to Fibro, with tender points, but not there yet??? Thanks in advance...

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 12/18/2009 12:59 PM (GMT -7)   
Hi, Miscast, and welcome!  What do you mean by being on the way to fibro but not there?  Fibro affects everyone a little differently.  Some have more pain than others.  Having fibro doesn't mean you can't do anything.  I've had it for over two decades and have had a full and enjoyable life with fibro.  Rheumatologists are very good at diagnosing fibro, too.  I'm sure tests were taken to rule out other illnesses that have many of the same symptoms as fibro. 
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia and this might help you out.  There is a link to symptoms, too.
 
I have used ibuprofen with food and extra strength Tylenol all these years and have managed nicely.  I also take malic acid/magnesium supplements and vitamin D3 to help with pain and fatigue.  Many with fibro are deficient in these vitamins and nutrients. There are links about these, also, in Fibro 101.
 
I'm glad you found us and joined in.  Don't hesitate to ask questions because we are here to help you.  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


miscast
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 12/18/2009 10:51 PM (GMT -7)   
Thanks Sherinne. I discovered magnesium (only form that helps) & D deficiency when my digestive system went south (last Feb.). I'm currently taking 600 mg of magnesium glycinate (pushed with C), and a sublingual D3 (oral D3 would not help). This amount of mag. seems ridiculous, especially considering how sensitive I used to be with any magnesium supplement (currently, only glycinate helps). I have not looked into malic acid (?) yet.

My concerns about a Fibro diagnosis are multiple. Health insurance companies don't like to insure someone with this syndrome, and other 'separate' illnesses can hide under the Fibro moniker. And, as I'm sure many know, there are still so many practitioners out there that still scoff at Fibromyalgia existing at all.

Almost every disorder has a continuum. Adrenal disorders range from Cushings to Addison's, with the slow (or rapid) onset largely ignored by the medical community. I'm hoping that I'm not into Fibromyalgia fully yet, and I'm wondering if you might remember when the syndrome first caught your attention. Finding my personal onset 'cause' may be my key to a cure.

A lot of research (always small, separate studies) point to post traumatic stress as a potential cause (current or childhood related). My life is night and day different from before my car accident - I used to be an athlete, insanely healthy, with enough energy and focus to supply multiple interests.

If I'm not in deep, yet, I may have some hope of a full recovery or remission through psychotherapy (brainspotting, rapid eye movement...). I know my cortisol levels are erratic, swinging from too little to too much (adrenal exhaustion) - so, I'm betting on my sympathetic nervous system as the culprit.

Thanks for pointing me to the second thread. I'm looking forward to experimenting with anything that might pull me out of this. I'm sure that I will have more questions, and I'm so happy to have found this forum.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/19/2009 12:28 AM (GMT -7)   
Hi Miscast,

My medical history is a bit convoluted....my family (paternal side) has a genetic predispostion towards developing autoimmune diseases. The most popular one seems to be lupus, but Hashimoto's thyroiditis and celiac disease are right up there too.

I've had psoriasis, Hashimoto's and probably celiac since childhood....at least since I was a teenager. I wasn't diagnosed with Hashi's until my early thirties, but the disease was very advanced, basically end stage. My thyroid is dead. But that's not really a problem, I can just take thyroid replacement hormone.

As far as I know, those were my only health problems for much of my life. The celiac disease was just recently diagnosed (most of my life I was told by the medical community that it was "IBS", which apparently means "I be stumped").

So, over the past 18 months I've suddenly received an astounding number of new diagnoses: autoimmune hepatitis, RA, celiac disease, lupus and fibromyalgia. I have not recently been in a car accident. Tell you the truth, I seriously doubt that psychotherapy would help me with my fibro. Fibro is not a mental health issue with me....it's physical. Just as physical as all of the other diseases that are currently attacking my organs. My immune system has become the enemy and it's trying to kill me. And the autoantibodies are there in my bloodstream to prove it.

There are those who believe that fibro itself will eventually be found to be autoimmune in nature; this makes a bit of sense to me, since those with autoimmune diseases are the most likely to develop fibro. Time and research will tell.

Of course, something may have triggered the latest set of diseases and disorders in me....my current working hypothesis involves Lyme disease, since I found out just last week that my Lyme ELISA test was positive. Lyme is known to trigger AI diseases, and even mimic them. But I don't yet know if I actually have it....I still have to have the Western Blot test done.

Well, since you're in an experimenting sort of mood, my suggestion to you would be to try the gluten free diet for a couple of weeks to see if it improves any of your symptoms. I'm gluten free now, of course, because of the celiac disease, but I've only been so for about a year. A number of my symptoms disappeared almost immediately, but definitely not all of them! But I still have hope....

Many of those I've corresponded with online about celiac assured me that most or even all of their other conditions went into remission eventually (after 2 years or so) on the gluten free diet. Conditions including fibromyalgia, RA, lupus, etc. If you're interested, check out the forums at celiac DOT com.....search on the word "fibromyalgia" to find threads of interest.

Good luck to you!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 12/19/2009 8:22 AM (GMT -7)   
I took opiates for a long time and they worked well for me. But, my body is prone to building up a tolerance to medications, so I had to get off of them because I was taking way too many. I take Suboxone now, and it is good. It sounds like you have fibro, and if your rheumy said that you have fibro, then you probably do. I know it is a hard thing to accept. Your accident caused a lot of trauma, whether you realized it all or not. Fibro can come on because of trauma. It sends your nerves into overdrive, so to speak. I am sorry you are going through this doubt and confusion. I think that you should speak with either your regular doctor or your rheumatologist about how you are feeling. I wish you the best of luck. Take care of yourself. Keep us posted.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss
 


miscast
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 12/19/2009 10:10 AM (GMT -7)   
Thanks to both of you. JoAn, your story picks at my anger with some of the medical community I've been exposed to. You probably exhibited your Hashimoto & gluten intolerance well before diagnosis. Doctors used to go by the old wisdom of finding a diagnosis from their patients' words. Now, mostly, only naturopaths apply this wisdom. What has wounded me most, are the doctors who take it personally when their advice does not work - or sitting in my car crying after seeing a 'crusty' specialist who is unaware of medical advances that are at least a decade old.

SassyMyKitty (I want the story behind that name!), I'm also worried about the opiates. I'm working and going back to school. Many of my days have no room for fatigue & brain fog. I'm on adderall (insult to injury for adrenal fatigue), and Percocet. I used to stay away from everything (including over the counter pills/ coffee...), and was cleaner than a baby. If my fatigue went away, I could make friends with my pain. I'll look into suboxone - you have my admiration for taking charge & getting away from the opiates.

I have read that many rheumatoid arthritis patients develop Fibro, but Fibro patients don't usually develop rheumatoid arthritis. What I thought was arthritis turned out to be carpal tunnel and trigger finger (from the accident) - I got my Fibro diagnosis by chance (neg. on ANA test). However, ALL medical advice that eased my symptoms came from alternative practitioners ($$$). I basically stopped eating during a gallbladder attack, until I followed a safe food list, personally tailored by a talented muscle-testing chiropracter.

My brain fog, initially, was due to whiplash and head injury - now, it's either from fight or flight fatigue (ANS out of whack) OR (gasp) an autistic thalamus on strike, sending all pain signals directly to the cortex (central pain). One of the more common threads for Fibro might be conditions of overwhelming pain (IBS sounds right) that eventually change pain pathways. My biggest hope is that I'm not in central pain yet, as this positive feedback loop is difficult to exit. I discovered Bentyl, which works for IBS attacks that come erratically.

I'm sorry about the Lyme disease. We don't have this in Colorado, but we do have Rocky Mountain Spotted Fever. I have not checked this out - there's that balance of not concentrating on pain & cures (feeling & looking like a hypochondriac), and stopping progression in a timely manner.

Doctors here in Boulder wanted my gallbladder, bad, last Feb. I followed my instincts and kept it (a good move). Last winter (& still now) I avoided gluten, dairy, soy, red meat, EGGS (instant nausea) and all processed foods. My daughter has celiac (runs in my family), but I tested negative for it. Even so, with genetically modified wheat everywhere, gluten can be a sensitivity for almost everyone. My digestive problems came (I think) from the vagus nerve (ANS sick) and hormone depletion (adrenal hunger).

Thanks again to both of you. My orthopedic ran a nerve conduction test, and said that I might not be Fibro yet, because I endured the pain so well. I'm hoping she's right. I'll be back, talking like a 'born again' if the post traumatic stress therapy works!!!

sf liv
New Member


Date Joined Dec 2009
Total Posts : 10
   Posted 12/19/2009 3:14 PM (GMT -7)   
Hi, I also have AI, ( Undifferential Connective Tissue Disease (UCTD), chronic earaches & face pain, swollen optic nerve (mri showed no sign of M.S.) , ulcerative colitis, asthma (causing multiple lung infections), osteo arthris (O.A.). I was being treated for all of the above when, about 6 years ago, my rhumatologist suggested that I undergo surgery to remove the metal pins and brackets used to "fix" my O.A. hip (15 inch slit down the side of my hip/femer to get to the hardware). This left about 14 holes in my bones, so I couldn't walk for about 3 months. I was already dealing with all of the previously mentioned problems when... after the surgery I was hit with the fibro. The body doesn't really know the difference (trauma-wise) between a car accident or surgery. I was (kinda) handling all of the other stuff, but the first fibro flare was the unreal. I don't think that anyone who hasn't gone through it can image the fatigue, pain or the frustration of the fog. It is a different kind of pain. I'm on amytriptyine for the fibro which coincidentally helps the colitus, vicodin (which doesn't seem to help much for the fibro, but helps the ear and O.A. pain, rowasa for the c.u. and abuterol and advar for the asthma. I can't take the celebrex or other anti-inflamatory drugs because they cause colitus flares and bleeding. All through this I've been working full time; however, my employer found out that I was sick and is in the process of demoting me. I went to work w/a flare and I think they noticed the fog. I learned of the demotion by seeing my job on craigslist.org. Gosh, I'm tired just writing this msg.

Question: Did your problems start with a bad infection? All of my problems happened after I had a very long infection. I had a lung infection that would not go away and received several rounds of antibiotics. After months of weekly drs. visits and tests I developed a tremmer. That is when they tested me for pertusus (whooping cough) and that is what I had. Apparently, the only antibiotic that can cure it is a long course of Septra. Before the whooping cough I went to the drs. once a year to report that I was fit. I believe that the prolonged infection revved-up my immune system and it hasn't stopped since.

Thanks for allowing me to share. I hope the next year will be better.

miscast
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 12/19/2009 8:55 PM (GMT -7)   
Personally, I would think that you have had a bit of trauma! I was fascinated to learn that some people can be completely knocked out by anesthesia, and be aware subconsciously during an operation. These people actually fight back physically, and are very difficult to restrain. I wonder about the rest of us, and our subconscious level of awareness during physical distress - including when pain pills are helping us ignore our 'trauma'.

My car accident had various levels of trauma. As for infection, the whiplash caused inflammation in my cervical facets - no infections. After two steroid injections in my neck, the inflammation remains tenacious. Both infection and inflammation do challenge our immune systems, certainly create trauma in our bodies, and have a commonality of pain. Currently, my wound healing seems delayed (no carpal tunnel surgery for me!) - so it does seem that we both share a compromised ability to heal.

I do get that awful mental fog. Nothing can cut through the inability to think, kind of like a trip into semi-Alzheimer's. I've found, after my initial panic during these 'attacks', that staying calm and allowing myself time (no matter how little time is available), I can write a tighter contract than during a good day. However, I'm self employed. I'm so sorry about your job, and I do hope that there might be some recourse for you - or, better yet, that it was not your job that you saw on Craig's List.

I believe that we all have to find a space between hope, coping with what may be permanent, educating ourselves as our own medical advocate, and stepping away from 'it' when we start to feel like a hypochondriac. I am stubborn, though, about discovering my personal 'trigger'. If we have no clue about the onset of our own Fibro, how can we have hope about taming or curing it? I hope you have all of the support and love you'll need (especially from yourself) to get through your difficulties.

As challenging as changing or controlling our diets can be, I agree with JoAnn about the hugh benefits that clean eating can bring. I hope you have all of the support and love you'll need (especially from yourself) to get through your difficulties. Thanks for your story - I'm truly humbled by it.

sf liv
New Member


Date Joined Dec 2009
Total Posts : 10
   Posted 12/31/2009 3:03 PM (GMT -7)   
Greetings... I find you idea about how our bodies might be responding to the trauma of pain while our brains are blocking the pain (through pain meds) very interesting. I'm very excited about a new decade and ready to say goodbye to 2009. I'm sending good thoght and kind regards for improved health in 2010.
Liv
Happy Holidays.... hoping for a good New Year!


shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/2/2010 1:42 PM (GMT -7)   
I woke up in the middle of surgery-but I was paralyzed...couldnt even open my eyes put felt everything.Heard the sucking up of blood as I almost died on the table.But they never said anything,"shes waking up'and that was all I remebered.That was 20 years ago,,Its just like yesterday.

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 1/2/2010 1:50 PM (GMT -7)   
Well, miscast, the story behind the name is simple. I have a cat named Sassy. LOL. I also have one named Fiesty now. LOL. It's really simple. LOL.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss
 


FibroSpouse
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/6/2010 12:40 AM (GMT -7)   
Yes, good thoughts and kind regards sent out to all for a better decade!

Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 1/6/2010 3:24 AM (GMT -7)   
Hi Miscast,
I've been in 'the fog' for a few weeks now and haven't been able to really respond to your story. I started to a few times, but just got confused ! Stupid fibro :) I'm glad you found this forum. This is a really nice place to explore and discuss fibro. I don't know what I would have gone thru if I hadn't found this forum.

My fibro, I think, was also triggered by a car accident in late 2007. Like you, I was T-boned with multiple results: whiplash in all three spinal curves, concussion, vision problems, and inflamed cervical vertebrae. I remember thinking, when the truck impacted on my driver's side door, 'This is going to cause problems.' To this day my neck remains in spasm, meaning it doesn't have a natural curve anymore, and in fact is curving backward from the way it should. I had four months of chiropractic, massage, and acupuncture which all felt great. When it stopped, I felt OK for about a month and then suddenly just felt SICK. 'Something's really wrong with me,' I remember thinking. I knew it was a systemic change in my body - it was like feeling the ground shift beneath me in an earthquake. I wish I could continue that treatment but don't have health insurance and can't afford it. I thought I was losing my mind. I couldn't eat, couldn't sleep, cried all the time from pain and fatigue. (I still do in a flare!) The first time I went to Internal Medicine I could barely walk - every step felt as if I had cement shoes on and was walking thru water. And then fog swept in and I thought I had early-onset dementia (which runs in my family) and THAT freaked me out. My primary care doc also knew something was really wrong with me because we have had a 10-yr relationship, and he knows me well; luckily he is also interested in studying fibro, and suspected it immediately. He told me once that he has several patients who have been in car accidents who have developed similar symptoms as me: pain, fatigue, depression, irritable bowel, irritable bladder, more intense migraines, fog, restless leg and arm syndrome, etc. etc. Even though I've had different symptoms for years off and on, he believes that trauma to the central nervous system catalyzes the whole fibro syndrome, and causes so much inappropriate pain response. In my accident my head was jolted sideways, bruising my brain in several areas. The brain fascinates me, how the neurological and central nervous system functions interact.

Like several members here I'm also looking into natural remedies because it seems my meds have stopped working, or something. I'm changing my diet to more raw foods, juicing, and taking supplements (vitamin D3 because I'm low, magnesium and malic acid, fish oil, collagen, and green foods/algae). I've had a really bad flare for a month and I think I have brought myself out of it with juicing, but that remains to be seen! Anyway, I'm glad you found us, but am sorry you are experiencing symptoms. It sounds like you are doing your research and being proactive, which really helps. Please say hello to "The Hill" for me - I used to live in Boulder and miss it all the time!!

Littleneck
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 11:01 AM (GMT -7)
There are a total of 2,733,556 posts in 301,133 threads.
View Active Threads


Who's Online
This forum has 151270 registered members. Please welcome our newest member, marciac12.
335 Guest(s), 13 Registered Member(s) are currently online.  Details
marciac12, Scaredy Cat, mpost, Mad Martha, jabele, KatieBwithUC, pmm73, WORLD HEALING, Bobby Mac, ks1905, peanut307, Traveler, straydog


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer