New Here... my story, and Wondering if Fibromyalgia is a "symptom" and not a cause?

Hi all,

I wanted to get some input from you guys about what direction I should go in and also share my story.

I'm 30 years old and was diagnosed with FM about a year ago by a lovely rheumatologist.

about 4 to 5 years ago my body started to change and I began to feel unwell without knowing why. Worried my life away and went to dozens of doctors. I'm sure many of you can relate. I could go on and on but I'll list my main "symptoms" here from start to finish:

-Deep aching pain in my hands (that eventually went away)
-Ringing in my left ear
-In and out blurred vision and eye pain (eventually lessened)
-Balance and slight coordination issues and "swaying" (comes and goes)
-bouts of complete and utter all over muscle fatigue (occasional)
-"pinches" and bee stings of pain all over (thankfully this has lessened)
-significant hair loss
-Food and medication "sensitivities", basically my body kicks and screams when I feed it the wrong thing (constant)
-Shakiness (occasional)
-Cognitive issues (confusion, trouble speaking, writing things wrong, trouble articulating thoughts by speaking or writing, feeling disoriented) [this comes and goes]
-(probably connected?) menstruation issues- prolonged spotting before and after period, change in period.. heavy or light.. just altogether strange
-long lasting headaches (occasional)
-Unrefreshing sleep even when I sleep a long time (occasional)
-feeling stiff (sometimes)
-One bad actual UTI issue (and then feeling like a had a UTI even when I didn't for months after)

Long story as short as I can manage: I started feeling crappy in my mid 20's, couldn't figure out why, I was consumed by it and my hypochondria blew into full-swing and I was pretty much feeling like I was dying and lost my hope for my life. I was super depressed and anxious. Then last year, thinking I had Lupus, I saw a qualified rheumatologist listed under a Lupus support website that was a qualified doctor on the subject of Lupus that the group referred to. He didn't think I had M.S. or Lupus which were my main concerns along with others. Did a lot of tests and the only thing they came up with was low vitamin D and he diagnosed me with FM which actually was the best thing in the world for me because that meant that I wasn't necessarily going to die, and that maybe I could learn to manage it if indeed FM was all I had. For me the words Fibromaylgia were music to my ears because now I had a cause of the myriad of issues that worried me, and it began to make sense. For instance, if I felt a sharp pain in my rib, I could just say, "oh.. there's that crazy FM again" and not worry all night was dying of a heart attack, you know?

Relieved of much of my fear, I started to live my life again this last year. I started working more, picking up more hours, and pushing myself which has been great. However, I pushed myself too hard this summer commuting to another city for work every day and since then I've felt pretty crappy and got two major migraines that hit me like a ton of bricks. :/ So, after NOT thinking about illness or fibromaylgia a lot, I have to think about it again because of how I'm feeling. And I'm really wondering if I really have many answers at all after all of this or whether what is going on with my body is still "unknown". Here is my tentative theory:

I believe that FM is like a "symptom" of imbalance in the body. It surfaces as fibromayalgia symptoms, but it is or has been caused by a source elsewhere in the body. And perhaps it is not caused by the same source for all FM sufferers?

Because of learning about health anxiety and hypochondria, I have learned that when I assume something, I am often wrong. I'm a bit more ration than I once was and am aware when I may be short-sighted and illogical. So I may be quite wrong about the following. Still, I have been suspicious that a bad case of serious food-poisoning is what has set off this health imbalance for me in the first place. In 2006, after I ate a spinach salad at a restaurant, I urinated a toilet full of blood, and was nauseous for a day or two. Nausea carried on for weeks and I had a sharp pain in my side for a week or two after that. Pieces of my hair broke off too. My family thought I was a hypochondriac, that it was just a UTI or something, but that was the same year people died from food poisoning and hundreds were sickened by spinach tainted with serious strain of E-coli. I may be wrong, but I do think that there is a chance that meal sickened me, impacted my body big time, and that I have been living with the consequences since....

All of the changes I listed above happened mostly at once and a few in the coming year or two after, many in the months after I had that meal. My period changed, my vision changed, I became chemically sensitive to things and food sensitive, I became off balance, and things began to slowly break down.

It appears to me that my hormones are a big factor in all of this, but I'm not sure if that is a 'cause' or 'effect' or both. My period went from predictable my whole life to suddenly strange; sometimes I spot for 13 days... yet my thyroid tested normal the many times its been tested. My GYN has no answers like many of the docs I see.

Besides the rheumatologist, I have not had a good experience with western medicine since these health issues. They don't seem to understand me when I tell them I'm scared to take a medication or do a test. The medicine and test may have negative side effects for me. I don't want radiation. I don't want chemicals. I just want to feel better, have less headaches, rule out serious things without taking away from my health or exposing me to anything that will make my insomnia worse.

I've been considering going to a naturopath but I'm not sure if this is the best route or what. I feel like there is a source of my problem and that if I can find the source of the imbalance, maybe I can lessen my fibromaylgia symptoms, you know what I mean? Like if it boils down to some hormone or nutritional deficiencies, maybe I could better manage my condition. I'm not looking for a cure, but it would be nice to know why my period has lasted for 12 days sometimes or why my eyes feel as if they are bulging when I eat some foods. I feel like there should be an expert out there somewhere that could help me put the puzzle pieces together, and maybe if they knew I suspected food poisoning from a particular strain of E-coli that could help? Then again it may have had nothing to do with it, (and it was never confirmed since I didn't have tests) but this is my best guess for what "turned on" my FM suddenly after 2006. Guess I shouldn't assume, with my track record. (To be honest)

Thanks if you read any or all of that^

Any thoughts, ideas, recommendations?

You can also feel free to disagree, I'm open to all thoughts. Thanks! :)

Hi, Lady, and welcome!  Everyone here has a different story how they think they developed fibro.  Some were born with it, some were in an accident or went through a traumatic event.  Some were sick, like you, too!  Me?  None of the above.  I was watching TV and the pain started in my toes and worked up my body in a 45 minute period...and that was 25 years ago.  The researchers think this is a neurological illness so that's why the doctors are giving out antidepressants and anticonvulsents. 

 

Fibromyalgia is called a syndrome because they don't know what causes this yet.  It's not all in your head.  This illness is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization...just to name a few.  But, there are still doctors out there in the Dark Ages about this illness.  You need to make sure that whatever doctor you go to does treat fibro patients. 

I have a board certifed Internist and also a board certified Rheumatologist for my doctors.  My Internist generally takes care of everything for me...including fibro.  We have a good relationship and he wasn't offended when I turned down Cymbalta, Lyrica, and Savella.  He understands where I am coming from.  He knows I do a lot of research about things and I do know what I'm talking about with my various illnesses.  Knowledge is power...no matter what illness you have.  We all need to be our own advocate when it comes to our bodies.  No one knows our bodies better than we do.

 

I don't believe fibro is a symptom of something else.  It's its' own entity...just like other illness.  How it affects each of us can be different.  I have no problems with foods but others do.  Keep a food diary and if you see that your eyes feel like they are bulging, check to see what you have eaten and mark it.  Next time, this happens, check your diary again and you will be able to see what could possibly be causing this sensation...if it is caused by food, that is.  Some are sensitive to gluten or caffeine or dairy products, etc.  Most of us don't have that problem.     

 

I'm like you.  I don't want to put chemicals in my body if I at all can prevent it.  But remember, herbs can cause your body to react in a bad way, too.  You have to be very careful.  Mixing some herbs can cause a lot of problems.  I do take some prescription meds for other problems but only one prescription med for fibro....a muscle relaxer called Robaxin.  That has made a huge difference in me and I don't have side effects from it either.  I also take ibuprofen with food extra strength Tylenol, malic acid/magnesium supplements, vitamin D3 supplements, and an alternative pain product called Curamin.  I also pace myself, do daily stretching exercises, and daily gentle exercise like walking and swimming.  All of this helps me be in control of my pain and fatigue. 

 

I also have myself on a sleep schedule.  This has helped me get the rest I need.  The muscle relaxer really helped with that, too.  No more waking up because of muscles going into a spasm.

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links for you are called Symptoms and A Thorough Explanation of Fibromyalgia.  You most likely will see yourself there.  Another good link is called Doctors Respond to New York Times Article.  Here learned doctors explain what they are learning about this illness to people who thought it was all in our heads!  There are links about some of the supplements I take and how they work in the body, too.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

Sherrine