I say what the hell is fibromyalgia, because I suffered without a diagnosis for more than a decade. I will tell you my story like it is, how it happened, the quick and dirty. I hope that sharing my story will help some person validate their symptoms and really understand that this is not just in your head. I am open to anything and everything anyone wants to share.
My experience with medical intervention didnít begin until I was in my teens.
I was never sick as a child. I never had a childhood illness. No chicken pox or mumps or anything like that. I only went to the doctor for shots for school and check up for sports. I had a dozen or more physicals for various sports I played and I was the picture of health. When I was 18 I was shocked with a stage 4 cancer diagnosis after a yearly exam. I had surgery to remove infected body parts and immediately dropped into a cycle of PMS, PMDD, Cysts on my ovaries; severe abdominal pain, and nausea, pain, IBS symptoms, brain fog, and stumblingÖ fast forward 10 years later.
Over that ten years I had a series of procedures and organ removals to try to remedy or improve the symptoms I was experiencing. Internists and specialists claimed I had symptoms of GERD, IBS, Lupus, and even Lyme disease. I had gained 40 pounds by now because my days of sports were over. My bowel incontinence got to a point where I couldnít leave my house for fear that I would crap my pants in public. I was always in pain. My pain was severe from my teenage years, forward. I can remember not being able to move my legs after my tennis coach would make me run. I remember crying for a spotter on the bench press so that I didnít kill myself dropping weights on my neck. I also remember things that seemed trivial, but were clearly symptoms. I couldnít hold my arms over my head for extended periods of time. This wasnít because I wasnít fit, I was fit. I couldnít replace the rings on the shower curtain without taking breaks because my arms were so fatigued. There was this other thing that bothered me. I would cringe and hide my pain if someone ďmassagedĒ my shoulders. I would have to hold back tears if someone just brushed my arms or back in the hallways. After contact, the area would throb and hurt, like a stubbed toe. I could smell, taste and see things from far away and at heightened sensitivity. I have pain sensitivity in Fibro points 1,2,3,4,5,6 & 9,10,11,12,13,14,15,16,17 and finally, 18. I never had any problems with 7/8 points, near the knees. I had other symptoms of centralized sensitivity. I have an extremely sensitive nose. I can smell things that are very far away, outside, in a passing car, etc.
PAIN. PAIN. PAIN. My pain tolerance is so high that my body is under constant stress. My pain is shooting, burning, throbbing and persistent in my arms, legs, ankles, face, neck, shoulders and back, scalp, teeth, eyes -every day. I sleep horribly. I cannot sleep without insomniac meds. If I didnít take a sleep aide, I would never sleep soundly enough to repair my body. If I exercise I will miss work for the next two days while I sleep all day and night to let my body recover. I donít experience excessive bruising, but I do experience clumsiness, falling, loss of balance and general fog. I clench my jaw and grind my teeth all day and night. I have restless arms and legs. I get the hiccups for hours at time. Painful, loud hiccups.
I have always had headaches as an accompanying symptoms, but it wasnít until my 30ís that I started to have light and sound sensitive migraines. I almost forget that I live with constant pain and stiffness in an old shoulder injury. This is made worse by cold and wet weather (or changes in pressure). I do sit hunched over and I do have a curve in my spine from it. I cannot sit straight up (and itís not a posture thing) itís a pain thing. I have large divots in my shoulders from my bra straps.
I have multiple chemical sensitivity, including allergies to common things. My allergies are getting increasingly more serious and I am becoming intolerant of many drugs I never had problems with in the past. These medications include things like antibiotics, pain medications, steroids, opiates, and other medications. If there is a side effect, Iím going to have it plus 10.
I have dry, itchy, blotchy skin. My blood tests indicate underactive thyroid and vitamin D deficiencies. None of my symptoms of fatigue, itchiness or pain were made better by Sythtroid or Vitamin D blasts. I have Raynaud's phenomenon in both my hands and fee (blueish fingers and toes at the tips, under the nailbeds) that look like lack of oxygen.
I canít take vitamins, I canít take antibiotics, save two or three that donít cause anaphylaxis.
I have allergies to synthetic opiates and other pain relieving drugs.
NSAIDS and Ibuprofen drugs cause my stomach to bleed.
My body and life are now a puzzle. My stomach behaves like it has PTSD
My current and useless drug reg is:
Hydrocodone (as needed)
Ativan (as needed)
Atarax (daily meds taken t bedtime)
Official Diagnosis came 9/12, but I thought I had Lyme disease for the better part of this decade.
My family doctor is supportive, but I need someone to treat my Fibro as the only issue they see me for.
After 15 hours of phone calls, I found ONE doctor in the central Ohio area that is ďwillingĒ to see Fibro patients. I don't want to take pain meds forever, I want to use alternative therapies, but not fall over from pain the day after playing tennis. I want to go to the museum and out to the movies and out to dinner. My flares are currently showing ugly heads one a week or more.
i do wish you luck and welcome,
when you go see your new doc ask for a blood test for sjogrens. several of your symptoms relate to that disorder.
remember to that cancer if you had chemo will leave you with post chemo syndrome. one of my daughters has it. she is 34 and always tired, feels cruddy, aches, heachaches, the list goes on and on.
i tried to read all of your post. due to other stuff my ability to track is gone, gone, gone. giggle.
keeping my fingers crossed for you.
life does not wait for one to get back on their feet.