I am only 25 years old, and I feel like I have been through hell most days. I am so sorry to hear about what some of you had to go through with this hard to diagnose “non disease.” But it pacifies me a little to know that I am not alone in this. I have been to 7 different doctors (neurology, internal medicine, infectious disease, dermatology, nephrology, gynecology, rheumatology); 11 emergency room visits, and extensive researching to finally get an understanding as to what is happening. I have been tested for everything under the sun including MRI’s, various lab tests (lime, lupus, etc.), EMG, etc. All my blood work and test would come back normal. I’ve even been told that my blood work levels were “great.”
In March of this year, I developed this widespread awful body pain that would move around to different places, accompanied by a tingling sensation in my feet that eventually spread though out my entire body. Then the ringing in my ears, hair became thin and began to fall out, my lymph nodes became inflamed and up until today they still cause a lot of pain and are still swollen. I developed bruises on my legs that appeared out of nowhere, rashes, pale stool, change in bowels (shape), dry and mottled skin, terrible anxiety. The tingling sensations got worse. All I wanted to do was sleep my days away because whenever I would wake up, I would still be so tired. I had to quit my job in May because things got so bad. And with the stress from the job, I am sure this is what caused a lot of my issues.
By June, my nodes began to cause me a lot of pain that sent e to the ER several times. My vision became blurry, and everywhere through out my body would hurt. The pain would be in my feet, arms, elbows, knees (so bad I couldn’t sleep with my legs closed), upper back, clavicle, and my hips. All my bones would seem to pop. I developed terrible sinus drainage and I was sneezing a lot. My jaw bone would hurt and click, and I could hear it whenever I would open my mouth. This and the throat and ear pain sent me to see an ENT doctor. Naturally, they found nothing significant other than the drainage. The muscle twitches began and became frustrating and irritating. My menstrual flow began to change.
Now as August is almost at its end, things have only gotten worse and before I found this site, I just knew that I was dying. The tingling goes from hands to feet and then through out my body, accompanied by the muscle twitches that are started to feel like electric sensations. I grind my teeth a lot now too. Shallow breathing, severe stabbing chest pains (went to ER but my heart was great), sharp pains through out my body, confusion, delayed responses, joint stiffness (especially in the morning), irregular heart beats, popping bones, chills and nausea, migraines, and the worst panic attacks ever! I get stomach cramps, urgency to eliminate, feet feel like they are always falling asleep, and I take it that from the smoking, my veins usually go from bulging to flat or small. I read that this is because the nicotine enters the blood stream and makes it hard for the organs to repair themselves, which would also explain the sharp pains in different upper body areas. Now more often my throat seems to go numb. I have been so depressed it’s ridiculous…feeling like wanting to end my life, but I know that’s not the right way to go.
I would really like to hear someone else’s story about this Fibro/CFS to compare the symptom similarities. Also any comments on what I can do to control this would be greatly appreciated!
