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Suffering in silence

Nov 12, 2015 11:40 PM

Hi, I'm new here but needed to vent a bit. I've been in pain for 30+ yrs now. In the beginning, the docs all thought I was trying to get narcotics and i was told the pain is all in my head. 13 yrs ago I was finally diagnosed with fibro. I tried to tell every doc I saw that I just don't want to hurt. If they told me that standing on my head 6 hours a day would help, I'd do it. Still, nothing they prescribed helped. On top of the pain, I have horrible IBS which they say that is from the fibro. Ugggg.

Then about 3 years ago the bad headaches started. I started loosing my eyesight and my hearing on the right side. After 3 MRI'S, 6 spinal taps, and 3 catscans, they found that I had fluid on my brain. What the what??!!! Really??!! They shoot horses for less. Lol. I keep telling my mother that I'm getting rid of all my ailments while I'm young, so I can live when I get old. :)

So we did surgery to relieve the pressure on my brain and eyes. I have a lumbar shunt and a horrible scar on my back. I tell my students that I'm bionic. :) I'm still healing and have terrible spasms in my lower back now which causes restless legs constantly. I feel like from my waist down I'm constantly twitching. However, I can hear and see.

Still, nothing the docs prescribe helps. I'm meditating and doing some yoga in hope of finding peace in the pain. I guess my vent is that I don't think anyone should have to "get used to the pain"....or have to "learn to live with it". I mean, we put a man on the moon, we can clone a sheep, they found a cure for HIV...I don't think I'm asking too much. Just one day...one hour...one moment of at least level 5 would be phenomenal. I'm in the Orlando, FL area. If you have any suggestions on docs, I would be so grateful. My company just moved me here and I'm unfamiliar with docs in my area. (Originally from Louisianna, bu th my company has moved me all over the nation. In the last 10 yrs with them, I've moved to 8 different states.)

Thanks for letting me vent yall. I appreciate the ear and wish peace, happiness, an pain free to all.

Nov 13, 2015 5:27 AM

Welcome to the family. Sorry you've been dealing with so much pain. As I've been told, this is the best place to vent where people understand you. It's hard to explain to people about your pain. My husband is just recently getting the idea of how much pain I've been in past few months, as it's been getting worse. I have appt with neurologist Jan 6 and rheumatologist late Jan. Really hoping one of them can figure me out. Good luck to you.

Nov 13, 2015 6:34 AM

CallmeJen, Welcome! I used to live in the Orlando area! I don't have suggestions on pain doctor but I do on a PCP she is awesome she doesn't pull any punches and tells you like it is and will get to the bottom of your problem. Her name is Julie Ferguson. I had her for 10 years until my then husband and I moved out of state. I will look up her office information for you and post it.

Nov 13, 2015 6:36 AM

@Moparmom...thank you so much for the information. It is much appreciated.

Nov 13, 2015 6:48 AM

Dr.Julie Ferguson

Phone: 407-261-2962

Address: 9864 University Blvd Orlando Florida, 32817

Board Certification's

- Family Medical
-NCQA Certified Diabetic
-NCQA Certified Heart/Stroke

Hope that helps! Like I said I had her for 10 years before moving out of state. I'm picky about who I have for a doctor.

Nov 13, 2015 12:41 PM

First of all, I honor your strength!! I've been hurting for 20 yrs now and after 15 yrs of undignosed pain I had a fusion and we'll still in pain. But my 18 yr old daughter just found some horrible news. She lost her perifial vision in the 8th grade at 13 yrs old due to a concussion.for the past few months she's been having sever headaches. She also was saying for the past few days it's very blurry in her right eye, so I finally got her to go to the er. They did an mri of her brain and eyes. Well her optical nerve is horribly strained which it going to cause her to lose eyesight in that eye first then the left will follow. So I ask "what can we do? " he tells me nothing. We don't have a fix for this. What!?!? With modern science you say nothing!!!! :(

Nov 13, 2015 12:59 PM

Welcome callmejen, vent away! Noodles13 I am so sorry about ur daughter! Get a 2nd and 3rd opinion, no one doctor knows everything. About 5 years ago my daughter started getting terrible headaches, the Drs all brushed it off as migraines. She went in for an eye exam, the ophthalmologist found she had increased intercranial pressure and was losing eyesight. Within days we were in a neurologists office. Long story short she had a rare condition called pseudo tumor cerebrei. If it hadn't been caught she would have lost her sight and possibly her life. She got treated, and no longer has the disorder, she has permanently lost some peripheral vision but it certainly could have been worse! That experience has taught me to be more proactive and to never allow a Dr. to just pat me on the head and send me on my way.

Nov 13, 2015 1:16 PM

Thank you so much for telling me ur story. I agree we can not let one Dr determine our futures especially our children's! If I would of gotten a second opinion yrs ago I would be in the shape I'm in now anD boy I have lived and learned!!! We have an appointment with a leading optimologist on Monday and we will go from there!! Fingers crossed!!

Nov 13, 2015 8:51 PM

Welcome to our family community CallmeJen? This is the best support group I've ever known. We all differ but we all understand. I'm sorry for what you've g gone through. I hope and pray you can get a good PCP, pain doc & rheumy doc. Then hopefully you will have a method of treatment that works for you.

Noodles13, I'm so sorry to hear about your daughter. I agree with Iann4963 about getting a 2-3rd opinion. Maybe that doctor couldn't help, but someone should be able to help in some way.

I'm praying for you all! Have a blessed weekend. 🙏🌼

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