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Posted By : Justlivlu - 5/1/2017 7:45 PM
One year ago in April 2016, I was home for Spring Break from college and I got a UTI. Nothing super out of the ordinary for me. I had had over a dozen just within the last year and a half. I was given antibiotics, and I flew back to North Carolina. However, I still didn't feel any better. Went to Urgent Care - they said I had ecoli. More antibiotics. I finish up that second round, and I still feel miserable. Go back to another doctor. Blood in my urine. Third round of antibiotics (in a row, mind you). I felt like I had been stabbed when I went to the bathroom, so I was taken to the ER where I was checked into the hospital for three days. They couldn't figure out what was wrong, so they gave me the diagnosis of Pelvic Inflammatory Disease, despite the fact I tested negative for all STDs.

June 2016, I slipped and fell into the bathtub, hitting the back of my head on the faucet. I ended up with a concussion.

July 2016, I woke up with that similar stabbing pain in my abdomen. I go to the ER, and they check me into the hospital for another three days. They assumed it was PID again, but I continued to get sicker and sicker with each antibiotic dose. They ended up figuring out I had c. Diff.

End of August 2016, I got another UTI. More antibiotics.

September 2016, I'm back in the hospital with c. Diff.

And so began my cycle.

However, at this point, I was sent to a gastroenterologist where a colonoscopy showed I had IBS from the c. Diff. I went on the low FODMAP diet. I then saw a urologist. She had me do a VCUG - it showed reflux. She did a cytoscopy - said I had three holes in my bladder, so I had a duplicated system on my left side. She wanted to put me on daily antibiotics but couldn't because of my c. Diff issues. So she did a DCUM instead - and coated an infection into my bladder. I refused to see her again and found a new urologist who basically told me that "this was my life," which I said was bullcrap.

October 2016, I wake up one day, walk about three steps and black out. When I hit the floor, I hit my head. I wound up with another concussion. I am sent to a cardiologist. I'm told I have hypotension - my blood pressure has always been really low - and to start increasing the salt in my diet. The month goes on, and I start to lose feeling randomly. It starts in my hands. Soon it's in my toes and my feet. My right knee. My hips. My shoulderblades. My lower back. The right side of my neck. It comes and goes. It's very random.

I meet with a pediatric urologist who says I need laparoscopic ureteral reimplant surgery to fix the reflux. At this point, I've had 19 UTIs in two years. I go to a physical therapist for pelvic floor pain to prepare for surgery. I tell her about the numbness and she mentions fibromyalgia. Surgery in December 2016 goes well. Turns out I DON'T have a duplicated system, and that other doctor was just insane. (Hahaha. Ha. Ha.) They do diagnose me with Interstitial Cystitis.

After surgery, I see a neurologist. They run MRIs and CT scans and do an EEG and an EMG, thinking I have MS, and everything comes back normal. He sends me on to a rheumatologist.

The MRIs of my spine show degenerative disc disease in my neck, degenerative joint disease at the base of my spine, and that my spine is slightly crooked. He presses on my joints and has me bend this way and that way. He tells me I'm hypermobile - a lot of joints extend further than they should. I tell him about my cousin with Ehlers Danlos, but he doesn't believe I have that. He does diagnose me with Fibromyalgia. Runs some blood work. I test positive for Autoimmune Diseases but my tests won't show which one. I'm supposed to go back in June 2017 to have my tests redone.

I visit a PCP who specializes in Fibromyalgia. She puts me on Cymbalta. I have a bad reaction. She puts me on Lyrica. I have a bad reaction. After everything my body has been through, it reacts poorly to everything. As my mom likes to say, I'm a "delicate flower" now. (HA.)

In February, I pass out and hit my head again. I get another concussion.

I see an endocrinologist. I've had hyperhidrosis my entire life, my thyroid keeps showing its off in my bloodwork, and I don't have enough progesterone. She runs some more bloodwork and takes an ultrasound of my thyroid. She recommends I get an IUD to try to stop my periods in order to calm down my system from all the pain it's been in. I talk to my surgeon, the pediatric urologist, about it, and she agrees, an IUD would be helpful. She also retests my VCUG, and it looks as though the reflux has stopped. However, I've had a UTI since surgery. (Ugh.) I am still in a world of pain, maybe because of the Interstitial Cystitis, but my doctor also says she thinks the pain is uterus related.

I visit my OBGYN today, May 2017, and he tells me I might have Endometriosis. It was something doctors have mentioned in the past year. He says the only way to find out is to do another laparoscopic surgery on me. He says an IUD would irritate my system more and he does not recommend it. However, he does recommend I get the Depo shots done, but warns me they can have side effects like weight gain and changes in mood. (I've already gained 30 lbs in the past six months.) He also says that I need to see another urologist who knows more about the Interstitial Cystitis. He wants me to do these things before even considering surgery, but knowing the way my body reacts to anything new, I am scared, because once I've had the shot, it's in my system for three months, and it's not like a pill that I can stop taking. He won't do the surgery, though, until I've exhausted these other resources, even mentioning he could remove my uterus, but that the bladder pain would still persist.

I know this isn't all Fibromyalgia related, but I just needed to ask. Has anyone dealt with all of these things? Or can anyone tell me what their experiences have been with some of these conditions? I don't see a light at the end of the tunnel. I have had doctors tell me to try to go to the Mayo Clinic in Minnesota, but I'm in Idaho. I am 22 years old. I'm trying to work and I live on my own, and I am struggling so much to get through my days. I don't know what to do anymore. Please help. Thank you.

Post Edited (Justlivlu) : 5/2/2017 4:01:08 AM (GMT-6)


Posted By : Sherrine - 5/2/2017 1:17 PM
Hi, Justlivlu, and welcome! You are so young to have gone through all of this. If you have pain in all four quadrants of your body, that is the hallmark of fibromyalgia. Most have fatigue and cognitive memory problems also. There can be a myriad of other things that might or might not affect you but all you are mentioning isn't all from fibromyalgia. I will say many also have had interstitial cystitis so you aren't alone there.

I've not heard of all of these things...especially the falling. When you saw the rheumy, did they run a lot of tests? Fibro has many of the same symptoms as other illness...like lupus, MS, and Lyme disease. These need to be ruled out before a definitive diagnosis of Fibro is given. It's too easy to label someone with fibro when they aren't sure what is going on. Some of our members have been misdiagnosed so they weren't getting the help they really needed. Be sure to get board certified doctors and hopefully they are Diplomates too. Remember...50% of the doctors graduated in the lower half of their class.

Here is a great link all about fibromyalgia. It can answer many of your questions.

www.umm.edu/health/medical/reports/articles/fibromyalgia

Also be sure to check out Fibro 101...the first thread on the forum. There are links to good info about fibro and you can learn a lot there. Good starting links would be What Else Could It Be and A Thorough Explanation of Fibromyalgia. All of Fibro 101 is good so do read it.

What works for one doesn't necessarily work for others with fibro. It's more a trial and error type thing. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a prescription muscle relaxer called Robaxin that had made a significant difference in my pain. I also walk daily as a gentle form of exercise and I pace myself when doing things. I do keep a positive outlook and this has helped me tremendously also. Have lived a full and enjoyable life in spite of this illness and I developed it before you were born!

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

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : dmb124 - 5/15/2017 2:09 PM
I'm sorry you are going through this. I have had some of the same issues. Mine began at the age of 16. I had UTI's constantly. Hospitalized several times. Took antibiotics every day for about 3 years. My system eventually seemed to correct itself. I am still prone to UTI's but I only have them a couple of times a year now.

I was diagnosed with pretty severe endometriosis at 19. I was told to have a hysterectomy at that time. I refused because I wanted to have children. My doctor told me it would never happen. Thankfully, he was wrong. I tried using birth control pills to help with the symptoms. I was also basically put into menopause and then brought out. I did have the hysterectomy at 29, which was a great decision for me.

I began having loss of feeling in random spots throughout my body several years ago. Doctors believed I had MS. After numerous tests, I was told by the neurologist it was normal to have tingling, numbness, etc. throughout my body. Needless to say, I never went back to see her. I still have numb places on my back, legs, and feet but it has improved somewhat over the years.

Rheumatologist diagnosed me with hypermobile joint disorder several years ago. After a few years of going to see him a couple of times a year, and him just saying everything looks good and walking out, I found a new rheumatologist. He is the one that diagnosed me with fibro. He also thinks I have an autoimmune disorder but can't put a diagnosis with it at this time. My new rheumy has been great. He tries at every appointment to find something that will improve things for me. That is hard to find in doctors now.

The other problem that I have a lot is respiratory issues. I have gotten pneumonia at least once a year for the last 5 years. I get every respiratory illness that comes around and it seems that it takes forever to get over it.

I guess all of this is to say, you are not alone. It's hard to navigate this world but you can do it. Sometimes, there are no concrete answers for what is going on with your body. It can feel like your body has become the enemy. There are days when I just want to curl up and cry because of the pain and/or illness. My motto is "It could always be worse." I don't say that to minimize what I am going through but to remind myself, I am still very fortunate with the life I have. I have a full life with a husband, kids, pets, and work full-time. Some day are harder than others but you have to learn what works for you and most importantly, learn your daily limits (I still struggle with this).

I wish you the best in your journey. There is a wealth of information on this forum. Try some things and see if anything helps you. Sometimes, just knowing that other people experience similar things can help.
Michele

Fibro, RA, GERD, hiatal hernia, migraines, TMD, hypermobility joint disorder

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