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Undiagnosed...How did your fibro start?

Nov 02, 2015 1:18 AM

I am happy to have found this app to document my pain/symptoms. I injured my back a year ago at work. Since then, I was told I have spondylosis..& my back has not gotten better. About 7 months after the injury, I began having pain at an elbow joint for no apparent reason....aching, throbbing, tenderness in joint, shooting pain. It has not let up months later & I seem to be having the same type of pain in the other elbow now... & in a joint in my hand, as well as a bit in my knees....all for no apparent reason. How did your fibromyalgia symptoms start? & Has anyone had an inury that they feel brought it on? I am undiagnosed, but am beginning to wonder whats going on.

Nov 02, 2015 2:36 AM

I think i fall into the stress reasoning although my wild child days might just have caught up with me. I had one heck of a year when I was 36...engaged, dad died, got pregnant, got married, bought a house and so on while working in a hostile work environment. At 8 months pregnant with pre eclampsia they thought I was going to lose my son. I was put on strict bed rest and pumped full of steroids to help my son's lungs develop. At exactly 1 month early I went for my c section they could not get the spinal to go in and I swear after a million times they finally got it. I never recovered. I blamed the spinal for years. A few years later I was diagnosed with hypothyoidism and no vitamin d. Then hashimotos thyroid and a nodule on my thyroid. I remember my thumbs hurting and my elbows and was told it was arthritis. Finally fibromyalgia was brought up. At that time everyone had fibro and or depression and the doctors were quick to pump you full of meds so I denied it. Flash forward about 8 years and I went down with pain seizures, sporadic falling, shaking, headaches, ear ringing and so forth. I seen a rheumatologist (at age 45) my PCP referred me to and she did the pressure point test and diagnosed me with fibro. This last year has been a nightmare and it seems it is due to a lot of other issues. I wish I could say I believe I have fibromyalgia but I have so many other issues causing pain it is hard to know for sure.

Nov 02, 2015 2:50 AM

Chronic Fatigue 25 years ago PTSD fatigue went and pain kicked in and stayed for two years and then just disappeared for 18 years
Very gradual creep back until I moved house and business in a frantic 12 week 12 hr days crazy time and hit a wall FIBRO with a vengeance its been about 10 mths and a real battle at times but lately there have been some good days so I'm just waiting in anticipation of more. I take Lirica and it is great for nerve pain and panadol all day with tramadol for break through or when I overdo it.

Nov 02, 2015 8:19 AM

Welcome to our community/family Frustrated! Feel free to complain, whine, advise, or ask questions. This is a safe & non-judgemental community.

I first began with symptoms of fatigue, headache & TMJ flares, and many multiple areas of tenderness on my body. That was in '07, and I was having lots of ear, nose, & throat issues. I actually had sinus surgery in '07. But in'08 I developed pelvic pain and bladder/bowel issues, which 3 docs related as IBS. Multiple docs lab work came back with elevated wbc & ANA results, but no one checked further. All the while I was getting worse with insomnia, fatigue, labs, concentration & memory issues. In 2010 I started bleeding. I went to the GI doc who said, "Week since you aren't bleeding now there's no point in doing an exam. Come back within 24 hours if it happens again." I looked at her like she was stupid and said, "It's been less than 24 hours.". Two days later it happened again, and I realized it was vaginally bleeding. Having had both a hysterectomy & oophorectomy, it freaked me out. I called the surgeon and they saw me that day. Two months later I had three surgeons (GI, GYN, Urology) perform 5 surgeries in 1, to clean up my insides that had been causing the inflammation in my body since '07. It took a year to recover from the surgery, but many other things started happening. I was dx with fibromyalgia in 2012, sjogrens, hypothyroidism, this year. And I have a lot of other dx, but those three share common symptoms. I fully believe that inflammation & trauma (accidents or surgery) can cause fibro to happen. But I also believe in genetic connections; I'm the 3rd in my family, and 2 more possible.

Do your research on any possible dx, and keep a detailed log of symptoms: what hurts/symptom, when it started, if you took anything & if it helped, etc. Good yuck. You'll be in my thoughts and prayers. 🙏🌼

Nov 02, 2015 8:31 AM

I was diagnosed in 1992. I believe repeated trauma ( we had racehorses, I broke them for their first rides. Landed on my butt, back, head, shoulders, etc. more times than I can count) set mine off. I also think that there is a hereditary/genetic component. I was adopted and have no information so I can't make that connection, but I believe it is there. Good luck.

Nov 04, 2015 4:44 AM

Thanks to all of you for sharing. I am sure stress plays a part in the onslaught of symptoms/disease. I have had a lot of stress as well, the past few years. My heart goes out to everyone. It must be very frustrating & upsetting when it takes so long to get a diagnosis, though!

Nov 04, 2015 11:14 AM

Cearea, I do genealogy research for my family. If you're interested in maybe trying to find a genetic connection to family, to find your medical history, www.Ancestry.com now has the ability to test and hopefully match DNA. My baby sister was adopted also, with no knowledge of medical history. She's actually considering doing the DNA test. She said she doesn't want to open a can of worms, but she'd like to know if there are genetic predispositions to medical problems she should know about. It's something you'd have to think hard on before doing. I think it does cost a fee, but not sure how much.

Frustrated, sorry for hijacking. I do hope you can find some answers very soon! 🙏🌼

Nov 04, 2015 2:08 PM

I believe my symptoms of fibro started after my full hysterectomy and bladder surgery in 2002. The recovery was awful. I had already had a partial hysterectomy in 1997, when I was 22. I always worked hard physical jobs which I think played a part in my back problems too. So around 2002 I started having back and leg pain. Tingling in my legs feet and hands. Severe pain in my hips. I was also dealing with a good bit of stress and depression. In 2004 I was dignosed with 2 herniated disks. L5 S1 and L3 L4. I had lumbar laminectomy and diskectomy which relieved some of the pain, but I was still having random pain in wrists. Sometimes both, sometimes only one. Feet and ankles would randomly hurt as well as one or the other knee. My calves would burn on the sides, mostly my right leg. Everytime I brought up the posibility of fibro I usually got a blank look or a discharge. I had dozens of spinal injections, physical therapy, I had fatty tumors removed, was taking handfuls of pain pills that did nothing but knock me out and ate away at my esophagus and stomach. I was finally sent to a rheumatologist at my suggestion and diagnosed with fibro in 2008, but that doctor wanted to try me on several medications that I had already tried and had bad reactions to. He also wanted me to stop seeing pain management. He was a much older doctor and I did not think he was the right fit, but he did diagnose me. The city I am in has way too many doctors and too many of them do not believe fibro exists.

Nov 04, 2015 2:16 PM

I've tried ancestry and their DNA only gives you whether you are Irish, Scottish,etc. There is no way to track familial DNA. I have accepted that I will never know my brothers and sisters. If my birth mother is still alive, she would be in her 80's by now. This is not the lifetime for me to have blood relatives. I'm ok with that. It took along time to get to this point, but I'm good with it.

Nov 04, 2015 4:55 PM

Ancestry could link you to cousins that are on ancestry and have also taken the test, but you are right it gives you locations of where your family migrated from. But I have found 3rd, 4th, and more distant cousins I did not know.

Nov 04, 2015 5:03 PM

Maybe, but since I only have my birth mother's first and last name, that isn't much to go on. And the fact that even though by adopted parents are both gone, the judge still won't open my adoption records. So I either gripe about it or get on with it. I choose to get on with it.

Nov 04, 2015 7:46 PM

Cearea. I didn't know your checked into it. My sister has run into the sealed records too. But she's hoping to find distant cousins. Of course she isn't battling chronic conditions like we are. I can certainly understand your feeling. 🙏🌼

Nov 04, 2015 7:52 PM

Thanks for sharing that. I'm over trying to find anyone. I'm 51. I'm the youngest, so everyone's older and I don't know by how much. I have granddaughters I want to concentrate my time on. My kids and my granddaughters are my world now. No one else really matters anymore. My cousins, aunts, uncles, sister etc. they don't matter. Just my kids and granddaughters at this point.

Nov 04, 2015 8:57 PM

I've got one granddaughter and 3 step grandkids. If spoil then all the same but I'm not allowed to be like a real Granny, except to my one. She's my pride and joy. My other daughter said she's going to give me grand pups instead! Lol 🙏🌼

Nov 04, 2015 9:55 PM

I have a grandpup. She is an 80 lb German Shepherd pup who thinks my bed is the place for her to be most of the time. Her Dad won't give me real grandkids.

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