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erintheinvader

New member
Joined
May 11, 2015
Messages
1
Reason
DX FIBRO
Diagnosis
04/2015
Country
US
State
WA
Hi guys, my name is Erin. I'm 21 years old, recently graduated from college, and am working at my doctor's office. For the past few months I've been feeling fatigue, all over body pain, dizziness, heat flashes, and an increase in migraine frequency. At first I thought it was Graves Disease, as that runs through my family. After much testing, and no pain relief, I was diagnosed with EDS (a connective tissue disorder that causes pain in joints) and Fibromyalgia, and my cortisol (the stress hormone) levels are too low, causing my moderate anxiety to skyrocket and become quite severe.
Although I'm relieved that I don't have Graves Disease, the daily pain I feel from both the EDS and Fibromyalgia is really sacking the life out of me. I walk around with the stiffness of a 60 year old woman, but I'm only 21. I never have the energy to do what I could in high school.
Yesterday while I was taking care of my horses, one of them escaped and I had to chase him down to get him back in his stall. I've been a runner my whole life so I didn't think anything of it, but I woke up this morning and everything hurts. It took so much effort to get out of bed. It makes me feel so crappy, everything feels like it's breaking down and even the slightest stretches hurt. I feel hopeless in the fight against this. It seems like there is almost nothing I can do, everything is so sensitive. :cry:
 
Sorry for all the pain you live in. Have you gone to an EDS support group. I'm sure they are out there. I was on another group for a long time, and they had an active EDS section. Keep searching. I'm a stiff old lady, stiffer with aging....but I deal with bodywide OA and Fibro and hip replacement mess. Do look into EDS groups. We all try to help each other. J
 
I'm also 21 and have had a chronic headache for a year now. I used to work in a dental office as an assistant and got let go bc of my distraction from pain. Being like this has really taken a toll for what I can do rather it's a job or exercise. i went for a run about 4 weeks ago and it gave me a massive headache for weeks. So I understand what it's like being 21 feeling 60.
 
Welcome . It's such a shitty thing to have at any age. I might seem a old fart at 42 but I can tell u I wish I could run jump I just feel like a middle age lump.
Now after the self pity bit some help.stretches really do help before bed for me.think like a cat and stretches out like they do.they can be any sort you like really. Next of your on pain meds take them asap after getting out of bed or if getting out of bed is hard take them while in bed and wait for 30 mins before u get up. Hot baths to showers get some olive oil and rub your feet legs arms anywhere u can to help get them mussels moving.hope that helps
 
Hello Erin,
I am 62 and have a bone marrow disorder and it is nothing that can be treated at this time. I had 3 painful bone marrow biopsies in hopes I would get answers why I get so tired and hurt all over. They kept telling me that it is nothing and I got the feeling they thought it was mental situation causing these symptoms. Well about a year ago my family doctor sent me to a rheumatologist to get checked out and blood work. It was like finally after some blood work and a Complete head to toe exam. The doctor said you have Fibryomyalgia. I wanted to shout on the top of a mountain that someone finally understood my painfull days. My next question to the doctors was what can you give me clear it up and get rid of it. Well as you have also researched it's not like a cold that you get over it. It was like someone lowered the hammer on me. I told myself I will survive this and do everything they tell me and my life will be great. Well that didn't happen, after some counseling, trying physical therapy along with several months of trying all kinds of medications I finally feel like my combination of antidepressants and nerve pain drugs along with a narcotic medications I can function enough to take care of my daily life, but not much else. I did quit work two years ago, applied for social security disability and after almost 2 years of being rejected I had my hearing a currently approved. I was lucky that from age 60 until now I was able to barley survive on a small pension I had. If I didn't have that to pull from I would have lost my house.
I can not imagine being as young as you are and go through it so young. I am single, no children just older brothers and sister who were there for me.
Most of my meds keep me in the Fibro Fog and even walking some days is a task.
I live in Michigan and this winter was hell. I use a personal electric blanket to warm myself in many days. Also in the past year and a half I went from a 33 to 38 waist.
We'll ever want to chat let me know. I hope you have someone close to you for support.
 
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