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ThePainPoet

New member
Joined
Jan 13, 2016
Messages
1
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
Ohio
Hello, everyone.

I was hesitant about joining a support group of any kind, because I felt like it would mainly consist of complaining (on my part), and I didn’t want to annoy people. I finally decided that I was merely being close-minded and that I needed to talk with people dealing with similar problems that I am. With Fibromyalgia, it’s difficult. No one experiences pain the same, and symptoms present themselves in various ways. Still, I know each and every one of you must be overcoming, or has overcome, tremendous hardships that might correlate to mine. Here’s my story. Bear with me, because this might get a little long.

At the beginning of October in 2014, I was relatively healthy. I had some aches and pains, but I could handle them. Besides the yearly sinus infections, I was fine. That all changed on the fifteenth. I was invited to a pumpkin festival that day, and I was so excited. We walked around, tried pumpkin chili, and all was well. By the end of the night, I was stopped mid-run. Literally. A shooting pain radiated through my back, up my right shoulder, and into my chest. It wouldn’t go away for six hours until the doctor at the hospital pumped me full of drugs and diagnosed me with “back pain” after conducting basic tests.

I couldn’t walk, was sedated, and cried for a total of three days straight until the pain began to subside. I was staying in a friend’s room on the first floor because I couldn’t make it upstairs. Afterwards, I got sick. Really sick. I went to the doctor, not trusting the hospital, and they gave me medicine for a sinus infection. It didn’t do anything. I ended up having to go give a formal presentation at a conference in Florida for my campus job while sick with what was called “a mild form of pneumonia.” I was miserable. I went back to doctors upon my return, and they threw more medicine at me – antibiotics. I got somewhat better when the pain spread to my stomach and lungs. I couldn’t breathe without feeling pain, and I couldn’t eat without feeling sick. Back to the doctors, but they didn’t find anything. They blamed it on inflammation but couldn’t give me a reason why my lungs, intestines, and muscles were so inflamed. So I waited patiently and relied on friends to move, eat, and support me. During all of this, I was a sophomore in college. I felt like I was a baby.

A while later, with no break from the pain, I went to more doctors. I think I went to a doctor a week, each saying they couldn’t help me. One night, the pain got so bad that I couldn’t get a good breath in. I started hyperventilating. My friends just watched me struggle to breathe for a half an hour not knowing what to do before calling 911. Paramedics thought it was an overdose, since I couldn’t keep the medicine names straight in my head. I’d taken so many and for many symptoms! Again, the doctors found nothing and injected me with every drug known to man. I passed out for a solid day after that, and it didn’t solve anything.

Eventually, my knees got bad. Pain would shoot down through my right leg to my toes, and my knee would give out. I fell at least three times per day and sustained numerous bruises. It got so bad that my professors, who were amazingly understanding, began to notice. One of the nicest professors I’ve ever had loaned me a wheelchair so I wouldn’t fall as often and could get to class. I was still riddled with pain, and I soon began to resent help of any kind from anyone. I felt embarrassed being in the wheelchair, and I got tired of explaining to people that some days I might not need the chair at all. It was even worse, because I didn’t have a diagnosis. I didn’t even know how to explain it to myself.

In May of 2015, I managed to finish my sophomore year with good grades, despite people telling me to drop out because I was missing so many classes due to hospital visits and walking issues. I was determined to prove to people that I was stronger than my body was telling me I was. At this point, my mom had been asking around to see if any of her friends knew what could have been happening. She discovered a doctor who wouldn’t push us away, and we went. He was nice and awkward, and he told me that I had Fibromyalgia. That was the first thing he told me, and I was confused; it was a disease for older women, right? Not nineteen-year-old girls who are just trying to get degrees. But he assured me that it was more common than I thought, so the new treatment ensued. More medicine, physical therapy, and months of the same pain. I started getting steroid injections in my knee, so I’d stop falling. I was finally having good days! That is, until the next school year.

The first semester of my junior year rolled along, and I thought I was doing fine. I’d gone through hell, and I knew things couldn’t get worse. Never say that. In fact, don’t even think it. I got worse. I was falling, I was sick, I was exhausted. I couldn’t see the light at the end of any tunnel, and all I could do was cry. I’d cry instead of sleep, and homework just kept piling up. I’d cry instead of eat, and my friends got concerned. When I finally stopped crying, I couldn’t feel anything. Well, I felt the daily pain of Fibromyalgia and sleep deprivation, but I didn’t feel sad or happy. I felt lost. I felt like no one could understand me, even if they heard me, and that’s when I made the first cut on my arm. It didn’t even dawn on me that it could have been my medicine’s doing until I told my mom. She panicked, obviously. I wasn’t that person. I’d never done anything like that, and I was scared. I called my mom, again, in hysterics after almost swallowing an entire bottle of pills. I wasn’t thinking, and it terrified me.

I was hospitalized for suicidal thoughts for a night when the doctors didn’t let me take my medication. I quit both Lyrica and Cymbalta cold turkey and suffered for it. Withdrawal is an awful thing, but my mom helped me through it, because she knew the medicine had begun causing the depressive thoughts in the first place. Currently, a semester later, I am untreated for Fibromyalgia and all of its accompanying ailments, like IBS, TMJ, DDD, arthritis, migraines, etc. However, I take anti-anxiety medication that treats the panic attacks and insomnia I’d started having along with the depression. I’m falling again, and feel like my world doesn’t make sense. Every little thing upsets me or makes me furious, because I have hit the breaking point.

I found out that my friend died from leukemia. Another friend died from asthma, and yet another one from suicide all this past year. It felt like I wasn’t allowed to feel the pain of Fibromyalgia because so many others were feeling grief in “realer” ways. I still feel helpless, and I can’t even control my body. I’ve gotten more shots and am being referred to yet another doctor. I am tired of this all, but I’ve had a tremendous support system. I just know that they don’t understand how I’m feeling when I’m curled up on the floor or falling down the stairs.

If you read nothing else, read this: you are not alone. People who know how you’re feeling on such personal levels are out there. If you need help, please seek it. It’s there, and it’s worth finding it. Trust me.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hi Painpoet...your story is so sad and you my love are so young for all this suffering.

I understand and many will on here the complete despair pain and exhaustion bring and we all sometimes or maybe often feel we cant go on feel not understood and not validated for our daily fight and the fact that when we seem ok to others because we look ok and are doing things we are in fact trying our hardest to be normal when inside we are in pain.

Inside we become accustomed to feeling sort of frightened of the next hour or the next day because we pay for being active or fear what symptoms will just arrive on their own any time any where.

When your mind is pushed so that you feel you have no control over your health your life and can no longer be who you have been all yor life both for yourself and others its a huge strain....and you are just a baby.

I am not going to relate my life story but just be assured i understand every word of yours even though i can't feel it the way you do...but my own feelings about my own situation sound sooooo similar although i am older.

Please don't give up ...i understand being upset and furious it is because your poor mind and body have been pushed beyond any level that a human being should be expected to tolerate.

Maybe you can go back on a simple medication regime trying just one new drug for pain. In the US the attitude of doctors seems very different to in the uk where steroids which are for inflammation wouldn't be used for fibromyalgia although you mention arthritis too.

There are other families of pain medication that may help you....read around here and you will see what helps others.

We welcome you here and please ask anything or vent anytime. I hope you find some relief soon...be gentle on yourself and take care.

There are videos on youtube ..one by Haullie Volker and many others that may also make you feel less alone. I can also recommend a good boof called the first year with fibromyalgia by Claudia Marek..its really good and helps you understand all symptoms of fibro all possible treatments and drugs both natural and prescription and how best to get the most out of life.x
 

remnant

Senior member
Joined
Mar 11, 2016
Messages
209
Reason
Diagnosis
00/0000
Country
KYA
State
Central
Painpoet, judging from your rambling narration, you have undergone alot. You had to maneouvre through alot of labyrinths for a proper diagnosis. The problem is that fibro is a syndrome and it can take years to diagnose. Its good that it happened at a early stage otherwise you would be wrestling with shadows. You are at a defining moment where you have finally accepted the condition and realized that it is more common than one can reckon. You have come from far and can't afford to look back.
 

savsgirl66

New member
Joined
Mar 31, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
01/2016
Country
US
State
CO
Thank you for your last statement. I appreciate it. I have moments where I am angry at the disorder/syndrome. I have moments where I want to hide and cry it out. My bad days can be really bad, but I rarely have the luxury of giving in to them. I push through and hope for better moments/days. Thank you for sharing and hopefully we can find some support here.
 
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