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LordSameth

New member
Joined
Jul 2, 2013
Messages
2
Diagnosis
06/2013
Country
CA
State
British Columbia
Well, let's start from the beginning of my story and see what everyone thinks.

I'm 22 years old.

I guess looking back on it, I've had signs of this for awhile but it didn't become such a debilitating problem until a few month ago.

At this time I was walking over an hour to work at a call center. I was still new there so most of the pain I was feeling was credited to changing jobs. I guess the very first time I noticed something strange was wrong was during my classes when my arms were in a lot of pain, even though I hadn't been at my work station. One of my classmates was an ex-massage therapist, and the had a look and said it didn't feel like anything was wrong, but the spots where the pain was definitely gave her cause for concern. So I just rested it off on my weekend and it seemed better by Monday.

I finished my classes with some problems in my arms every now and then, but nothing too serious. About a week after classes let up, I had my first serious flare up. I felt pain in my legs, which I thought were pulled muscles from my long walk to work. The pain worked up into my shoulders and down my arms. I was struggling to get up from my chair and couldn't properly walk. I went home that day and got some rest. I went back to work the next day still a little sore, but recovered quickly.

About a month or so later, I went to work on sore legs. Even though I was sitting all day, my legs continued to hurt, and like before the pain spread up into my shoulders. I finished my shift, and someone came to pick me up. I went to her house to hang out when the pain spread even further, spidering into my hands and feet and pretty much disabling me. That night I was in so much pain I considered going to the hospital, but managed to fall asleep. The pain didn't let up the next day, so I called in sick and rested. It was better the next day.

About two months after, I was at work and again the pain started in my legs and moved up into my back and shoulders. Within an hour I couldn't move my fingers very well, or even get up from my desk. My hands began to spasm. A co-worker took me to the hospital.

At the hospital they ran tests and sent me home deeming me healthy. I was still in pain, and I was still having spasms in my hands.

I went to my family doctor for my follow up on the pending test results, which were normal. She told me nothing was wrong with me, and to just wait and see what happens and come back to her in a week.

Unlike the other times, the pain didn't go away after a couple days. I couldn't work my hands well, and couldn't work anymore. Pain killers weren't working, and my heating pack didn't stay hot long enough to provide lasting relief. Even more crushingly, I couldn't draw anymore, I couldn't grip the pencil.

On my way back from the clinic I was stopping along a trail to take pictures of a waterfall and slipped, falling off a ledge and injuring myself. I purposely skipped my next appointment because I was afraid the doctor would credit the pain to my recent fall. I waited an extra week for the bruises to heal.

Turns out this wouldn't have mattered. When I visited the doctor again, she told me it was in my head! She told me that it was due to stress because I obviously didn't like my job as most of my symptoms were occurring at work. I informed her that I enjoyed my job and I just noticed the symptoms more because I was doing more typing at work than I would at home, and because I spent most of my time at work. I asked her to sign my medical leave form so I can get myself sorted out, and she refused, saying it was my fault I was missing work and I needed to "be honest with myself". She handed me a flyer for job services and sent me on my way, completely lost and in tears.

I couldn't work anymore, and I had no doctor note to go on a leave, so I quit my job and took a vacation, saying that if I had another serious flare up I would find a new doctor.

My next flare up started in my knees and within hours I lost use of my arms and couldn't walk easily. I went seeking a new doctor immediately, and she promptly tried to send me away after looking at my medical chart, telling me there was no more they could do for me. I snapped, I've been in increasing pain for so long and NOBODY was helping me. So I raised my voice, which is something I don't do. If she can't do anything for me who can? If it's in my head, I need my head looked at, or a specialist, or SOMETHING. I begged her not to send me home with no answers, I already feel helpless enough, I can't work, I'm sick all the time. Don't send me home with nothing.

So she listened to me, looked at my test results again, and then gave me my diagnosis. Fibromyalgia "What we diagnose people who seem healthy but have pain anyways." She told me that there isn't much information on it and everyone has unique symptoms. I left the office feeling a little better that I knew what was wrong...but without answers.

I hit up the net and learned a LOT. My overly sensitive skin, sensitivity to sound. Ringing ears. Vivid nightmares. All of these can be explained by this! This was such a joy to discover like you have no idea!

I got my diagnosis a day after being accepted into my dream arts college, and I am realizing that I'm in for a tough time. I'm just starting to learn how to budget my energy to avoid the pain, and this recent flare up I know was directly caused by me burning off a lot of energy when I went to sit at my brother's bedside when he got injured in a serious accident. I can't sleep during a flare up, the spasms jerk me awake and even if they don't I have vivid nightmares. With in pain, my mind also kind of drifts off and it takes a bit to get my attention. My boyfriend is freaked out by this, but I find it relaxing and kind of let myself drift off for a bit. Forget that it hurts.

Overall I am still getting a feel for this. My parents, who are both fatally ill, have no sympathy for me. I was hoping my step-mom, who has had chronic pain for years would offer some advice, but every time I ask I get "Be grateful that-" and makes me feel worse.

My flare-ups get worse each time, with less time between. I expect it to get a lot worse before it gets better. I'm a little lost, trying to learn how to live like this, and it's very stressful. I'm now preparing to get a job, and I have no idea what I am able to do or not. I know already that budgeting energy makes a huge difference, but I still can't handle very much before I'm drained and in too much pain to function. Looks like I'm going in circles here.

Thanks for reading....if anyone did, kind of long, heh.
 

airforceaimee

New member
Joined
Jul 1, 2013
Messages
5
Diagnosis
6/2013
Country
US
State
MD
I read your story from top to bottom. I too am newly diagnosed and I know exactly how you feel just not knowing where to turn or what to do. I really do not have a lot of advice for you at this point, but this forum has a plethora of information and guidance. I just wanted you to know that you are not alone. My only suggestion is to find a Dr that understands fibro and has experience treating it. It will take a combination of drugs to control your pain and get you back to some state of normalcy. It just takes time to figure out what the cocktail will be. I am truly sorry that you do not have a good support group, but this is the place to go when you don't. I look forward to reading more from you and hearing how you are doing.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Sam,
Welcome to the forum. I would say to you go see a rheumatologist. No other doctor can help with muscle pain and the type of pain your are experiencing. There are different illnesses like RA that affect your hands and can cause muscle weakness and pain. There is lymes disease and other joint conditions. And of course there is fibro. When all other tests come back normal then fibro is considered.

You need to stop being so hard on yourself and try to relax more. Stress can make your muscles tense up and get locked up and unable to move. Try to stop pushing yourself in doing more than your body is capable of doing now. No more long walks, but shorter ones. Try enjoying nature and relaxing watching good movies that lift your spirits. Spend time with friends and talk about anything other than your illness. Think of others and this will relax your muscles. Stay away from negative people. Get your encouragement from upbeat friends. Try not worry and have faith in the future. Depression can make you weak and tired and add to brain fog.

Read here for more coping skills. Give yourself a break. It is not your fault. Know we are here to help you get through this. We have a venting section when you need to get some relief. See you around the forum. :)
 
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