so you want to know a little about me...

I just joined Thursday night (2/28) and here is where I'm at.

I’m 19 and since 9th grade (5 years for the math deficient of us) I’ve been in and out of doctors offices like I’m sure many of you have. I’ve been to numerous doctors and specialists with just as many diagnoses. I’ve been in and out of medical, urine, bone, electrical, and blood tests, MRI’s, neuro-exams, and bone scans, and taken numerous medications from over-the-counter Ibuprofen to pain-killers and anti-depressants. I have suffered with intense pain all over my body, fatigue, anemia, low immunity, lack of effective sleep, and frustration with weakness in my muscle and joints.

My senior year and first semester in college, my symptoms have become much worse and my (most recent) rheumatologist and I began becoming more assertive with my treatments, in and out of the office. At this time my doctor is treating me on a rigorous course meds and a TENS unit. My pain, after a long run of seemingly insurmountable obstacles, has sporadically and unfortunately unpredictably lessened. I feel, some mornings, like I can get up without crying out in pain, walk up to my class without my knees giving out. This accessibility comes at a price. By taking so many powerful medications my body has to deal with a lot of side effects. I become nauseous daily (honestly feel like I’m in my first trimester of pregnancy—morning sickness)(I’m not, by the way). I have sporadic shaking tremors in my hands and arms; I become dizzy and faint at random and occasionally dangerous and inappropriate times. Sleep patterns are abnormal, sometimes I’ll wake up at 3:30 a.m. in the morning and start doing Philosophy homework because my brain is completely awake, and other times it is such a struggle (even after 3 massive cups of coffee) to stay awake in my 11:30, 12:45, or 1:30 classes.

It can be really hard to stay positive, and most the time, honestly, I pretty cynical with everything. I get really frustrated with going from doctor appointment to doctor appointment without finding relief, just another medication or another therapy technique, that will potentially fail. I start getting apathetic about treatments, frustrated at those who are ‘suppose to’ be helping me, lonely in my search for relief, and alone because I’m stubborn and don’t let anyone else know about it, help support me and carry my burden. My mom, who has really been my stronghold and my haven through it all, keeps assuring me that I will find relief, that this is hard, no doubt about it, but I’m strong, I’m determined, and I can preserve till I find relief. But (as all of you know) words and actions are different.

So for right now I have no amazing, I shall overcome story. No life altering, poignant spiritual awakening through this all, and I no real understanding purpose or meaning for my pain.

So if you don’t mind my diatribes about the crappy-ness of my situation, the complaints about the fact that (I feel that) there is no way my best friend, professor, boss, or others will really ever be able to understand, and if your willing to work with me on ascertaining how to stop living in denial of my illness and start LIVING with it, And flourish. I would more than appreciate and love to be friends and co-sufferers.

Believe me when I say...we know how you feel. I give you A LOT of credit for continuing to go to school and go for what you want in life. It may not be the life you planned...but it's YOUR life!

I'm soo happy for you that your mom stands behind you and believes in you. A lot of Fibromites don't have that...at all! Some have nobody at all. You're fortunate in that you've got her.

And, now...you've got US! We ARE the ones that understand how you feel and know what you go through every morning! We're here for you!

Please, feel free to open all the way up to us and share with us!

Again, welcome and I'm soo glad you found us. This group of friends is the best thing that's happened to me in a loooooooooooong time! I don't know what I'd do if I didn't have this group!!

Keep your chin up and know I'm here for you anytime!!

{{{{Fibro Hugs}}}}

Post edited by: sweetheartsuzee, at: 03/02/2008 10:00

hope to get to talk to you soon and if you ever need to talk, rant, cry or whatever we are all here for you.

Hugs, Alicia

I just graduated from college last July, and I understand waking up at odd times durring the night, brain running wild, then dragging around durring the day. Its very frustrating that no one around you can understand what's happening. I've always been a very independent person, and the hardest part of all this has been admitting at times that I do need help and cant do certain things that I should or used to be able to! I get so mad sometimes because I'm only 23 and sometimes even unloading grocceries from the car is almost impossible. Most days my 79yr old grandma has more energy and spunk than I do!

The best advice I can give you is not to give up! Learn your limits, learn to accept them, and keep living your life the best you can.