Life...and living it...(long post)

So... Im new here, and really just looking for advice. Not sure how people will take this but...I really dont want "sorry" and such things at this point(nothing against anyone here, I am just hearing that a lot more than I would like IRL and would like to avoid it online if at all possible). Hopefully this is in the right section, if not, mods please feel free to move this post.

My problems go back as far as I can remember, most recently though...fibro. Some of my more recent past issues started in late 2005(when I was 15), I was diagnosed with celiac disease in late 2006. The reason it took a year to be diagnosed? I have an atypical presentation where I did not lose weight and I was not malnourished, I was a 6'2" 280lb male that until the start of symptoms had worked out and hiked +10mi a week. I went on independent study my senior year and was barely able to finish highschool after being in advanced classes since elementary school. Approximately six months after my diagnosis I began to have stomach pain and cramping(not exactly what it feels like...but closest I have come to being able to explain it). After four months and three medications later my doctors and I settled on amitriptyline to help manage it after some nasty side effects from lyrica and a lack of effects from neurontin. I went from mid 2007 to December 2009 living a slightly limited(both by pain and diet) life, it wasnt great(pain wise) but I certainly wasnt complaining.

Anyway...in September 09 I met someone(who also has a chronic pain condition) and we have fallen in love with each other. Life was great, the 100mi drive that separated us didnt seem like a problem at all, my pain had decreased a bit for the first time in 2 years, I thought maybe I had finally gotten close to living a "normal" life. All of that, including meeting the girl who I am pretty sure is the one(), now seems like a huge cosmic practical joke life has decided to pull on me.

Starting the day after Christmas I woke up and after getting out of bed I noticed that my right hip was bothering me and that quite a few of my joints seemed stiff, definitely not something normal for an otherwise "healthy" 19 y/o. The pain rapidly increased and spread after that, by new years I was taking 2 vicodin 4x a day and the week after that my doctor refused to give me any stronger medications until I had imaging and bloodwork done. Long story short, all the bloodwork was normal(aside from elevated liver enzymes related to a bit of a fatty liver) as was the imaging. My primary care doctor had me referred to a rheumatologist and after some questions and poking and prodding of sensitive places(everywhere) he said that he suspected it as being fibro. From then till now things have not improved at all, the only course of treatment we have tried thusfar is amitriptyline that, at the higher dosage my rheumatologist prescribed, caused me to become suicidal for the first time in years... But lyrica is off the table as it caused some rather unpleasant side effects that I still have from time to time. I am sick and tired of not feeling well...ever. I am sick and tired of doctors, of getting up in the morning, of panic attacks, of levels of pain I never knew I could experience, of watching the effect it has had on me, of feeling detached, and soooo many other things...

In the past three weeks a few new things have really been causing problems... 1) I can no longer take photos, this was the one thing that I *might* have been able to make a living doing while still feeling like crap, the way I have to hold my shoulders to even hold the camera up to my face and focus causes unbearable pain(I almost dropped my camera and $600 lens the last time I tried)...I dont even want to think about how bad it would be if I tried hunching over or bending down to take a photo would hurt... 2) I am having trouble driving more than a mile or two at a time as my car, which is what kept me sane through the last set of wonderfully fun issues, has a manual transmission. When I finally work myself up to the point that I am even willing to consider making another doctor appointment I will have to have either my GF or parents drive me... 3) Right now with how sensitive I am sitting or laying down on any surface hurts to the point that my body forces all the places in contact with the chair/bed to feel numb...sometimes... My back is soo sensitive that my girlfriend cannot even give me a hug without the pain bringing tears to my eyes.

I am 19...I had to drop out of college(and had to have my doctor fight with my ins company to keep my insurance)...I have no job, no income, and the money I have is quickly evaporating. How can I ever even try to think about living a life close to normal? I cannot drive myself to work, let alone actually work... Typing this post up has taken me 4 hours already because typing makes my hands hurt soo badly(I used to do web design and write code but... I am not even up to recreational projects anymore). I have lost a lot of fine motor control because it just hurts soo much to do anything, so making things is out of the question(another thing I used to love to do that I now cant).

I just am at the end of my rope, I dont know where to turn for help or advice, my family really just doesnt understand and they cant(which I feel a bit bad about...but I guess one good thing is I now know of "spoon theory")... Sorry for the long post...but...well... anxiety attacks are good at making posts balloon out of control.

Can anyone offer me some advice?

Hi, Jeannie gave you great advice. If you haven't already checked out Fibro 101 on the top
of page one, do so. There is a wealth of good info there.

Flexeril (cyclobenzaprine) a muscle relaxer helps me while I'm flaring, It really takes the
edge off the pain for me. I also take a SNRI, Savella and it helps keep the serotonin level
up, which is important for many fibromites. Heat helps, hot showers, soaking in a tub.

Like Jeannie mentioned the excercise is so important. When you are hurting it is tempting
to become a couch potato, but you will hurt all the more. Deep breathing and meditation
help me relax. Pace yourself and be careful not to overdo.

Hoping you find pain relief soon! Keep us updated, we do care!

hugs, Robin

I have found that, no matter how bad a flare up is or how much pain I'm in, that there are things about my life that are just precious and keep me smiling. It is important to focus on the positive aspects of your life. Take the time to really "soul search" and get to know yourself. I started this when I was on chemo for breast cancer. I felt too sick to do anything else but lie around and think. This was definitely the best thing that ever happened to me. I have become much more spiritual (not necessarily religious) and this new view helps me deal with much more adversity with little to no stress.

The more I got to know myself and worked on changing my views, the more I loved life and the less pain I felt. I am still doing this process and it helps me get through the bad days.

I also have six cats. They have helped tremendously. On very bad days, they are there to make me feel better and the positive energy that they give off really helps a lot.

I hope this helps some. No matter what, you can always come here and know that you are not alone.

I wish you all the best.

Every morning when I wake up, I count my blessings, starting with being alive. I then move on to each family member, each pet, and any good thing that I can think of that has happened in the near past. I see fibro, as well as the cancer and other conditions, to be a form of lesson, in that each problem that comes into my life has a lesson that can be learned from it. I believe that, through fibromyalgia, I will learn acceptance (which has always been a bitter pill for me to swallow, pun intended. )

My cancer taught me appreciation. Prior to that, I had pretty much taken for granted the good people and circumstances in my life. I don't take anything or anyone for granted anymore. I also make it my job to put a smile on everyone's face that I encounter. It might sound silly, but you can't make someone else smile if you aren't smiling yourself. I pay close attention to how my actions could affect others and strive to only leave positive effects behind me.

At the end of the day, I think about all of the people and circumstances of the day and feel grateful. I think about any negatives that happened that day and try to find the positive in all of them (though as time goes on with this philosophy, I find that that there are less and less negatives.) Almost every day is filled with positives.

It starts with the ability to get out of bed and go downstairs to work. Fortunately, I work at home, so I don't have to worry about getting dressed and going somewhere else every morning. That would make things considerably harder and I don't know if I could do that. My hands are the most affected by my fibro, and I have an internet sales business, so I am always grateful if I can type that day, with or without pain. Some days I simply cannot do it for more than a couple of hours.

While I understand the "spoon" story. I am not very good at portioning out my spoons, so often by 2 PM, I'm done in. This is where the acceptance lesson comes in. I need to learn that, no matter how good things feel in the morning, I need to plan each day with the same number of spoons and portion them out over the entire day. Hopefully, this lesson won't take too long since I still have a lot to learn about patience, too.

Anyway, this is how I find positives in my life and can even consider fibromyalgia a positive as it will teach me lessons that I need to learn.

Hope this explanation makes sense. I just know this is what works for me. I hope it will work for you, too.