Newly DX'd, LONG TIME Fibro Sufferer. Long Post, But An Introduction

Hello all,

Love your message boards here. I was officially diagnosed a few weeks ago with myofascial pain syndrome and fibromyalgia. After years of suffering and searching I finally found a doc who knew about it and was able to diagnose me with the high severity fibro. Before I get into that though, I want to give a background.

I had several problems as a kid including seizures, hearing loss, and growth deficiency syndrome. I took HGH injections for years. I do not recall ever having any energy issues or other issues growing up. Though I can't remember exactly when it started, I think it was around age 18. I had been living in my car for months through the winter, and after researching this condition more recently I believe that the trauma/loss of sleep associated with that is probably what triggered the fibro. At one time I thought I might still be growth hormone deficient since adult deficiency mimics a lot of fibro symptoms, but i no longer think that's what it is.

I'm now 34. Since 18 or so, I've been suffering immeasurably with this condition. For me the fatigue is what bothers me the most. I'm so tired. Exhausted all the time, for years. Everyone always says it's cause I'm lazy, or quit smoking, blah blah. But I know it's so much more than that. Just utter exhaustion. I also have the severe muscle soreness everywhere but I have such a high pain tolerance I've just gotten used to it. But there's no getting used to the fatigue. It's been TORTURE for so many years. People just can't understand what it's like. But I know I always feel like just keeling over and on some days feel like I just want to fall over and die, and just not deal with it anymore (not really suicidal, just so exhausted that I feel like even thinking another thought is too much to bear at times).

I work full time as a systems specialist. I write a lot of code, queries, programming, data analysis, etc. I'm really good at what I do and love it. Most of my coworkers would never know I have this debilitating condition. I have a very strong and impulsive mind, and I talk fast and am really smart etc. What they don't know is that even though I get things done more quickly and better than anyone else could, that half of the time I'm in my office with my head in my hands feeling like I just want to collapse. It's the hidden world, ya know?

I hate the fibro fog. Not sure if it's the same fibro fog the rest of you have, but it's what I've complained about most for years. It does get worse at times, but isn't like a lot of people describe it when they say it just comes on and goes etc. Mine's constant. I feel my brain. It feels so thick, like a bowl of mashed potatoes. It's like my brain is 'blurry'. It's so hard to think deeply at times, but I'm able to force my thoughts through when I need to. But inside, it just feels like my brain is asleep. It's so tense, so foggy, so exhausted. The fog is always there.

I also always get the headaches. They start in my neck. So sick of the soreness. Neck, shoulders, thighs, calves, always so sore. Never paid attention to the individualized areas before because I've had it for so many years, I kind of took it for granted. But now since the diagnosis, I look at it all differently. Every pain I feel, every act I do, I now think "yeahhhhhh, I do have fibro. Normal people aren't like this! Normal people don't have their thighs burning to oblivion just from walking up the stairs! Normal people don't just lay down in a fetal position right on their kitchen floor because the couch just seemed a bit too far away!".

So moving on, I'm also a single father of two young super energetic and strong minded boys, 3 and 5. My wife passed away a little over a year ago from pneumonia she got while going through chemo for breast cancer. I want to break down in tears sometimes because my kids love me so much, want to play with me so much, but I can only do so much. I wish so much I could have the energy to spend the time with them they desire and need. Breaks my heart. I am still a really good father though, and still give tons of love and hugs to them and nurture them every way I can. We have a huge bond. I just wish I could play with them more. They get so upset sometimes because I have to stop play early. I hate that if my oldest climbs and sits on my shoulders for even 30 seconds, that I will feel that soreness for days. I wish I could walk around with him up there like every other father!

So back to my DX. Went to a doc recommended on a website. He really knew what he was talking about and gave me the dx. He started me on zanaflex and elavil at night only, and provigil during the day. NONE of them have done a thing. The ones at night are supposed to make me tired, and I know they do for a lot of you. For me though, they don't make me drowsy at all. Xanax does a bit though.

In any case, I'm not seeing him anymore cause he's out of my plan and I'm not thrilled with his receptionist etc. But I found a new general doc in my area that treats people and I'm seeing her today (in 5 minutes actually). I'm gonna bring up a bunch of medications I've researched this weekend and see which ones should be given a try. It was so depressing researching everything this weekend. It's like there's NO med that really works! Some work for some, but every med I look at has more detractors than supporters. Makes me feel hopeless.

In any case, I'm going to ask today about lyrica, tramadol, soma, and adderall. We'll see how that goes. I just want to try the most likely meds first, but darned if I know where to start! I can't be drowsy during the day cause of my job. Guess I'll have to see what happens.

Anyway, god bless you all and I'll post more when I get back. God I hate this darn condition. I just want to feel awake again!!!!!!!!

Welcome to the family!!

You are an amazing man and don't even know it, I"ll bet My hubby is also a "code pig" and has been at it since the days of punch cards and mainframes the size of a small house...lol Look at all that you do. Go back and read your post. No one can be expected to keep that sort of pace, especially with something as disabling as fibro. My first suggestion is to be easy on yourself both physically and emotionally. Your kids are doing just fine and they won't miss out on a thing. You may not be able to hoist them on your shoulders...that's not important...but you are spending time with them and that's what counts. It's not the activity, it's being together. If you are stumped for things to do with them that are not as physical go to your local library and find some good books on crafts and playing with preschool age kids. I am just amazed at how much you DO accomplish.

As for your meds...I do hope you find something that helps. I take provigil but it's very dose dependent. A small dose did nothing for me but once Doc upped the dose it made an amazing difference. I can actually stay awake when I want/need to, most of the time.

Let us know how the doc appointment went,
Chutzie

Hi, Imareality, and welcome!  Yes, you sure sound like an amazing man.  I'm so sorry about  your wife and I do know how difficult this is for you but you are doing it!  That is truly amazing!

 

I am one who the malic acid/magnesium has helped.  Also, I am deficient in vitamin D and that can cause muscular pain and fatigue!  My doctor has had me taking 2,300 IU of D a day and I just came from his office and I'm STILL slightly deficient!  So he now wants me to take 3,500 IU a day.  But, since I started taking this much vitamin D, my pain has decreased!  I usually have to take a lot of ibuprofen with food and extra strength Tylenol for pain but I've cut it back because I don't hurt like I usually do.  The jury is still out on whether the is a good period for me or if it is the additional vitamin D.  But, when you see your doctor next time, request that they do the blood test to see how your vitamin D levels are.  This might help you some. 

 

Here is a link about vitamin D and fibromyalgia.

 

http://chronicfatigue.about.com/od/exercisenutrition/p/vitaminD.htm

 

I am so glad that you found us and joined in.  We try to help each other and we really do care about each other too.  We love getting men in on the action on this forum  we do have several men right now so the more the merrier! 

 

By the way, in the Fibro 101 thread, there is a link to stretching exercises that really help and are done sitting down.  You could sneak those in while you are working.  Movement helps keep the muscles more flexible and in less pain.  I'm sure you get plenty of movement when  you get home with the kids! 

 

Be sure to read the Fibro 101 thread, back posts, and ask questions.  We are here to help.  I'm glad you are here and I hope to hear more from you soon.

 

Sherrine

Welcome
This is my first yr DX with Fibro
My biggest problem is also fatigue and Pain.........
I love the winter but sure found out it dont love me ........fibro
I have to write all dates of appointments and all down or I totally forget.......

I feel so helpless at times........but this place gives you the hope you really need ......

I get the fog too but not as you describe it
I can go from one thing trying to remember to the next w/o any success

I am sorry for the loss of your Wife

The Members here are very varing supportive and empathetic
THEY know what you feel and what you go thru with the Fibro
I read the Fibro 101 and it has helped me out so much as did Teaspoons
In fact I have them printed out and my daughter and Hubby have a copy each

I wish you all the best.........LYN

Thanks to all of you for your kind words and support! Doc appt went well yesterday and I am now taking lyrica. Wow does it make me feel high and dopey. I know that goes away after a week or so though, but man is this afternoon gonna drag. Wanna take a nap so badly.

Can't wait to see in a few weeks how I respond to the med though, since it seems to have worked for quite a few people (though I know there are many it didn't work for).

The doc did state though that I should be under the care of a rheumatologist because she can handle simple type fibromyalgia patients but she knows a more complicated case like mine is more than what she's capable of doing. I listened to her and made an appt for a rheumy. I have to wait till May5th and probably have to go through all the initial tests to be re-diagnosed, but I'm hoping it's a good doctor that I can have a good relationship with.

That's all for now, and thanks so much again!

So glad things went well with the new Dr. and I'm glad she's sending you to a rheumy!! 

I really hope the Lyrica helps and you day goes by quickly!!

Take care,