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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

IAMREALITY
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/23/2009 8:40 AM (GMT -7)   
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!!!!!!!!

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 3/23/2009 9:23 AM (GMT -7)   
Hi Iamreality and welcome to the family. I'm so sorry for the loss of your wife, that has to be tough for you and the boys. I'm glad you found our fibro family and we will help you through this the best we can. You got a dx and that is a start but it is all trial and error on what works for each person, I know you want something that works NOW and I wish you luck today and finding that. I try to take as few meds as possible. I was on 100 mg of amitriptyline before I got fibro for anxiety and I do think it helps the pain for me. I found that out last spring when I tried cutting back on it and went into a horrible flare for two weeks. I take 1 1/2 mg of xanax for sleeping and that is working well for me but I don't always get the most restful sleep even on that. Heat is our best friend on here, I've even found that dry heat from my little heater I keep by my side all winter helps the pain in my hands. Okay, it's spring and the heater is still with me and will be for awhile yet.
 
Fatigue is my biggest issue too. That is the way all this started was with fatigue before the pain started. I have not found anything yet that helps with the fatigue. I can work through pain but the fatigue is liking a hitting a brick wall. I have started walking more, I have a 7 mo old puppy that gets me out there even when I'm too tired to. With two little boys you have plenty to keep you moving so I know inspiration is not your problem.
 
Read the fibro 101 thread, second on first page, it contains lots of great info. Some have had good results with malic acid/magnesium combo so you might want to consider that.
 
Read, ask questions and even vent when you need to and we are here for you.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/23/2009 9:41 AM (GMT -7)   
Welcome to the family!!

You are an amazing man and don't even know it, I"ll bet smhair smilewinkgrin 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
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 3/23/2009 10:17 AM (GMT -7)   

Hi Iamreality!!!

Welcome to the Healing Well Fibro Family!!!  This is an awesome site full of people that really care.  I'm amazed at how supportive and wonderful everyone here is.

You sound like a wonderful father and a guy who's been through a lot in his lifetime.  I agree with Chutzie.. go back and read you own post.  You're doing a awesome job!!! Losing your wife and taking care of those boys is tough enough and then to wind up with this dreadful diagnosis, it can be a lot to handle, let alone working and dealing with all the BS that come with a job like yours.

My GP is my Fibro Doc. and he does a good job.  He also does accupunture, unfortunatly my insurance doesn't cover the accupunture, but my doc. understands chronic pain.  Anyway, it does sound like you might need some adjustments on your meds.  Hopefully after that you'll get some relief.  The fog is a constant problem for me too.. I don't know if fatigue feeds the fog or vise-a-versa, all I know is between the two of them life can be challenging then throw in pain for good measure and ... well..  you already know.

The good thing is you might have a new doctor that can help, sometimes it take trying different med therapies, PT, yoga, whatever and you'll be on the right road.  The other good thing is you've found this site.  Where everyone understands what you're going through and is here waiting to help.

The most important thing is take care of yourself.  Try not to get overly stressed and learn to relax. (Much easier said than done).  Something that I have found to work well is massage, moist heat and getting good sleep hygene.

Again, welcome, I hope you'll keep posting and feel at home with this great group.

Take care,


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 3/23/2009 10:37 AM (GMT -7)   
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.
 
 
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!  smhair
 
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
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 3/23/2009 12:17 PM (GMT -7)   

Welcome Iamreality.  Many soft & gentle hugs for you & your boys.  I am so sorry for your loss & all you are going through.  As the others have said, you are doing amazing & need to lighten up on yourself abit.  I can't believe all you are doing & still can be such a wonderful, supportive Dad to your boys after a full day.  You Rock!!!  Please give yourself the credit you deserve. 

Fatigue has always been my downfall.  I know that feeling when your body can give you no more & you just have to stop.  When your body says stop, you must listen & it sounds like you do listen at work.  Those breaks you take are your bodys' way of recouping.  You are fortunate that for you the work comes easily & you get it done fast.  If you didn't have that capacity, you wouldn't be able to support your boys so be happy for that.  Sleep is important, the body only heals while you are in deep REM sleep, so if you are not getting there, you need to figure it out with your gp.  Have a sleep study done, sleep apnea is common in people with Fibro & also people under great stress.  I use Flexeril to sleep & melatonin 5mg, taken sublingually.  These help me greatly & my fog has lifted alot.  My husband has been having alot of trouble sleeping & has decided to try the Melatonin & is sleeping much better now.  Flexeril can have a druggy side affect, so if you can't sleep the 10 hours or so I wouldn't recommend it.  It does wonders for me but I am no longer working & can sleep as needed.   

I hope your appointment goes well, and you find some answers for yourself.  It is such a bummer to have an illness that has no tried & true method of recovery.  Hang in there & you will find your way through this.  Come here often & let us help you as much as we can.  This is a wonderful place of recovery & friendship & I am so glad I found it.  The people here are compassionate, knowledgable, kind & caring. 

Be strong!!  Hugs, Denise 


 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety  Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/23/2009 3:30 PM (GMT -7)   
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


 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 3/23/2009 6:00 PM (GMT -7)   

Lyn, how nice to meet you.  I see you are not a stranger to HealingWell forums &I am sorry you have been dx'd with Fibro. It looks like you have been through alot in your lifetime & I hope we can help lighten your load abit.   For me, living with tremndous stress has been the catalyst for Fibro.  Do you feel that it had a hand in your getting Fibro?   May I ask, who had Alzheimers? Was it a parent?  It is so hard to lose someone we love so much.  I hope things have settled down for you abit & you come here & post often, the people here are wonderful & caring.  I look forward to getting to know you.  Hugs, Denise


 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety  Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


IAMREALITY
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/24/2009 9:29 AM (GMT -7)   
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!

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 3/24/2009 10:05 AM (GMT -7)   
Hi and Welcome, IAR!

First of all, I just wanted to say how sorry I am that you lost your wife. I honestly can't imagine how awful that must be, but did want you to know you have my condolences.

Also, I can't imagine how hard it must be to have fibro and be raising 3 and 5 year old boys alone! Kudos to you for even getting through the day! My boys are 4 and 6 and there are so many days when I just don't have enough in me to do everything they and I want to do together. That really frustrates me, so I know what you mean there. They are SO active, and I wish I could go, go, go right along with them, but most days I just don't have the energy. Fortunately, their father picks up the slack and does a great job. Many times I have thanked God for him, because I don't know how I could do it on my own. I was a single mom for 8 years, but that was pre-fibro and I only had one daughter at the time. That was hard enough! I just can't fathom doing it alone with 2. You definitely have my respect and admiration for that!

Yes, the fatigue and brain fog are both awful. I am not really sure what can be done about either one of them. I don't take any meds (no insurance, super sensitive) so I just try to control my symptoms with baths and stretching and vitamins and time/energy management. That's probably not much help to you, though, with how busy you are!

I do sincerely hope the Lyrica helps you. Just as you said, some people get nothing out of it, and some people experience great relief. I will be praying that you fall into the latter category!

Anyway-welcome again. Great to have you in the "family" :-)
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 3/24/2009 10:36 AM (GMT -7)   

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,


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 3/25/2009 9:15 AM (GMT -7)   

Hi IAM and Welcome!

My life has been busy and the site has been busy, so having a hard time keeping up with the new members! I too had my first winter with fibro (my symptoms started a year ago this month) and found out that the cold and fibro do not mix!!

Your story is something- and give yourself many soft pats on the back for doing all that you do and continue to do. And I too am sorry to hear about losing your wife.

Hope the Lyrica brings you lots of relief, time will tell and let us know how it is going with that.

Nice to meet you!

GamJill

 


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 1:31 AM (GMT -7)
There are a total of 2,733,393 posts in 301,111 threads.
View Active Threads


Who's Online
This forum has 151252 registered members. Please welcome our newest member, latest online news.
258 Guest(s), 0 Registered Member(s) are currently online.  Details



Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer