Newbie... Dx: Fibromyalgia & something more...

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lil_nytemare
New Member


Date Joined Jun 2008
Total Posts : 18
   Posted 6/24/2008 10:49 PM (GMT -6)   
Hi... My name is Casey. I have been dealing with chronic pain since i was about 13 (and i'm only 20 now). The doctors always told me its because I was growing or that I was too active (i did play soccer for 9 years) or whatever. Anyways, now that I've been settled down for a few years since I graduated high school, they've finally come to the conclusion that I have fibromyalgia.
 
Well, along with the fibromyalgia, I've been having recurring headaches for the last 8 months or so that have gradually gotten more intense and more frequent to the point that now, I always have this dull headache kind of "lurking" in the back of my head... and every other day or so, it will get to be a lot worse. I'm talking worse to the point of I am doing absolutely nothing... I take a few pain pills and put my little heat pack thing on the back of my neck and attempt to go to sleep/wait until I pass out.
 
I've also had the headaches last as long as 3 days... and within those three days varrying in the type of pain. I DONT have nausea or light sensitivity (more than normal) like you would with a migraine. I also get the sharp stabbing make-you-drop-to-your-knees headaches every now and then and trust me, they're not fun when you're driving...
 
So yeah, to sum it all up, I'm a youngin with a whole bunch of problems... I was to the point of spending about $300 a month on all of my Rxs and nothing was fully fixing the problem.
 
I was on:
Topomax (Fibro / Headache)
Lexapro (Anti Depressant)
Lyrica (Fibromyalgia)
Darvecet (Pain Pill)
Hydrocodone (Alternative Pail Pill)
 
Now:
Celexa (Anti Depressant)
Gabapentin (Fibro/Headaches)
Darvecet (Pain)
B12 (Fibro / Headaches)
 
And yeah, even though the cost of my Rxs dropped considerably, the drugs aren't really helping at all. Ive been seeing my neurologist fo about 2 months now and he seems to be genuinely concerned with whats going on with me. He's done everything he can to make sure I'm on the best medicine possible without it costing me a fortune. Last week, I had a Nerve Conductivity Test done on my arms and lower legs / feet because I was having strange sensations. In the morning when I got out of bed, as well as periodically throughout the day, I would feel as though I was stepping onto a bunch of needles. And no, I'm not talking about the tingley sensation you get when your foot falls asleep... Also, I would have the feeling of little raindrops falling on my arms, or a hair tickling it when in fact, there was nothing there...
 
Anyways, the NCT came back fine. They tested many different locations on my arms and legs and the response time of my nerves seemed to be fine. THEN they stuck one of those silicone filaments (Like out of a fiberoptic light) INTO my back... yes, IN it! #1- Not Cool... #2- It effing hurt! They hooked some machine up to that and I have to move my head and cough and what not to see if the nerves near my spine (about half way down my back) were responding appropriately. This test also showed that everything there was fine.
 
This thursday (the 26th) I have an EEG and Brain Scan scheduled. My boyfriend and I are very nervous because my doctor layed it out for me very simple in saying that "if its not in your nerves, it has to be in the OTHER place we thought it was, which is your brain." which means that if something is genuinely broken, its going to be a pain the butt to fix it... Thankfully, I have a wonderful man by my side who would give the world to make me feel better. Thank God he has been there for me and tolerated me when I've been stressed out about all this... he's made us both dinner when I hurt too much to stand up... he's taken care of me when I have a headache and even took massage classes to try and find a way to help me deal with the pain.
 
 
Anyways, any kind thoughts or advice would be greatly appreciated by us both......

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 6/25/2008 2:35 PM (GMT -6)   
Hi Casey,

Welcome to Healing Well. So to hear you have been having such a hard time. You really need to see a Neuro who is a Headache Specialist as it sounds as though you are experiencing more than one type of headache!!

So pleased you have a supportive partner!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


lil_nytemare
New Member


Date Joined Jun 2008
Total Posts : 18
   Posted 6/26/2008 12:36 PM (GMT -6)   
Ann-

Thanks for the warm welcome.

I am currently seeing a great Neurologist who, like I said, seems to be genuinely concerned with whats going on with me. He's doing everything he can to find me a medicine to lessen the pain and then figure out why i was in pain in the first place.

I had an EEG this morning... it definitely sucked having all those wires glued to my head... I guess I'll know the results from that soon...

-Casey

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1711
   Posted 6/26/2008 4:06 PM (GMT -6)   
Casey,

I am so sorry to hear about your headaches. I used to have bad ones when I was in my twenties too. They determined it was from birth control pills and as soon as I got pregnant, the headaches stopped. Nice solution huh? lol.

Anyway, I don't know if this makes sense or not, but I have been on lyrica for a short time and it gave me headaches. I see you are now on neurontin, which also lists headaches as a side effect. I may be way off the mark here, but I thought I would put it out there.

I'm so glad you have a wonderful man in your life. Keep him. They are hard to find. I am coming up on 49 years of marriage next month. Also, glad to hear you have faith in your doctor. That's half the battle

Welcome to Healing Well. I'm glad you found us. Continue to post and let us know how things are going, OK?

God's Blessings to you.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Ouchy
Regular Member


Date Joined Apr 2008
Total Posts : 34
   Posted 6/30/2008 9:43 AM (GMT -6)   
Josh's Girl...Welcome to our "un"happy, but positive family. As I was reading your post, I was having a deja vu. It sounds so like my daily lifestyle with the headaches(all the time but always different) the stabbing head pain.

If you ever need or want to chat, I am available pretty regularily.

By the way, I am dx'd with Fibro, Chronic Fatigue, IBS, and Migraines. Not alot of fun...lol

Keep the spirits up, Nikki
Current Meds: Cymbalta, Codeine Contin, Tylenol3, Tramadol.
 
Diagnosed with Fibromyalgia in March 2008 but suffering about 7 yrs.
 
 


lil_nytemare
New Member


Date Joined Jun 2008
Total Posts : 18
   Posted 7/3/2008 6:14 PM (GMT -6)   
seems like a lot of us are dealing with a very similar situation. i know one thing is for sure- i'm tierd of dealing with it.
 
my selection of meds is limited because my neurologist doesnt want to give me anything that could affect me having a kid because i'm in my "child bearing years"... he kinda doesnt understand that I have endometriosis and can't have kids. yes, i'm still on birth control because there is, of corse, that 1 in 5000 chance that it would actually happen.
 
as far as the birth control / gabapentin / anything of my other meds giving me headaches, i had the headaches about 7 months before and of the meds besides the birth control. and as far as that is concerned, i've been on it since i was 13 because of the endometriosis. (SUPER severe cramps to the point of me missing school/work for 1-2 days because i was curled up in a all crying...)
 
ummm... yeah dont really know what else to say. again, thanks for the warm welcomes and advice.
 
and yes, you're right. i'm very lucky to have Josh in my life. he's great in helping em deal with all of this. hopefully, i'll know something from my EEG soon. I have another appt. on the 9th.
 
-Casey

lil_nytemare
New Member


Date Joined Jun 2008
Total Posts : 18
   Posted 7/10/2008 11:07 AM (GMT -6)   
Update:

I had my doctor's appointment yesterday. Everything came back fine on my EEG. He changed my anti-depressants from celexa to Lamictal (a mood stabilizer) which i was also on about 2 years ago. He set me up an appointment for a bi-lateral occipital nerve block onthe 29th but I dont know if i'm going to keep that appointment or not.

#1- I'm deathly afraid of needles
#2- Needles in the back of my brain makes me kinda nervous

He also recommended that I go to a headache clinic up in Alexandria so I'm going to call them and see about getting an appointment there before doing the nerve block... ya know, just to kinda get a 2nd opinion I guess....

anywho- just wanted to give everyone an update!

-Casey
Dx'd:
Endometriosis (1999)
Depression (2003)
Fibromyalgia (May 08)
CFS (May 08)
 
Current Meds:
Gabapentin, Celexa, B-12, Yasmin, Darvecet
 
------------------------------------------------------------
Casey <3 Josh
02*14*08
Always & Forever
 


 

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