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Members of Fibro Angels Guiding Light shares personal stories of daily struggles on our group's 5th Anniversary.

We pray all reading this whom is enduring chronic pain will finally see you're not alone in this journey.

Hello my name is Karen aka Gracie. I am a wife of 41yrs. We have two sons five grandchildren and one adopted one. I have had fibromyalgia for I think it is 16 yrs now. I was working as a CNA in home health care. I loved my work. I had a car accident and started feeling bad after that. I can remember coming home from work and just crawling up the steps and hit the couch. Feeling like something was laying on me and I could not get up. My son wanted to know if I would quit work and watch my two grandchildren which were three and four at the time. I was glad to rather than them going to day care. He was separated at the time getting a divorce and had the kids. I can remember how tired I was at the end of the day watching the children. I did like a day care and did different activities with them. Nothing got better with the way I felt. Living everyday in pain and no one understanding. Being so very tired all the time. I felt so alone and knowing something was wrong but not what. One day we got a newsletter from one of the hospitals. It was describing just how I felt and they said it was fibromyalgia. It said go to a rheumatologist. This I did and found out this was what it was. Hoping that he could help me gave me hope but the most he could do was give me pain meds. Of course I did not want to take them all the time so through the years I struggle and just take them when I have to. I have fibro, osteoarthritis,epilepsy,neuropathy, heart problem, osteoporosis, high blood pressure, acid reflux and sleep apnea.

What a struggle these years has been. My husband for a long time was not very understanding. It was so hard to deal with. God had to have changed him because years later he changed. I felt so very alone. Even now most people don't understand the struggle we face each day. I was a newbie on the computer and looking I found FAGL four years ago. What a blessing finding this group has been for me. Without God and this group I could never have made it. I don't think I would be here today. I know now I have friends that really understand me and what my life is like everyday. I am glad that doctors are now realizing that this is a illness and not just in my head like my one doctor still believes. My faith has grown a lot through the years and being in a Christian group helps. God bless everyone in FAGL.

The following was written on 5/8/04
My name is Joyce, I'm now 45 years old. I first began my
journey in 1988 when a prophecy was given to my husband
and I. The Lord had told me I was going to go through some
illness and to not loose hope. He would help me through it
and use it for others who are needing help.
I realize that not all Christians believe in prophecy but please
bare with me.
It was not until 1992 before a came down with ebstienbarr
virus and cmv at the same time. I was in the hospital for 7
days. When I came home, the elders of the church came to
pray for me. During the prayer, the Lord showed me that I
was now entering into the prophecy given in '88. I saw a
cloud (while my eyes were closed), that came and moved
away. And then another cloud came but did not move away.
I mentioned this to the elders who were praying and one of
them said they had seen it to. He thought the clouds
represented the illness I was in at the moment and the illness
yet to come.
I was sick for along time and was diagnosed with chronic
fatigue syndrome later that same year.
Then in 1995 I was involved in a car accident. I had a double
whiplash and a brain injury including partial amnesia. I started
having siezures and severe migraines. I was so depressed
from all the pain that the hospitalized me in a mental
hospital. They put me on all kinds of antidepressents that did
not help. I could not get through to the doctors that I was
depressed because of all the pain. They kept saying the pain
was because of the depression. Finally I was able to convince
one doctor who got me into physical therapy. It help alot with
the migraines.
Then we moved to Alaska in 1996. The doctor here told me I
had fibromyagia. It was also comfirmed in 2000 by a
rhuemotologist. The rhuem. doc. also said I had rhuemitoid
arthritis.
In 2001 I was diagnosed with diabetes. I still struggle with
pain every day. I have documented (sleep study) sleep
disorder that wakes me over 375 times a night. I have to take
ambien every night. My skin feels like a constant sunburn all
over. I have to take nuerontin to combat this. I still have to
keep from pulling away from my hubby, (he is so patient). I
had to have a historectomy after my last child born in 1999.
So now I'm in menopose. I have irratable bowl syndrome,
muscle twitching, muscle spasms, joint pain and recently
found a lump under my armpit.
All I've got to say is that I have not given up the good fight!
If God wants to use me in this condition, who am I to
question? I am no longer angry with Him. I know he has a
plan and I know that this body is just a temporary dwelling.
God bless you all and please feel free to comment on anything
I've written.
God is in control He knows what He is doing!
Joyce

Up date 1/12/08 (almost 49)
The journey continues. I can now add a stroke and spinal
arthritis/fusion plus bulging dics to the mix of diagnoses. My
intestines have so much scare tissue and partial colaspe in
them that at times I double over with pain. The RA has made
it difficult to walk because it has done some damage to my
feet...yet the RA docs (more than one) have changed that dx
from RA to poly arthritica back to RA and back again! I have
come to the conclusion that they just don't know! All I do
know is that there is damage.
The doc I had at my first writing has turn coat on me. He did
say I had fibro...and treated me for that...but his treatments
were put me on a new type of med everytime I saw him. He
had me on over 16 different meds by the time I said enough!
I went off all meds and started taking magnesium complex.
My diabetes went away and I lost over 75 pounds! But the
damage had already been done because the last time I had
seen that doc...I went in with stroke like symptoms and he did
nothing. I also had no insurance at that time and did not
persue the issue...as he had me thinking it was all in my
head. So I ignored the weakness in my left side and the
drooling and choking on food. I chalked it up as just another
"symptom" that has no cause other than fibro.
The amazing part was that I had woke up one day...felt like I
had been asleep forever...and that I didn't have any pain! It
was the first time I woke up with no pain in years!

Anyway...when our insurance kicked back in a year later...I
went to a new doctor. He actually knew me because a couple
times... when the old doc was on vacation...he saw me as the
fill in doc....but he moved out from that practice. He was
concerned with the fact I was so weak on one side...and that I
was still having episodes of what I now know as TIAs
(tranient ischemic attack)...known as mini strokes. So he had
ordered a MRI and it confirmed that I had a stroke! Not much
they can do about it though after a year.
So now I take asprin daily. I still take the ambien. I still
take the magnesium complex. I am just recently back on
hydroxychloriquine (plaquinel) for RA...yes this doc says I do
have RA...my blood work proved it. I might have to go back
on methotrexate shots if things don't improve quickly.
I don't take neurontin anymore...but nothing has changed
anyway after taking it for a couple years...so I figured its a
waste to take something that doesnt seem to be working
anymore.
The Lord still has his hand on my life. I praise God for
waking up every morning. Even though the pain had returned
(took a few months after the stroke)...I am blessed to have
what I have. I still have TIAs...and because of this I am at
high risk for a full blown stroke again....yet I do not worry
about this...because God is God...and I am who I am...and if I
die....I will be with Him...if I live....I will be with Him and my
family and friends! So why should I worry? Worry will only
cause more stress and I wouldn't get to enjoy life to the
fullest if all I do is worry about whether I live or not. Know
what I mean?
So this is where things are. Nothing really has changed. I
will stay faithful to God...because God still is on the throne
and has a plan...and I for one know that I am a part of that
plan of glory that is coming soon. Who has time to sit and
complain? So much to do...so much to see...so much to
fight...pain will not bring me down.
God bless,
Joyce

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