Firstly, thank you for the wonderful emails and words. I have brought
my thread to this community because I have found there are other's who
are directly and indirectly affected by such a disease and wanted
everyone to have a place to share and exchange information, support
eachother, bring laughter and much humor to a difficult reality.

In 2003 I was in very bad car accident. Hit by a speeding truck while
stopped at a red light. I suffered injuries ranging from minor bumps and
bruises, to the severe.... permanent nerve damage, soft tissue, joint
and muscle damage and suffered chronic ocular headaches with auroa,
memory loss, problems with spelling and words. For 3 years I was
grossly misdiagnosed and put through hundreds of tests and treatments
for things I did not actually have. Since the accident, I have continued
my education and advanced in my career, despite being told it would not
be possible. In 2005 I was diagnosed with severe fibromyalgia with 16
out of 18 specific tender points affected resulting from the severity of
the accident and my injuries.

The thought that some may will want to share, have direct or indirect
information or knowledge, or have the disease, or a related disease
themselves, the intent and purpose of the thread will have served it's
purpose.

I know what your going through

I have had severe rheumatoid arthritis since childhood and in my teens I
was diagnosed with fibromyalgia along with a long list of other
autoimmune diseases

It really hard to live with sometimes because people don't understand it
and they view it as an "old persons disease" and then they tell you to
go take some extra strenght tylenol

Like thats gonna work ROFLMAO

I know exactly what you are meaning girl. It had taken so long, after
so many different doctor's and test's to finally know what was wrong.
They only relief I got, was finally knowing what I was dealing with and
then trying to learn as much as I could about it. At times a severe
flareup can last up to two weeks or nag longer.

Are you going through any long term treatment options or therapy?

Jane, talk to purplecat she has it. my family does too.
there is some good herbal pills out there now that work pretty good. &
lots of mineral ice.
I'm going to play in the forums some will talk to you more some time.

i heard that in women fibromyalgia can make having children difficult,
is that true?

Good to see this here, you!

again, lol, jeez here goes...

I do have it as a side effect from Systemic Lupus and rheumaoid type
arthritis...No day goes by without illness or pain. But, some days are
less so, and these are sooo good, lol. Not perfect, or like I was, but
still good.
I have remission, and flares. Latest flare, and bad bloodwork has lasted
a long time. I think stress has made is worse...

I lose my memory, have to limit sun because of rashes and sickness
resulting...

I've found advocating for myself, and educating myself to have been
worth it. I believe I have less organ... damage because I refuse certain
drugs.

My kids still need me, and I cannot afford to be in bed all the time
sick. I need me, too.

I have found Omega complex with borage and flax oil (thank you, alex!!!)
to have been a great help. memory, and the broken glass feel of pain
goes away...

Still learning. I do aromatherapy, and some herbal remedies.

Alex is teaching me more.=0)

Thanks jane!

and, light on all...

Will...

no. it doesn't interfere with that.

It can effect the ability to deal with it all...tiredness, weakness...

actually it can make it hard to have kids

but mostly because of all the pain medication that you may be taking.

In order for me to have children (As per my doctors instructions) I need
to go off of all of my medication for 6 months to a year. Then try to
get pregnant... the carry the baby for 9 months... then once I'm done
breast feeding I can go back to my meds... I really don't think I could
do that because I can't really function without something to kill the
constand pain.... I'd probably be sick in bed for a year... but it
really depends on the person and the situation so it really isnt a
simple yes or no

thank you because i know someone who has that and she is very worried
about it effecting that

I type for doctors and one of the doctors has been recommending a new
med for people with fibromyalgia. It is called phenocaine (or
phenacaine - spelled different ways), can be bought in health food
stores. It is an anti-inflammatory and has helped many people with
arthritis type problems, and the doctor is taking people off Celebrex
and other type drugs and trying them on this new "natural" one. He is
an internist and works with mostly elderly patients and tells them that
he has to watch their blood work closely, just to make sure it doesn't
affect their blood levels.

Might want to ask your doctor about phenocaine. I have talked to
someone who uses this and said it works wonders for his arthritis. Hope
this helps.

Great posts, and information. Thanks for posting everyone! A few people
have given me information in regards to supplements or other natural
alternatives. All that I discuss with my doctor's. Open to anything to
reduce the severity of flareup's. The last month has been really bad and
have had to have steroid and anti-inflammatory shot's because it was so
unbearable. Long term, I would prefer natural alternative's, and
continue with regular accupunture, heat threapy and traction (neck and
hips).

I found an amazing site that has loads of information:
http://www.fmaware.org/ . The National Fibromyalgia Association, also
has tons of related links, a newsletter, books, etc.

Thanks catch and marie.....for the information! And Nene, thank you for
coming

welcome, Jane.=0)

And, hope the day is kind on you...

Thank alot for sending the storm, LOL!

I went for heat and TENS yesterday morning. Is temporary relief. To
take the edge off the pain and discomfort. It's been creeping up to an
unbearable level. My therapist is sending me to an accupunturist that
specializes in the ancient chinese method versus mainstream. Old
school. He and my doc believe it would be more sutiable for me, my
injuries and the disease. They said the benefits are greater with this
method, for those that also suffer acute and chronic pain.

Am so glad you got at least some relief!

When I go back for the specialists in a few months they will go through
some physiotherapy(sp), and alternatives, as well.
I still refuse some meds. Something that makes me so damned sick I just
cannot see the benefits as compared to what I have already been doing.
Yeah, it is bad alot...but, bad is better than organ damage, and
acceleration of the disease... I truly believe some of the treatments do
this...
Sometimes quality of life is not. But, at the same time more so than if
I had done some of the things they wanted...
Not all docs like it when patients have a mind of thier own

I know what you mean Nene....at one point they wanted to operate and
sever a nerve so as to not have the chronic pain and discomfort. Will
never go that route. So many other alternatives, ways to manage, reduce
and cope.

hey you

And, I believe alot of things are just swatted away because of the
corporate way insurance companies are running most things here in the
US. many decisions based on patient care are done inside boardrooms, and
by doctors pressured into prescribing meds the pharmaceutical companies
are pushing while in bed with the corporate parts of the places...
They get paid based on what and who they prescribe to...

Just a mess, lol.

I can only imagine then what all my doc's have made from having me as
their patient, lol. Thank god we have free medical here and what does
cost money, is covered by my employer benefit's.

They are trying to get me things for home use, like the heat rock packs
and mini oven to heat them, versus using over the counter gel heat
packs. The deep heat is so wonderful, can't get that with the junk in
the drugstores. A home TENS unit also. A hot tub has been mentioned a
few times, lol but I think that one will have to wait a bit. The more I
can do for myself, more often, at home, is a long term goal, for
consistent relief and comfort.

I am, too.

The place we are renting has an accomedation(sp) clause.
They will put in things I need as it goes. And,I qualify for other
stuff, too. Haven't looked into all of it, been just adjusting to our
place, and trying to live without fear...lol.

I had some microwave moist heat pads I' dgotten in a medical supply
store a few years back. I still have one or two. They were expensive,
too. Came in a variety of sizes. One was for the entire back... cervical
ones... lots. Deep heat that is moist feeling..but, dry when not...
thera-beads, I think they are called.
Regular heat pads are bad for the skin, and don't penetrate well at all.
But, you probably already knew that.


I'm interested in the rock ones you mention.
I dunno if my insurance will cover it, but it may be something I can
save for?

I recently had contact with a guy that runs a website called jointheat
dot com. He wanted me to build his website for him but would not agree
to my terms so I never did it. I would suggest you may want to contact
him his site is really unprofessional but it seems like his products may
be of help to you all.

Just another alternative. I am not involved with that company at all
just wanted to let you know it is out there if the products interest you
or can help.

The phenocaine I mentioned above is an herbal product, sold in health
food stores, but do need to run it by your doc in case you are on other
meds and watch your blood levels, as the internist I work for does for
his patients, but I personally know a respiratory therapist in his later
50s or early 60s who swears by it for joint pain relief. Did say it was
expensive though.

Also the internist is treating elderly patients who have many other
medical issues on many other drugs so is being very cautious with them,
so is watching their blood levels. Younger people may not have to be so
cautious if you are not on other meds, etc. Just a thought.