Ever since I can remember I've had back and neck pain.
I knew I had fibromyalgia and chronic fatigue syndrome, but I felt my back
and neck problems were from something else.
A few years back, my doctor said there was nothing more
they could do. My therapist wouldn't let me give up, however.
Then a couple years ago, I couldn't even keep working because the pain
and inflammation was so bad. My podiatrist, (and my boss) who had
been treating my ankles and feet when they'd become inflamed, gave
me the name of a good rheumatologist in the area, Dr. Paul Brown, and I
went. Dr. Brown seemed to know fairly soon what it could be and asked
questions I didn't think were related at all. Then he ordered full
body MRI's, cat scans, and more tests.
He discovered I had DISH, diffuse idiopathic skeletal
hypertosis, which causes the ligaments and other soft tissues to turn to
bone. It had already happened in the long ligament in my back.
My hips were also badly affected, knees and feet. But also he found
I have a connective tissue disease, much like, if not, spondylitis.
This is very similar to what my grandmother had and it is hereditary.
After years of cortisone treatments, including epiderals in my neck, and
years of unsuccessful use of every anti-inflammatory med on the market,
he finally put me on chemotherapy which did help a lot. I guess it
puts the inflammation for the connective tissue disease in remission.
(The connective tissue disease causes your immune system to attack the
body as if parts of it were foreign). So I was able to get around better
until I quit taking it on my own because of unusual bleeding. I didn't
want to go through all the colon tests etc., so it was just easier to go
off that and see if the bleeding stopped. It did. My pain is
increasing now, but I don't miss the tiredness and hair loss I was having
with the chemo, although the pain is at such a level again it keeps me
(Update: now we are trying a new drug -- two injections
a week that is supposed to be better and no liver damage, etc. I
have been on these since July and have not been having the awful attacks
on my body which caused swelling, redness, inflamation, and horrible pain
in my ankles, knees, elbows and shoulders.) I still have a lot of
pain and have more bad days than good, and I'm told a lot of what I suffer
now is from the fibromyalgia. I am currently in physical therapy
and occupational therapy to teach me how to pace myself so I don't get
so drained and not able to move, and learn how to stretch without causing
more harm, learn what I'm doing that causes the flare ups so I can continue
to work at home without so much pain, and hopefully decrease the number
of bad days all together.
I do tend to overdo it on my good days because I don't
know when I'll have another one. But I guess as I learn to pace myself,
and not overdo it, I'll be able to manage better. (I guess that means
I won't be able to sit at the computer working any more 14 and 16 hour
So to anyone who is embarrassed because the doctors can't
find what it wrong, or those who have given up trying to find what is wrong,
or buying into the myth that it's all in your head, please don't give up.
Keep trying different doctors until you find one that knows what he is
doing, asks the right questions, and will do tests until he discovers what
it is. Only then can they begin treating the correct illness.
It's been hard to determine which symptom is from which condition, but
it sure helps me to know it isn't in my head.
Here are some things I've learned from my ordeal:
1. Don't just sit and suffer. Go to the doctor.
2. Make a list of all your symptoms and give to
him/her. Don't assume like I did that they aren't related.
3. Don't take the doctor's word for it. They
aren't gods. They don't know everything, overlook a lot, and some
of them simply don't care.
4. Keep looking for a doctor until you find one
that listens and treats you with respect. After all, this is your
body you are talking about and no one knows it better than you do.
My best results have come from referrals from friends or other doctors.
5. Keep taking your medicines...don't quit after
a few days because you don't notice results. Some take weeks before
you will begin to notice any effects. Then if it doesn't seem to
be doing anything, don't just stop, but tell your doctor and see what he
6. The more you tell them, the more efficient care
you will receive. Take notes in with you, because if you are like
me, when you get in there, you forget half of what you needed to tell him.
7. Don't put all your trust in your doctor.
Listen to your gut instincts, too. Let it be a partnership between
the two of you. Don't expect him to have all the answers or trust
his opinions about your health if it doesn't ring true with you.
I may add to this list as I think of other things I've
learned, but I hope this will be a start for you if you are still suffering.
Please send us your stories and responses.