Health Forum

Many of us have a host of physical ailments, many times symptoms that can't be explained by doctors and leaves us feeling like it's all in our head, or frustrated because we know something is wrong but the doctors aren't finding it.  This is your place to record your personal battle with illnesses, and how you found answers or help, or to reach out and ask for help with your own symptoms.

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 awake. 

(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 days....bummer.)

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 suggests.

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.


Fibromyalgia and Myofascial Pain Syndrome (MPS)
DISH (Diffuse Idiopathic Skeletal Hyperostosis
Overactive Immune System & Depression Link Discovered