Lanacole, Hi so sorry to hear of your health challenges. The previous reply is right on. I would add that the issue of apearing young and healthy does often work against us. The other issue is to dhoose to take full empowerment in overseeing your care as a team player with some well chosen specialists. If we are willing to be fully engaged the system works in our favor. Otherwise you will simply fall through the cracks. Your PCP is like the 'gatekeeper' for referrals. The pain issue should not be one of fear of addiction. Unless you have a history of substance abuse. Referral to a pain clinic is appropriate. Also getting a handicapped license or placard sounds warranted. Looking young is not a reason to prohibit one in this situation. Especially if it is progressive.

I recommend negotiating with the MRI and insurance co., investigating and asking around to find ways to get your diagnostic treatments. Being your own advocate is the only way to deal with the system as it is today. No doctor is able to have our best interests at heart for more than the 15 minutes they see us, then on to the next. I like to use the doctors to create a conscious team approach. I ask them to support me in taking care of myself and finding the best possible care. In exchange, I bring in all records, labs, copies of rx., history etc.. along with appropriate questions for each visit. By respecting my own time and limitations, and respecting their limitations, we are aligned toward an identifiable goal.

Have you considered seeing a Rheumatologist who can do blood testing to get/rule out definitive diagnosis. If this is truly progressive, then they should be falling all over themselves to help you find ways to cope now while you are still young.

You mentioned work related back brace and also school. I hope you lurk around these different sites and find out how others who are further down the road, have learned to do self care. Self care often involves surrendering our usual identity. It is very hard sometimes, not fair when younger, everyone will have to learn to cope with this sooner or later. Some of us just get to learn the skills sooner than expected. I fall in that category. Having more serious conditions than both my parents long before their last decline. Weird to be able to help them cope, when they were just as resistant as I was, but much, much older.

Hang in there, become an expert on your own condition, needs and situation as it reflects your current status while anticipating the future needs appropriately. Feeling in control is important. Begin with believing in your own reality and insisting on effective support.

Don't stay with a doctor if it is not a good "fit", just move on. Like teachers they are extremely varied in skill levels within the same field. And never give up on insisting on quality of life, free from the worst pain. You have every right to get relief, and referrals.

They will put you in a label/box which serves the workings of the current medical system, but you are not the box or label. Don't buy into the limited view they use since we are so much more than our disability.

I use positive denial to get through much of it, but only so far as it does contradict my self-care levels. This is a balance everyone must learn for themselves. If you can get a therapist to talk to about what you are going through, it helps immensely. The issues of personal power, identity, self care, self-love, worthiness, fears, loss of known identity with accompanying grief.... So much goes along with chronic pain/condtions. Much is worthy of being heard, supported and given a compassionate witness to validate these issues. We cannot do this alone

I hope you might have felt some validation for your situation in my reply. If you wish for more connection, please add me to your contact list. the Best Wishs... TT