I am 27 years old and I have been dealing with back pain since I was 15. I got my first MRI when the pain got severe in 2004 when I was 22, finding that I had Degenerative Disc Disease with no known cause. That was the findings of the Orthopedic Surgeon whom said my only option with him was surgery down the road. I got pain medication from my PCP and PT which I went to and didn't see positive results, just more pain.
Fast forward 5 years later, I am getting worse as time goes by and the pain has gone into my leg and more often than not, disrupts my sleep. I can't exercise like I did before because it causes so much pain, which leads to more issues. I am in pain every day, with "flares" 3-4 times per week that effect my mood and activities. I have been seen by 6 doctors who didn't request an MRI, haven't written a Rx for a back brace like I asked for work or long periods of sitting, and I have to beg for pain medication. They counsel me on the risk of dependency to which I have offered to try non-opiate medication or anything that will help. PT requires me to pay $80 per session and I am told to go 3x per week, now with the new PCP has finally requested a new MRI because the others are too old (thank God) however, due to my insurance rates increasing, I have to pay close to $800 for it. The medication he put me on hasn't done anything for my pain and he said I have to get the MRI before he gives me anything else.
I also started classes again and the seating is terrible, not to mention the long walk to the parking structure (I have sharp pains when I walk, especially uphill) and often stop. I would like a temporary parking pass to park closer, a brace to wear when I sit, pain medication that works, and allow my friend to give me PT (she is a rehabilitation coach and majored in Kinesiology) and a money angel to help pay for my MRI. Okay, aside from my angel...am I being ridiculous?
What do I need to tell my doctor? What are my rights?

Hi---
I am around your age and I know how frustrating chronic pain can be .

My first suggestion would be to request another referral to an orthopedic surgeon and/or a dr who specializes in spinal issues.

Depending on what he/she says, along with your MRI, surgery might be something to consider.

Another option is asking for a referral to "Pain Management". Theese doctors specifically specialize in Chronic Pain. There are other options besides meds and physical therapy.

As for for PT-- has your doctor written a "prescription" for PT ? If so, then your insurance should at least be covering part of the cost. (If your doctor hasn't written you a prescription for it, make sure he/she does so.) THEN, I'd call around to different PT centers and ask what they specialize in. PT centers aren't "one size fits all". For instance, the last time I broke my foot (I've broken my feet 4 time now ) I chose a PT center that specialized in feet/ankles; where as right now I am in PT for my pelvis and the center I go to specializes in Womens issues. Try to find one that specializes or has experience in Spinal Issues and back problems. Water PT might also be something to consider.

In terms of the the brace-- it might be helpful if you have the PT write a prescription for one or have him/her fax a request to your doctor. I've found that *sometimes* doctors respond better when another "professional" requests something vs just the patient. Your PT can specify the type and reason.

Personally, I would NOT see someone who isn't a Liscensed Physical Therapist, but thats just my opinion. Friends can be well meaning and seemingly helpful, but you want someone who has experience and a post graduate degree in Physical Therapy.

As for your rights--- one of the greatest rights you have the right to switch physicians until you find some one who will listen and someone you click with. You also have the right to a second opinion. Make a list of what you want in dr , and what you don't want, and call around to various dr's office and talk to the nurse/receptionist-- before you make an appointment, and ask questions and they can give you an idea of how the office works, experience, etc. This goes for specialists too, not just PCM's.


****On that same note: I *think* one of the challenges you are probably running up against is your age. Just based upon my experience, a lot of doctors have the tendancy to think that because your "only" 27, you should not be experiencing chronic pain or they may doubt the severity of it. I am NOT saying its right-- I am just saying, its what I've dealt with. I've broken both my feet 2x (4 broken feet total), and have a clear diagnosis of RSD/CRPS in my legs and my pelvis (surgery complications) so the "cause" is clear, but even I frequently get the run around and deal with drs who just don't get it. ***

Remember, You are your own best advocate. Ask lots of questions. Push for answers. Ask for options and referrals to specialists if the your PCM or first person you see doesn't know. If you aren't comfortable with something, speak up.

Hang in there and feel free to PM me anytime.

L2L

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