Hi, New here, could REALLY use some advice re: adult scoliosis, TMJ

[BerkeleyGirl]

Hi,I decided to join this forum for a number of reasons, the main being i have a TERRIBLE Dr, I’ve been having excruciating (sounds over the top but I’m not exaggerating) back pain that radiates all the way around to my abdomen, and I can’t get out of bed in the morning. I’ve had sciatica as well, since I was 20 (I’m in my 30’s now) I’ve also had TMJ disorder since I was about 10 years old, from a sports injury. My Dr “diagnosed me with scoliosis last month,& I have told him about the other issues that come with the pain:not able to urinate easily, haven’t had a period in 8 months (haven’t been sexually active in over a year and a half) and how, bottom line, something just feels VERY wrong.
My Dr will not give me an x-ray, says to do yoga (yoga is great, but I need to know what’s going on with my body)..He “diagnosed” me by feeling my back, saying “do you feel that? Your spine is curved & you have a spasm”..
I am always too nice, I’m used to being the advocate for my child who has special needs, but I’m running out of patience with this medical system. I would really appreciate any feedback as far as how to go about getting my Dr to actually listen to me, if anyone has had these symptoms, ANY feedback would be great. I told my Dr I needed to know what ALL of my options are, & he came back at me with yoga and acupuncture. I’m not against these, but if there’s something going on inside of my body, I have the right to know..He told me “with x-rays and MRI’s, there’s radiation you have to consider”…
I know he doesn’t care about my health too much- he is always trying to make the appt go as quickly as possible because he has other patients. I have to remind him about my bloodwork, I could go on for days. My TMJ disorder Is A Whole Other issue, I’ve Had It Since I Was 10,And wasnt Diagnosed Til 23..It Was Bad THEN,& I had a specialist..He(my specialist) was astonished when he saw my xrays,yet my Dr now says there’s no use in xrays,My jaw is in constant spasm, like when you’re shivering& your teeth chatter. My head feels like it’s in a vice.
I’ve asked other Dr’s (one a close family friend) about my back & he said he was worried that the pain is all around my midsection, not just my back,& to tell my Dr I need a referral to an orthopedic surgeon. I apologize that this post is so long, I’m just so frustrated with not getting anywhere, and having to worry about the future, when I don’t have as much family help as I’ve been lucky to have now.

At this point I need to really know what to do, I know I have my rights, but they are making things so exhausting for me, but I need to be healthy for my child, and for me..This is not a life anymore- it’s me,in pain 24/7, looking like I’m lazy because it’s hard to do much of anything. I know I need to be tough and be the squeaky wheel, but my confidence is so shot it’s a horrible feeling, like I’ll never win, so why bother..but I have to.

Again, sorry this is so long. Thanx for reading. -BG

[Noki4]

Hi Berkeleygirl,

So sorry it has taken me so long to reply I missed your posting. It is really hard to talk to our healthcare providers sometimes. They are given 10-15 minutes for each appointment and for some they stick to that schedule. In my journey with pain I have found that if a health provider will not take the time to listen, to really listen and hear me then it is time to search for a new one. I know that it is really hard to find doctors who treat chronic pain but we need to find providers who do not just hear us but listen to us and try to understand what our lives detail.

The Pain Community has this document called, “Positive Patient-Provider Relationships”, it may be helpful for you. It is listed under the “education tab” at the top, under pain 101. Here is the link to it also; https://paincommunity.org/education/positive-patient-provider-relationship/

I hope some of what I have said is helpful to you. I also hope you come back and let me know how you are doing.

Take care,

Noki4

[Author]

Posts