New here! hx with a question about short-term non-medicated pm

Hello everyone! My name's Ally, and I've never posted on a forum like this before, but I feel very isolated and frustrated trying to get advice from people IRL, so I'm giving it a shot.

Little bit of background information on me: I'm only 19 years old but I feel like I'm 60 with the amount of medical problems I have. When I was 11 I started seeing a chiropractor for back and jaw pain, upon which we found out I have minor scoliosis and TMJ/TMD. The x-rays of my jaw were actually scary, I looked like I'd been through one hell of an accident, yet I've never experienced any trauma to bring on the TMJ. So for years I've had flare ups that leave me crippled and unable to eat because of the pain, all the while getting no medical treatment for it because my chiropractor was hoping that it was something that could be managed through adjustments. As the years have gone on I've started getting joint pain in my hands, my knees, my lower back, and the worst is still my jaw. I had my daughter very young, at 16, and I breastfed her for 11 months. I already had issues with low calcium in my teeth prior to having her, as it's a family trait, but breastfeeding has made my teeth crumble.

I have no insurance, and obviously as a single mother I'm not swimming in cash, so I'm in the VERY long process of getting my teeth fixed. Luckily I have a wonderful oral surgeon who works with me on the prices and is helping me fight to get state insurance. It's been a battle and a half, that's for sure.

Because the nerves are exposed in quite a few of my back teeth, I get infections very often. These infections will spark flare ups that I can honestly say are worse than child labor. Because of the fact that I don't have insurance, I can't see a specialist for my TMJ. So for the past couple years I've been working with a clinic doctor who has helped me with my pain management treatments. He's been debating whether or not it is TMJ because of how often and how long I have these chronic pain flare ups. But since he's a clinic doctor and not my PCP he's limited on what he can do for me. My mother works for a PC practice and today I FINALLY got to see one of her doctors. I ended up with a UTI during a flare up so my pain is through the roof right now. She managed to get me in, but with the doctor who does not believe in prescription pain killers. So I left with an Abx but no pain meds. He did, however, refer me to a rheumatologist because he thinks it could be RA related instead of TMJ. My mother has a very aggressive form of RA where it attacks all her major joints first instead of the smaller ones like hands and feet, so we're all familiar will how that works. But, because he wants me to go through testing first, he won't prescribe me any pain killers and told me to just continue taking my Ibuprofen 800 because "that should work." I am beyond frustrated with that statement because this is my Tx history:
Started with ibuprofen 800 Q6H - Didn't work
Tramadol 25mg QID (100mg a day) - Didn't work.
Vicodin (5-500) PRN & Ibuprofen 800 Q6H - Took the edge off, but was still in a lot of pain.
Vicodin ES (7.5-750) BID & Ibuprofen 800 Q6H (This is also the point where physical therapy exercises were implemented)- Certainly took the edge off the pain, and actually worked on the days where my pain wasn't that bad. But when my pain was at it's worse, it took it from being a level 10 pain to a level 6.
Then I get put on Percocet 7.5-500mg PRN and get taught new pt exercises. I could have kissed the man for writing that script. I went from hysterically crying all time because I was in so much pain that I couldn't sleep or eat to finally feeling normal. I had some break through pain, but it was nothing compared to what I'd been having. It was like going from being stabbed with a sword to being poked by a needle. Unfortunately this was a last resort and only temporary treatment. I had oral surgery coming up that we were keeping our fingers crossed would help ease the pain tremendously (less infections, less flare ups was the hope), but it didn't.

Now I have no pain medication in the middle of a flare up and I'm losing my mind. My PCP asked me if they ever tried me on pain killers and I told him the list, and then he was shocked at how they put me on narcotics for this. Well yeah! I only average a weight of 110lbs at 5"4 and I'd drop almost 15lbs easy during flare ups because I couldn't eat. Don't get me wrong, he's a nice guy and a brilliant doctor, but it's so frustrating having someone tell you "You don't need these medications, just take some ibuprofen 800 and a hot compress" when you've already done that.


Now, the question part of this super long post:
Other than a hot compress, how can I relieve some of the pain so that I can sleep? I took my ibuprofen 800 and 2 Excedrin migraine (can you tell I'm desperate?) and I've tried doing my exercises, but my jaw is so tight right now I can't move it. Help? :(

Thanks, I certainly couldn't do it without my family, that's for sure. I never realized how much prejudice there is toward young patients. I've actually received more rude comments about my health/treatment than I have about being a young mother. It's hard to get any real help because on first glance they say "She's 19, she's got a kid, she's got bad teeth, don't waste too much time cause she's on drugs." I've actually been required to take a drug test before being administered medication. We used to joke around while waiting in the lobby "Oh I hope he lectures me on having a baby. At least that was my choice!" Because it never fails, whenever I see a doctor for the first time they have to go off about "You're so young! How do you have all these problems already? What street drugs have you taken in the past/present?!" None..."Okay then...pee in this cup."

I live in NJ. I do qualify for Medicaid/NJ FamilyCare but they are running me in a circle with it because even though I'm an adult and I have my own child, I live at home and my parents make too much money to qualify. We're in the process of fighting them now with it, and so far we've made some progress. My 3 year old FINALLY has health insurance, but I'm still not covered.

hi ally, im so sorry that you are in so much pain. you are very young to have so much pain. i understand though. i really dont know anything about tmj but i just wanted to welcome you to the site. i am new to the site also. everyone here is so nice and helpful. i have read other post about tmj so maybe they will be on later today. it seems like most everyone checks in sometime during the day. atleast all the regulars anyway. everyone understands pain and there are many people on here, in my opinion, that could or maybe shoulda been doctors. they are so smart and helpful with lots of medical issues.

when you are posting try to remember to put alot of paragraphs. i sometimes dont remember to do it myself but some of the members request that you do several sentences and then start a new paragraph. its easy for them to read them that way. sometimes they have to skip over posts because of this. i think mine are still too long. i have to try and remember myself.


on the age thing... my god daughter that i raise because her mother passed away.. she was diagnosed with juvenile rheumatoid arthritis at the age of 8. its very painful, she didn eat or hardly drink anything. she ended up really anemic before we even realized there was a problem. at that age you kinda just think well she played to hard on the playground. it doesnt cross your mind because of the age.

well i wont ramble on. i just wanted to give you a warm welcome and you hang in there it does get better. i know before when i hurt so bad i have taken like 4 0r 5 tylenol at a time with my medication. i felt like it might hurt me at the time but the pain is so bad that you dont really seem do be in your mind and kinda delirious because you hurt so bad. i tell my pm doc when i do that and they adjust my meds to make sure it dont happen again.so i do understand how you feel. hope you feel better.


janet

Oh sweetheart, Part of your story reminded me of myself. 19 years old, 3 year old child, bad teeth because of calcium deficiency. People think your on meth or something because of the teeth. In my case though all you have to do is look at the family Christmas picture to know that it was hereditary.

I don't have TMJ, but i do know how you feel with the infections and the other pain. I don't really have any advice but keep fighting, your baby needs you.

Gentle hugs to you sweetie.

I have a Cerebral Palsy (caused by brain damage when I was born) and even though I've had it since BIRTH, people still tell me I'm too young.

If there were age requirements, this stuff wouldn't happen at birth. I've never failed a drug test or pill count, and I fill on time 99% of the time unless there are extinuating circumstances...and I've STILL gotten accused of selling pills/not needing them. (come to find out this PA had been doing this to a lot of the patients of the other Drs in the practice)

I'm crossing my fingers for you that you'll get some help soon. It took me a long time, but eventually the perfect Dr. fell into my lap, and I hope that happens to you.

Thank you, everyone, for your responses and ideas.

Flower123, I actually have gone and bought some Ensures because I drop weight very quickly and I'm a tiny person to begin with. Not being able to eat has set me back almost 10lbs already.

My mom is going to talk to my doctor (her boss) today and see if he'll prescribe anything because of the fact that I can't sleep and it's preventing me from doing my job.

I'm a photographer and most of my clients are small children. I need to be able to be energetic and cheerful and loud. Yesterday was a disaster at work, but thankfully we weren't busy and the few clients I did have I'm already on good terms with, so they knew and understood that this wasn't normal behavior for me and helped me out in the loud and cheerful department.

Unfortunately my parents don't have insurance either. My mom has insurance, but nobody else does and she only has it so that she can get her treatment.

My grandpop, however, used to sell insurance and knows the ins and outs. He's the one who got my daughter insured even though I'd been fighting with them for almost 2 years. Took him one phone call and they sent me her card. I talked to him today and he said he'll call them tomorrow and get me insurance. Hopefully he can work his magic.

Oh, and I have a update! My mom was able to get me a R/X for Tramadol 50mg, but I'm taking 4 at a time so 200mg twice a day. Hopefully it'll work, fingers crossed!

Yeah, this is the first pain medication I've had in 6 months, so it's a HUGE relief.

When he wrote the script, he wrote it for 2 pills every 4 hours. When I picked it up (my mom actually asked him for the script, so I wasn't sure what he prescribed until I picked it up) I called him to let him know that the last time I was on Tramadol I started by taking 25mg 4 times a day to make 100mg a day. But because that didn't work at all I ended up taking 100mg at a time twice a day. That still didn't help, so I switched medications.

He didn't realize that, so he told me to try 200mg tonight and see if that works. He said if it does, then he'll write me a prescription for another stronger pain killer and let me keep the tramadol as a BT medication since I really shouldn't be taking 400mg of it every day.