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Help! I don't want to be ignored by my doctors anymore.

19 Replies

Hello Ya'll,

I am having super nasty hip and low back pain. I do believe it is my sacroiliac joint and that this may be spondyloarthrits from my RA. I have not had insurance in a while. I left my job as a medical assistant last year due to pain. I just got a full time job that is less running around also less pay. Insurance starts in 3 months. So, I am cash paying to see a doctor next week. Any advise on how to handle my office visit so the Nurse Practitioner I am seeing does not blow me off. Plus, is anyone else having jaw pain at the joints?

I really need help. My hips and back hurt and I am scared. I did see on Rhumatologist a year ago. He told me to come back when my fingers start to curl. No joke. He really did. That visit cost me $400.00. What a waste of money. Then he told me its because I'm female and getting older. I hate that. If this post sounds grumpy, I am sorry. I get grouchy when I am in pain.

(please don't talk about Obama care. I cant afford it. $800 a month for me.)

19 Replies
kevg profile image
kevg

I think blood tests really prove things out and they cant ignore you. I was going to an orthopedic surgeon and went back to see another in the same practice and did the simple blood draw and there the ra was. Don't be over dramatic but state your case

jaclyn11305 profile image
jaclyn11305

I no exactly how you feel i can't find a rhumy who will listen to me i fired him and now I'm waiting for another. We know our bodies better then anyone we need to listen to them and do whatever it takes to get a doctor to listen don't give up.

Mamadukes profile image
Mamadukes

So sorry😕 I just switched my primary care doctor, because I felt she wasn't managing my care. So I know what its like to have crappy doctors. Thank god I have insurance. Before your appointment, write down every thing you want to address. Ask if there's any place you can get assistance before your insurance kicks in. Also, try to modify your diet, gluten free, try taking turmeric. Good luck!

in reply toMamadukes

Thanks :)

Momof446 profile image
Momof446

Make a list of what you are feeling, how often, intensity, to take it with you when you see the doctor. I keep a diary of how I feel so I can compile my list. I had a rheumatologist that told me he would treat the RA but not the symptoms. I do have RA. He prescribed methotrexate, which did nothing. He did not address the pain, the exhaustion, numbness, etc. that I was experiencing. I finally changed doctors, which I never do. My current rheumatologist is great. Very thorough and understanding. I am now on sulphalizine and began Humira a month ago. Am feeling better: still symptoms to work on, but she listens! And she did extensive blood testing. Found out that I had extremely low vitamin D. Addressed that and am feeling less fatigue. I also have fibromyalgia, sleep apnea, peripheral neuropathy, osteoarthritis. There may be more to your diagnosis than only RA. I hope your new doctor will help you more than the previous one. Hang in there!

in reply toMomof446

:) thanks

tselph profile image
tselph

You sound like me. Jaw pain is often associated with Sjögren's which is actually caused from the glands in front of the ears & not the TMJ itself. I had sharp pains in my right jaw & went to a jaw specialist thinking it was my jaw & after about $500 later I find it wasn't my jaw at all but the glands. This disease also affects your eyes & other tissues. I don't know how old you are but I had terrible vaginal dryness also.

I too have had horrible back/SI joint pain. I've had steroid injections in these joints in the past & also in the facets. Epidural a didn't help. This last time I went to my chiropractor and after about 4 adjustments it really helped me.

Just some thoughts for you, get tested for Sjögren's & see if a chiropractic appointment would help before spending a lot of money on other more expensive treatments. I'm concerned about what this doctor told you. By the time your fingers start curling, permanent damage has occurred. You should see a different doctor immediately & get started on some medication for RA, if that's your diagnosis.

Good luck to you!

in reply totselph

Wow. Great info. I i am going to bring that up to my doctor. Thanks :)

Momof446 profile image
Momof446 in reply totselph

I did not know that about Sjogren' disease. I have had problems with my eyes for years and terrible jaw pain. Never associated the two. My eye doctor has treated problem was prednisone drops and no one has ever listened to me about the jaw pain. Have right eye pain frequently. And very dry eyes. From time to time my right eye is very red. What type of Doctor will test for Sjogren's disease. I have RA, perpetual neuropathy, thyroid issues, fibromyalgia, sleep apnea. Also problems with S1/L5. There are still undiagnosed issues. Thanks so much for sharing about the jaw problem!

in reply toMomof446

Wow. Im sorry. We are all getting crappy health care. I dont know how to fight for what I need from my provider with out offending or upsetting my doctor. I dont know who can do all the testing either.

I'm so sorry you are suffering. I've been having jaw pain for over two months now. Jaw pain is extremely painful. I woke up last night in excruciating pain as I must of yawned in my sleep. My jaw was frozen opened and it looked dislocated. It took me awhile to close my mouth. It has been slowly improving now that I am on MTX (7th dose tomorrow).

I'm totally disgusted with your doctors attitude, and annoyed with the US healthcare system.( but that's another story) You deserve to be treated better.

My advice is to take a friend or neighbour with you so you have a second set of ears. Explain to him/her that you are in a painful flare and you need a referal to a rheumatologist. Take pictures of any swelling you have and bring a pen and paper to take notes. If your doctor trys to ignor you or fobs you off tell him that his behaviour is unaceptable and make a complaint to your States medical board. I would also make a complant to your elected official. I live in Canada we call our elected government official our MLA. You have an equivelant but I'm not sure of it's correct name.

This link may help you

usa.gov/paying-for-medical

in reply to

Thank you. Its good to know im not alone.

in reply to

:). In florida we dont have expanded healthcare coverage. My healthcare.gov was 800 a month. Medicaid does not cover the working poor. I am on my own. Your info was super helpful. Its good to know others have the same symptoms i do. I dont feel so alone now. ☺ thank you.

in reply to

$800 a month fee for government health care? Wow. How is anyone able to pay that?

tselph profile image
tselph

I'm glad you found the reply that I sent you helpful. You can have your rheumatologist test you for Sjögren's. I know that there is medication to treat the symptoms. See your eye doctor on the dry eyes. You probably need to be on Restasis to help that. Yes, more medication. It's always something, isn't it. I sure hope you find a good doctor that will run the right tests & get you the help you need.

God Bless!

msjenni profile image
msjenni

Hi Hidden

I know you didn't want to hear about Obamacare but I am in the insurance industry and you should still be able to receive some assistance. I'm not sure how old you are or what your household income is, but you should still be able to get some assistance through the federal government in the form of a subsidy. If you want to private message me I can discuss with you in more detail as the working poor are the people that Obamacare was supposed to help the most at $800 sounds like a lot. You should also have additional plans available based on the medal levels (platinum, gold, silver and bronze)

Sorry to hear you are in so much pain and I hope I can maybe help you through the healthcare maze

-msjenni 😉

Sa61 profile image
Sa61

I also have been dealing with sciatic pain, low back pain. Along with peripheral neuropathy .

My Rhumatologist told me RA has nothing to do with sciatic pain or lower back pain. It drives me crazy. I recently went to the Wisconsin Spine Center. Which after going thru the exam I actually had very little pain.

The bad part is it is going to cost.$$$ so I am in the process of saving up some money. Even if I can just afford a bit at a time.

I read on a muscle that runs next to each side of the sciatic and attaches to the lower part of the back it also runs thru the pelvis and attaches to the top upper part of the thigh. It it called I think psoas muscle. I will look it up and will continue this after I look it up.

I also see a chiropractor who helps. I just can not afford to go to her that often. She is a hands on only Chiropractor. 20.00 each time I go. It helps a lot. Something you might want to try.

I will be back and add on more in just a bit

Sa61 profile image
Sa61

Yes it is called the Psoas muscle.

Look this up. Maybe it will help you. Look up exercises on loosing a tight Psoas muscle.

I was on leflunamide along with Xeljanz which has helped me for almost 3 years. I was recently taken off leflunamide because it contributed to my Periferal Neuropathy. I am now doing Xeljanz only.

Hope you find relief soon. I know exactly what you are going thru.

If you find anything else that helps, please let me know🙏🏻🙏🏻For you😀

Update. I did get insurance through Obamacare care. It's expensive but I will scratch and save to pay for it. I was able to see my rheumatologist and my labs were off the charts. She gave me steroids again and started me on methotrexate. I read all of ya'll's posts on the drug and now I am as educated on methotrexate as my rheumatologist. It's been 2 months and I feel a bit better. I have good and bad days now instead of all bad days. However, the fatigue is brutal. I started vitamin b12 and D2 and turmeric. It's not helping. My rheumatologist said I have a sever form of RA. I am so tired 😴. Any advise would be appreciated. Thanks

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