I just need someone to believe me

[Lilynette]

I am 19 years old. When i was in 3rd grade i was playing football with a friend and we were all tackle for that day but he hit me one time really hard right into my left collarbone. I remember the pain was SO TERRIBLE. Anyways i got a splint for it and it healed and seemed fine but my collarbone is actually bent inwards. Almost like it healed improperly, isn't it true that a bone that heals unatrualy in a wrong position can cause arthritic changes. Such as osteoarthritis? I am in pain everyday now. My spine burns, i hear crackling in my neck that hurts and popping sounds in my skull, my collarbones now hurt like hell and burn and it feels like they weigh on my shoulders and my sternum. I've seen two rheumatologists but both say it's completely impossible for me to have OA and they also have called me a liar about my pain. How can someone do that? I just want help, i have a strong feeling my injury as a child caused all this and maybe my collarbone just needs realigned. But i get denied on everything just because im 19. I need someone to help me

[Hidden]

Hi Lilynette, I just thought I would say that I believe you. My sister and I both had orthopaedic abnormalities as small children, but the NHS here in UK has always been cash strapped and although School Doctors wrote to our main Doctor, nothing was done. She had bow legs and I had a very slight curvature of the spine. By the time we were in our twenties we were both in chronic pain with degenerative osteo-arthritis, caused by the original untreated orthopaedic problems. She's had four replacements of her knees and I am on a drug 100 times stronger than morphine for pain in my spine and all my other joints. You sound like you are in America, so I have no idea how you force the medical people to do anything there, but you need an MRI Scan of your collar bone and neck.

[Lilynette in reply to Hidden]

Thank you so much for the reply and Im so sorry you two are going through that. Yes im in America, with my insurance they are saying i require physical therapy for them to authorize the MRI referral my primary physician referred. I have no idea how long that will take, everyday is like im waking up into a nightmare but the worse thing is is that it's reality. My spine feels so injured, it burns and travels to my rib cages. I always have that disturbing crunch sound when i turn my neck. But considering ive had two rheumatologists tell me im normal all my friends and family around me think it's all in my head.

[Hidden in reply to Lilynette]

Hi Lilynette, I think you have trouble with discs in your neck or possibly thoracic spine from the symptoms you describe - I've had discs gone in my neck at C6 then at T 3/4 since I was in my early twenties. Some people's discs are not as durable and they get trouble early in life. My sister married a Doctor and I worked for one years ago, and we soon got X-rays and diagnosis. But still we had that rubbish about it being "all in our minds" from some people in our family and from some of the Doctors. My neck has the horrid crunch sound too. Have you tried a soft collar at night? I should agree to the physiotherapy if I were you, to get the MRI Scan. Just do the daft exercises for a short while then tell the physio it is making it worse! Good luck,

[nomoreheels]

You've not been able to find a good Rheumatologist yet? This seems crazy bad, it's been so long now I don't understand why two Rheumatologists don't understand you, even say you're not telling the truth. I know you probably don't want this but couldn't your Mum or Dad attend with you or even help towards finding a recommended Rheumy if your insurance will only allow you to see the standard you have to date?

I think I've said before but it is certainly true you can have OA at any age, more often in the young if there's been an injury to that joint. Have either your primary doctor or the Rheumies actually even tested your rheumatoid factor, anti-CCP or even done a Vectra test, I believe they're available over there? Did you have any imaging done, X-ray, US or MRI?

I'm not sure if in all your posts you've ever mentioned your parent's stance on the trouble you've been having & your experience with the Rheumies. What are their thoughts on everything?

Have you ever thought of seeing a Chiropractor? I'm thinking if you see a well respected one he may be able to recommend a course of treatment for the interim, see if that brings you some relief.

[Lilynette in reply to nomoreheels]

I have had the RF test all the standard blood test rheumys do and physical examination. I don't know what a Vectra test is, all my blood test came back noraml. I've only had x-rays of my hands and cervical spine, im working through getting an MRI but when so many doctors say you are normal it's hard to get it authorized. My Mom has trouble herself and to be honest she doesn't really seem like she cares. My dad trys his hardest to please me, he only wants to make me happy but we are a poor family and it's super hard to make appointments. I need a job but i feel like i can't work, im losing my friends because i can't stand to be around them. Im envious. And i wish i had the power to change this

[nomoreheels in reply to Lilynette]

I'm sorry your Mum has problems too & that she doesn't seem to care. How has your Dad tried to please you? Has he been able to attend any appointments with you, as support & to confirm how much this is all affecting you? What does your family doctor make of it? I would be expecting mine to refer me to a reputable specialist, even if you test normal in your bloods surely a physical exam should prove to him you're not making up your pain. What did the X-ray reveal? Do you have any inflammation or redness in your affected joints? Sorry for all the questions but I'm concerned for you after all this time, there has to be someone your doctor can refer you to, or at the very least prescribe something to ease your pain.

Have you asked on the HU Cure Arthritis community? They're a US based charity & just thinking if you're willing to give the state or region where you live someone may just be able to recommend someone reputable you could see. There's also a contact number on the home page, ring them, hopefully if they're as good as our NRAS team you'll start getting somewhere with their experience & advice healthunlocked.com/cure-art...

[Lilynette in reply to nomoreheels]

I really appreciate your concern. And my dad does have an intent to help but he also wants me to be okay as a parent he wants to believe im okay and that it's nothing serious so when the rheumy says im normal of course he wants to believe it. No redness or swelling but sometimes my feet and hands feel like they are swelling but don't show signs of swelling. My pain seems to be only joint pain. I only take Gabapentin for pain and they have me on Effexor. Im thinking of going to the ER tomorrow and complain about my collarbone so maybe they take an x-ray of it. But i don't even know what that will help, but i feel like i need to do something. I will try the other community though also so thank you for mentioning that

[nomoreheels in reply to Lilynette]

Ok, now both those meds are prescribed for the same thing. One was initially an anti-depressant but can also be prescribed for neuropathy, or nerve problems/pain. The other is also for neuropathy. Did your doctor say why he prescribed both? It would seem he believes something is wrong but to prescribe two neuropathic meds, neither of which seem to be working, it might be prudent to see him & ask if they might be working against one another.

I hope if you do attend ER you'll give them all of your symptoms, maybe, just maybe they'll take all of them seriously & order tests. A US may be helpful, sometimes inflammation isn't externally obvious but a US can pick it up. Let us know how it pans out if you go.

[Lilynette in reply to nomoreheels]

Every time i suggest an ultrasound though they act like it can't be used for anything but pregnant women