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Oct 28, 2015 7:56 PM

Hi all. I've just been sitting back and observing for a week or two.I'm a little shy. I have no diagnosis yet. I was hoping for one yesterday from the second Rheumi I saw. To say the least he was a total ass. He was so rough on me. He grabbed me and started twisting and turning me. I was wincing in pain and I cried. He totally ignored my reaction and kept going. No apology, kindness, compassion. So arrogant. In short most all my joints hurt bad and my back. Most of this came on so fast over the course of a couple of months. My elbows, one hip, wrists and back being the worst. I'm on a low dose of perocette for the pain or I wouldn't be able to use my arms. I'm ANA positive and mild osteo showed in my hip and back. Other than that all other tests are negative. So after many trips to the family doc, two Rheumies and the pain clinic, I'm no further ahead. I'm on perc. with no answers. I suspect RA it runs in my family as does other autoimmune illnessness but I can't any one to believe me. Have any of you had this battle? Have you tested negative and actually been positive? I'm so at a loss. I've hit a wall. Sorry for the vent. I'm also sorry you're all struggling with so much pain too.

Oct 28, 2015 8:35 PM

So sorry your doc was that rough with you. Also, with diagnoses, there are the ones that have official tests, and ones that are "differential diagnoses" and they basically look at the most likely diagnosis. I have Complex Regional Pain Syndrome (aka CRPS or RSD), a differential diagnosis. Fibromyalgia might soon have a (or so I've heard) actual test, which would be cool. Some docs I've met seem uncomfortable diagnosing diseases like CRPS.

Oct 28, 2015 8:55 PM

Also, is totally cool to vent. I'm a teen, and this is a nice place to just let out some of the stupid things that happen, and my peers won't think I'm lazy, or joking.
I also have chronic issues in the family, and many health issues are genetic. For example, my aunt (mom's identical twin) and I have CRPS.
Even though I've recieved diagnoses and treatment, I still have tons of questions. Is way harder though, when you only know your own research.

Oct 28, 2015 9:01 PM

Hi Ferritbandit sorry to hear you're suffering too. My heart goes out to you. I'm glad you feel safe here to vent and talk about your pain. When did yours start and how? How did you get a diagnosis?

Oct 29, 2015 7:24 AM

Fibber, welcome to our Family Community. I am gland that after hanging around for a while that you decided to post. This really is a wonderful and safe place to vent, whine, complain, share, ask questions, etc. you will come to learn that you are never alone. There is always someone here to chat with if you need help. There are no judgements here. We "get it" and that is really helpful when you need to get things off your chest.. I'm sending you gentle {{{Hugs}}} and prayers that you get the answers you need and find some relief.🌻🙏🏻

Oct 29, 2015 1:18 PM

Welcome to the community family Gibber! Like AlwayZ said, you'll find no judgement here. We even like to share laughable incidences too. I'm sorry your rheumy doc was so rough. My doc, a female, was quick but thorough when she manipulated my joints, and I was a little sore. But it sounds like you were rediculous manhandled (no pun intended)! I'm ANA positive and have been for 6-7 years. RA runs in my family, but the tests keep showing negative. I do have OA all over my body, but my hands weren't involved... Until this year. I'm slowly getting swelling and pain in one after another finger joints, and my left hip socket started clicking and it's painful to just put weight on it at times.. I see my rheumy doc in December so I'm trying to wait it out. I did test positive for sjogrens and hypothyroidism earlier this year. Many autoimmune diseases have very common symptoms. Research and go in prepared with a tracking of your symptoms next time. Keep track of any OTC meds that help or other methods to reduce pain. Don't give up, even if it means getting another rheumy doc. Good yuck. You'll be in my prayers! 🙏🌼

Oct 29, 2015 3:17 PM

Thanks everyone you're all so kind. Prayers go out to all of you too. I have researched my brains out and I go in with a record of everything. Has anyone here been diagnosed with sero negative RA. That's where your tests are negative but you're diagnosed by your symptoms and family history? Sorry flappy that you have OA also that's getting worse and sjogrens. I have symptoms of the latter too. Our closest Rheumies are 5 hours away except the one I saw a couple days ago who is also but comes here once every few months. For now I guess I'm just in a wait and see place. There's no where else to turn medically now. My doc told me the internist will refuse to see me. I asked. Nice eh. I also lost my bladder to IC many years ago and I have epilepsy. Having epilepsy makes finding meds very complicated hence being on perc. Hang in there you all. Hugs back.

Oct 29, 2015 3:31 PM

Hang in there keep fighting. I had a borderline positive ana test, and also just found out I have osteoarthritis in my neck, and knee. I was diagnosed with Fibromyalgia in 2013.

Oct 29, 2015 3:49 PM

Hi Gibber, I am very sorry to hear that you're having such a hard time. Can you travel to see a different Rheumy? There's no excuse for them to treat you that way. It's completely unacceptable!

I've also been struggling to get a diagnosis for 22 years. I'm timid and that doesn't help.

My doctor ordered some blood work today he called it RA/CCP, he said if I have RA the test for RA could come back negative but the CPP test would come back positive if I have RA. I am being sent to a rheumatologist as well. I'm not sure when it will happen but I feel optimistic a little :) don't want to get my hopes up too high just incase its just another jerky doc.

Please keep fighting for yourself! Can you file a complaint against the Rheumy you recently saw?

This might sound silly, one thing that has been helping me recently is on the way to my appointments I listen to music that makes me feel empowered. For me personally Eminem gets my motor running especially songs from his Marshall Mathers 2LP.

Whatever works :)

You're in my prayers for better options for a Rheumy and a much needed diagnosis!

I'm so glad you're here, we are all here to support each other. I'm fairly new but I have to say that there have been numerous occasions that my spirits have been lifted tremendously. My hope been reignited by others stories.
Anytime you need to vent or chat someone is almost always available. All the best. ✌️💜

Oct 29, 2015 4:11 PM

Hi Melram sorry you're in pain too it sucks. Are you on meds? How are you doing? I will keep fighting for sure.

Oct 29, 2015 4:20 PM

Hey Anon,
Wow that's a long fight. I've had all those blood test some twice and some three times. If they come back negative, ask about sero negative RA. I don't wish it on you but I hope that you get some answers. I know there can be relief in that. I also heard of a new blood test out that checks for RA called blood stat I think. Maybe you can ask about that? I fear reporting the doc lest I get black listed. Many of them are nasty and abusive up here. I've also done one 5 hour trip to a Rheumie who blew me off and the five hour trip back the same day. I'm just out of options now. Music is a great idea! I know you'll laugh but Abba helps calm me on the way to appointment's. Lol I like Eminem though too. Definitely empowering!

Oct 29, 2015 6:04 PM

Haha Gibber, I LOVE ABBA! Especially on road trips. Thank you for the info on the tests.

I can understand about not wanting to not get blacklisted. It amazes me sometimes how big some doctors ego's are.

Well I was labeled as "depressed" when I was 22 because I was in pain. It's been a long road of doctors that diminish people, don't believe in certain diseases like Fibro. Doctors that just want to throw pills at you and not ever actually take the time to delve into the root cause of the pain.

I am sorry that you don't have more options where you live. That really sucks. 5 hours each direction is a long trip to get blown off. I am sorry about that.

I have seen my current doctor a total of 4 times (I think) in this time he has done more for me than any other doctor has in the past 22 years. So I'm starting to feel encouraged.

I really hope something changes with your circumstances and you can get answers and help.

You are right that getting answers or a diagnosis is very important. I think it validates us.

I'm really scatter brained today so I'm jumping all over the place here.
Keep us posted on what's happening. If you ever need to talk were here for you!


Oct 29, 2015 7:28 PM

Welcome Gibber to our chronic pain family. There are a lot of caring and compassionate people here. It is a no judgment zone where you. Can rant and rave all you want, we all have done it and probably will again. Don't give up on finding a good Dr they are out there. Unfortunately we have to sorry went blank. Take the bad ones before we find the right ones. I think the majority of us have been down that road. I am so sorry that he was so rough with you it was so unnecessary. But I think they don't really care it they hurt you or not. Will pay for you sending hugs your way.

Oct 29, 2015 7:41 PM

Thanks so much Anon and Weezie. You might be sorry you said it's okay for me to bitch. Lol You guys rock. Docs do need to smarten or live one day in our shoes. I feel like asking them if it were their kid suffering would they treat them this way. Abba power!! Bring it! I'll keep trying if you all will. Sorry to hear you've all been through it. I may take a small medical world break lest I go all ape shit on their butts! ;-) I'm thrilled better care Anon! That's hopeful.

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