A lot of people are against self diagnosis, saying you have an illness if you haven’t been formally diagnosed by a doctor, I won’t get into the pros and cons of it. I am for the most part in favor of self diagnosis, if they also take the steps afterwards to get the official diagnosis because what may look like one thing could be something else, not to mention there are some people who would get a bout of food poisoning and jump straight to “I think I have IBD.” So again, there are pros and cons.
My GI assumed my joint pain was caused by arthritis related to my Crohn’s since RA is very common with Crohn’s disease, even went and put me on Celebrex. When I went to my rheumatologist, he was appalled by the fact my GI had started me on arthritis medication without getting me evaluated by a rheumatologist, turns out I had no symptoms of RA and instead it was most likely due to the hyper mobility of my joints which when I said I experienced constant pain and sometimes had extremely sharp pain with popping, he said that was caused by my joints subluxing and dislocating. He asked if I ever went to the doctor to get things put back into place. I told him no, usually I could move around in weird ways and I’d hear a pop, have some pain but then feel better. He said that was most likely dislocations and he noticed my hip was out of place and put that back in for me.
The point of it is, I never suspected JHS/EDS because the symptoms of pain and some swelling were relatively the same. Lots of disorders share similar symptoms.
If you are having symptoms, it can help to research, gather up info on different things that could be causing it, and talk about it with your doctors. Don’t feel guilty for wanting to have answers or a diagnosis, it can be frustrating to not have an answer as to why something has happened, and with many people being against self diagnosis it can be hard to find support and places of discussion without a formal diagnosis due to this. Not to mention, while self diagnosing may help you find people who relate, it cannot help with treatment. You cannot prescribe yourself medication or therapy, which is why having a doctor diagnose is best, but again, that doesn’t mean you can’t do your own research and work with your doctor to help find the root of the cause.
Again, the big debate against whether self diagnosis is okay or isn’t okay is far too complex for me to cover in a simple post. This is about doing the research and talking with your doctor to get official diagnosed.
The main thing to do is to list your symptoms or current conditions, start looking up your symptoms, if you have matching symptoms with a few different things than you need to look for eliminating symptoms. In the example of RA versus JHS/EDS: RA causes pain, swelling, and stiffness. JHS/EDS also causes pain but typically not swelling and stiffness so if you aren’t experiencing the symptoms of swelling and stiffness you may be able to cross of RA. Ultimately you can come up with some ideas as to what might be the problem and then present that to your doctor.
I never would’ve expected my doctor to to seriously consider EDS for me, but after extensive research and looking into family history, it really seemed to fit, and when I brought it up to my doctors, they agreed. While many doctors are against google, it goes to say that research can never hurt. My doctors never would’ve even thought to connect the dots of my illnesses to a connective tissue disorder had it not been for my own questions and research.
Never be afraid to speak up to your doctor about your beliefs and concerns, you never know what you might think of that they haven’t. Two minds are better than one. Just make sure to do your research. Keep a notebook. Stay determined.