Looking for any advice on handling upcoming appointments and anything that has helped you to be heard when dealing with doctors
Apologies in advance for this very long post but I am at a loss.
I’m looking for advice on how to handle my upcoming referrals. I have previously been diagnosed with RA, Hashimoto’s & Sjogren’s plus fibromyalgia (which is likely just Sjogren’s )
I’ve been flaring for a really long time. Since at least 2019. My rheumatologist is insufferable. I’ve been on the same biologic the whole time and when I saw him a year ago I made the mistake of asking him a perfectly reasonable question about testing which apparently emasculated him because he yelled at me and told me if I didn’t like the way he practiced medicine I could find a new doctor. He then proceeded to dismiss all my symptoms and told me “Well you are 50” 🤬
I have not been back to see him and currently do not have a rheum.
At my last appt with my GP, she walked in the room and said “OMG you look so good! Have you been exercising??” 😑🤯😑 I looked at her and said “No I’m just actively dying because I live on rice cakes” 😆 (I’ve lost over 50lbs)
Like how tone deaf do you have to be? She’s been my doctor for 3 years it’s not like she was unaware of what symptoms I’m having but she isn’t concerned because my labs are “Normal” (my B12 was low)
I’m having a lot of advanced symptoms which include severe GI motility, inability to regulate body temperature, severely dry eyes, mouth and throat. I’ve started choking on food lately and with my GI symptoms I’m on a very limited diet of things that don’t exacerbate my stomach (cut out all processed food, sugar, gluten, nightshades, dairy, uncooked vegetables and fruit)
I’ve been having bladder issues that mimic symptoms of interstitial cystitis for at least 3 years. I just had two severe back to back UTIs
In 2019 I had to have all my teeth pulled due to a flare. I also had to have an emergency hysterectomy because I was in the ER constantly due to how much blood loss I was experiencing.
This year I’ve been riddled with back to back thrush episodes and chronic cankers
I get rashes on my face almost everyday and I cannot be in the sun because both my eyes and skin are hypersensitive to it. My eyes are so bad right now I pretty much have a headache all the time.
The fatigue I’m currently experiencing is bone crushing. Worse than pregnancy tiredness and worse than what I’ve ever experienced from Hashimoto’s. I’ve never been this tired. Some days I cannot physically get out of bed. And on the days I can and am able to accomplish anything I generally need 3 days to recover. And I’m also in a ton of pain throughout my entire body which is affecting my mobility
I was also just diagnosed with small fibre neuropathy which is what made the lightbulb come on that this is all Sjogren’s related after I did a huge deep dive. I was shocked to find out that Sjogren’s is a lot more than just dry eyes and mouth because none of my doctors have even considered it as a possible cause.
My RA is apparently in remission and my Hashimoto’s is under control as well.
Just recently I’ve begun having issues with my balance as well which has me very freaked out. And I’m having terrible jaw pain on both sides right where the jaw hinges so I assume it’s my salivary glands. And the brain fog is the foggiest it’s ever been to the point I can’t even say words I used to say and often have delayed word recall during conversations.
My symptom list is akin to a CVS receipt so I get that it can be overwhelming. I, like I’m sure so many of you, get extreme anxiety prior to appts now due to the fact that no one is even trying to figure this out except me and I get dismissed constantly and now I get so overwhelmed during appts I very often end up in tears.
How can I navigate my upcoming appts in the most effective manner possible to get the highest possible outcome. I always go in prepared with lists of my symptoms and photos that are relative like my feet and rashes but up until my nerve conduction test with the neurologist no one has really listened or even tried to connect any dots.
Because I’m certain my stomach issues are related to autoimmune autonomic involvement how do I navigate my GI referral without having a nervous breakdown. How do I relay what is a lot of information without it being an ineffective info dump?
I also have a follow up appt at the end of the month with the doctor who referred me for nerve testing. He is a very prickly and cold man who also dismissed all my symptoms and said very bluntly “going forward I will only be focusing on the outcome of your nerve conduction testing” But if it’s related to everything else going on…😩🙆🏻♀️
if anyone has any suggestions on what testing I should ask my GP to run I would be deeply appreciative.
Being a chronic illness patient is exhausting and very stressful and I’ve never been in such a degraded state that I feel inept in even advocating for myself when even when I did still have energy I was being gaslit and dismissed. It literally took me 45 minutes to write this post so I’m probably not going to qualify for Mensa this year 🤣
Sending love and hope to everyone who is also going through this frustrating uphill battle. 🫶🏼