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Advice needed after rheumatology evaluation please

Ten months after first asking my primary doctor for a rheumatology referral, I finally had an appointment with one yesterday. It didn’t go as well as I had hoped. I have a lot of different symptoms and pain in every area of my body. I have seen a neurologist, gastroenterologist, and orthopedist. I do have tendon tears that are causing pain, but it doesn’t account for most of my symptoms. My ortho and physical therapist think there might be a systemic tendon issue. My doctors ruled out many things with lots of tests. They only want to cover up symptoms, so I was persistent for an answer and finally got a referral to a rheumatologist. Unfortunately, he was pretty dismissive. He said he read my medical records from my primary care, he asked me questions, and he gave me a physical exam. He asked if I had a prostate exam (I am a transgender man) and didn’t know most of my current diagnoses. I also realized later that he didn’t ask me about my cognitive symptoms or check anything but the areas I already know there are tears and push on a few of my vertebrae. I asked about pain management because I am allergic to corn and derivatives which are in most pharmaceuticals. He didn’t know anything about compounding medications or herbal supplements. He recommended physical therapy and to “figure out what works for you.” At the end of the appointment he said he was ordering 4 blood tests. Repeating the 2 inflammatory markers my doctor has tested a few times and were normal, a different RA test, and one to check for muscle degeneration. He said that if those come back normal than I don’t need to follow up with him. He said to follow up with my ortho because my pain is likely due to injuries and micro traumas. And to see an endocrinologist, even though I already had a lot of hormones checked with my primary and doctor who prescribes my testosterone. And to continue with the heart monitor I’m wearing this week and the cardiologist because I could have postural tachycardia. I was nervous and felt pressured to say that plan was fine.

I got the blood work results via the lab’s app today and they were all normal. I am so upset. The doctor said someone would call me with the results. I am not a doctor, but I know there are other tests, blood and otherwise, that can be done to further investigate my symptoms. I’ve been researching my symptoms and connective tissue diseases for over a year. I feel like most medical professionals don’t care enough to dig deep into what’s going on and just pass me off to others or give me meds for symptoms.

I don’t know what to do. Do I tell the person who calls from the doctor’s that I want to follow up anyway and ask the rheumatologist for more testing? Do I go back to the ortho and have him check all of my joints, back, neck, hands and feet? Do I ask my primary for another referral to a different rheumatologist, when she didn’t even want to refer me in the first place? The original referral said “low suspicion of rheumatic cause, patient requested eval.” I don’t know.

I am just so exhausted, feel defeated, and want to give up.

#Undiagnosed #ChronicPain #ChronicIllness #CPTSD #Depression #GeneralizedAnxietyDisorder #Anxiety #ObsessiveCompulsiveDisorder #AvoidantPersonalityDisorder #SuicidalIdeation #CarpalTunnelSyndrome #TriggerFinger #Bursitis #Tendinitis #rotatorcufftears #labraltears #sciatica #Migraine #IrritableBowelSyndromeIBS #SleepApnea #Asthma #GastroesophagealRefluxDisease #Allergies #Folliculitis

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EDS Trigger finger?

Anyone with EDS experience “trigger finger”?
I guess I never realized that it’s not “normal” for one’s fingers to lock around an object after holding it for too long lol.
For me it’s a cell phone, a book or a coffee mug, or a pen. I can’t place an exact timeline for this phenomenon in my life, but I feel like it’s been happening as long as I can remember. Most recently, my right hand feels very tight when I wake up in the morning, and when I close my hand, my fingers, especially the ring and middle, sort of lock up and pop upon reopening.
This is interesting, since I was recently dismissed by the rheumatologist that I sought for my Ehlers-Danlos diagnosis, bc he said he couldn’t help me.
He DID, however diagnose me with hEDS, fibromyalgia, chronic fatigue syndrome, and osteoarthritis.
But upon examining my hands, he said I didn’t have any qualifying signs of anything he could treat me for.
I’m rambling.
It’s frustrating.
I’m in a lot of pain, in multiple places (Mainly my neck and back, due to bulging disks) and the meds I’m given don’t help much. They do however, make me feel weird and out of it.
Which I hate.

#hypermobileEhlers -DanlosSyndrome #Fybromyalgia
#ChronicFatigue #Osteoarthritis



I’m so fed up of being in constant pain and I feel things are getting worse not better as time goes on. I feel I have no where to turn for support or help and like I’m drowning as I’m lost of what to do. I feel like everyone’s sick of hearing me moan and my husband fed up of me not being able to do as much. #Endometriosis #PolycysticOvarySyndrome #IrritableBowelSyndromeIBS #Anxiety #DeQuervainsTenosynovitis #neckpain #ChronicPain #TriggerFinger


I need help. #CheckInWithMe No one will effectively treat #ChronicPain & #PanicAttacks bc #Stigma #blackbox . #ComplexRegionalPainSyndrome #Anxiety

I don't know if this needs it but just in case I'll include #TriggerWarnings.
I feel this is very difficult to say in an articulate manner, so apologies if I am being crude or inadvertently insensitive.

I have reached a point of my illnesses that I am now very seriously less concerned with risk of #overdose compared to risk of #Suicide . I am not being treated effectively (or *at all* for acute knee injury) for #ChronicPain that is causing more #SuicidalThoughts than my #Depression , #Anxiety and #CPTSD combined.

I need help. #CheckInWithMe
I have an appt tomorrow with my psychiatric nurse practitioner. I have multiple #ChronicIllness (es) and I have #CPTSD #GeneralizedAnxietyDisorder #PanicAttacks #PanicDisorder #MajorDepressiveDisorder #DiabetesType1 #Fibromyalgia #EhlersDanlosSyndrome #ComplexRegionalPainSyndrome #Scoliosis #CarpalTunnelSyndrome #TriggerFinger ... aaaaannnnddd the list goes on. I am struggling daily "recovering" from a knee surgery I never should've had, a grade IV tear of my tendon on the opposite leg/ foot, neither a good leg to stand on. I have needed to use my crutches for a year and a half which has now caused permanent damage to my hands. the trigger finger pain in my hands is far greater because I had no clue my carpel tunnel had returned. I am unable to walk without supportive braces/ crutches and I have just re-injured my knee that has landed me back on both crutches. I am awaiting prior authorization for my wheelchair. I attempted to harm myself this summer, which has now become part of my permanent medical record and cruelly misdiagnosed a multitude of new barriers. when I say that I attempted to harm myself, I say that lightly but seriously. I knew I needed help because my pain (emotional, mental, spiritual, physical etc.) caused me to write a letter. I had to be honest with myself that even if this was only a "just in case" letter, the very fact I wrote it was enough to warrant help.
here's what really troubles me: I *harmed* myself by stealing pain medicine from someone I loved and who trusted me. I am not a thief nor a liar. I truly believe that I was more bothered by the extreme shame I felt than by the non-lethal combination of medication I took in an effort to finally sleep through the night, just one night.
I am deeply embarrassed writing this... I have been on long term #Benzodiazepines, I am a fully compliant and responsible non-abusing patient, and I literally took two pain pills at a time of the five I stole., thus the issue of "failing" a drug test for which I completely and honestly told on myself. I was totally transparent.
I am severely depressed, but I am severely crippled by the physical pain that has exacerbated the emotional struggle and thus the internal problem of risk vs benefit. if you made it through my rambling, I thank you sincerely. even if you only skimmed, I still thank you sincerely. Namaste🙏