Today, I had an appointment with a geneticist at Cedar- Sinai and she has slapped the label of Hypermobility Spectrum Disorder on me. The reason being that I fit the criteria of HEDS except that I have autoimmune issues. She has agreed that there are people with autoimmune and heds, but doesn’t think genetics is the cause of my Hypermobility connective tissue issue. Not sure where to go from there, lol.
What was bold was that she continued to say that subluxation affects the brain and makes it think that there is pain when there’s not and that I should see a physical therapist or a cbt therapist and that would help. I think it’s easy for people who don’t deal with pain to say that the pain isn’t real but I’m dealing with more than one condition that involves pain and nerves so 🤷🏼♀️.
I guess this means I fit even more under the lupus category?
Written by
JennaShi
To view profiles and participate in discussions please or .
I can understand thinking a CTD could resemble hEDS if enough connective tissue disintegrates over time due to autoimmune issues. I sometimes feel very EDSy with my symptoms. I resemble BarnClown very similarly but I do not have hEDS. I think it’s from ischemia of my supporting tissues and fat that makes my skin stretch. My joints pop in and out but I’m not double jointed. I have various findings that were prevalent enough to see a geneticist just as you have and he said I unlikely had hEDS because I didn’t fulfill all hypermobility criteria.
With that being said, the subluxation argument is antiquated. We tried to argue that pain and in particular, fibromyalgia was just a problem with brain stem pain signal filtering. As a physician, I never bought into this. I think it’s complete BS. Then they will say antidepressants help blunt the signal when they don’t know diddly squat. We have pain where we do because something inflammatory or ischemic is happening to either the muscles, joints, nerves or a combination. Cervical spondylosis can cause all types of stuff to the rest of the body but this is a real phenomenon called cervical spondylosis myelopathy.
My mind isn’t playing tricks on me. It’s just hard for providers to fathom how well we handle exceedingly high amounts of excruciating pain. I’d tell her to go back to the literature because her way of thinking is obsolete. Try again.
You’re so knowledgeable, JMiller. Thank you for sharing your experiences and wisdom with everyone, I say this with respect, as I understand how unfortunate as these kind of experiences are/ can be. This is new information for me and I want to learn more. I had no idea that Lupus or other autoimmune diseases could cause this until today so this is new and great information! Thank you!
I agree with you, not because I have the knowledge, but experience of repeated knee dislocations as a child due to sports. It was painful and I would think involve the nerves as something dislocates and gets put back into place. Ohh, I will look for an article that you might find interesting on this topic. Dr. mihaela Taylor at UCLA gave me an article and talked about Fibromyalgia and Central Sensitization syndrome being caused by Neuro inflammation. I will look for it. I hear Fibro was quite the debate for a long time as to whether it was psychological and or more.
I agree, and constant pain does affect our brain and the way we function, but it is real pain!
I distinctly recall when they started using the term myalgic encephalomyelitis for fibromyalgia, which is now used for CFS. I remember every provider having a look on their face like what does this mean? Literally look at the root words. Myalgic (muscle) encephalo (head/brain) myelitis (inflammation of nerves).
It makes NO sense. Look up what it means on Google. Even they can’t explain it. It’s all based on clinical picture and symptoms. Want to know why? Because it’s a load. It’s literally a made up umbrella term for we have no clue what’s up but we need a code for your nonspecific pain, fatigue and the problems it causes. Myalgic defined as fatigue makes no sense (to me). It implies something is wrong with the muscle yet encephalitis denotes a brain inflammation and lets add myelo in there to cover ALL nerves. If this is true then why isn’t everyone with ME offered a MRI to make a “diagnosis”?
I’ve been scanned by an MRI 10 times over and I have zero inflammation in my brain or spinal cord. It’s all joints/arthritis and connective tissue wasting that makes things shift. I believe in referred pain which is when something inside your body hurts elsewhere outside eg gallbladder usually causes pain in the right shoulder based on where that nerve reports back to in the spinal cord.
I could go on. And I know I may be testing boundaries when I speak of this. I don’t mean to offend anyone who is an advocate for or has been diagnosed with ME/CFS. I am a strong believer in there being an unfounded root cause for these nonspecific issues. As always, defer all questions and management decisions to your doctor or healthcare professional. I only act as a fellow loopie on here.
Pain is always real. And it takes a brain to process it (or whatever it does). So there is no such thing as « all in your head. » Everything is in our heads!
I can’t weigh in on the hyper mobility issues and CTD. But never think because a doctor encourages CBT or physical therapy that they are implying the pain isn’t real.
I have nerves that produce itching with certain stimuli. It’s in my head. My brain does something weird when my damaged nerves come in contact with certain things in the environment.
Thank you everyone I appreciate you all for sharing your thoughts, experiences, and expertise on all this! It’s both comforting (although unfortunate) to know that we share similarities and also to be reaffirmed that pain is real, whether it be from connective tissue, or coming from another place (inflammation or referred from spinal cord and nerves). I have so much to learn and feel like all of this is new territory and am excited to learn more.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thank you for supporting me after unsatisfactory appointment with allergy consultant recently
Do I contact my consultant?
Worried about latest decision made by new consultant 
PIP application -ATOS consultation required - seriously anxious
Today’s Appointment: meeting my consultant- Oral and maxillofacial surgeon 
