Temporomandibular Joint Disorders

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Feeling alone and misunderstood…

Hi, my name is Brandy. I am 38 years old. I was diagnosed with Fibromyalgia 3 years ago. Although in hindsight I’ve been accumulating symptoms since I was 13. In my 20’s I knew my body was trying to tell me something was wrong. By then I was struggling with chronic migraines, anxiety, depression, TMJ, insomnia, losing major amount of weight, IBS, and plenty more were sure to come. I now have a 23, 19, and a 6 year old. All boys. And a 4 month old granddaughter. In the last 2 years I’ve lost myself in this illness. No one understands what I go through on a daily basis. The pain and the extreme fatigue. I hate having to defend myself constantly. Even to my own children. I’ve lost all of my friends. It feels like every month I get worse and worse. I don’t sleep or eat for days at a time. I can’t get out of bed for days and days at a time. Sometimes I don’t even have the energy to take a shower. Much less get up to cook meals for my family. I used to have such OCD and had so much pride in how clean I kept my home. Now I’m lucky if it gets cleaned every 2 weeks. And by clean I mean picking/straitening up. I miss my old life. Desperately. I used to be so full of life and energy. It’s like I know this illness won’t actually KILL me, but it’s slowly killing me. If that makes sense. I stumbled across this platform while scrolling on Pinterest and I’m glad I did. It felt so good to see other people who relate to me and what I’m going through. I’m hoping that joining this platform helps me cope with the life I’m left with.

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Need advice #chronicmigraine

I need advice/experience! My neuro wants to start me on Ajovy to help with migraine, Propanolol hasn’t done the trick the last 7 weeks.
I also have Fibromyagia, TMJ, depression and anxiety.
I hate the thought of an injection, but the migraines are really taking a tole

12 reactions 4 comments
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Signs My Doctors Missed #EhlersDanlosSyndrome

I won the lottery on genetic diseases, all diagnosed later in life. Sarcoidosis, Raynaud’s Syndrome, Autoimmune Arthritis & now Hypermobile Ehlers Danlos Syndrome.

The symptoms of Ehlers Danlos were there from the start. My Drs never added them up and missed these symptoms:
◼️HYPERFLEXIBLE ▪️Bend thumb to wrist
▪️Crisscross fingers
▪️Hyper flex elbows
▪️Jaw pops out of socket opening mouth
▪️Can put my hands flat on the floor bending over
▪️Knee caps dropped often
▪️Was teased because I ran strange
▪️Hips sublex out of alignment easily
▪️Mild scoliosis
◼️SENSITIVITY
▪️Clothing & fabrics irritated my skin
▪️Scars are sensitive to touch
▪️Can’t wear necklaces or heavy clothing on my neck
▪️Sharp bone pain when young
◼️SKIN SIGNS
▪️Smooth, soft, stretchy skin
▪️Horizontal scars across the back
▪️Wounds slow to heal
◼️IBS

My maternal grandmother, mom, daughter and son all have these same symptoms. I am the only one diagnosed thus far. What used to be a novelty as a child now causes great pain.
#EhlersDanlosSyndrome #IBS #HyperFlexible #TMJ

3 reactions 5 comments
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Signs My Doctors Missed #EhlersDanlosSyndrome

I won the lottery on genetic diseases, all diagnosed later in life. Sarcoidosis, Raynaud’s Syndrome, Autoimmune Arthritis & now Hypermobile Ehlers Danlos Syndrome.

The symptoms of Ehlers Danlos were there from the start. My Drs never added them up and missed these symptoms:
◼️HYPERFLEXIBLE ▪️Bend thumb to wrist
▪️Crisscross fingers
▪️Hyper flex elbows
▪️Jaw pops out of socket opening mouth
▪️Can put my hands flat on the floor bending over
▪️Knee caps dropped often
▪️Was teased because I ran strange
▪️Hips sublex out of alignment easily
▪️Mild scoliosis
◼️SENSITIVITY
▪️Clothing & fabrics irritated my skin
▪️Scars are sensitive to touch
▪️Can’t wear necklaces or heavy clothing on my neck
▪️Sharp bone pain when young
◼️SKIN SIGNS
▪️Smooth, soft, stretchy skin
▪️Horizontal scars across the back
▪️Wounds slow to heal
◼️IBS

My maternal grandmother, mom, daughter and son all have these same symptoms. I am the only one diagnosed thus far. What used to be a novelty as a child now causes great pain.
#EhlersDanlosSyndrome #IBS #HyperFlexible #TMJ

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Dental Care and Chiari Malformation

I always dreaded the dentist. See, I don't tolerate novicaine well and for me, it usually requires many shots to numb me up. Even then, there are side effects. Rise in blood pressure from anesthesia, anxiety, jitters, pain, aches. The dentist hasn't even been to see me since trying to numb me up, other than I can hear them yell from another room - "Is she numb yet?" So by now I can't feel most of my face, I'm excessively drooling, I've lost my time slot for care, and I have the jitters (all of which I am desperately trying to control). Stressed and more anxious. I dread the dentist.

Two years ago I had a cracked molar which needed extraction and an implant. I was stressed about it, my pain level had been in total B!tch gear for over a year putting it off, and I was trying to conjure ways to avoid that day. Well, one week after this horrible experience of oral jackhammering, I developed a chronic case of vertigo. At the three month mark I just couldn't take it anymore and my PCP sent me for my first Brain MRI. "You have Chiari Malformation, do you know what that is?" "No, I'm not familiar with that, should I be?" And my journey has begun...

Dental context: I have known for 10+ years that I also suffer from TMJ and so I frequently ask the dental staff for breaks or to use a bite block to take pressure off of my jaw muscles. Only that day, because of the procedure and it being the back molar, I had to keep my mouth open further and longer AND my head was way back. This lasted for approximately 4 hours. My current team of doctors believe this was the 'perfect storm' to reveal my CMI condition. Now please understand I have suffered for more than 20 years with odd symptoms that no doctor was able to define. This one day was my curse and blessing. I finally was able to hold on to a symptom long enough to acquire a positive test result, and finally put a name to the condition(s) I have suffered with for so long.

Be your own advocate, speak up for yourself. Think about the cause and effect of actions. Little did I think that laying back in a chair so I could have my teeth cleaned and repaired would result in the scariest news of my life. I now remind the dentist/hygenist each and every time what my challenges are and that if I should need to speak up, there is no negotiating - I must take a break.

Do you have a similar experience? Please share your thoughts and ways in which you cope with dental examinations/procedures.

#ChiariMalformation #ArnoldChiariMalformation #ChronicPain #EhlersDanlosSyndrome #TemporomandibularJointDisorders

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I feel like curling into a ball and crying #Fibromyalgia #TemporomandibularJointDisorders #chronicmigraine

It hurts and I’m so tired. I have to dog sit but the dogs are killing me. It is making me so miserable. I want to leave but the dogs want to be near me at all times.

I have nothing for relief. The dogs want to be all over me. I can’t take it. I don’t get irritated like this when I work. This is the first time I have felt like this.

I feel like crying and just laying down and locking myself away from them. I want to just not be in pain. I want to not be here. I hate how I can’t have anything without pain anymore. I just hate everything right now.

7 reactions 1 comment