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
Hi, my name is cornwoman1. I've been diagnosed with
#MightyTogether #BipolarDisorder #PTSD #Anxiety , catatonia, diabetes, hypertension, TMJ, c-spine injury, Acquired Brain Injury, thyroid cancer, multiple myeloma, asthma, chronic bronchitis, GERD, duodenal ulcer, chronic pain
2 reactions •
1 comment
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
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
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
1 reaction 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
New here. I have most of the fibromyalgia symptoms but I don't experience pain with light touch.
Still I am hypersensitive to light touch which causes immediate spasms and cramping in various muscles. Specifically my jaw/ear area and back.
I also don't believe I have hyperalgesia.
What I do have is terrible TMJ pains. chronic deep muscle pain all over my body. Feeling of exhaustion all the time. Waking up every few hours when I try to sleep. Not waking up refreshed. Mostly waking up with severe stiffness and aches. Having a hard time to do much of anything physically within a 8 hour timespan after waking up. (I don't have sleep apnea).
Hypersensitive to select muffled sounds. Hypersensitive to visual triggers. IE when someone is standing fairly close to me and engaging me.
I am just wondering if there are people who were diagnosed with fibromyalgia but who don't have hyperalgesia and where allodynia does not give pain signals.
14 reactions •
10 comments
Good morning everyone. How are you all doing today? I wanted to share that I'm seeing 3 doctors within a 3 week period. An ent in 2 days, a neurologist in a week & a spine doctor in 18 days. I'm becoming a little anxious about each of these appointments for a few good reasons. There's lots of pressure on me to say the right things & explain to them that my problem is real & is affecting my quality of life. Problem is the issue that is causing me digestive issues, swallowing issues/clicking throat, grip issues, posture abnormalities, gait disturbance/ wide based gait, tinnitus, tmj etc. I have proof of the digestive symptoms yes ew, but they may be critical in figuring out if I have an infection or not. The neurologist will need to figure out on top of all that if radiological findings are just porencephaly or something more sinister.
My guess for the first set of problems is an encephalitis of some kind. I've read about how infections can be dormant then occur suddenly after stress, excercise etc. Before we moved houses I got a pinched nerve in my neck that with correction unleashed its wrath on my poor body. I'm hoping the neurologist can piece together whats going on there. Bloodwork, urine etc have comeback normal so I don't know how we are going to detect something that is getting harder to find? The spine doctor will need to figure out why I have a posture lean. The ent will need to figure out if my swollen lymph node & nodule are benign or cancerous. There's alot we need to figure out & its kinda overwhelming. I hope all will be revealed soon. I'll keep you guys & gals updated as I learn more. Have a great day.
3 reactions •
3 comments
Hi! I'm new here...first post!
I have fibromyalgia and tmj. I came to realise recently that I've been in denial for the last 20 odd years about my fibro and have been constantly masking most of my symptoms. I've burnt myself out countless times over the years.
I'm currently recovering from a tmj jaw op- the severity and difficulty of my recovery has finally opened my eyes to how much I pretend I'm ok and that I really can't maintain this much longer. I'm only 40 but I think I need to slow down and it's frightening to be honest. I'm just so sick and tired of being sick and tired. #Fibromyalgia #TemporomandibularJointDisorders #sickandtired #denial #Masking
5 reactions •
4 comments
Latest
