Chronic Migraines, TMJ facial pain and Fatigue, Current Diagnosis leaning towards Fibro or RA...
Posted , 8 users are following.
Hello There,
New here and looking for guidance and opinions from those further along their medical journey in Rheumatology, specifically Fibro and RA. I've been dealing with chronic pain for a while but in the past year my problems have skyrocketed with no relief, my problems have been ruled out from a neurological standpoint and all tests point towards auto immune. Recent bloodwork brought me to a Rheumatologist. Anti CCP of 52 units, Rheumatoid Factor of 15. (ESR & CRP normal) Doctor was leaning towards my chronic pain issues being caused by Fibromyalgia and not RA. I am currently on gabapentin at night to help my sleeping pain issues. I've been through every migraine medication available and none will alleviate my pain except for prednisone. I was on steroids for 6 days and it was the first time in over a year where i went more than 2 days without a headache, it was pure bliss even with the steroid side effects! Other than prednisone the only positive results I've had is with chiropractic, Physical therapy & tens unit therapy, I will be trying acupuncture next week and from there I may try dry needling. (I'm running out of options for pain relief!) I am 27, F currently working through a number of health issues including:
-Chronic Severe Daily Migraines
-TMJ/TMD and associated Facial pain, bruxism, tinnitus (I wear a mouth guard at night provided by a TMJ Dentist)
-Constant Joint & Muscle pain – tender, sore, achy, stiff: Face/Jaw, Head/Neck, Shoulders/Back, wrists/hands, ankles/feet
-Severe pain in eyes, pressure/pain in eyes when moving them, extreme light sensitivity, blurry vision, seeing spots (eye checks all come back normal)
-Hand Tremor
-Balance and Coordination issues – unsteady on feet, tripping over own feet, feet “give out”, weakness in hands, breaking & dropping items/items slipping out of hand, lack of grip strength
-Constant Fatigue, Dizziness, lightheadedness
-Memory loss, foggy minded, confusion and stumbling over words
-Visible Muscle twitches (feet/legs), tightness in calf muscle, occasional painful “charley horses” in calves & feet (mostly at night)
-Pins and Needles/Tingling in hands, occasional painful burning sensation in finger tips, ice cold hands and feet to the touch
I've had all of these issues for well over a year and it seems no amount of physical therapy, chiropractic care, relaxation techniques, yoga, rest and time off from work will help. I'm at my wits end of being in pain every day. Every time I think I can go a week without physical therapy I end up having to call and get in.. or I end up feeling worse. I joke that every single day is a new battle because I normally wake with a dull pain that slowly worsens throughout the day.
Does anyone have any similiar issues or similiar story? Anyone here with TMJ/TMD condition with associated pain? Or Migraines with Fibro or RA?
Thank you so much for reading.
Take care,
0 likes, 19 replies
debaide ChronicMigraine
Posted
Your issues sound alot like mine. I am now 51. Have also been diagnosed with Fibromyalgia over 20 yrs ago. But, 6 months ago my current Rheumatologist says seronegative RA as well. I have all the symptoms you describe. I have the eye pain, wear the night guard for the TMJ etc. I have even been to the Mayo clinic in Arizona. All my labs are currently in the normal range. I do have some nodules, along with joint deteriorating factors. I'm now seeing an Ocular Neurologist for my eye pain. Along with my eye issues, I have enlarged lacrimal glands.
Anyway, I am wondering if you've ever had either a brain scan for your migraines or an mri of your cervical spine. I had terrible migraine issues along with tingling and numbness in my hands that was mainly due to bone spurs, Arthritis and degeneration in my neck. My neck was so bad it curved the wrong way. Look into it Hoping this helps 😊
ChronicMigraine debaide
Posted
Debaide, thanks for responding, so sorry to hear you are dealing with Fibro and RA. I've heard fibro and RA have high instances of TMJ problems so its refreshing to hear someone else actually with simliar issues to me.
I have had a xray of neck/head, CT of the brain, and 3T MRI of brain with and without contrast through my neurologist, all is clear and no issues were seen. I had prior MRI of spine after a car accident 7 years ago and have associated pain from a few bulging discs and stenosis but no further complications/relation to my current issues has been found.
I'm interested to read about ocular neurologists and will have to look into this. thanks!
Appreciate you taking the time to respond.. I wish you well!
Gloria814 ChronicMigraine
Posted
Oh my, how awful. My thoughts are with you for sure. I don't have any answers for you but I would think about another doctor taking a look at your medical records/ You should not be suffering so severely for SO long. Some others here have suggested poymyalgia or GCA. Hopefully they will look at those conditions to determine a diagnosis and treatment plan
Bless you and hope you get the help you need!
ChronicMigraine Gloria814
Posted
Thank you Gloria814, I appreciate the kind words and blessings.
I am in the process of obtaining a second opinion, getting into my current Rheumotologist's office is hard even as an established patient the wait times are long to be seen. I hope to not have this issue when i get a second opinion, hoping for better luck then.
Thank you and bless you,