Chronic Migraines, TMJ facial pain and Fatigue, Current Diagnosis leaning towards Fibro or RA...

Bones, joints and muscles
1

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,

2

Has no-one considered giant cell arteritis? About 20% of patients with GCA have normal ESR and CRP so whatever any rheumy may say - that doesn't rule it out. YOu have a few things that are not entirely "usual" - I refuse to say "typical" since the "typical" GCA patient does not exist. You do not always see the eye signs but that pred works is a small indicator. Polymyalgia rheumatica can be a precursor for GCA (your clumsiness etc) and fatigue - whatever it is it is an autoimmune disorder but if you came to my home forum with those symptoms we'd suggest GCA. 

I do hope you find a less blinkerd doctor at some point.

3

Hello

Sorry you sound like you're really suffering

I have had RA for 14 years the only time I have suffered with facial pain headaches is when my jaw has been inflamed

But have never had half the symptoms you seem to be experiencing.

I really feel for you and hope it gets sorted soon

My son did however suffer from severe migraine for 2 years cluster headaches they were called he was treated with an epileptic medication and they cleared up after about 12 months.

4

I suffer chronic head pain mainly in forehead, and migraine, was referred to ent department at hospital and eye clinic, turns out I have glaucoma and swollen nasal pockets in my face, which both cause chronic migraine, so for you it might be something as simple as this, maybe suggest this to your gp

Hope this helps

5

Hi, I have a lot of the symptoms you are describing and I do have fibro.However because the prednisone worked for your headache that suggests something else is going on.You could still have

fibro but have something else like GCA-Polymyalgia Rheumatica.

I am working through this very situation right now.I have

symptoms of PMR and RA.One thing I have learned is gluten

causes me to clench my teeth so I avoid it as much as

possible.It takes time to sort through these conditions.I hope

you find the answers you need

6

Years ago I was referred to a neurologist for the headaches and he pointed out the cervical neck area was affected by the RA or osteo, and growing osteophytes that irritate the muscles and cause referred pain to the face area.  I wear a neck collar now when I start getting headaches.  Also found high blood pressure was part of the reason for the headaches and once getting that treated, I do well most of the time with only a rare case of headache.  For light sensitivity I found I had roseacia affecting my eyes.  I use a topical now on my cheeks that actually get to my eyes as well.  Hope you find some answers.  

7

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 😊

8

Thank you for the suggestion EileenH, I have not heard of GCA but will certainly be looking into it and mention this to my Rheumatologist. I have also been considering a second opinion from another Dr. I appreciate you taking the time to respond.

9

Thanks for taking the time to respond and share Jayjay1959, sorry to hear you've been dealing with RA so long.

Ive had migraines most of my life, but the prior year they've changed and increased to almost every single day. usually 25 days out of each month or more..

I'm glad to hear your sons migraine issue cleared up. I've tried high blood pressure medications (metroprolol tartrate) and epileptic medications (Topamax) nothing has helped.. and I'm currently on gabapentin at night to help sleep and pain.

Well wishes to you both.

10

Thanks for responding Debbie 39876, sorry to hear about your head pain but glad to hear you were able to find a cause. 

Glaucoma runs in my family history but my eyes have been checked, and rechecked with no issues so far. I am considering a trip to the ENT even though a recent MRI of my brain shows no reason for concern according to my doctor. Hope you are doing well. thanks again!

11

tory38006 Thanks for responding, sorry to hear you are fighting through a similar uphill battle. Interesting to hear about your gluten sensitivity and clenching. I dont have any known food allergies/senstivities but I have skin allergies & I'm very sensitive to many chemicals/products.

I dont seem to clench but I grind like hell in my sleep to no avail. I wear a mouthguard for it but I'm slowly grinding it away (bye bye $1000 specialty mouth guard!) My wonderful physical therapist, chiropractor and dentist have helped me to cut down on jaw and facial pain but I just cant seem to get back to "normal" and they cannot figure out why.

Wish you well!

12

Lynn15111, glad to hear you were able to find answers for your headaches and solutions to help alleviate them.

I don't have high blood pressure but I'm currently on high blood pressure medication (metroprolol tartrate) to try and relieve my headaches, so far it has done nothing to help.

Best wishes to you!

13

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! 

14

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!    

15

I understand the frustration I really do.I have been given diazepam

to help relax the tension.I can't take but a quarter dose,I have drug

sensitivity from the fibro.Maybe you cold ask for a muscle relaxer

to help.With all the clenching and grinding that causes stress on your

body.Heating pads are wonderful to use on side of neck and face.

I have favorite scriptures as well I like to focus on,it really can be

comforting.You could be having a reaction to something.Try for 1

week an elimination diet,I had no idea I was having gluten problems

until a friend explained her situation with gluten.I did for 1 week no

gluten and yep I stopped clenching.I introduced gluten back in my

diet and started clenching.Google frankenwheat,it's very interesting

information.

16

Further to the GCA and Polymyalgia rheumatica, I was reading that it usually occurs after the age of 50 and its rare to have the condition in younger age.. I'm only 27. I will still mention GCA to my dr. but was wondering if younger people often get diagnosed with GCA and Polymyalgia rheumatica. Thanks again!

17

Heating pads are certainly my best friend, I use them regularly with my tens unit. I even have a heating pad at work because I just cant seem to get by without it. I've tried muscle relaxers as well and they seem to help, just hard to take and function/get to work for my job. I'll look into and consider doing the elimation diet. thank you!

18

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,

19

It happens in people in their 40s and there is one well-known proven documented case in a 37 year old male (GCA is rare and even more so in males). There are a few papers in the medical literature warning about the risk of writing it off as a diagnosis on the grounds of age. Yes, it is unlikely, unlikely doesn't mean it never happens. There is also someone on one of the PMR/GCA forums who HAS been given a diagnosis of PMR in her mid-20s. 

However - what is pretty certain is that you have an autoimmune disorder of some sort and it is not good enough to simply write it off as fibromyalgia if pred works to relieve symptoms - it DOESN'T work in fibromyalgia. 

20

Have you gotten your neck x-rayed to see what shape they are in?  To get the t1 they take it straight on with you holding your mouth open.  If you have any joint narrowing, bone spurs form and they will be able to see that as well.