Wondering about GCA pain/or is it dental - PMRGCAuk

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Wondering about GCA pain/or is it dental

31 Replies

My labs came out better than ever but I was on 40 mgs prednisone.. so now he has me on 30 mgs and I still had and have jaw pain. BUT here is the problem about determining if it is dental problem or GCA. I have pain off n on in a molar on top and a molar right below. It feels as if the roots are cracked and if I bite down gently but firmly it feels as if I seat the tooth back down. Yes I will be looking for new dentist

Then went to PT to get shoulder strengthening so I won’t dislocate it again. The problem is I went in with tiny pain and last night n today both shoulders ache at about 4-5 pain level. I am worried about doing more of the exercises. And no my PT guys know nothing about PMR.

I was given some rubber bands to do stretches and pulling. Then I am to do push-ups on kitchen counter.... sure would be nice if something went right.

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31 Replies
HeronNS profile image
HeronNS

Uh oh, I would say the physio has given you the wrong sort of exercises. They probably should be giving you exercises targeting the specific small muscles which need strengthening before you ever get to the pulling and stretching and push-ups. I have always responded well to physio. The exception was when I went for shoulder exercises pre-diagnosis. Going in for my second visit and being told to do twenty stretches with the rubber band I actually burst into tears. They immediately rethought what to do, gave me a different treatment to relax muscles and then recommended massage (also useless) instead of physio. My current physiotherapist has given me a completely different regimen which does not include any resistance exercises.

in reply to HeronNS

Thanks for your insight. I thought it was a bit much. I go back in a week and I will do as I have been doing with just stretching and flexing.... not going to use bands. I remember when I was still undiagnosed that the PT guys would put on the tens unit and crank it up. It actually felt good. Might ask about that my next visit. To think that prior to PMR I did 50 sit ups and 21 push ups a day. Now it would kill me heheh... oh getting is so much fun..

HeronNS profile image
HeronNS in reply to

One of my exercises is to stand near a wall, neither facing nor with my side against the wall, maybe roughly a 45 degree angle. With arm comfortably bent just walk your fingers up the wall, straightening the arm as you go until you reach full stretch. Then repeat. It seems like you aren't doing anything, but in fact you are. A former co-worker hurt her arm (repetitive strain) and one of her exercises was to stand with her arm hanging at her side and simply gently make a small swinging motion (not a wide or full one). Not so long ago I, too, was given this exercise.

in reply to HeronNS

Yes my doctor had given me the little swing of circle and I have been doing that. The walking up the wall is sorta like what I was doing prior to PT. Thanks so much for your help.

in reply to

The bands are useful if you use them to your own benefit. To be honest I use them laying on the bed to do leg stretches and gentle arm stretches. I find I can stretch without going too far laying down. If you have a dicky shoulder on top of pmr then you definitely need better pt.

in reply to

That sounds like a good idea. My cat has chosen one of the bands as a toy. She won’t play with cat toys she is so weird. But so cute. So I guess we will see if she helps me with bed exercise.

in reply to

You just know she will🐱

SnazzyD profile image
SnazzyD in reply to HeronNS

There’s no way I could have done that either when on high doses, even with starting off very fit,

SheffieldJane profile image
SheffieldJane

I have been measured for a guard to prevent me grinding my teeth in my sleep because my dentist noticed some erosion and loosening of my teeth. I was totally unaware that I did this ( my husband was oblivious too). I recognise what you describe about the teeth, so far no jaw pain though. It’s just a thought, but keep vigilant and try to sell a slow taper to your doctor.

All the best Jane. X

Those exercises would kill me. You need very gentle exercise, perhaps in a swimming pool, and a Physiotherapist that knows about GCA/PMR.

in reply to SheffieldJane

Hi Jane, yep I grind my teeth.

I had a root canal done and was going in for the crown which was over $500 but less than regular $1300. I moved and didn’t get it done. I have this metal spike that was supposed to set crown on. But when I went in I was told the surgeon would have to cut the gum back as it had grown over. The surgeon said he would not do it while I was on high doses of prednisone.

The problem is my teeth shifted just a tad but throws my bite off. I will have to see if I can find my old mouth guard.

My eye physician is really aware of slow tapering... I just don’t know what to make of jaw .pain...typically I have a slight headache to go with it.

I was looking at some videos online n got freaked out by them saying jaw pain is precursor to loss of vision.

SheffieldJane profile image
SheffieldJane in reply to

It is tough to make the right call sometimes. This worry hovers at the back of our minds - it does mine anyway. Perhaps talk to your eye physician, as he seems to be clued up and could perhaps ensure that your eyes are ok.?

I imagine that jaw misalignment could also lead to headaches. Any eye symptoms like double vision or blurring would send me straight to the Emergency Room though.

in reply to SheffieldJane

No visual issues just jaw pain when chewing. Wonder if it is more TMJ than GCA. It is so hard to determine at times.

BonnyQuine profile image
BonnyQuine in reply to

I've had GCA for nearly 3 years, and am down to 4 - 3.5 mg pred now. Haven't had jaw pain for ages, but did in the early days.

It was connected with chewing, or even just opening my mouth. 40mg pred did help a lot. V hard to tell where the pain is coming from. Some of it felt as if it was in the molars - I think the whole area just gets sensitised.

It seemed completely separate from the headache, which was v severe, and at its worst early in the morning. Also associated with scalp tenderness.

It also seemed to be associated with sinusitis-type symptoms, above and below the eyes, and some earache. At the time that seemed to be thought of as something separate, and I was sent to an ENT doctor whom I did not like at all. Looking back, I realise that it was all interconnected.

Hope you get it sorted out without too much delay.

in reply to BonnyQuine

I was on 40 mgs for a week and my labs were so good my Doc put me at 30mgs. I should have told him I still had pain. I will be calling him tomorrow. I think the stress of the move has flared me up.

I have almost everything where I want it to live have a few boxes to go thru but no hurry on that. I feel extremely comfortable in my new place and am enjoying the peace and quiet. I am told it gets party time in summer so am going to relish this winter...

I also have an appt with a surgeon tomorrow as my doc wants me to have an endoscopy. Lucky me they get to find yet another thing wrong.... yep I am definitely weary.

SnazzyD profile image
SnazzyD in reply to

The trouble is that with teeth problems like that your jaw is going to give you pain. Do the jaw muscles rather then the joint get tired with chewing, only to resolve when you stop?

in reply to SnazzyD

I can’t tell for sure...my jaw simply aches. I have the slightest tenderness on right temple area. The worry of blindness makes this so much more than it needs to be. I see my eye physician every three months and he checks everything he is very thorough. So far my eye checks are good except for slight elevation in pressure which i take drops for.

SnazzyD profile image
SnazzyD in reply to

Is there a plan to address your dental issues?

in reply to SnazzyD

Yes I am looking for a dentist n will decide next week. New town so need to ask a few people who do they use.

PMRpro profile image
PMRproAmbassador in reply to

Does it ache all the time or just when chewing?

in reply to PMRpro

It seems like all the time .. Not a bad ache but there... Then there are times it is just with chewing.. I guess I will have to pay more attention... I try my best to ignore it as it just frustrates me...

My shoulders are still sore from PT so will not be doing the exercise he gave me.

Longtimer profile image
Longtimer

I once rang a Physio recommended to me, asked what I had wrong with me, she said I won`t treat you I could make you worse!...I admired her honesty.....have only ever had Acupunture, which just gave me a lovely night sleep...but an expensive one!..Be careful...

in reply to Longtimer

Yes I would be open to acupuncture but it is over my budget for sure. I had my first massage and she had to go very light or it hurt. Imagine can’t have a massage. So strange..

Longtimer profile image
Longtimer in reply to

I don't have them, they always think it 's very gentle, but it leaves me sore....I have a facial and then a very gentle head massage, but I warn them beforehand!!..😉

in reply to Longtimer

I went in for my first pedicure a year ago oblivious to what all they do. When she started to massage my calf I almost hollered. I couldn’t believe how tender my legs were. She looked at me like I was insane...

Longtimer profile image
Longtimer in reply to

We are such delicate little flowers...😉

I can't tell you how many times I have gone to the dentist, thinking I have a tooth , gum or root issue... but after x-rays, a through exam and good old look around the dentist can find NOTHING! The pain is usually way back in the molar area, on the top... it subsides after a few days, but is quite annoying! Sorry you are experiencing this!

in reply to

Oops hit wrong reply... yep same dental experience... it would be more simple if it was a tooth... I am looking for a dentist as it has been over a year since I have seen one. This is the part I hate finding new doctors...

Yes I have had the same experience they do exray n say you are fine ..... go figure.

pmrkitty profile image
pmrkitty

I'm having the same issue except my treo upper molars, one on each side are loose and are probably going to have to be pulled. I also got two big ulcers on the roof of my mouth, right next to the loose teeth and them I had a GCA episode five days later and was rushed to emergency where they treated me worth prednisone. I had previously lost some. Hearing in both ears and when I had the GCA attack I lost more! My vision is blurring but I'm not sure if it's the prednisone or GCA? I was just lowered to 11mg. of pred and having some jaw claudication and neck/headache, I called my Rheumatologist and she said if it gets worse come in to the office or to the emergency room but to stay on the 11mg. I see her in another two weeks. I hate this disease! Hope it gets better and hope you all have a beautiful day. Oh, I also get pain in my earlobes, crazy huh? Just taking it easy this last week, tired all the time. Hugs to you all!

in reply to pmrkitty

I get sores on my gums then they go away... My teeth one day feel loose then they are fine. It is so puzzling this pmr..

I have been down to 7 mgs n here I am again at 30...

I have crickets n frogs in my ears I guess it is a better tinnitus than some.

It has been a tad hard with my sister doing her best to help me off prednisone n not realizing it really upsets me for she is a health nut n knows all the latest fads..

PMRpro profile image
PMRproAmbassador in reply to pmrkitty

I'd be seeking a better rheumy. Your history is classical GCA - especially the hearing loss:

healthunlocked.com/pmrgcauk....

If you are having a return of classic GCA symptoms - it needs close monitoring and action.

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