Nasal pain and/or facial pain

[lag713]

Do you suffer from facial and/or nasal pain? I've been checked out by my ENT recently and he gave me the all clear. My medications are working (joint pain is down and blood tests look better) but the facial pain and nasal pain keep bothering me. It seems like OTC pain relievers don't help relieve the pain. It's a weird burning and stinging sensation in my nose and pressure, fullness, and pain in my cheeks. I thought that the pain would go away when the meds were working and my nasal passages looked clear.

Besides nasal rinses, do you have any recommendations for feeling better? How do you deal with chronic pain?

[Alysia]

Hi,
I am sorry for your pains :frown:
I had nasal pains (causing facial pains) for years. it was wg-activity. eventough the joints were not aching, and the labs were ok, the nasal pain was to most stubborn.
only couple of months after getting my first rtx, the pain started to go away, but leave behind a saddle nose.
how to handle it ? I just lived with it, trying to ignore it and not to let it control me.
I don't rinse because rinses affecting my ears badly. but warm long shower allways relieved some pain.
do you still have nose "productions" ? blood ?
I hope you will feel better soon :hug2:

[lag713]

I don't have production or nose bleeds but I have blood in my tissue when I blow my nose. My ENT wasn't too worried about the small bits of blood though. I think medicine lags behind today. We need to focus on prevention whether it's preventing disease activity and subsequent saddle nose or kidney or lung damage. I think that there must be damage going on at a micro level that isn't visible to the eye if I'm experiencing this pain but it looks okay.

I'm glad your pain went away after a couple months of treatment. I'm sorry it left you with a saddle nose. I admire your courage of living with it and not letting it control you. Thank you for sharing your experience with me! :laugh:

[Alysia]

thanks for your good words :smile:
I am sorry to say :frown: but I think that as long as there is still blood coming out of the nose, this way or another, it means that the wg is still active and/ or smoldering.
others around, please correct me if I am wrong :unsure:
how long are you taking your mtx and how much of it ?

[lag713]

I've been on mtx since October 2013 but it was in low doses at first. My body didn't react well in the beginning. I've been on 20 mg in pill form between December-January. February-current I've been on 25mg in injectable form once a week. I believe that is the most that is recommended. My rheumatologist seemed reluctant but open to idea of prescribing rtx but my ENT thinks that is too much for me based on his evaluation. My ENT thinks I should give the mtx more time to work.

[Alysia]

as far as I know it is big enough doze and long enough time to start to see results.
the question is if you can see improvement over time, and then it means that it works for you. it takes time to beat that wg :scared:
but if you don't see improvement (that was my case, mtx did nothing to me) or not enough, then it is time to consider rtx.

[SpaceflightAddict]

I had some pretty serious sinus pain for the first few months of treatment, first thing in the morning was always the worst. It was a constant ache on the tops of my cheeks, and a stabbing searing pain behind my eyes. It took a few months of Cytoxan and prednisone to get my wegeners under control. Once it was under control though, things started healing and the worst pain started going away. If over the counter pain meds are not putting a dent in it, you should talk to your doctor about that. As much as I dislike prescription pain meds, sometimes they are needed.

[lag713]

My joint pain is better and my fatigue is lessening. I'm glad to have improvements but I wasn't having nasal pain before so I was nervous and saw my ENT. Only time will tell I guess?

[Alysia]

maybe time will tell...
but don't wait too much....
if it is getting worse don't wait at all....

[lag713]

The morning is the worst! I guess the nasal passages get dry overnight as we sleep. I started using a humidifier at night to help. I also have pain behind my eyes occasionally. Given that my lungs and kidneys are not involved, my ENT said there is not a good reason for me to go on ctx especially because I may want to have children in the future.

I feel like OTC meds never help with pain even before I had Wegeners so it's not surprising that it doesn't help now. I will talk to my doc about potential pain relievers. I don't want anything that would be tough on my kidneys (bc of GPA) or liver (bc of mtx). I know some research suggests that exercise, biofeedback, mediation, massage, mindfulness, and other therapeutic activities can be better at managing chronic pain than pain killers. If only they provided immediate relief...

[lag713]

I'm on strict orders (from my husband and myself) to let my physicians know if anything gets worse. Prevention is worth so much more than the alternative.

[Jaypfei]

Hi,
Sorry to hear that you're still having issues after being on methotrexate since Oct 2013? You may want to consult your ENT again and let them know about the nasal pain and blood.
I too developed the saddle nose when I had my first flare. The pain in the sinuses was so bad my upper teeth just throbbed. Fortunately I had an awesome ENT. He prescribed the highest dose of Loratab that the base pharmacy carried. Which isn't that high. But he also emptied out an Afrin bottle and filled it with the numbing spray they use when they scope your nose. I probably shouldn't be telling you this......but my ENT passed last November, so it's not like he could get into any trouble.
In any case, once I started treatment it was like the fourth infusion of Rituxan before I had any relief from the pain.
Again, talk with your ENT. If he isn't up for listening to your concerns, then you may want to find another that will.
Best of luck to you.

[lag713]

I just saw him last week. He said my nasal passages, sinuses, trachea, and upper lungs look good and that I shouldn't worry about the blood in my tissues. He wasn't too concerned about the nasal or facial pain and said to give methotrexate more time.

I'm definitely wary of the possibility of developing a saddle nose because of a lack of proper treatment. It was why I decided to see him instead of my local ENT who has little experience with GPA. Fortunately, I do not have dental pain but if I develop it then I will definitely consult with my physicians asap.

Thank you for sharing your experiences and treatments. I don't think he would get in any trouble! I appreciate the info!

[annekat]

thanks for your good words :smile:
I am sorry to say :frown: but I think that as long as there is still blood coming out of the nose, this way or another, it means that the wg is still active and/ or smoldering.
others around, please correct me if I am wrong :unsure:
how long are you taking your mtx and how much of it ? This is not really a correction, more of a speculation based on experience, but I think there can be blood in nasal mucus from time to time for various reasons. After all, most of us have some WG activity or smoldering, even if it is somewhat under control and we are not considered to be flaring. And nosebleeds can happen for external reasons; some non-Weggies are prone to them, and in my case, if I cough really hard for a few minutes it can break the nasal lining and produce a nosebleed, a moderate one that can be controlled. But there will still be blood in there for awhile which can show up in the mucus. Just lately, I AM in a bit of a flare, so the blood I see in there is no doubt because of that.

[lag713]

I just want to know:

1.) Have you ever had nasal and/or facial pain?
2.) How did you deal with the chronic pain or make it feel better?

I really appreciate all of your advice and concern about my treatment but I am confident that I am receiving appropriate care right now. I can distract myself from the pain by watching tv or doing other low effort but engaging activities but I need to focus on my work during the day. The pain is affecting my productivity.

I was just diagnosed in January based on multiple positive blood tests and symptoms. My CT scans, MRIs, Xrays, scopes, and other examinations all look clear so I never had a biopsy to confirm. It is limited to my upper respiratory system. I have not reached remission. Mtx is my main treatment drug. It is not being used as a maintenance drug. I have had symptoms since July 2013 when I started searching for answers. I'm being treated. I saw my rheumatologist and ENT last week. The blood tests look better and the scope revealed no signs of anything of concern. I didn't ask them about pain management because it is not unbearable and I didn't realize how much it was affecting my productivity. The pain keeps me from concentrating on my work. I can do menial tasks but it is tough to sustain my focus with the nagging pain that is occasionally very painful (only lasts a few seconds).

[annekat]

I'm sorry to hear about your pain. Although my sinuses have self-obliterated (I just found out), and I've had some erosion in my nasal cavity leading to a saddle nose, I have had no significant pain at all in my nasal or sinus areas the whole time I've had Wegs. I don't know what that means, if anything. I hope that with continued treatment, the causes of your pain will go away and not come back, and not a lot of damage will be left behind.

[NikkiNicole]

I have been having major face pain. My nose is burning/stinging/throbbing. I feel like I've never been as aware of the nose on my face as I have been since WG came into my life. Your disease sounds almost mirrored to mine. Naso-facial pain, joint pain but everything else looking good. My ENT never saw anything either yet I would get chronic nose bleeds.
I've been on MTX since August, on injectable form for the last 4 months or so, and I feel like my pain is getting worse. I have starting using a small heating pad on my nose at times because it feels ice cold in a way. It's basically just fabric filled with rice heated in the microwave. It helps sometimes. But other than that, I muscle through. I work 10-16 hours a day, I try to just keep pushing forward. But, I am always aware of my nose.

[MikeG-2012]

I had AWFUL, MISERABLE, off the pain chart headaches when I was in a flare-up. I was on THREE prescription pain killers to deal with the headaches and sinus pain. I woke up some mornings with 9/10 pain scale headaches, where I could barely form a conscious thought. My ANCA count was negative the whole time I was having the headaches, but my C-Reactive Protein and Sed Rate were off the charts. When I finally had breathing issues, they listened to me, did a chest x-ray and found that the Wegener's was in full flare-up mode.

I'm not trying to scare you, but if they don't start getting better, you may have active/festering Wegener's in your nose and sinuses. If the headaches continue, let you ENT and Rheumy know that they are not getting better.

[mmthomm]

It sounds to me as though your facial pain could be something called trigeminal neuralgia...


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[annekat]

It sounds to me as though your facial pain could be something called trigeminal neuralgia...


Sent from my iPhone using Tapatalk I had trigeminal neuralgia way back in the late 1980s-early 1990s. For me it was a sharp, intermittent pain near my left temple and eye. I'm sure it can have different ways of presenting. It involves the trigeminal nerve, which I think there is one of on each side of the head, and I think they are fairly long, so could affect various areas. Another name for it is tic douloureux. What relieved it for me was amitriptyline. No standard pain relievers helped. My 2 cents worth if I'm remembering it right from 25 years ago.

[MaxD]

After months of chronic ear infections, and before developing Bell's palsy, I had severe shooting pains in one ear that spread to the temple, cheek and jaws. In hindsight it (and the Bell's palsy) was likely caused by inflammation in the nerve bundle that passes through the ear and contains the facial nerves. Low doses of prednisone definitely helped, as did applying heat to the area. The pain was constant and kept me up all night and useless all day. Your pains may be different though. Good luck and hope you find relief. Let us know what works for you.


I just want to know:

1.) Have you ever had nasal and/or facial pain?
2.) How did you deal with the chronic pain or make it feel better?

I really appreciate all of your advice and concern about my treatment but I am confident that I am receiving appropriate care right now. I can distract myself from the pain by watching tv or doing other low effort but engaging activities but I need to focus on my work during the day. The pain is affecting my productivity.

I was just diagnosed in January based on multiple positive blood tests and symptoms. My CT scans, MRIs, Xrays, scopes, and other examinations all look clear so I never had a biopsy to confirm. It is limited to my upper respiratory system. I have not reached remission. Mtx is my main treatment drug. It is not being used as a maintenance drug. I have had symptoms since July 2013 when I started searching for answers. I'm being treated. I saw my rheumatologist and ENT last week. The blood tests look better and the scope revealed no signs of anything of concern. I didn't ask them about pain management because it is not unbearable and I didn't realize how much it was affecting my productivity. The pain keeps me from concentrating on my work. I can do menial tasks but it is tough to sustain my focus with the nagging pain that is occasionally very painful (only lasts a few seconds).

[Lilly]

Hi lag713, I have chronic facial pain. I have always had some pain from the beginning of my "wegeners" life, Easter Sunday, 1990. I had been sick for a year with ear infections, etc. But 1990 is when I was diagnosed. Over the years my Wegeners has totally devastated my sinuses. Better than my kidneys! Im very thankful for that. At this point, I have no sinuses at all to speak of. Its an open cavity. I have had several "lacramil eye surgeries" to keep tear ducts open. Then 2 reconstructive nose surgeries so I will have a nose. Mine was flat to my face w/saddle nose. Now I have glass "Jones" tubes in the corners of my eyes that go into my sinus cavity so my eye watering goes into the tubes and not constantly running down my face. At this point my pain is so bad that I take Morphine ER (extended release) in am and pm. Then I have Morphine 15mg IR (Instant release) for breakthrough pain. My forehead sinuses, sinus cavity (that still needs irrigating and cleaning, lots of crusting-and pain) teeth ache, between my eyebrows hurt and throb, its all just undescribeable pain. But the meds take the edge off. I still want pain, so I can tell whats going on if something changes. But I have to be able to function! I HATE Taking meds, but after 24 yrs, I just don't have a choice. I am so sorry you have that pain. I honestly know how you feel. I wish you the best and if you have any questions for me, feel free to ask. Nice to meet you, sorry has to be under these circumstances. :-)

[Lilly]

Well I know how you feel. I was on OTC Pain relievers for my facial pain when I was working full time. I didn't realize how bad my pain was really distracting me from my work, and it was suffering. Strangely enough, I worked for a Pain Mgt Dr. And she told me I was making some mistakes in my work, and noticed I was constantly rubbing my face and forehead. She started me on a treatment. That was 10 yrs ago. Now at this point the meds I take, my lethargy, my surgeries I am having, etc. I am on Disability now....... :-( But I am working 20 hrs a week verifying insurance for an eye dr. Its a very flexable and a job that I can sit and just concentrate on one thing. And I am just checking the insurance, the other full time girl does the main insurance and billing. It helps her for me to do the first step for her. :-) That's my work story......Its hard I know. If my pain is too much and interferes with my work, then it is too much pain. If I have pain, which I always will, but the edge is off and I can concentrate on something else, then that's "pain management" to me. Take care !

[annekat]

I am so sorry about all this pain that people are having. I've recently been told that my sinuses have "self-obliterated", that I have no sinuses left, and that there will be nothing collecting in them to cause problems, no crusting, any of that beyond what my nasal cavity alone is still capable of producing. The ENT did use the term "common cavity", which sounds like what you described Lilly, and I'm still quite confused. Maybe he meant it became a common cavity but the part that was the sinuses became sealed off by rearrangement of bone and other tissue and there are no longer air pockets there to become filled with stuff, infected, etc. but the nasal cavity is still an air-filled cavity. (See my recent thread, Disappearing Sinuses). I am confused because although my sinuses obviously went through lots of crap to get to this point, I never felt any of the pain that you all are describing. My nasal cavity is now functioning pretty well on its own, producing mucus, without any particular crusting. I'm not clear as to whether I still have turbinates, and I do have a fairly moderate saddle nose.. I just found this out a few days ago and still have many questions. I guess if this had not happened, I'd be facing worse and worse conditions and the kind of pain you are having. But my ENT paints a picture of my former sinuses causing me absolutely no trouble for the rest of my life. Not to say I may not have other WG problems. But my heart breaks to think of your pain and the meds you must take to control it.

[KimH]

H,I see the same ENT as you do. He has always called me back to answer any questions. I too have frequent pain. I guess from all the damage done. The weather also affects my sinuses. The wind,rain and storm fronts increase the pain. My head is like a barometer. LOL. I use hot or cold compresses. Nothing OTC helped except ibuprofen. I try facial relaxation since the pain makes my face tense and that exacerbates the pain. The Ponaris is an emollient that would soften and moisturize the sinuses and perhaps alleviate the bleeding. All that any of us can do is to speak of our experience. Ask the good doctor for more suggestions. I hope you feel better soon. The rain today is not much fun for my head.

[annekat]

So sorry, Kim, to read about your continuing pain. I have to conclude that you don't have the condition of "self-obliterated" sinuses that I do, but rather the more typical thing like what Lilly and many others have, with possible erosion of the bones opening everything up to a common cavity with tissue that continues to cause problems. No doubt an oversimplification, as my understanding of it is still rudimentary. But I feel fortunate to have no pain and wish that could be true for all of you, too.

[lag713]

Thank you everyone for sharing your experiences. We all seem to be as unique and individual as snowflakes when you see our progression and treatment. I have been feeling a lot better although I still have pain. To be honest, I posted my questions originally because I thought the pain I was experiencing was normal and didn't want to go to the doctor. After it was just unbearable, I called my rheumatologist but she was gone for the week (Friday afternoon). Her physicians assistant asked that I get checked out by the ER if it was bad or at least an urgent care facility to make sure it wasn't a sinus infection. Knowing what the ER costs, I elected to visit the local urgent care. I knew (in my gut?) that it wasn't a sinus infection but I went because I really like the PA and she looks out for me (it's weird that her earnest suggestion was so compelling). The doc there told me that wegener's does not involve the sinuses or nose! I knew the visit was worthless at that point but I decided I might as well try to educate her but I think she didn't listen to me. She blamed the nasal pain on a endoscopy a ENT weg specialist had performed a week and a half before (even though the pain started well after the endoscopy and was getting worse - not better with time). She seemed to even doubt that I had a diagnosis. People like this make me feel awful and insecure. I walked away feeling like the pain must be in my head.

I called my ENT the following Monday and he explained that pain does occur in the nose/sinuses with wegs. He was concerned that the doc would suggest that his endoscopy caused that kind of pain on that timeline. Obviously, the urgent care doc needs a refresher on vasculitis and wegs. It is so important to find docs that know what's going on. He's still confident in the treatment plan and I will see him again this summer to check in.

I'm sorry for the delayed reply. I checked in on my phone but had trouble logging in to reply. Please know that I read your replies and really appreciate your feedback!

[annekat]

These docs who think they know everything and actually know nothing are much more worrisome than our acquaintances who tell us we don't look sick or that we shouldn't be on steroids. Someone who doesn't read this forum could really be messed up by these docs!

[lag713]

The uninformed docs are dangerous because they can make the difference between getting the right treatment and getting better or getting the wrong treatment (or no treatment) and getting worse.

The family and friends that say we don't look sick and tell us not to take medications hurt our feelings more than anything else.

Why can't everyone just be awesome? :thumbup:

[Jaypfei]

Unfortunately lag713 you're always going to run into a few knuckle head Docs that aren't knowledgable enough to know their head from their foot, let alone everything about Wegs. As it's been said before, if you get a doc like that? Don't walk, run out of their office!

Most of us here probably have more knowledge and experience with Wegs than our own docs. We live with it day in and out. Glad that you didn't pay heed to that urgent care doc, and hopefully your meds will kick in and relieve your pain. I know others have expressed that warm packs help with the pain. I used to wear a hoodie to bed and pull across my face to help hold the heat pack in place. I've always maintained the Wegs face/headache is far worse than a migraine.
Hope you begin to feel better.

[LisaT]

Hmmm, I have a lot of facial/head pain but never attributed it to sinuses. I'm wondering after reading this thread. In any event, some things that I've found helpful for the pain: Self-massage of eyebrows, temples, jaw, ears (trigger point release); Warm compresses (i've heard this helps with sinus pain too); ice packs at the base of my skull, on my neck, on my jaw joint; massage with a massage therapist, cool mist humidifier, saline nasal spray or nasal gel (keeping things moist in there seems to help), and when all else fails my meditation cd. I take tylenol arthritis and it sometimes takes the edge off, as does the CBD tincture that I use (marijuana, but just the component of it that helps with pain/inflammation without the psychotropic effect or 'high' that comes from the THC). I have been prescribed stronger pain meds but try not to take them because I'm afraid they'll interact with all my other meds. I sometimes find a warm bath helps too, just by relaxing the rest of my body. I hope you get some relief as soon as possible. Pain BITES. But, like getting old, i suppose it's better than the alternative. Doesn't really make it easier, though, does it?

[windchime]

A lot of good advice Lisa. Self help really is our best friend. It's interesting when you start the self massage on your face and finding all those tender spots. Yikes, sometimes you don't even know you have them. The scalp to is a good place to look for sore spots too. Kids and grandkids love to give scalp massages. Lay down and relax and let them massage away. Enjoy.