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Anyone else have severe facial pain as a symptom?

Discussion in 'Pain and Inflammation' started by Ocean, Feb 6, 2012.

  1. Ocean

    Ocean Senior Member

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    One of my PEM/flare symptoms is severe facial pain, primary in my nose, cheeks, and jaw area. It's a hard pain to describe, it feels almost like it's in the bones. Once it comes on, there is no way to get rid of it except possibly sleeping if off overnight. Regular laying down rest doesn't get rid of it, neither does a nap, medication, cold or warm eye mask, etc. It feels absolutely awful and hard to do anything else when it feels that way. Does anyone else get this?

    Another PEM/flare symptoms I get is bright pink/red facial flushing in the cheeks and nose. I'm not sure if others get that one either. I don't see it mentioned. I get this quite often without the pain, but it seems that I don't get the pain without the flushing. Facial and nose swelling is another symptom I get as well, most mornings I wake up with this but sometimes it comes on or worsens mid-day.

    I'm having the bad facial pain now, along with swelling and flushing, and it just made me wonder if anyone else has this, and if you do, if you know what it is, and is there anything you've found that helps with the pain. Thanks.
  2. SOC

    SOC Moderator and Senior Member

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    Ocean, do you know if you have any active herpesviruses?

    Isn't that kind of flushing symptomatic of lupus? Or am I confusing it with something else? :D
  3. Ocean

    Ocean Senior Member

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    I don't know about the viruses. Hopefully I'll get to see an I.D. doctor this year and do some retests. I went it the past but that was before I had a diagnosis. Would that cause the pain though?

    Yes the rash is similar to the one in lupus as far as where it's located but when I've looked up photos mine does not look nearly as severe as the lupus butterfly rash from what I can tell. Mine is more flushing and the flushed areas are also hot to the touch, while the lupus one looks more like a rash or some skin condition. Unless I have a mild version of that same rash, it's hard to say. But mine is very clearly connected with PEM. As soon as I don't get enough sleep or exert myself, my face will flush, and often swell also.
  4. SOC

    SOC Moderator and Senior Member

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    Some of the herpesviruses (maybe ebv and/or hhv-6) hang out in salivary glands. With PEM, I often got swelling that would cause a lot of pain in my jaw and cheeks. It's been a lot better after a couple of years of Valcyte. I rarely have that kind of pain anymore and when I do, it's mild. The swelling was easy to see when I was at my worst, but not really visually noticeable (although still quite painful) at other times.

    Another thing to consider is an uptick of a sinus or ear infection that might cause swelling and pain in those areas. I've had some luck, which I can't explain :D, with taking Mucinex consistently once a day at night. It doesn't always help after one dose, but after 2-3 days, the pain seems to reduce significantly.

    Not very scientific, but I hope it helps.
  5. mellster

    mellster Marco

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    I have what SOC describes, jaw/neck/throat pain/tenderness/swelling mild-to-moderate, but very annoying. EBV likely the culprit (high titers).
  6. Ocean

    Ocean Senior Member

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    Thanks SOC and Mellster. I don't think it's sinus or ear because it's only there as a PEM symptom and then leaves. I don't think that's consistent with what you'd expect from a sinus or ear infection, is it? Plus I've had CTs done on my sinuses while having these symptoms and my sinuses looked great. I've never had an ear infection.

    A lot of the pain is in the bridge of my nose, and all of the facial pain feels like it's in my bones. The swelling is independent of the pain, but when I have the pain I usually have swelling too, and my nose turns red especially around the bridge and looks swollen there. I have facial swelling pretty much every day, but it seems even the bridge of my nose swells when I get this pain.

    I don't know if I should just consider that I have some PEM symptoms that are more unique to me or if there's a chance I have something else going on in addition to CFS. I guess since the symptoms only come after exertion, it probably is just CFS. But I wonder why it's manifesting this way since I don't think others are getting these same symptoms (flushing and nose/cheek/jaw bone pain). I also get a pain in my right lower right rib area during flares.
  7. SOC

    SOC Moderator and Senior Member

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    Definitely a weird symptom, Ocean. :confused: I don't think I've heard of it as common among PWME.

    I wonder if it could be an infection that is flaring during PEM, although I have no idea what infection would make the bridge of your nose swell and turn red. :eek: Still if we consider the hypothesis that infections flare (either as cause or effect) with PEM, then maybe an uncommon infection that doesn't ordinarily bother you is flaring up...? Since you know it's not a sinus infection, maybe some kind of skin infection...?

    Does your GP have any ideas? Surely it's noticeable enough that even a bone-headed anti-ME GP should have some suggestion. (Okay, that's a really naive statement. I must be suffering from increased brain fade. Time for my nap.)
  8. Ocean

    Ocean Senior Member

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    I hate having symptoms that are weird even among those of us with weird symptoms! Then I really feel weird and wonder what is going on in my body. The flushing my doctor said can be a CFS symptom, although I'm not really hearing others talk about having this. I've seen on place online that lists it as a possible symptom. He says the same thing of inflammation about my swollen face.

    The facial pain is a lot more troublesome than the flushing. The flushing I can ignore, and it's actually useful because it tells me I am on the verge of a flare if I don't take it easy, so it's a good visible warning sing for me. But the pain is quite bad when it comes and is also odd. It doesn't feel viral but I don't know what it is. Actually I just remembered when I had my sinuses scanned the sinuses were fine but they said I had swelling in my nose, I wonder if that could cause the pain? And if it is, what might be causing the swelling in my nose to begin with. Maybe that's the answer though, that PEM increases inflammation in me. But why would that cause pain?
  9. lansbergen

    lansbergen Senior Member

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    Did you consider inflammed cranial nerves?
  10. taniaaust1

    taniaaust1 Senior Member

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    I havent had that like you are getting it. I did used to get pain EVERYWHERE, that includes my face.. like pressure within my face. Like something pushing trying to burst out of my face (I think I had that in my cheek bone area under my eyes .. I cant remember my nose area being an issue with pain. I used to get jaw pain too.

    My bone pain was mostly in my arms and legs. (too long ago now for me to remember all the details of the bone pain I used to get but it really hurt. it used to be my worst ME pain.. like drilling in ones bones).

    Facial flushes.. I cant remember ever getting those.

    I do thou have something you probably should check into to make sure it dont sound like your issue. Lupus (as far as i know a lupus rash could show up to various degrees .. I cant remember if its a rash which comes and goes. I did a college assignment on Lupus one time).

    Also another thing which can cause facial flushing and people are rarely diagnosed (and misdiagnosed) is systemic mastocyosis which is caused by an abnormal mast cell response (hence flushing). It can present very much like ME. (my uncle has systemic mastocyosis and is convinced I have it).

    Those with systemic mastocytosis may find themselves with terrible MCS and many other symptoms as these mast cells can when triggered off congregate in various parts within the body be it in the skin or other places. Many things can trigger off attacks of systemic mastocyosis INCLUDING EXERCISE can trigger an attack.

    There is a huge issue if you do have this issue is its VERY VERY VERY RARE so it may be near impossible to find a specialist and get diagnosed and this issue can end up having life threatening eposides. (my uncle has at times travelled interstate to see specialist for this disorder.. I think he said there is under 10 people in Australia with it like he's got it).

    http://dermatology.about.com/od/facialflushing/a/ffmastocytosis.htm

    I think this issue in this condition can occur anywhere on body but here is some pictures
    http://www.flickr.com/photos/mastocanada/4757893062/

    http://www.flickr.com/photos/mastocanada/4757256737/

    "Systemic mastocytosis:

    Skin lesions


    Urticaria pigmentosa


    Facial flushing


    Itching


    Nausea


    Vomiting


    Diarrhea


    Abdominal pain


    Ulcers in the stomach and duodenum (small intestine)


    Headache


    Lightheadedness


    Heart palpitations (an irregular or unusually rapid beating of the heart)


    Bone pain


    Anemia (low red blood cell count, which can cause fatigue)


    Psychological changes (for example, irritability and inability to concentrate)

    Symptoms of systemic mastocytosis can sometimes occur as attacks, where multiple symptoms appear all at once. Following an attack, the person may feel fatigued (tired) and lethargic (drowsy, lacking energy).
    "

    the symptom list is from http://www.cancer.net/patient/Cancer Types/Mastocytosis/ci.Mastocytosis.printer
    It can cause a lot more symptoms thou then that list
  11. taniaaust1

    taniaaust1 Senior Member

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  12. Min

    Min Senior Member

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    i have developed horrible trigeminal neuralgia after a virus last summer, and it has not gone away.
  13. Ocean

    Ocean Senior Member

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    Thank you Tania.

    I will reply more to this everyone on this thread but I just wanted to say this picture looks very very much like what I have. I will definitely be looking into this more. The second picture you linked to looks less like what I have because my flushing is limited to upper cheeks and nose, not the sides of the chin area.

    This picture which is of a lupus rash looks like what I have too. As far as where the rash is located it's exactly like mine, but mine tends to be much more bright pink and more strong than this. That could just have to do with my particular coloring or with the lighting in the photo.

    http://www.flickr.com/photos/cunisdiabolis/5059331743/


    Last year I tested negative for the tests that would indicate lupus, but I think it's worth asking my doctor one more time. Does anyone know if you can have lupus but have normal test results?
  14. merylg

    merylg Senior Member

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    Ocean I have had that severe flushing that hurt to the cheekbones, but only once...as part of an allergic reaction to Plaquenil (Hydroxychloroquine), prescribed by my Rheumatologist. The painful flushing stopped once I stopped taking the drug.
    (I also had an itchy patchy red rash on my arms & legs at the time, which took weeks to disappear)

    PS I also test Negative for Lupus.

    I get mild flushing after drinking hot tea. I get large itchy hives on my back if I drink coffee, so I have given that up! My Allergist/Immunologist has said I have angioedema.

    @tania: Thanks for the info on mastocytosis.
  15. justy

    justy Senior Member

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    Hi Ocean, you defiantely CAN have Lupus and have a negative ANA etc. You can find out more info about Lupus on the net, you can also have Lupus and not have the rash. I get facial pain - mainly in my eye and jaw, which sounds a bit different to yours.

    I dont have the classic Lupus rash ( i do have lung involvement and swollne finger joints and ulcers in nose and mouth so have been wondering) but i do have this small red pinpricks whihc have developed in the past 3 years in two small ptches on each cheek and on my nose - they look like the picture that Tania posted and you reposted above, but not as many on my face.
    We are wierd arent we? but like you i am alsways searching to see if they have missed something that could point to another disease instead of M.E.
    Take care, Justy.
  16. Ocean

    Ocean Senior Member

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    Justy have you been diagnosed with lupus? I'll ask my doctor again about having negative tests but maybe still having it. I wonder how they diagnose it in that case if tests are normal. I'd pretty much accepted that all my symptoms are CFS but I've noticed more and more that some of my symptoms aren't common here and that starts making me wonder again. Although I did a bit more searching and on some other forums people mention the flushing as well. I think it was on Prohealth fibro/cfs forums. I've not seem many mention the facial pain though. I also have significant muscle loss that seems unusual also in how extensive it is. I miss my muscles!
  17. glenp

    glenp "and this too shall pass"

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    I have the symptoms off and on, not so much now. I used to have the lupus type rash most of the time - was diagnosed as rosacea by a dermatologist, although I do not think that is what it is. A friend with similar symoptoms was diagnosed with lupus several years ago but now with a new doctor she does not have that diagnosis. I often have that pain in lower right rib cage area and have no idea of what it is. I read somewhere of a patient with that lower ribcage pain believing it to be the liver and some form of yet to be discovered hepatitis (this was in Spain).
    glen
  18. rlc

    rlc Senior Member

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    Hi Ocean, have you ever had your jaw checked for abbesses and cavitations? What happens is that people get an infection in their jaw normally from a dental procedure like having a wisdom tooth taken out, the infection then spreads over time and literally starts rotting the jaw bone, and the infection can then enter the blood stream and cause symptoms everywhere, this may explain the facial pain if the infection is flaring at times and hitting a nerve in the jaw it would explain it appearing in several places, and the flushing could be explained by the body reacting to the infection flaring.

    There is a member of the forum called Ian who was diagnosed with CFS but later found that this was the problem and was cured after it was treated, he seems to know this subject very well and has posted about it here http://forums.phoenixrising.me/showthread.php?9212-My-recovery-story maybe if hes still around you could PM him about it.

    Cant promise thats what it is, but it sound possible.

    Regarding Lupus rashes, they vary considerably, and the ones you see in the pictures are the more dramatic ones, you dont even have to have this rash to have lupus, the only way to tell is to have the right tests done, which are more than just the ANA test.

    Hope you track down the cause soon!!

    All the best
  19. ahimsa

    ahimsa Senior Member

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    facial flushing

    I don't get facial pain but I do get flushing across the cheeks and nose as part of the PEM/PENE (not every time but some of the time). My face is also warm to the touch when it happens. The patten of flushing looks a little bit like a sunburn if you don't look too closely. I've had this symptom off and on for years.

    In my case, I always thought it was part of my messed up autonomic system which is supposed to control blood pressure, heart rate, temperature regulation, etc. In other words, I thought that the blood vessels in that area were suddenly getting dilated for some reason. I used to joke that I'm like a dog - if my nose is cold then it's a very good sign. (cold hands/feet are also a good sign) With low blood volume, I need my blood to be in the body core, not in my extremeties.

    Many years ago, before I was diagnosed, I was in a support group for people with all different kinds of chronic illness. One of the guys in the group had fairly severe MS (limited mobility, used an electric wheelchair and service dog). He got this particular facial flushing all the time, way more often than I did. Our support group facilitator would often greet him with something like, "Hey, Ken, it looks like you got some sun!" And then he would remind her that it was a symptom, facial flushing, and not sunburn. I have no idea how common this symptom is in MS since I only have this one example.

    Anyway, this is a bit of a tangent from your original question about pain! (hope that's okay) But I so rarely see people talk about facial flushing (as opposed to a rash, which I don't have) so I thought I'd chime in with my experience.

    I don't get any facial pain with my flushing so my symptom could be completely different from yours. But since you mentioned that you sometimes get the flushing without pain, I thought I'd mention it.

    I hope you figure out what is causing the problem!
  20. Mya Symons

    Mya Symons Mya Symons

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    My sister has very bad TMJ (Temporomandibular joint disorder). It gets so bad that she not only has pain in her jaw, but also her entire facial area.

    I do have bad facial pain when I wake up in the morning. Mine is caused by sinusitis and Fibromyalgia. Two of the tender points for FMS are in the cheek area. I have had sinusitis so bad that I had pain in my teeth. However, I have never had jaw pain. I believe I have read that TMJ can be a symptom of FMS. I have a bad memory so I could be wrong.

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