Side of face swollen

Hi Everyone

Does anyone have experience of the side of the face being swollen - but on the opposite side to the confirmed adenoma?

I've had a tight background headache since June plus tightness and aching at back of head/sides of face/bridge of nose/roof of mouth/across back of shoulders - and my collarbones and right elbow are really painful! What on earth is going on?

My new GP sent me to a rheumatologist who says no inflammatory markers in blood and nothing visible on the MRI I had to rule out a pituitary problem. No temporal arteritis.

The only thing in the body that links all the places mentioned above (collarbones?? elbow?? ar-- ?? - no, only joking ...)) is the lymph. So could I maybe have some sort of generalise lymphadenopathy? My face isn't so swollen in the morning after sleeping (badly - painful to lie on either side of face) but the swelling increases as the day goes on, and my neck/face areas a quite tight with the swelling by about 8pm.

I called the Lymphoedema Support Network this morning and was told that it isn't only legs and arms that can swell with a lymph problem - faces and necks can too - even 25 years after an operation (had herniated disc cleaned out in 1997). Other symptoms I have are intense night sweats (not just menopausal "glow") and a terribly itchy scalp.

Has anyone any experience of this with parents or friends? Any input would be great.

Love from Tigerlily xxxx

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Hi Tigerlily,
I really feel for you, some of the symptoms you are describing really ring bells with me from when all my troubles started 8 years ago.  Do you have any problems with the outer cartilage area of your ear lobes as well?  I also had pain across the bridge of my nose , so much so I could not stand wearing glasses for very long as it hurt so much. My right outer ear was sore and after a couple of months became very red and painful, then eventually subsided.  It was really hard to sleep and had to make a doughnut pillow.  I saw ENT who thought it was AI Relapsing Polychondritis and sent me off to Rheumatology.  All my blood tests for RA , antibodies etc were negative.  I had lots of flitting joint pains in hands and feet and with hindsight I do wonder if that was the start of this PHPT.  I have no faith in Rheumatologists any more and with the changing rules in NHS hospitals they cannot refer you internally.  I was never offered any treatment as by the time I was seen my painful ear was settling.  I was given so many antibiotics preceding the diagnosis as they thought it was an infected ear cartilage.  I was told the treatment i.e. Steroids and immunosuppressants would cause more symptoms than I had already got and to take ibuprofen.  With time it did settle but kept having a niggle.  I also had inner ear problems with tinnitus and blocked ears but that settled until last November when it all came back again minus the ear.  I get a lot of soreness at the back of my head too, in the mastoid area behind my ears and frequent headaches in temporal area.  All this time I was seen annually in the Rheumie clinic , always a different consultant as the last one had left and not one of them mentioned I had raised calciums.  I had many perimeno problems and it is interesting to note that when I had a Mirena coil fitted and oestrogen patches that a lot of symptoms settled for a couple of years.  However the coil triggered off ovarian cysts and I had to have it removed after 3 years and then it was back to the full gamut of meno symptoms.  I do think anaemia is involved so maybe worth getting your iron and ferritin checked.  I did not have any jaw problems back then but I did have shoulder and rib pain costochondritis.  I did not have an itchy scalp but more like electric shocks zapping  or very tender areas almost like you had hit your head on a corner or something.  I did get hot at night but have never had drenching sweats like many do.  I am almost through it but it has taken a long time, they think being hypothyroid may have caused my late menopause but it sure has been a rough ride.  It does sound a lot like an auto immune problem to me and it could be a mild form of RP, which they think mine is.  It maybe worth having a look although there is not that much info around on it.  
Not sure if this helps but if nothing else I do know how it makes you feel, like with all AI stuff fatigue is high on the list.
Hugs Sue x

Thanks for much for your reply, Sue - I really appreciate you taking the trouble. It really helps to hear someone else's story and to compare notes.

The bridge-of-nose thing and the discomfort from wearing glasses is interesting - that's a real symptom for me - and I can't bear necklaces or polo necks or heavy coats across the back of my neck either.

I don't seem to have the same degree of ear discomfort, though. Just a general fullness and tightness within the ear, lots of "cracking" noises when I swallow, many changes of pressure - but I do have the tinnitus (the bells, the bells ....) and have had vertigo, but the latter has worn off somewhat lately.

I get the soreness at the back of the head and in the temporal area, but temporal arteritis has been ruled out. That was a favourite of mine for a while - except the treatment prospects!

The perimeno problems strike a chord and I had terrible flooding at menopause. I did have iron and ferritin checked but the results came back as uninterpretable so they must have messed up the test. I should have those done again. The shooting pains ring a bell, especially electric-type ones down my neck and across the top of my chest. I had one in the tips of my fingers this morning!

I can't chime with many of the other symptoms of RP, but what an unfortunate disorder it seems to be. I am hypothyroid and that with the PTH adenoma is probably not a good combination, but many of us seem to have it on here.

I have an appointment at the Oro-Maxilliary Clinic which has just come around from when it seemed that my jawbone was swelling. My GP seems to think that they will be able to diagnose whatever it is that is causing my face to swell as well. I don't think so somehow, as they are not experts on the lymphatic system. As you say, with the non-cross-referral system now in place, I fear they will find nothing amiss "in their field" and they will just twang me back to the (rapidly proving quite useless GP - I seem to be joining a club here on that score!).

Tonight's not a wine-drinking night for us (got to give it a rest sometime!) but what's interesting is that a glass of wine often makes my head/neck/shoulder tightness feel better, as if the blood vessels are opening up and improving the blood flow.

Thanks again for your reply, Sue, as it was really helpful. I didn't even know RP existed.
I hope you're having a good day - Love and Hugs from Tigerlily xxxx

Wow Tigerlily, more you have to cope with   I hope someone finds an explanation for you soon. 

Try blueberry juice for improving blood flow; it contains antioxidants which help your veins widen and let more blood through your body. Blueberries have many health benefits actually. You can't drink wine all the time for the benefits 

Hope you get some sleep since it sounds awkward to settle down and try to get some rest.

Love and many hugs

Brigitte xxxx

Well, I have not had this problem, but it sounds dreadful! So sorry to hear of all of this. Good luck to you, Tigerlily, and you too, Sue. I hope you both feel better soon!

Hugs on the way!

Audrey

Thanks, Ladies - it's good to be able to discuss it all with caring people.

Thanks for the blueberries tip, Brigitte - I will give them a go with my morning muesli. We're on holiday for 2 weeks from Sunday so there'll be no nlueberries left on the breakfast buffet!

Lovely hugs, thank you both!

Love from Tigerlily xxxx

I don't have any wisdom to impart I'm afraid as it's outside of my personal experience, but I'm sending love and hugs and hoping that you can resolve it ASAP. Must be so worrying and frustrating looking for answers ..... I do know something about that!

Jasmine x

Thanks, Jasmine - Love and Hugs most welcome - Love from Tigerlily xxxx