sorry in advance for the rant. I am kind of mad at myself here.
I am a pretty selfish person. I am normally ok with that. I love me, I love nice things, I let my DH spoil me and I totally use my pets as kid-replacements because I refuse to bring a human into my life that will take precedence over yours truly. Selfish, right? Right.
So (warning--TMI coming up) several weeks ago I developed yet another bleeding sore in my nose. I went out and bought some Ayr gel (which is fabulous for about 2 minutes after applying). I then started waking up completely unable to breathe and stuffy. I used my neti pot religiously--and scary huge solid chunks of dark green would come out--but i couldn't get anything out outside of that morning neti pot session. I went on with my life--and why wouldn't i? i had no fever, no sore throat, no body aches. I mean, i kept getting a swollem lymphnode, but it'd go away--so it wasn't anything unusual. eventually the dark green changed to lighter yellow and i thought i was in the clear.
until yesterday when my chest and ribs in the back started hurting. i thought Great, another case of costocondritis. i went to urgent care and the doctor was all like What were you waiting for? What? Um, i was waiting for my two pretty intense cases at work to go away. I was waiting for my body to do something. Well, I have bronchitis and sinusitis and had to get a steroid shot and two different types of antibiotics. My body usually HATES antibiotics, so having two should be just a party. The steroid shot sucked--i've never gotten steroids, but i suspect the shaky feeling and the inability to sleep was normal?
i am mad at myself. but also annoyed. i am annoyed at the UCTD diagnosis because my lawyer brain wants something definitive, something positive outside of just ANA 1:640, homogeneous. I mean, that's the pattern that is found in healthy people! I have symptoms of SLE and SJS but not enough to diagnose either. My family thinks i'm being silly for going to all these doctors looking for answers in all the wrong places (like a neuro for the hand/feet numbness and a bladder doc to check out my million visits to the restroom every day/night). But i just want something concrete.
these sinus issues aren't new to me. i've had about 7 sinus infections a year since 1998. in 2011 i had sinus surgery and they have gone down--but then again, if i don't have a fever, i don't get diagnosed so maybe they haven't? all this crud just sits in my sinuses and drips down my throat--nothing comes out. it sucks.
anyway, so sorry for ranting. and if anyone is still reading--please keep in mind that no fever does not mean nothing is wrong. see your doctors often. before you get two antibiotics. :)
Sorry, Bubbles.
I hope you start getting some relief soon. I'll remember the fever thing - it's not the only a sign that something is wrong.
I get the sinus infections, too, without pain or fever. It sure makes it hard to diagnose! I hope you feel better very soon. Seven infections a year is a lot. I find that infections just suck the energy out of me, which is the usual symptom. Which is hard to distinguish from the usual...
Since I stopped using humidity in my oxygen I haven't had a single sinus infection. So far...
Sharon, in nice, dry Colorado.
Please feel free to rant any time! That is what we are here for. We all have to let it out.
I am a great believer in getting a doc's opinion about my troubles. I am sure outsiders think I see the doc too often. I dont really care.
TMI - My "nose mucus" is dry and thick also. (I tied to say that nicely).
I have not tried a Netty Pot yet. What kind of water do you use in yours? I have heard that tap water can be harmful. Should I do it a room temp or do you heat it slightly?
Piebird--i am terrible and use tap water. I know it can be harmful, but I figure that ours is city water, and is treated with so many chemicals that any bacteria is likely dead. I mean, i drink it too, so... i use warm tap water. and i use the Sinus Rinse bottle, not the neti pot per se. just what i started on and just kept going.
Hi Bubbles,,,,
Tap water is bad enough, the chlorine is probably not good for you (very drying) but warm water is giving you the addition of the sediment from your hot water heater... use cold water from the tap, boil it or nuke it in your microwave... warm it slightly when you will use it from the microwave...
Ugh... makes me hurt just reading all of this. I just keep getting one bloody nose after another and the rheummy said see an ent - not sjogren's..
hm, didn't think about the chlorine, thank you! this is so good to know! i need to re-think my approach!
bubbles, My ENT has me using boiled distilled water. I buy the gallons and then boil about 1/2 gallon at a time (several minutes), cool it down and then store it in an empty gallon container in the fridge. I have a 1 cup measuring cup from Walmart (with the handle) that I put the cold boiled water and heat in microwave about 30 sec to warm it up. Add the saline powder and pour into my netipot and irrigate.
Anytime you have green chunks coming out of your sinsues you have an infection. Sinsues are really hard to treat as they are moist and dark and grow bacteria really well. It is not unusual to end up with a pneumonia with an untreated sinus infection.
Now, I am going to add that anyone who has a lot of sinus infections over a period of time needs to have their blood checked for immune deficiency. This is when the blood has lower than normal white cells that fight infections. It is very common for people with autoimmune issues to also have immune deficiencies.
I speak from experience. I have had autoimmune issues since I was about 20 years old and I am now 69 and just got diagnosed with Sjs, myasthenia gravis, hashimotos, bullous pemphigoid, etc since 2002 through 2006. My super immunologist also checked my blood for immune deficiencies as I have had many infections since 1974 and he found that I had severely low t-cells that was probably autoimmune in nature. I am a nurse and always had my blood checked when I had needle stickes so I know that I never contracted anything at work.
I am on IVIG for my myasthenia gravis and it helps my t-cells some. They are still not normal, but at least my infections aren't as bad as they used to be. In case you are thinking I am talking through my hat I have to tell you that my hubby has celiac sprue and microscopic colitis that is bum/w celiac disease. I took him to be assess by my immunologist just to make sure that he didn't have some autoimmune issues that needed treating.
Low and behold his blood work came back with low IgG levels. He has low IgG level 1, 2, and four. Right now they have him on 2 weeks of antibiotics and one week off alternating with 3 different kinds of antibiotics so the drug resistance isn't so bad. He has some other bad health issues so he isn't in good health anyway.
Sooo, please folks, get checked for those deficiencies as they are more common than you think. Many of them affect the mucous membranes so the sinsuses and lung are affected the most. I will also add that when irrigating those sinsuses it is good idea to clean up the sink afterwards. I use the bacterialcidal wipes that you can buy in big containers at Sams Club and sometimes I use vinegar water or even hydrogen peroxide. I sort of switch around to confuse the bacteria. I use the sink in the spare bathroom. I am very bacteria/infection control consious cause of having both of us with low levels and grandkids coming around.
My grandkids always holler "did you clean the sink grandma". I have them trained. Irish
Another consideration with sinuses is that after you have had quite a few of them and been treated with antibiotics, the next infection is likely to be fungal. The bacteria have packed up and moved out, leaving some lovely real estate. Two treatments: oral antifungals, or ampoterecin B in a compounded nasal spray. Amp B can cause hearing loss when used systemically, so you might get some pushback from the doctor. Unless I'm really stuck I don't think I'll use it again because I don't have any decibels I can spare.
Irish, you certainly do things thoroughly! Anyone near Denver, National Jewish has the best immunologists around here.
Good night, all! Sharon
I luckily have an allergist/immunologist that is from our state med school that I call and he does bursts of predisone before an infection develops. He has been my Dr. for 7 yrs now and if I didn't have him and his nurse I 'know' I would put things off until things were way bad and like you said, usually no fever. I always say that I run a lowgrade regular temp and when I'm sick I'm usually just a high normal....sjogrens definitely I think. When my nose when really kooky thick ?fungal/infection my Doc suggested less salt in my rinse that with sjogrens and salining so much and now I try to remind my self that.
Yes, a lesson in taking care of ourselves like you said :) I think with sjogrens that is our calling card, we truly 'do' have to look out for ourselves. And as my GP said a few months ago when I finally went in for gallbladder problems he said " you know, you are allowed to have something wrong with you and it 'not' be sjogrens"...I think we all have sooo many symptoms of our sjogrens that we learn to put up with soooo much. Take care, sinus probs are not fun :(
The latest thing for irrigating the nasal passages is baby shampoo. I have the recipe from my ENT but can't remember where I stashed it.
I tried doing it with the amount he said to use, but it was just too drying. I only use 1/2 of the pre made saline powder rinses to 1 cup of distilled water and I add one tiny drop of baby shampoo. You would be surprised at how well it cleans out the mucus.
The baby shampoo will dry you out really bad if you use too large an amount and if you do it too much. I only do it a few times a week. If I do it too much I get pain or drawing sensation in my sinuses that tells me to slow down.
It also has a little antibacterial quality too. I think anything that cleans all the junk out of our sinuses is apt to cause some antibacterial action. Irish