Sinusitis hell
Posted , 6 users are following.
I really want to cut off my head I feel so uncomfortable dry nose, tight forehead , feels like the blood has disappeared, light headed ears blocked I could go on and on but I'm sure you all know what it's like
I am using flixonase drops but feel like they are causing the nose to be dryer
I was given steroid tablets but worried about taking them as had some in hospital for a week started to feel bit better 40mg then as soon as they stopped them I got really down as felt crap again
They gave me 5mg to take now but not sure
Been saline rinsing , steaming but 2 secs later I'm dried up again
Please help if you can xx
0 likes, 19 replies
margaret22116 julie80193
Posted
Anyone suffering symptoms of chronic sinusitis with joint pain brain fog and chronic fatigue shuld routinely be screened for auto immune disorders but sadly they aren't......
For someone who had been such a healthy child, Nancy Kennedy couldn’t figure out how she had become the kind of sickly adult whose life revolved around visits to a seemingly endless series of doctors.
Beginning in 2005, shortly after a job transfer took her from Northern Virginia to St. Louis, Kennedy, then 47, developed a string of vexing medical problems. Her white blood cell count was inexplicably elevated. Her sinuses were chronically infected, although her respiratory tract seemed unusually dry. She often felt fatigued, and her joints hurt.
For seven years. Kennedy and her primary-care physician, who said she felt as though she sent Kennedy to “every specialist that walked,” had no clear idea what might be wrong.Johnson at first attributed them to Missouri’s climate. “Her symptoms — ear pain, headaches, sinus pain and pressure — well, a lot of people have that,”. “But her infections were difficult to treat and wouldn’t respond to antibiotics.”
An ear, nose and throat specialist prescribed nasal sprays, which didn’t help. And Johnson, who had suspected Kennedy might be suffering from an autoimmune disorder, a constellation of diseases in which the body mistakenly attacks its own tissues, ordered a test for RA, although previous screens had been negative. This time, she added tests for an autoimmune disorder that often accompanies RA,Sjogren’s syndrome, for which Kennedy had never been checked.
The results of those tests provided the answer that had eluded Johnson and Kennedy. Her joint pain, dryness, chronic sinus infections and fatigue were the result of primary Sjogren’s syndrome; tests for RA were negative.Kennedy noted that she never had a runny nose. “Everything just felt very dry,” she said.
I had these symptoms too for a long time and have something very similar to Sjogren's.
Obviously no one but a specialist can say what is the cause of your problem Julie but it seems to me that you can't ignore all the possibilities.
nik007 margaret22116
Posted
margaret22116 nik007
Posted
It is a very general test for raised inflammatory markers. I sometimes have raised ESR and CRP. Nothing that remarkable to be honest but it belies the underlying problem. And also ANA is a marker too.
To be honest, my gp did not test me for any of this. I was referred to a rheumatologist because my doc was on verge of diagnosing chronic fatigue. That was after a few years of suffering the sinus issue then symptoms getting worse. Slowly incrementally worse. She referred me because of joint pain. She wanted to rule everything else out before she diagnosed chronic fatigue.
The rheum took a history from me and immediately referred me to be tested for inflammatory bowel disorder and Sjogren's. I didn't have Sjogren's as it happens but I have Behcet's which is so similar in symptoms. It took a year of seeing an immunologist to be diagnosed.
But the dry nose and the sinus hell...had all of that. Start of my journey was with ENT who didn't know what to do with me. I am currently almost symptom free through treatment but I get the odd relapse and at the moment sinuses are playing up. Very very dry nose. I spray a steroid nasal spray inside my nose without sniffing it up and it relieves that terrible dryness and burning. The steroid dampens down the inflammation. It was one very early treatment suggested to me in clinic and it made a massive difference.
I was diagnosed 12 years ago now. And I see a lot of people here suffering similar symptoms and I think some of them at least have a similar issue going on. I hate that you can't cut and paste here but if you google Sogren's and sinusitis you will see all of those symptoms right there.....fatigue joint pain brain fog.
margaret22116 nik007
Posted
oh and forgot to mention...when Julie said she felt better with steroid treatment, that is quite key. These auto immune disorders are treated with steroids. Not for me I am glad to say. I have happily never taken them except for 2 short courses. I don't want to use them long term. But many of the people in my help group use them as standard. Steroids are used to calm down the inflammation levels in the body.