Maybe it's just me being hyper sensitive to each aspect of Sjögren's? But I'm so addled that I actually managed to miss my hospital appointment with my favourite oral medicine doctor today. I was meant to be discussing whether or not a couple of old root canals will need to be redone or not. One has cavity around the base ripe for abscess.
But I had written the wrong date down for this appointment and so instead I ended up in the emergency eye clinic for hours - only to be reassured that the swelling and pain in my eye with nasty crusting wasn't due to infection or corneal abrasion - but was a blocked lacrimal gland. The young eye doctor went on to say he thought my parotid might be similarly blocked. I'm in loads of pain around my lower face too so this made sense.
If it isn't an abscess or blocked parotid, then my feeling is that I going to need to find a source of pain relief for Trigeminal Neuralgia. I've already tried Gabapentin, Cymbalta and Amitriptyline. Side effects were all too awful for me. I'm also being assessed next month for inner ear disease due to dizziness and vertigo so I need a pain medication or therapy that doesn't worsen this too. I'm so desperate now that I will try any therapeutic alternative - bearing in mind that medical cannabis isn't available by prescription in UK. This pain just isn't living?
Antibiotic. Bacterial infections in closed areas. A cortisone eye drop will comfort your eyes. It used to do mine. Once I was dxed & started Restasis my eye attacks decreased. Took about a year to feel
Really better. My lacrimals & 5 of my salivary glands were atrophied by the time I was dxed. Hope tomorrow is better than today. cc
Hello Mat. I am very sorry that you are going through this. Like you I have been in great pain over the last month, the worst since I became ill 8 years ago. I thought I was done with this and on a positive path, but not so!
I can say this, we all miss appointment whether we have SjS or not, we're human. Hopefully you can forgive yourself and let it go (holding on I have learned, can increase the pain).
Also try to remember other times when it felt like the pain or issues wouldn't end, but they did. If you could get through that you can get through this. This is similar to a quote I found on Pintrest
So far you've survived what you thought was the worst day of your life, you can get through this.
Yes, you can, I know you can. Hugs.
Alas, MAT, immune Disorders keep creating new conditions because, for those of us 'fortunate few', our immune system keeps on attacking our organs/systems, doing more damage.
Those with autoimmune conditions sometimes have remission from continued attacks by taking medications (Plaquenil, Methotrexate,) which suppress the Immune System, slowing down the attack of autoantibodies.
My Immune Disorder is probably caused by attacks from cytokines, not autoantibodies, so immune suppressants aren't recommended.
Since my damage is neurological, I keep wondering when my brain will be under attack. So far, aside from occasional bouts of 'brain fog', I feel pretty alert and clear headed. my disordered Immune System keeps adding 'conditions' to my life. Right now I am dealing mostly with diagnosis and treatment of the gastric system problems which are very new for me. I always had a 'cast iron' digestive system, but that is changing: adding new problems and old problems getting more severe.
Yesterday I had the breath test for Small Intestinal Bacterial Overgrowth. I asked about this test when I was meeting with the Gastroenterology team after my surgery for achalasia. I have self diagnosed my bowel problem as IDS-D (irritable bowel syndrome-diarrhea) and am treating it with the food elimination diet, which seems to be working. But the symptoms are somewhat the same as SIBO, which can be treated with an antibiotic. So now I'll find out if that is one of my problems. I rather think it is NOT, but had the simple but time consuming test yesterday. If an antibiotic will help me, I'm all for that.
I feel fortunate that I had a pretty good life before my Immune Disorders suddenly increased dramatically when I was in my late 50's. 20 years later I am so disabled I cannot walk without a walker, so my life has changed dramatically And I've added a long list of conditions.
The reason my Immune System keeps attacking me is that there is currently nothing that can be done to moderate or stop the attack. I treat the symptoms (pain, dryness, hearing loss, anemia, heart disease, reflux, dental infections, on and on), I have IVIG every four weeks to add the antibody that I am 'low' in, so I don't get sick, and I have procedures to reverse (even temporarily) some of the damage.
When I read here what others are experiencing, I do not feel so alone. I also realize that we are all so different that I cannot assume I will react the same way to medications/procedures, and so on.
One difference for me is that I do not experience the same fear of medications and medical procedures that so many others experience. Perhaps this is the result of living in a very medical family, or perhaps it is just my nature. Every single thing in our environment is chemical. We live in a 'soup' of bacteria, fungus, and rely upon this 'living environment' for our well being. No matter what we do, we will die sooner or later. And I know I will make mistakes, that is human nature. And that doctors will make mistakes, as well.
The focus of my life now is 'acceptance'. I practice 'patience' and 'persistence', both of which are necessary for a life with an Immune Disorder. Now I must be gentle with myself, and 'accept' the nature of my life. This isn't easy for me. I'm a fighter by nature.
I'm fortunate that I moved by choice to an area with major medical centers, and that I have good health insurance. Everything is close, there are so many medical professionals to choose from, and with the help of this forum (and some others) I get news of the latest trends.
I find that PAIN is so disabling, and am really excited that Low Dose Naltrexone (LDN) is reducing my pain to a very great degree. Of course, like any medication, LDN isn't for every body.
Regards, Elaine
It's tough, isn't it.
Regarding the parotid infection, I started having those 2 years ago. This year an ENT doctor put me on pilocarpine, which is supposed to stimulate saliva. Though I don't have a huge improvement on saliva when eating, the somewhat larger amount of saliva helps avoid blocking of the glands in the parotid. I haven't had an infection since. Also, warm compresses may help the eye glands.
Salivary glands really benefit with the application of heat followed later with gentle massage. Drinking fluids also does help some plus the pilocarpine or Exovac meds which increase the secretion in the glands.
Our saliva gets so thick and sticky that it can easily plug up the ducts that empty the glands into the mouth. I have had the terrible spasms in my face from these plugged glands years before I knew I had Sjogrens. Horrible pain. The massage and heat is something that needs to be done on a regular basis---or at least every day.
There are just so many ailments that come with autoimmune disease that it is hard to keep up. All of these ailments are related to the inflammatory process. Hard to deal with at times but thankfully things wane and ebb some. Good luck,. Irish
Thanks all who have replied. Sorry for failing to respond until now but for some unfathomable reason my logins aren't staying logged in anymore and I'm not receiving e-alerts efficiently. I think it's a software issue with my iPhone rather than an issue with this site.
Anyway thanks to you all for replying. I feel I'm getting quite a good sense of what I need to speak to my rheum about when I see her again in a momth's time. Take care all. X
New Diagnosis as of last Friday: Small Intestinal Bacterial Overgrowth (SIBO)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/
My probable causes:
— Immunodeficiency states
— Gastric acid suppression (Omeprazole for 20 years! Yikes)
— Small bowel dysmotility (neuropathy from CVID, Immune Deficiency)
Currently taking two antibiotics: tephalexine and flagyl
I self diagnosed with IBS-D last year when the symptoms were too serious to ignore. But SIBO is often the actual diagnosis.
Symptoms Associated With Bacterial Overgrowth
Abdominal pain/discomfort
Bloating
Abdominal distension
Diarrhea
Flatulence
Weakness
Alas, Immune Disorders just keep on giving for those select few of us.
Regards, Elaine