Hi Nomad, glad that today has been a bit better. Looking back as I get to know SJ and it’s symptoms and it’s part of the auto-immune puzzle I see that I have had it for a long time judging from my symptoms. I am the type of person who just doesn’t stop or give in until I was knocked down flat by TN that began as TN1 and then morphed into TN2, the worst of which has been #10 on the pain scale 24/7 for the last year +. Prior to that I was treated for RA, SJ, Osteo Arthritis. Dental was a strong suspect for my TN and there were several instances that could have caused it, including surgery (failed) 25 years ago that had been simmering for a long time and when they got into the area of the failed surgery they found that packed gauze had been left in there for 25 years. That was just one of several dental horror stories. Yet my Neuro and Rheumo and Neuro Surg all feel it was from my SJ. I have a pretty brilliant daughter who is a RN at Children’s in Seattle who also has some auto-immune issues and she is an awesome research scientist on this subject. This helps because I can run my ideas past her for confirmation, although it has become more like she comes to me with the latest research and findings because many days just getting through the day is really difficult for me. Hope this helps answer your question. Take care!
OMG! A horrible story TL! The pain from this is insane!b(hugs) I think we have a proclivity toward it. But surgery and perhaps even MORESO… Leaving that gauze there for 25 years (are u #%}!) kidding me???contributed to TN / ATN! Sadly, my situation was a serious of dental horror stories starting with the first bad mistake and then when I went to other dentists and surgeons for help, they acted !!! And made it worse. So, I do wonder if I would have gotten the TN otherwise. I started with no pain. Their stupidity seem to give me this, but I recognize I may have been prone to it. I use an expensive compounded cream 5x daily and have Percocet for breakthrough pain. Wonderful about your dau being able to help with research and understanding!
Hi Nomad, yes the gauze being there 25 years is true, every year or so the tooth would “act up” and they would give me antibiotics and it would calm down then act up again a year and a half or two years later. Finally they opened it up to do surgery on the tooth/bone and that’s what they found. I saw it myself or would not have believed it. I tried to find the DDS who did it who since who moved to another state and had died before I could contact her. It sounds like yours is caused by dental, though. If it wasn’t for all the autoimmune stuff I would suspect dental too because I have had quite a few “sloppy” or bad experiences equal to the caliber of the gauze incident. Have you ever looked into a PNS for your ATN? Hope you are having a good day.
Today has been much better! What a story, TL… But mine is a whopper too. Dentists and dentistry “concern” me. What is PNS???
Yikes….SS and all the things that are happening to my body have had my focus so much that I actually forgot about all of the other stuff I have to deal with too, until I started reading some of the lists. Then its "Oh, I have that too…" At the moment I am on 7 prescriptions and 3 (doctor recommended) supplements. It drives me nuts that part of my programming for the day is timing the meds with meals, and each other.
I wonder about the dentist…..are the issues worse because that is part of the area effected by SS or is is the body overreacting, as it does with autoimmune in general.
Enjoy life, you made me smile about your meds. A woman saw me down my afternoon meds today and she was standing there with her mouth hanging open-- literally! Nomad, PNS is Peripheral Nerve Stimulator where they implant a stimulator and leads to deal with the ATN pain. It has made an incredible difference in my pain. While we’re talking about all these things, how do you guys deal with all this stuff making you tired? I have had ATN pain that dominated everything, now I am taking a fairly decent dose of Methotrexate injection weekly to go with Plaquenil for SJS and RA but I am so exhausted after doing very much of anything that I’m not sure how to handle it or what to think. When my arthritis went crazy a couple of montHs ago the Rheumy Dr said I was having a “flare” from going off the Methotrezate and having surgery. Now if I do very much one day I am exhausted the next day. Anybody know about this or able to point me in the right direction to learn about this? Thanks guys. We are going away for a few days in a while and I’m starting to wonder about having the energy to do it!
Oh yes, I had lengthy discussions with folks about a stimulator at first. But, right now the cream is working well, so I am going with the flow. When my lupus was active and I was on steroids, I had to go off v e r y slowly, or I would either flare or feel rotten or both! I’m visiting family again right now. It was a close one as …as you know…I felt HIDEOUS just a few days ago !!! Spent a solid day in a recliner chair with a heating pad and then slowly moved outward and onward from there. But, I’m taking it slowly. DH understands. We might go tO a store, for ex, then have to come home and rest before even discussing doing a second thing. It stinks! Speaking of meds…I have a small suitcase full! My regular meds and my “just in case” meds like for when my IBS flares. I haven’t flown in a plane since the ATN and wonder how I would fly with so many meds!!!
Enjoy Life…I was told that for some reason people with SS, Diabetes and MS are slightly more prone to TN or ATN. I know there are good dentists, but I had a very bad experience that started my TN pain and shockingly when I tried to get help from other dentists they only made it worse. It would take me hours to type in all the peculiar details. They are very slow to acknowledge TN pain. And of course it would be much better if they would do the opposite and try to learn about this potential hazard. Many people even w/o the illnesses I’ve mentioned , got TN or ATN after a visit to the dentist. I suppose since we with SS might be a little more prone to TN and more prone to dental issues overall…best to look for an excellent, experienced, SS aware and caring dentist.
Thank you Awesomed and everyone who got me through that flare ++++. It meant A LOT!
All I could say is that I feel the same way too. I have so many things wrong that it's too tiring to even try to remember all of them. I really do need to make a mile long list of ALL of issues. I sure hope this new Rheumy is going to be a good caring doctor. I know that they are people before they are doctors. The problem is that the pharmaceutical companies that own America give us prescriptions that will fix one issue and bring on many more symptoms. I can't stand it! If you check out the side effects of your drugs that we are taking...you'll see how $$$$=POWER. The sicker we are, the richer they become!
Flying isn’t bad, I have done it several times with TN, my Neuro has just instructed me to increase meds each time, which I did. The thing about meds is you have to bring them in their RX containers or labeled and since I usually have a wheel chair due to arthritis it has been pretty easy to carry everything on. My DH is very patient too, I am just having to try to figure out what is going on with me and the SJS and auto-immune exhaustion stuff because it is stopping me cold.
Nomad said:
Oh yes, I had lengthy discussions with folks about a stimulator at first. But, right now the cream is working well, so I am going with the flow. When my lupus was active and I was on steroids, I had to go off v e r y slowly, or I would either flare or feel rotten or both! I'm visiting family again right now. It was a close one as ....as you know....I felt HIDEOUS just a few days ago !!!! Spent a solid day in a recliner chair with a heating pad and then slowly moved outward and onward from there. But, I'm taking it slowly. DH understands. We might go tO a store, for ex, then have to come home and rest before even discussing doing a second thing. It stinks! Speaking of meds...I have a small suitcase full! My regular meds and my "just in case" meds like for when my IBS flares. I haven't flown in a plane since the ATN and wonder how I would fly with so many meds?!??!
Enjoy Life...I was told that for some reason people with SS, Diabetes and MS are slightly more prone to TN or ATN. I know there are good dentists, but I had a very bad experience that started my TN pain and shockingly when I tried to get help from other dentists they only made it worse. It would take me hours to type in all the peculiar details. They are very slow to acknowledge TN pain. And of course it would be much better if they would do the opposite and try to learn about this potential hazard. Many people even w/o the illnesses I've mentioned , got TN or ATN after a visit to the dentist. I suppose since we with SS might be a little more prone to TN and more prone to dental issues overall...best to look for an excellent, experienced, SS aware and caring dentist.
Thank you TL. It’s been a good two years and I haven’t flown.
Confused… I agree. I think (know) that taking steroids for lupus caused a very bad retina problem in my left eye (can barely see out of it) and two broken vertebrae. I had a good bone density test, but my rheumie discovered those old broken bones and went nuts. Insisted I take Forteo immediately. Hmmm. Well, after Forteo come Boniva. Forteo has a small cancer risk and they both have a small jaw bone necrosis risk. Yes, I know these meds can be helpful. BUT I’ve had my share of horrid side effects. So, I did the unthinkable. I hired an osteoporosis expert! And she said eat a ton of green veggies, exercise and re-evaluate…and especially with a good bone density test it was fine to hold off…maybe a better drug will come on market down the road. Well, the Dr was OUTRAGED when I said I didn’t want his drugs at this time. But, I’m learning to speak up.
PS TL. Sorry you are so exhausted. It’s a terrible feeling, I know. Probably have already done this, but have you had your vitamin levels and thyroid levels checked recently? Keeping my b12 and D optimized helps me with energy as well as my thyroid. But, chronic pain alOne can cause havoc.
Nomad, I was just reading about vitamin d and folic acid for nose and mouth sores. It’s hard to get vitamins down with nausea/vomiting from TN-- can only do it about 1/2 the time. It helps to keep some of the hair on my scalp too-- but I try. It is a struggle to get down and keep down all that I need, even after cutting down on some TN meds. I am hypo thyroid and it’s checked every 3months. Good for you about the osteoporosis decision-- we have more stock invested in a sound decision than one made in 90 seconds based on one test! But boy does it piss the drs off! My PCP actually acts jealous at times when getting reports from “all my specialists” as he refers to them. The exhaustion thing just caught me off guard because I assumed the extreme tiredness was from the 24/7 TN pain I was living with but then when a lot of the pain was gone I was /am shocked to find out I’m still exhausted. And that when I am doing a lot on one day I am a wreck the next day. It is just something that I am trying to figure out and come to grips with.
Hey Nomad, how are you feeling, girlfriend?
Thank you, SK. I had that day from hexx and then each day improved a little. We are visiting our son and his family now. I have to take breaks and do things in spurts. But, I’m very grateful fOr the improvement. While in the midst of that hexx it’s hard to control the thoughts…what if I stay like this etc. fully incapacitated, really. SO appreciate the support!!!