Hi Everyone it's been way too long! It's Debbie! Nanny 23's sister! I've been busy for last almost 2 years with my hubby that had bladder cancer! He had 2 bladder surgeries and heart attack after 2bd surgery! Was headed for Massive Heart Attack and was sen across the stree to Cornell Medical Centre in NYC! Sloan Jettering was treating him for Cancer! He had chemotherapy and radiation for 3 months and Docs said he'd progress very fast after treatments with Alzheimer's! Needless to say he's bedridden! Can walk 10 feet with walker, but has hospital bed now! I awoke from my fog and decided I can't take care of him and our son! My stepson for 40 years whom is Mentally Challenged and needs care also! Bathing help to dress cut food etc... I am getting sickly now! My Sjogrens is in a flare! I have burning tongue and white spots on my tongue plus cuts on my tongue! Very red and painful! It's hard to swallow! I seem to be ok with my shots everyday with APS! Although my RA is in a great flare! I'm getting my 3rd leg and foot in 4 years! It's really unheard of doc said! I wore out my foot! Lol... They said usually people who loose their leg are not as active as me! I have no time for pitying myself so I keep running! Afraid to actually stop! Now I must slow down! My question is what kind of doc do I go to for Sjogrens! I went to my primary today and since I don't sleep much, he said my autoimmune system is breaking down! He's not a good doctor! Said he cud do nothing for my tongue! Told me I talk too much and have too many autoimmune diseases! Must fin a new doctor! He gave me meds to sleep that he gave me 2 years ago and I told him they didn't work! Does anyone else have insomnia? It's awful! I've lost 30-40 pounds without trying! Just thru past year or so! Maybe a Rheumatologist? I have dental appointment Monday! I miss y'all Mary, Lynn, Kirsten, Dave and all my friends! Kelly from Texas! I do sure hope Y'all are well and Happy and have a HAPPY AND HEALTHY NEW YEAR!!! GODSPEED
Back with some flareups: Hi Everyone it... - Hughes Syndrome A...
Back with some flareups
It’s nice to hear from you. It sounds like you’ve had a rough time. I’m suffering insomnia (medication related) which is why I’m answering at 3:30am!
Yes I believe a rheumatologist would be able to help with sjogrens, but as always, look into who is knowledgeable in this particular field to gain the most benefit.
Take care
Kelly 🇬🇧
Thx it's 4:30am and I'm responding! Lol... I am going to my dentist, whom I've been going to for 30 years! He's very kind and sensitive to my needs! I'm going crazy with tongue and my docdid nothing! I do have a lidocaine solution I was given by oral surgeon! Swallowing is roug! Thx so much for ur reply! I've missed y'all! GODSPEED I hope u get feeling from ur insomnia! My nasty doctor gave me trazidone for sleep! Took tonight, obviously not working!. Makes me feel groggy!
I have used Magic Swizzle for burning sore tongue. It is a liquid ther pharmacist makes out of maalox, Benadryl, lidocaine.
It really helps my tongue and any sores in mouth.
I’ve also found antivirals help my mouth- I use acyclovir 400 mg. twice a day.
Yes, I have horrible insomnia but I haven’t found solution for that.
Good luck!
Nancy in West Virginia
Oh wow West Virginia! I'm from Long Island New York! A lot of docs her don't know much about APS, let alone Sjogrens! My RA is in flare up too! I guess I have myself to blame! Just took car of my hubby and son refusing to ask for help! I suddenly woke up and got a hospital bed! I have our Veterans Administration coming to see us today to see what I need in home to take care of him! Like a ramp, bars and handrails for tub, and whatever they suggest! He is better since new bed! Thx for responding it helps! My doc gave me nothing for the RA! Have a great day!
I used to be a registered dietitian at the huntington VA hospital. We had the best home health care nurses who would get home care patients everything they needed.
Nancy in West Virginia
Thx For your great reply! It was very informative! I got from my dentist the Magic Swizzle! My insurance doesn't cover it, but I had to pay the $80 cuz I'm in agony! He said the cuts are from the Sjogrens dryness! It's awful! Have u ever heard of people having trouble swallowing? I can't eat meat unless I chew it for an hour! I choke so I choose not to eat! Great diet lol... GODSPEED
Yes, I have trouble swallowing. Last GI endoscope showed a stricture in esophagus which they dialyated.
It helps if I take small bites and wash food down with lots of liquid.
Nancy
Hi, nice to hear from you again. As per usual your life is so full on, no wonder your body is rebelling!
Nasty doc telling you to be quiet!!! Thats no help, yes go and see a rheumatologist for your SS, but do some research first, someone that has APS & SS knowledge?
I don't get burning sensation in my mouth but do on my lips, sorry nothing for me helps!! I would check your B12 and maybe oral thrush?
Sleep - well I think that's related to all that you have going on and there's nothing you can do about that other than try and give yourself 'me' time.
I have slept only 3 hrs at a time for nearly 3 years now, to the point sleep away from hubby in my own room now. I've had to just accept the change, stress doesn't help. Fortunately for me, after about 2 hrs awake I get another 3 hours. I've adjusted my routine to adapt this.
I also started taking low dose naltrexone for my pain, MaryF advised and the bonus is I have less SS flares.
Again nice to hear from you.
Holly, I take low dose naltrexone also. My pain management doctor is trying some new meds on patches. I’ll let you all know if it helps.
Nancy
A few years ago my husband was being treated for rectal cancer, my anxiety skyrocketed I was up every night researching the odds and treatment options, watching three children under 9 and in the middle of a home addition project when he was diagnosed. I slept on average two hours a day until I found that lavender oil in my diffuser calmed me down enough to fall asleep. I still use it every day now.
I just recently had a series of major strokes and as a result that horrible anxiety is back. I am seeing a neuropsychologist who is teaching me mindful CBT and it is not only improving my sleep even more it is helping me live with the stroke symptoms and has lessened the hypervigilant symptoms that often induced more anxiety and noticable symptoms with in me. It is not a cure but it certainly has helped my quality of life incredibly. With your history and present situation combined I do not doubt you are suffering from PTSD like I was.
Good luck xo
Keep giving great advice on this in such a fresh and approachable way- it’s great. I think it’s overwhelming for all of us - especially initially. Even when we are ,” seasoned,” patients we get surprises from our bodies not playing nice. It can feel very overwhelming and new again.
We do learn that the swings will settle back down and we have the advantage of time to see that . And we have learned what particular tools work or don’t work for us- so this helps with the ,” unknown “ which can leads to some anxiety. No one willingly signs up for chronic illness!
Hey Debb!
Gosh it’s great to hear from you!
I often wonder about you and how you are.
New York Grit through and through, my friend. ( but that’s going to serve you well only up to a point.)
Yes. You absolutely need a Rheumatoligist. Dr Gerald Wiesman (? I’m going to need to double check the spelling) is the top Rheumatoligist for you in nyc. He understands APS very well, and the accompanying auto immune diseases that so frequently are seen with it. He wrote a paper called Queen Anne’s Lupus ( and the rise if a new nation). I’m paraphrasing a bit here, as I don’t have the article in front of me, but I will come back to you and insert it . This APS specialist Rheumatoligist specifically references APS in Queen Anne’s case. Because she had so many miscarriages, she couldn’t produce a male heir. Ultimately as history unfolded, this led to the Birth of the United States!
There is a movie in theatres right now starring Called The Favourite. I believe it’s starting Emma Stone. It’s actually about Queen Ann and
Her political and personal life as seen through the modern day film industry!
A read of Queen Anne on Wikipedia was very interesting. She was not an inept leader by any means at all. I am inspired how she managed to do all she did.
You are now reminding me of her- she had terrible trouble with her legs- was in great pain- and still did not give up!
Have you looked at the new charity website just for dr Hughes ‘ small mini talks? You might like them.
Also, there is a link to the international list of recommended doctors there. This DrGerald Weismann ( spelling?) is on that list. NYC.
So glad you ,”checked in with you APS / Hughes family!”
Kelly🌵
Suddenly I realized that our Debb is back here again!!
I have been waiting for you.......... GODSPEED!!!!
Love from Kerstin
Hi, you have had a very busy and rough time, nice to see you back. I know I said this months back, but do check your Thyroid, (making sure tests like these are done), and also your level of B12, a sore tongue and cracks in the side of the mouth can indicate B12 deficiency which can progress and become nasty.
TSH FT3 FT4 TGAb TPOAb VitB12 (active) Folate Ferritin Vitamin D CRP-hs
I also enclose our charity website, which has specialists on the front who understand the condition, also others on here can guide you to who they see, but best to see a Rheumatologist who fully understands Hughes Syndrome/APS.
Until I sorted my Thyroid out, my sleep was appalling.
Mary F
Good to hear from you again! - though sorry to hear you've been through the wringer. A tid bit of sharing which may account for your sleeplessness. I have not been diagnosed with Sjogrens but I have in the past had a lot of symptoms. One which may or may not relate is: when I had a series of MRIs ordered by the wonderful neurologist Dr. John (now in Florida,) in addition to the leisions which confirmed his theory that I had APS, he also spotted a cyst on my pineal gland. There was a folllow up MRI a year later which showed the cyst had not grown. He asked me if I had trouble sleeping. "No, not really." "Is there anything about your circadian rhythum/sleep cycle that has changed or is unusual?" "Now that you ask, Yes. I have a lot of trouble with seasonal time changes and with travel. I become sleepy at the same time -- which currently is 8:00 PM. But when daylight savings time comes, it will be 7:00. And if a travel to Europe the time change can be brutal. " "Ah ha! That's what the cyst is doing! It is restricting the flow of melatonin, which means you can't shift your sleep cycle! You might try some melatonin and see if that helps when you travel." And it did. I moved slowly up to a higher and higher nightly dose as I moved into "sleepless menopause." Since surmounting the menopause peak and going gluten free I have backed down to a small dose -- every night. (Gluten free also nearly eliminated the oral canker sores I once had, so, I think gluten free has reduced possible Sjorenson's symptoms.) I share my experience to counter any self- criticism you may have following that rude doctor's pronouncement.
(And by the way -- have you read "In the KIngdom of the Sick?" It is a very supportive book written by someone who undestands the barrior between mindless doctors -- and others -- and us chronic illness patients.)
Definitely a rheumatologist and an ophthalmologist that specializes in Sjogren’s
Yes. See a rhuematologist. Funny I just had a biopsy of my tongue. I too had this white spot which not even the dentist knew what it was. I complained of cuts on my tongue too. So I just saw a rhuematologist because no one else knew how to help me. But the dentist wanted me to have it removed and biopsied. It was extremely painful and even more painful on the recovery end.
has anyone had a problem with bone fractures?
