Author Topic: " New Normal "  (Read 1352 times)

katie3

  • Newbie
  • *
  • Posts: 20
" New Normal "
« on: October 01, 2017, 12:50:11 PM »
Hello All.
Thank you for all your previous responses to my posts...... I am new at my diagnosis but have had symptoms for years.... My dry mouth is So BAD and so sore.. it really seemed to nose dive last spring and I have not rebounded.. ( 6 weeks Salagan )... I LOVE people and love talking to people... I am soooooo sad and bummed ... actually depressed and scared.... I don't mean to be negative or a complainer... I am just wondering how I'm going to do this.  I am trying everything..... I'm thinking that this is my new normal..... so sad that it turned bad so quickly.. I am avoiding so much and getting to the point that I have anxiety about going out...... that is just not me.......... Any tips on coping and dealing would be a god send.....

Katie

Joe S.

  • Hero Member
  • *****
  • Posts: 7691
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: " New Normal "
« Reply #1 on: October 01, 2017, 01:41:04 PM »
Water Rant #1.

With Sjogrens we tend to be very very dry. We should avoid drying liquids like alcohol. We can no longer drink water as that will dehydrate us. We need to sip water. Swish it around in our mouth. Hold it for a bit before we swallow. Doing this I can stretch the time between sips. Still when I see my doctor and she looks in my mouth I get the OMG are you DRY! But it does not hurt as much. Winters are dryer than summers (Heating season) so use your humidifier.

Rant done.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

katie3

  • Newbie
  • *
  • Posts: 20
Re: " New Normal "
« Reply #2 on: October 01, 2017, 01:57:04 PM »
Thank you for the response.... It it is the ongoing unhealed mouth sores that are getting to me and making it hard to talk.... please forgive me .....

SunshineDaydream

  • Hero Member
  • *****
  • Posts: 709
Re: " New Normal "
« Reply #3 on: October 01, 2017, 02:45:39 PM »
If your mouth sores are severe, numerous or interfering with your life, as your doctor about Magic Mouthwash.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

LadyDi

  • Full Member
  • ***
  • Posts: 242
Re: " New Normal "
« Reply #4 on: October 01, 2017, 03:48:45 PM »
Hi Katie,

I'm sorry to hear about the state of your mouth and the sores. I know exactly how it feels and how hard it is to eat, talk and function.

Last August, I had a terrible bout of thrush and my mouth was full of sores. My Dr. prescribed me Nystatin, which was successful at killing the yeast and therefore helping my mouth.

A few years ago, I had a prescription that was called Neutrasal that a dentist prescribed for me. It is a powder that you mix with water to make a supersaturated calcium phosphate solution. This solution is swished around in the mouth twice a day and then spit out. It is wonderful for dry mouth, healing and preventing new mouth sores and basically keeping the PH balance of the mouth where it should be.

Well, to make a long story short, I let the prescription lapse and hadn't been using it for approx. 3 years. After the last episode of thrush, I looked up Neutrasal online and called the number. The woman told me that I would need a prescription from my dentist and that it should be covered by my prescription benefits under my medical insurance.

My Dentist faxed over the prescription and I have been using it for around 3 weeks and my mouth feels much better. My medical insurance covered the cost. Please give this a try and good luck!
Primary Sjogrens, fibromyalgia,partial thyroidectomy/hypothyroid, asthma, chronic sinusitis/nasal polyps, environmental allergies. Plaquenil, Evoxac,Restasis,Neutrasal, levothyroxine, Zyrtec, Singulair, Proair inhaler, spironolactone

katie3

  • Newbie
  • *
  • Posts: 20
Re: " New Normal "
« Reply #5 on: October 01, 2017, 04:43:22 PM »
Thank you, thank you, ..... I'm going to ask My dentist about the NeutraSal tomorrow....

Navigator

  • Hero Member
  • *****
  • Posts: 520
Re: " New Normal "
« Reply #6 on: October 02, 2017, 04:25:37 PM »
Are you talking about canker sores on the inside of your mouth?  If yes you can ask you doctor about getting triamcinolone 0.1% dental paste as a prescription.   It is gritty to make it stick and you put it on twice a day....I have done it at after work and again at bedtime....sometimes just once a day will work as well.   It takes about two days but for me clears things up completely.  I wipe it off upon waking up because it is not exactly great to have gritty stuff in your mouth all day.  But in my experience it does work.
Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

cccourt1942

  • Hero Member
  • *****
  • Posts: 1532
  • Suffered from numerous symptoms for about 25 years
Re: " New Normal "
« Reply #7 on: October 03, 2017, 08:57:44 AM »
Katie:
   You've already received such good info.  I want to tell you what I do when knowing I am expected to talk:  I keep Xylimelts. Place one along upper gum, and it will dispense a little moisture until it completely dissolves.  You can do this also if you are staying up late and don't take your last salagen for the evening.  I will tell you there have been occasions I took too many in a day and had stomach distress the next day...so use with caution until you know your tolerance level.  You think having this thing stuck up there would interfere with oral communication, but the thing is, if it does slip, you can reposition with your tongue.  Takes no more time than the time to clear your throat, or short cough.  No one will notice.

Good luck,
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene