Author Topic: I hate food and I hate eating even more so!  (Read 3608 times)

Corella

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I hate food and I hate eating even more so!
« on: March 07, 2012, 01:25:59 AM »
When I go to bed at night, despite me taking all the Biotene stuff (we dont have Salagen/pilocarpine tabs here), I choke in the night and have gotten used to sleeping with minimal or no swallowing so wake up with a cracked/dry mouth that needs to be sprayed prior to having any ability to swallow - this is AFTER Biotene oral gel.

Each time I put food in my mouth I dont have enough saliva to get it down, eating with sips of water dilutes the already affected taste and even my stomach doesnt want it - its like my whole digestive system is on strike for non payment of digestive enzymes.

I get no pleasure from eating now and only feel hungry when I am hypo which as I am on steroids and plaquenil, is quite often, I like to taste my food but its all impaired and even chewing gum drains what little saliva I do have.

I had stew today which was fine - nothing special as my tastebuds are stuffed and now in order to take my plaquenil, I have to eat but my mouth is so dry that even anything with sauce on doesnt float my boat and as my stomach doesnt feel hungry - I suspect that its a sjogrens thing, I know I have to eat but so wish I could bypass the whole process with a pill.  I reckon those meal replacement drinks might be the (expensive) way to go.

Do any of you have issues with food?  each time I take a sip of water prior to eating, it ruins the tasted and is getting harder.

I want my saliva back, I want my digestive enzymes to work properly and I want to eat maltesers without fearing immediate tooth rot.

And I am feeling super sorry for myself because I know by 6pm, I HAVE to eat something and I dont want to.

Please tell me I am not alone in my food issues.

Kirsi

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Re: I hate food and I hate eating even more so!
« Reply #1 on: March 07, 2012, 02:51:48 AM »
Hi Corella, I wrote a long reply, and it disappeared! Just wanted to say, I feel the very same. SS is slowly taking away any little treats, I used to enjoy.
Kirsi
xxx

4Kids

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Re: I hate food and I hate eating even more so!
« Reply #2 on: March 07, 2012, 09:06:28 AM »
So sorry :(

Before the Salagen, this is how I was. Most food turned to pebbles in my mouth and I lost my appetite and all the pleasure eating should bring was nil. It was awful. I ate a lot of hard boiled eggs with mayo. Somehow, they were slippery enough to eat. Also ice cream was good. Do you have thrush issues with that much saliva loss?

Where are you that you can't get Salagen? What about Evoxac?

Honestly, I would barely be able to face life without it. Can you move? Get your prescription filled in another country?  You need some help to function.

HUGS to you.
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Joe S.

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Re: I hate food and I hate eating even more so!
« Reply #3 on: March 07, 2012, 11:10:06 AM »
I take a bite, sip, chew, sip, turn head, swallow, sip and then I am ready for another bite. I know what you mean about not being hungry. :) I do not think I could survive the "Hunger Games". :)
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viking007

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Re: I hate food and I hate eating even more so!
« Reply #4 on: March 07, 2012, 12:19:54 PM »
Hi,

I am new but haven't posted my introduction yet. Will do so in a few minutes, but first I felt compelled to respond to your post.

I have an appt with a rheum next week to confirm the diagnosis, but I have had sjs symptoms for 20 years. I was misdiagnosed with MS for 12 of those years.

I had a hysterectomy in Nov and have been unable to swallow solid food since. I used to love eating, and now I absolutely dread it. I have lost 25 pounds and mainly live off of yogurt, Boost shakes and soup. The food gets stuck in my throat and I have to sip water with every bite. Also, my tastebuds are mostly dead and I am dealing with a numb tongue as well as thrush. All of this since my surgery 4 months ago. Eating is one of the great joys of life and it has been ripped from me. I am very angry and sad about it, as I am not able to go out to eat nor do I feel comfortable eating in front of anyone. I wake up starving because I'm not able to get enough calories in during the day. My mouth and throat are SO dry, and it hurts to eat because my mouth and tongue are burning all the time.

I am so sorry you are experiencing the same thing, but I am thankful I am not alone.

4Kids

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Re: I hate food and I hate eating even more so!
« Reply #5 on: March 07, 2012, 12:25:49 PM »
Viking, I had thrush too. It makes the dryness worse. Get yourself some nystatin lozenges. A pharmacy here in town makes jelly ones for me w no sweetener. Then get tea tree oil toothpaste. It is amazing how it kills the stragglers. Oh and liquid diflucan works best first, I did 250 mls per day for two weeks and then fought on and off until the nystatin jellies, but even then it would go red on my tongue. Then I got tea tree oil toothpaste and voila, gone. Your tastebuds return shortly after.
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viking007

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Re: I hate food and I hate eating even more so!
« Reply #6 on: March 07, 2012, 12:53:10 PM »
4Kids, thank you so much for the helpful info.

I had never had thrush before, and then poof, my mouth exploded with it in Dec. I did Nystatin for a week but it wasn't working, so took liquid Diflucan for a week. My body did not like that stuff, and I was very sick from it. But, it got rid of most of the thrush. However, it came back last week, and I am now swishing with the Nystatin again. I will definitely try tea tree oil toothpaste...off to order some from Amazon! Thanks for the tip. This yeast is no fun at all.

LOL...edited to change "shampoo" to "toothpaste." This dryness must be getting to my brain!  ::)
« Last Edit: March 07, 2012, 06:39:21 PM by viking007 »

Dolly Dimples

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Re: I hate food and I hate eating even more so!
« Reply #7 on: March 07, 2012, 02:23:12 PM »
Viking, please dont use TeaTree SHAMPOO in your mouth!!!
       4Kids meant TOOTHPASTE.. ughh!   Dolly X :-X

Skylar

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Re: I hate food and I hate eating even more so!
« Reply #8 on: March 07, 2012, 02:43:00 PM »
I want my saliva back, I want my digestive enzymes to work properly and I want to eat maltesers without fearing immediate tooth rot.
Oh boy, I can relate to that. I haven't had Maltesers in years - I love the malted flavor but they are too dry.

I eat a whole foods diet - no processed foods and I've found it's easier to swallow because in cooking I still retain most of the moisture in the food. I also use a lot of spices - but lately my mouth is complaining about anything spicy hot so I've been sticking with blander spices like fresh basil, marjoram etc.

Corella

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Re: I hate food and I hate eating even more so!
« Reply #9 on: March 08, 2012, 02:34:15 AM »
My Rheumy said as we dont have the tablets, only pilocarpine eye drops, to put eye drops in my mouth prior to eating, well I would rather eat my own dog (if I had saliva) these eye drops are vile.

We are celebrating our 21st Wedding anniversary tonight (well its tomorrow but hubby is home tonight), so he is cooking salmon/pasta and I think we are having champagne as well.

I would like you all to do a saliva dance and pray I have enough to enjoy it!  In return I shall be eternally grateful and I know I am not meant to have alcohol due to meds/drying effect but I will go by the Sjogrens mantra (I think of Joe!) 'Sip swish and swallow - as I am sure that can apply to champers!

Thanks guys - for listening and for being there for me to sound off.

sis

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Re: I hate food and I hate eating even more so!
« Reply #10 on: March 08, 2012, 05:38:54 AM »
I don't have as severe and issue as most who posted.

I have a fruit smoothie  w/ protein powder every day for lunch.

I make it from froz. mango's, yogurt and milk. 


Joe S.

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Re: I hate food and I hate eating even more so!
« Reply #11 on: March 08, 2012, 05:48:21 AM »
YUM!
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MissyLouWho?

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Re: I hate food and I hate eating even more so!
« Reply #12 on: March 08, 2012, 06:08:28 AM »
I was going to suggest what Sis did.  Maybe switch from solid food to smoothies, milkshakes, liquid stuff.  I find when my mouth is really dry, something thick like a milkshake will keep me moist longer than something more watery.  Can you talk to a nutritionist?  Maybe they can offer some advice.  So that you make sure you get nutrition as well as feeling full. 

Doing a rain dance over here for your mouth and Chief Crazy Horse was my great Great grandfather, so I think you have some saliva coming your way!  8) 

You enjoy your anniversary tonight.  If your husband is making the salmon with a honey bourbon glaze or something like that, maybe he can really double/triple/quadruple the batch of sauce to make it easier for you to swallow.  21 years; that's beautiful  :)

Belsey1

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Re: I hate food and I hate eating even more so!
« Reply #13 on: March 12, 2012, 09:06:27 PM »
Eating has really changed for me in the past few weeks.  Almost everything burns/hurts my mouth...I have more difficulty swallowing due to dryness and the food just doesn't taste the same.  I have been eating 1/2 or less of my food almost every meal.  The only thing wrong with that, in my opinion, is I just keep putting on more weight.

Corella

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Re: I hate food and I hate eating even more so!
« Reply #14 on: March 13, 2012, 05:14:53 AM »
My husband did a lovely meal tonight and I couldnt manage it - I hate swigging water while I am eating, hate it - even sips.  I had chicken livers in a pastry - lovely but couldnt eat it, my mouth and throat are burning.

I can go all night without swallowing now as I cannot be bothered to wake up hourly or more so to drink, so when I wake up I have the tongue of a 90 year old - all cracked and dried out (nice thought), then I spray with saliva substitute which enables me to swallow and boy does it hurt.

If I sneeze I get a ripping/burning feeling in my lungs as though they are being forced apart it is awful.  GP prescribed a steroid inhaler to help my lungs today.

If anyone finds my saliva, please return it to me because I would pay handsomely to dribble for a day.