It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Sjögren's Syndrome Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 03-12-2011, 07:37 AM   #1
Member
(female)
 
trouble1968's Avatar
 
Join Date: Mar 2011
Location: Union, Ohio
Posts: 50
trouble1968 HB Usertrouble1968 HB Usertrouble1968 HB User
Fairly New to the Sjogren's

Hello everyone,

I am fairly new to this. I have been diagnosed with Fibromyalgia, Migraines, Sjogren's Syndrome, IBS-Constibation, Insomia, Anxiety, Lower back pain, righ shoulder pain.
Currently my symptoms are extreme dry eye, dry mouth, dry/cracking skin, headache constantly that spikes into Migraines, right now going through a diarrhea spell (it will switch back to constipation), when I have constipation I have gone as long a 2 weeks without going, Pain all over(5), pain in both knees(7), lower back (7), right shoulder (8), neck (5), hip (8), both ankles and so on. My general all over pain level with adding in the areas that hurt more is probably a 8 to a 9. I am not sleeping more than a couple hours at a time right now. My anxiety level is heavily elevated because we are relocating.

I have been told that exercise is good for me, which I am getting more physical activity but during bad days, I just can't motivate my body to exercise. I am going to try Yoga, some stretching and balance exercises. Since the stretching might help the joints and muscles. Hopefully help me with my balance issues. My plan is to start out twice a week and work up to about an hour a day.

I have problems walking up and down our stairs, by the time I am done vaccuming our living room and hallway I am in intense pain, then when I add vaccuming the furnature when I am done with that I have to sit down and rest for a while and I am pretty much done with any physical activity for the day. If I have to get on my hands and knees to clean the kitchen floor I can't do anything further.

I am really trying to figure out the best way to exercise and cause the least amount of down time for me physically.
So does anyone have any suggestions on what I should try?

 
Reply With Quote
The following user gives a hug of support to trouble1968:
mytrose43 (03-16-2011)
Sponsors Lightbulb
   
Old 03-12-2011, 02:23 PM   #2
Senior Member
(female)
 
Join Date: Jan 2011
Location: Brooklyn, NY
Posts: 136
brooklyngirl HB Userbrooklyngirl HB Userbrooklyngirl HB Userbrooklyngirl HB Userbrooklyngirl HB Userbrooklyngirl HB Userbrooklyngirl HB Userbrooklyngirl HB User
Re: Fairly New to the Sjogren's

I do yoga a few times a week and skate (ice and roller blade, depends on season) and find that both don't make my pain level any different. I have heard that swimming is really good but I have issues with shared water and don't own a pool so I can't tell you how it works from personal experience. I also walk the beach when I can get there, its a better workout than just walking because of the sand. I am also fairly new to Sjogren's, probably have had it for at least five years but was only recently tested because my first rheumatologist can't seem to see past giving everyone the fibromyalgia diagnosis (even though I have absolutely no muscle pain ever). I am still learning about this too and any information about helping dry eye/dry mouth/skin naturally would be great.

 
Reply With Quote
Old 03-16-2011, 02:40 PM   #3
Member
(female)
 
trouble1968's Avatar
 
Join Date: Mar 2011
Location: Union, Ohio
Posts: 50
trouble1968 HB Usertrouble1968 HB Usertrouble1968 HB User
Re: Fairly New to the Sjogren's

Fish oil, Vitamin D and Vitamin E are the only natural ways I know for dry eye, well I was told anyway. The dry mouth, I had to give up sugar, any type of soda (only on a rare occation), and alcohol. Which I still have dry mouth but at least I have periods during the day when I don't feel like I have a few hundred wades of cotton in my mouth. I also use Biotene products for the dry mouth. Since I can't stand to drink nothing but water I drink sugar free grape Kool Aid. I can't eat anything without something to drink (I mean anything) and I can't go more than about 15 to 20 minutes without something to drink.
Sorry I know I not of much help, but will update if I find any new ways to help in those areas

 
Reply With Quote
Old 03-20-2011, 03:34 PM   #4
Junior Member
(female)
 
Join Date: May 2010
Posts: 30
Danigirl22 HB User
Re: Fairly New to the Sjogren's

I have Sjogren's and migraines and hate to mention this, but most things that are sugar free contain artificial sweeteners that can trigger a headache or migraine. Chewing gum helps with dry mouth, but I can't chew it because gum with sugar is bad for my teeth, but the artificial sweeteners give me headaches. Maybe do a test and not have the sugar free grape Kool-Aid, or anything with artificual sweeteners, for awhile and see if your headaches improve? It may be a minor change, but worth testing.

 
Reply With Quote
Old 03-21-2011, 07:08 AM   #5
Member
(female)
 
trouble1968's Avatar
 
Join Date: Mar 2011
Location: Union, Ohio
Posts: 50
trouble1968 HB Usertrouble1968 HB Usertrouble1968 HB User
Re: Fairly New to the Sjogren's

Danigirl,

I agree that artificial sweeteners can trigger migraines. I am lucky that it isn't a trigger for me. I am also suppose to chew gum with zilatol (spelling?) in it to help with the dry mouth but it is hard to find the gums with that in it and like you said it is bad for our teeth. I just had over $3000 worth of work done to my mouth in the past 2 and a half years. So I am trying to keep from having to have more done, but as I have learned with Sjogrens that may be impossible without getting dentures. Which I am deparately trying to avoid. I am 43 and don't want to go that route yet.

Are you having any problems with your eye site? If so what kind of issues are you having?

Thank you for your posting, it is nice to know that there are others out there with the same or similar symptoms. I have chatted with several people on here and it has been helpful and gives me someplace to vent about all of this craziness with my body. When I went to my doctor on 3/11/11 he said something that is very true our bodies are attacking themselves, the body is at war with the body. My comment back was basically so my body hates me.....he laughed and said yes it is, I laughed with him but in all reality those statements are what we all deal with everyday.
Again thanks.

 
Reply With Quote
Old 03-22-2011, 02:12 PM   #6
Junior Member
(female)
 
Join Date: May 2010
Posts: 30
Danigirl22 HB User
Re: Fairly New to the Sjogren's

Trouble1968,

I'm glad artificial sweeteners aren't a problem for you. Yes, I'm having trouble with my eyes too. They're very dry and sometimes burn. My vision is blurry from the dryness. I use Restasis and have two punctal plugs. I'm 34 and was diagnosed about a year ago. This is still hard to comprehend. I feel like my body isn't mine anymore, in a weird sort of way.

 
Reply With Quote
Old 03-26-2011, 05:47 AM   #7
Member
(female)
 
trouble1968's Avatar
 
Join Date: Mar 2011
Location: Union, Ohio
Posts: 50
trouble1968 HB Usertrouble1968 HB Usertrouble1968 HB User
Re: Fairly New to the Sjogren's

Danigirl22,
I completely understand about feeling like your body isn't yours anymore....I couldn't have said it any better. My body hates me!! I am not sure what to expect next from my body...I definately wish they would figure out what causes this or at least find something that really helps instead of a laundry list of medications that have nasty side effects, plus that interact with each other. So you take the rist of taking these medications alone or together in hopes you can have a somewhat "normal" like and have to cross your fingers that you don't have any of the side effects or reactions!!!
Pain has become a realtive term for me, there isn't any words to describe the pain I am in every day of my life, I am tired of not being able to do some of the things I want to do...so I push myself to do things and them I pay dearly for the next few days because I over did it. I don't even try to come up with excuses anymore. I just say sorry I can't go or I am not capable of doing that right now. When people ask why I just say "I am sorry I can't." and change the topic or move forward with the conversation. People just look at me like I am crazy since on the outside it looks like there absolutely nothing wrong.

Ok sorry for that pitty party. The eye doctor I just went to earlier this month said something about the plugs. I am not sure that is for me though. If eye drops don't even releave it for more that an hour (that is being very gracious) then I am not sure I want them sticking something in my tear duct. I guess I am just asking for more eye trouble since I decided to register for classes again this quarter. I just have to hope that my eyes will hold out and I am going to buy a book magnifier. But taking online classes means I am taking at least 3 classes this quarter (waiting to find out if I have to pick up another class to get my finanical aid and student loans) and trying to finish packing our house, get out house rented, and figure out how to load all this crap into a 27 foot moving truck to move to Pennsylvania.....my husband is already there so he can't help. But to be completely honest, I not only need the classes to try to find a job (social security feels that I am young enough, educated enough, have enough experiene to get a job and keep a job. They denied me in February my issues aren't severe enough to meet there standards of disabled.) but I need to take the classes so I get the difference after paying for my classes sent to me by the school to survive on. I have to use that money to live until I can find something or get approved by social security.
Sorry just feeling down today, I am going to go now. I hope you feel better and have a good weekend.
Mikki

 
Reply With Quote
Old 03-28-2011, 12:41 PM   #8
Junior Member
(female)
 
Join Date: May 2010
Posts: 30
Danigirl22 HB User
Re: Fairly New to the Sjogren's

Mikki,

It's very hard to explain this to people, like you mentioned, especially when it doesn't look like anything is wrong. It's hard having a problem most people have never heard of!

The tear duct plugs are supposed to help keep tears in your eyes longer. They're worth trying. The thought seemed weird to me at first, but I'll do pretty much anything to help with the dryness!

With so much going on in your life now, keep the option of getting the plugs in the back of your mind, but wait until life gets a little less hectic.

Are you taking Evoxac or Salagen for help with dryness? Do either of them help at all?

I have good and bad days, but I know I'm not alone, even if it feels that way. So many people have health problems that no one knows they have. It can be hard to deal with when it "feels" like you're the only one. Hang in there.

 
Reply With Quote
Old 03-29-2011, 08:01 AM   #9
Member
(female)
 
trouble1968's Avatar
 
Join Date: Mar 2011
Location: Union, Ohio
Posts: 50
trouble1968 HB Usertrouble1968 HB Usertrouble1968 HB User
Re: Fairly New to the Sjogren's

Danigirl22,

I am not on any medications for the dry eye or dry mouth. Just over the counter stuff and vitamins. I am going to check into the tear duct plugs, but like you said when life isn't so hectic. I use three different types of eye drops when my eyes get really bad, I mean my eyes are always dry but that has become normal. When my eyes get exceptionally dry they don't want to stay open, it hurts just to look at something or blink or anything then. I will be honest I am suppose to put them in my eyes several times a day but sometimes I get so busy I forget them, either I leave them at home or I leave them in my car or something crazy. Plus it really doesn't seem to make much of a difference until they get to the exceptionally dry point. The one eye drop (Sustane Balance) kind of burns if my eyes are really dry.
I got my new glasses yesterday and boy they make a difference on being able to see up close and read with out have to hold my right eye shut. My right eye is worse than my left. But my eyes are so used to straining to see that the new glasses are giving me a headache, but I know that will only last a few days. I have to have my eyes checked again in August, I hope the prescription doesn't change again.
Now on top of everything I am coming down with a cold. I really wish warm weather would come and stay. I hate this up and down crap and I don't have time to be sick on top of the Fibro & Sjogrens crisis I am in.
I have postponed the move by two weeks. Which gives me a little breathing room. On Saturday I took my graddaughter, son and daughter in law to my neices 3rd birthday party, it was a bowling party. It was so cute watching the little ones bowl. My granddaughter thought she was big stuff!!! LOL On Sunday I went to a mobilization briefing for my youngest son on Sunday, he is deploying to Afganistan in July, so that kicked my nerves into overdrive. Made his deployment so much for definate then it was before. Classes started yesterday, so I am trying to get going on them and possibly get ahead in a couple of them. So the past few days have been very busy.
How was your weekend? I hope it was good.
Mikki

 
Reply With Quote
Old 04-12-2011, 10:26 AM   #10
Junior Member
(female)
 
Join Date: May 2010
Posts: 30
Danigirl22 HB User
Re: Fairly New to the Sjogren's

Mikki,

Restasis is very helpful. You might want to try it, maybe even before the plugs if you're nervous about getting them. I'm bad about remembering drops throughout the day too, but I'm better with Restasis because I just use it in the morning and at night. I've made it part of my routine. It's hard to remember drops during the day when things are busy! It does take a few months to really work. I didn't think it was working and I stopped, but my eyes got worse, so I knew it helped and I used it again.

Hope things with your move are going smoothly!

 
Reply With Quote
Old 09-19-2011, 07:50 PM   #11
Newbie
(female)
 
Join Date: Sep 2011
Location: canada
Posts: 2
bender62 HB User
Re: Fairly New to the Sjogren's

I have been trying a product called Thera Tears with no preservatives..it helps me, however my situation with all the symptoms that Sjogrens and Fibromyalgia & depression and addictions that give me worse times more than my eyes.However I do have dry eyes and need the extra lubrication ( I hope you find some relief..this disease is so frustrating) I am 44 and well ..i am going through tough time right now because of this disease and well i am just frustrated and scared too.

 
Reply With Quote
Old 09-21-2011, 07:15 AM   #12
Newbie
(female)
 
Join Date: Sep 2011
Location: Gastonia, NC USA
Posts: 1
rrmartin HB User
Re: Fairly New to the Sjogren's

Quote:
Originally Posted by brooklyngirl View Post
I do yoga a few times a week and skate (ice and roller blade, depends on season) and find that both don't make my pain level any different. I have heard that swimming is really good but I have issues with shared water and don't own a pool so I can't tell you how it works from personal experience. I also walk the beach when I can get there, its a better workout than just walking because of the sand. I am also fairly new to Sjogren's, probably have had it for at least five years but was only recently tested because my first rheumatologist can't seem to see past giving everyone the fibromyalgia diagnosis (even though I have absolutely no muscle pain ever). I am still learning about this too and any information about helping dry eye/dry mouth/skin naturally would be great.
I had eye plugs put in my eyes to help my tears. They seem to be working real well. Talk to your eye dr about this.

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Sjogren's and migraines? Danigirl22 Sjögren's Syndrome 14 05-19-2012 05:24 PM
Opinions please - What do you think causes Sjogren's? Danigirl22 Sjögren's Syndrome 24 10-20-2011 11:37 AM
Strange Sjogren's Symptoms? Atocha Sjögren's Syndrome 20 07-23-2011 05:44 AM
Dry Eyes- Sjogren's Sydrome bxq Sjögren's Syndrome 16 07-13-2011 06:33 AM
bloodtest for sjogren mary003 Sjögren's Syndrome 5 04-07-2009 08:46 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added











All times are GMT -7. The time now is 07:50 PM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!