New member

Hello,

I am a new member and have been hesitate about posting anything. I was previously diagnosed with Sjogren's Syndrome back in 2009. The doctor I went to wasn't to helpful so I just quit going. All the while feeling terrible. All these years I have been feeling this way and just telling myself that you are just tired. Mom of 2, Work, housewife, pianist at church. You are just stretched out. About 6 months ago I got to where I could hardly function anymore. So tired most of the day, everyday. I broke down and cried just the other day because I can't even seem to clean the house without feeling like I have run a marathon. I am seeing a new doctor on Thursday and I hope that this one is better than the first.

My husband is supportive but doesn't really know what to do because he doesn't understand the sickness and I don't really know what to tell him to do but be supportive because I don't know what to do. Other family members don't understand and don't really want to take the time to understand so I feel really alone. I cry a lot. Try to be strong. One dear friend of mine who is suffering with Osteoporosis told me to find a support group that I could talk to and read what they are going through. That is when I found you on the Internet. I am so thankful that I did. I have already read a lot of your discussions and I am encouraged that I am not alone. So thank you for that.

Becca

Hi Becca- glad you found the site! Sorry to hear that you feel there's few people you can talk to about how you're feeling- that is something a lot of members feel. There have been many discussions about this, and also how to adjust to this illness, and about fatigue. If you're up to that then have a search in the Discussions section- you can search for topics and might find some helpful tips. Here's a couple of links to get you started:

http://www.butyoudontlooksick.com/articles/written-by-christine/the...

http://www.sjogrenssyndromesupport.org/forum/topics/fatigue-1?id=65...

http://www.sjogrenssyndromesupport.org/forum/topics/open-letter

The first and last are something which members have used to show family and friends to help them understand how you feel. Hope they help!

Also if you're able before your doctor's appt., read up about treatments/ medications so that you're prepared. Write things down if you're like me and forget to mention things... Write down any questions you want to ask too. If you're knowledgeable yourself then hopefully you'll feel able to discuss SS with your doctor and have an idea in mind of what you'd like help with. Hope it goes well, and let us know how you get on!

Hi Becca,

Sorry to hear you have been having such a hard time. I was so happy when I found this site too it really helps a lot and makes you realise are not alone.

Hi Becca.. I think we have all been exactly in the spot you have described. I'm glad you are here too. This site has been a real life saver at times.

I do have a suggestion for you, if you don't mind…. Keep a symptom diary for awhile. Log anything that might make a difference. Weather, sleep quality, diet and how you are feeling pain and fatigue wise. It may help patterns emerge that you didn't see before. It helped me a lot and I refer back to it when I start feeling bad. It has gone a long way towards helping me maintain. I am one of the people that used those articles (especially the Open Letter) and it has helped a lot. A little piece of me feels bad worrying my family but at the same time, it helps to know that for that moment they get it. I hope the appointment with the new doc goes well. We always have to be our own best advocate. Let us know how it goes.

Hi there- I don't really have any answers for you. Just know you're not alone. I have had Sjogren's for years and also fibromyalgia so I ache all the time but the worst thing for me is the fatigue. I have been on cymbalta and gabapentin for yrs but recently have quit the cymbalta and am currently tapering off on the gabapentin. They make me feel even more lethargic and like I can't think straight. I thought they helped my pain for awhile but then they quit helping and the dr just kept upping my dose till I was like a zombie and just SICK. I can't take plaquinil - it makes me throw up - so now I am mostly trying some natural things..I'm thankful I'm retired now so I don't have to work anymore. My husband was never supportive because he was one of those people who never got sick but now he has some health problems too and is much more understanding. I hope you find something that works for you - I have just decided that for me I want to do natural things as much as possible because it's HORRIBLE to get off of some of these drugs the Dr's put you on.

Hi Becca,
I found this group a few months back and it’s so nice not being all alone.
Sjogrens I’ve had for years just didn’t know what it was, RA and Fibromyliga diagnosed in 2009.
I hate all the infusions my medications and the steriods. The whole thing is such a mess.
As a nurse practitioner in anesthesia I read every journal looking for answers but the truth seems to be that there are no answers…I do know cold, dark, noisy are all bad for me.
Restaurant Food is a problem because it’s so high in sodium that my pain is really high the next day. I now see a pain Doctor because my Rheumtologist won’t write for the strong pain meds I need.
Also I have a broken foot (metatarsal) that won’t heal due to the prednisone I’m on…
Enjoy life, I think keeping a journal is a great idea.
Thanks to everyone for being here so we can take comfort from the fact we are not alone.
Kathy I

I’d like to share some of the things I’ve learned on my journey. I was dx this last August with RA. Then a month later with Sjogren’s by my Rheumatologist based upon my symptoms. My fatigue and discomfort of my salivary glands were the worst of the symptoms, although I get double fatigue with both diseases. I now use a humidifier, Ponaris and saline spray for the nose, Biotene rinse and gel, Xyletol lozenges at night, lots of eye drops, dry mouth spray. The trick is getting doctors to treat Sjogrens. My Rheumy is stymied. My ENT is there when things go bad. My dentist is really important. I now use a fluoride toothpaste, get a cleaning every three months and anything else I can do to stop from getting cavities which we are prone to. I won’t use one of the prescriptions because they would make me sweat and I already take a drug to stop me from sweating. And this is “just” Sjogren’s! Not even talking RA here!! This is for a lifetime, so I just try to be positive! Good luck, you are most definitely not alone.

Hello Dear Becca,

This group is wonderful! It has always been a great source of information and support for me. Sjogren's is just not a popular illness to have. People can hardly pronounce it, let alone understand it. Read as much as you can, ask a ton of questions. You will find the strength, don't give up................I was diagnosed two years ago, but have had symtoms for more than 30yrs. Hard to find the right Rheumatologist, but when you do that will make a difference.

Sending you good thoughts and wishes!

Connie

Thanks so much to everyone for all your replies! I really don't know how to put into words how I feel right now. I know I don't know you all personally but I feel better knowing you all care. Thanks for each and every piece of advice and I am going to take it all in and put them into practice. Again I am so glad I found this group. :-) Will post how my doctor visit goes on Thursday. Praying I have a found a good doctor.

Hi Becca - I am so sorry for what you are going through. I was diagnosed a few years ago and also did not find a doctor that could help right away. My husband and family are as supportive as they can be but also do not understand enough about the condition. I do not have any advice about treatment approaches or meds etc.. I am still working on those on practically a daily basis. I will say that I had to learn to let go of the guilt and pressure that those around me inadvertently put on me (and that I put on my self). I had to learn to say no and conserve my energy - close my eyes when the dry eye pain laid me low and rest when I was so exhausted that walking up a flight of stairs seemed overwhelming. I had to vocalize when I was having a bad flare-up and let others ease the load a little bit. I tend to take too much on and when I push too hard the fatigue becomes overwhelming. I feel terrible when we have to plan around how I am feeling on a given day. I hate letting this disease define me but the fact is sometimes it does and I cannot control that. I hope you can talk to your doctor about how you are feeling and that it goes well for you.

I have rheumatoid & sjogrens, I to have been ignoring it all because of not having a good doctor I feel your pain I’m so tired also and have a very physical job so hope you get some good advice and can pass it along

wow Becca--you certainly have helped me some. Guess I gave up on myself and reading sjogren's support. before I read your post and others today I was feeling so sorry for myself, dealing with sjogren's, RA, fibromyalgia and possibly lupus for a number of years,husband usually nice, of course can't be helpful, and I felt he verbally abused me today. So depressed, was thinking about suicide. But after joining the group again, I will be faithful to that, its probably the only REAL hope I'm going to get.

OMG Sabra,

Sorry you are so depressed.............we all feel sorry for ourselves at times. You have a lot to deal with. Do you have a Dr? Are you on meds? I couldn't live my life without antianxiety medication. You may need an anti-depressant. Talk to your doctor about what you are feeling.

sabra said:

wow Becca--you certainly have helped me some. Guess I gave up on myself and reading sjogren's support. before I read your post and others today I was feeling so sorry for myself, dealing with sjogren's, RA, fibromyalgia and possibly lupus for a number of years,husband usually nice, of course can't be helpful, and I felt he verbally abused me today. So depressed, was thinking about suicide. But after joining the group again, I will be faithful to that, its probably the only REAL hope I'm going to get.

Sabra- Connie is right, feeling this bad is something you shouldn't be dealing with on your own. Please think about seeing your doctor to talk about it with them, and there are crisis helpline numbers on the top left of the home page if you need to talk to someone before that. Thinking of you...

Sabra, I am going to back up what the others have said. We know how overwhelming this can all be, and worse if s something else is adding to that weight. Please do not wait until you are feeling that down again to reach out for help. Whether its the numbers provided here, a local crisis line, a therapist or your medical doctor (to start with) please speak to someone…

thank you all for your support, suggestions. it helps a lot that you care and understan

Hi Becca,

This site has been a life saver for me. I have not been on for awhile. I did not have a diagnosis as of yet and was trying to just act like some of the others, like it wasn't happening. I had had a couple of good weeks, so was feeling pretty positive. I finally saw a rheumatologist a couple of weeks ago and since then been trying to quietly deal with what he said on my FIRST visit! He said that the sjorden's may never show up in my blood system, but he could tell from talking to me that I had it and the only way to know for sure was to do a lip biopsy. Ummm...no thank you! He also diagnosed me with fibromyalgia--this was the shocker for me. Yes, I have pain daily (stopped taking all tylenol, aspirin, ibupropen a couple months ago). I thought if this is now, what's it going to be like later. I can deal with this pain, so lets save the pain killers for when I can't. I've only taken them a couple times. I do use eye drops when needed. I sleep on my lunch hour every day. I cry a lot also. One of the ladies said you have to let go of the guilt you are holding. You can only do what you can do. I am very lucky to have a very supportive husband who cooks almost daily, but clean up--again ummmm....no! lol We have a thing we are trying to implement in my family (I have two children 21 and 12 that live at home also). Instead of mom getting angry at herself and taking it out on everyone cause I want my house clean and I can't do I need to tell them, I need help!! It takes a lot to say those words, but they have helped. Sjorderns sucks!!! But...don't let it run your life! If you need a day, take a day. If you need a nap, take one, but keep doing what you love. I've found that helps me the most and having family support. Tell hubby you need help with house, just need held, whatever it is you feel you need.

Hi Becca,

I noticed that you posted your message in the middle of the night. I'm wondering if you are a night owl like myself. I have been battling Sjogrens for over a year although I was just officially diagnosed with it last month. I take Evovax for my dry mouth and eyes. Unfortunately I have lost quite a few teeth because I just wasn't getting any help from any of the other over the counter stuff!. My dentist is talking about dentures. I also have fibromyalgia, rheumatoid arthritis and polymyalgia rheumatic. I'm on high dose steroids which have caused me to gain weight. I'm tired all the time but the Prednisone won't let me sleep so I tend to nap through the night. The fatigue is frustrating. I just got done mowing my yard. What normally took me45 mins took me 2 hours today. It's hard to always trying to explain yourself to others when you don't feel good.This is a great site and I've found it to be very helpful with not only the support but finding what has worked for others. I played the doctor game as well so I know where you are coming from there. I hope your visit goes well. Hang in there with the rest of us. Together we are stronger.



frustratedmom said:

Hi Becca,

This site has been a life saver for me. I have not been on for awhile. I did not have a diagnosis as of yet and was trying to just act like some of the others, like it wasn't happening. I had had a couple of good weeks, so was feeling pretty positive. I finally saw a rheumatologist a couple of weeks ago and since then been trying to quietly deal with what he said on my FIRST visit! He said that the sjorden's may never show up in my blood system, but he could tell from talking to me that I had it and the only way to know for sure was to do a lip biopsy. Ummm...no thank you! He also diagnosed me with fibromyalgia--this was the shocker for me. Yes, I have pain daily (stopped taking all tylenol, aspirin, ibupropen a couple months ago). I thought if this is now, what's it going to be like later. I can deal with this pain, so lets save the pain killers for when I can't. I've only taken them a couple times. I do use eye drops when needed. I sleep on my lunch hour every day. I cry a lot also. One of the ladies said you have to let go of the guilt you are holding. You can only do what you can do. I am very lucky to have a very supportive husband who cooks almost daily, but clean up--again ummmm....no! lol We have a thing we are trying to implement in my family (I have two children 21 and 12 that live at home also). Instead of mom getting angry at herself and taking it out on everyone cause I want my house clean and I can't do I need to tell them, I need help!! It takes a lot to say those words, but they have helped. Sjorderns sucks!!! But...don't let it run your life! If you need a day, take a day. If you need a nap, take one, but keep doing what you love. I've found that helps me the most and having family support. Tell hubby you need help with house, just need held, whatever it is you feel you need.



Rose said:I guess I was fortunate - it showed up in my blood right off the bat. I had been having some really bad pain mostly in my legs. I was taking 800mg ibuprofen and it wasn't even touching it so I ended up in the ER and the dr said he wantedto do an arthritis work up on me so he took some blood a day a couple of days later he called to tell me I had Sjogren's Syndrome- I had never heard of it. That was several yrs ago now but as I have looked back over my life, it's obvious to me that I have had it at least since my late teens. Now I m 64 yrs old and life isn't too fun- I try not to be crabby but it's hard. I no longer take the drugs I have been on for several years because of the side effects and they just didn't seem to be working anymore. My biggest problem is fatigue - I have to do everything in shifts- it takes me forever to get things done and then of course I am always fighting depression. I now have dentures after putting thousands of dollars in my teeth. I never thought I would turn into such a crabby old lady. I hate feeling this way. I just realized what a depressing post this is - sorry. Just needed to vent.

This site has been a life saver for me. I have not been on for awhile. I did not have a diagnosis as of yet and was trying to just act like some of the others, like it wasn't happening. I had had a couple of good weeks, so was feeling pretty positive. I finally saw a rheumatologist a couple of weeks ago and since then been trying to quietly deal with what he said on my FIRST visit! He said that the sjorden's may never show up in my blood system, but he could tell from talking to me that I had it and the only way to know for sure was to do a lip biopsy. Ummm...no thank you! He also diagnosed me with fibromyalgia--this was the shocker for me. Yes, I have pain daily (stopped taking all tylenol, aspirin, ibupropen a couple months ago). I thought if this is now, what's it going to be like later. I can deal with this pain, so lets save the pain killers for when I can't. I've only taken them a couple times. I do use eye drops when needed. I sleep on my lunch hour every day. I cry a lot also. One of the ladies said you have to let go of the guilt you are holding. You can only do what you can do. I am very lucky to have a very supportive husband who cooks almost daily, but clean up--again ummmm....no! lol We have a thing we are trying to implement in my family (I have two children 21 and 12 that live at home also). Instead of mom getting angry at herself and taking it out on everyone cause I want my house clean and I can't do I need to tell them, I need help!! It takes a lot to say those words, but they have helped. Sjorderns sucks!!! But...don't let it run your life! If you need a day, take a day. If you need a nap, take one, but keep doing what you love. I've found that helps me the most and having family support. Tell hubby you need help with house, just need held, whatever it is you feel you need.