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Sjogren's Syndrome Support

Thank You

Just want to say thank you for the kind replies. Having trouble keeping up due to fatigue and brain fog, but it's very nice to know you all are here. In a way it makes the disease less scary because we all seem to have similar symptoms; eventually there could be a cure.

It is always nice to know we are not alone. Often, even our loved ones don't get it. We may look okay to them and yet we are suffering. They expect us to keep going when we have NO energy and can't. Hang in there my friend. Wish we could get together and just listen and encourage each other. Nothing else expected. We wouldn't have the energy to do anything else. I am finally feeling a little better after 3 months on the generic for Plaquenil. It is hard to be patient when so many different parts of the body are affected though.

I am newly diagnosed and am finding it hard to get my family to understand that this is real. I have my daughter and 2 year old granddaughter here with me. I don't think my daughter understands why I can't watch my granddaughter. I am just too tired. I need help around the house and I don't get it. The brain fog is real! It is nice to have a place to come where people know what is going on, Thank you

Every symptom you have is real. I was always very quick thinking about things. The brain fog makes you wonder not only about the physical things but now mentally we just aren't as alert. But my sister and I used to joke that if we were worried that we were going crazy, we weren't. Perhaps you could have your daughter read some information that describes what you are going through. It might open her eyes and help her have empathy for all you are confronted with on a daily basis.

I do intend on giving her some reading material and hope it sinks in. I do like this group and am thankful to all of you for the support that is here

Poet I noticed my mental alertness deterioting also , but I am lucky my family could see it too! But I had no idea what was causing it till I found out I had Sjrogens .I had a head injury when I was very young I was thrown from a car and had a fractured skull which required surgery. Which effected my learning at school and I Was blaming that. I have never been a quick thinker but I was becoming even slower.
I think it is a good idea to get our families to read information. my rheumatologist gave me something simple for me to read and my family.
I have put it on the fridge so they can,t miss it!.
I have been a severe asthmatic all my life too requiring hospitalisation many times as a child but some of my family when I was a child never got it but my family now do, hang in there everyone battling lack of understanding you are not alone you have this group ,give yourself permission to say know without feeling guilty because you have a illness you didnot ask for.

Forgot to say I am so thankful to be part of this group

I am thankful for this group also. It has helped me maintain my sanity and to keep hoping for better days. The last four days have been my best ones since last Summer. The meds are finally helping. Others told me it would take a couple of months and I was skeptical, but they were right. Give things a good try before going to another prescription. I just have to keep getting my eyes checked since the Plaquenil can damage the retinas and I had detachments as a teenager. Blind in one eye since then and making sure my one good eye stays good. Figures that the medicine that would help one thing could ruin my life in another way. Oh well, I am enjoying cleaning my house and washing curtains, etc... You don't appreciate mundane things until you can't do them. Have a great weekend everyone. I wish you pain free days and a spirit of optimism.

I also hate the brain fog and chronic fatigue.It really sux. The one thing i am happy for is the punctal plugs in my eyes have helped. Now if i could only get the chronic pain under control that would be good. I also finally get to go see the SSI Judge with my atty on the 25th!!

Me too I go on Thursday March 24th. Blessings to us all.

Good luck to you both. I applied for SSDI back in 2000 but didn’t qualify and just realized I was getting SSI for low income. I’m pretty sure that back then I met the criteria for SSDI. Now I have many more health issues including sjogrens but don’t think I qualify for SSDI as I have not worked since 1999.I hope all goes well with you both. Please let us know

I am very frustrated and glad I finally found a support group. This year it seems like all the symtoms I've found on-line, have gotten 100% worse. Esp the fatigue. I do have IBS, which is worse this year. Rashes, teeth problems, etc. etc.

I'm just looking for support and trying to find out how others have had all the symptoms.

terriba said:

Good luck to you both. I applied for SSDI back in 2000 but didn't qualify and just realized I was getting SSI for low income. I'm pretty sure that back then I met the criteria for SSDI. Now I have many more health issues including sjogrens but don't think I qualify for SSDI as I have not worked since 1999.I hope all goes well with you both. Please let us know