pain and sleepliness

[juliechurch]

Am I alone when it comes to staying sleeping all the time. I have tried so hard to find a way not to be sleepy. I will have a great day no pain waked wake can do anything. then the next week or so I am down for the count in sleeping and being in so Pain I just want to ball up and cry. My husband and kids Don't believe me. they think I am being lazy and that is not the case. If I tell them my husband howI am feeling he looks at me like I am joking and I am not. I feel as if my bones are being snapped in haft my joins feel as if there locked or someone is taken a pair of vise grips and closing it on them. can anyone help me plz. I was told a year ago I had SJS but been feeling this ways for about 8 years no Doctor listen until they saw me go far normal size feet to Balloon size in 10 min in the office.     

[Navigator]

You don?t mention if you are taking anything for the SJS.  Plaquenil can reduce the pain of SJS but can take several months to kick in.   

[juliechurch]

yea been on it for almost a year now.  Plaquenil helps some for the pain but is has made my eyes worst.

[Judie P]

Hi there.  This is just a suggestion that I learned last week.  We look good on the outside, as we all know.  My husband went with me to a Sjogren's Support Group last Sunday.  It was nothing like what we expected.  However, my husband listened to 12 women who have had some rather heavy symptoms from SJS and what tests and drugs they have endured.  He suddenly understood what I am going through and what might happen in the future to me.

Is there anyway that you can take your family, at least your husband, to a support group or a conference on SJS?  I put my husband through the wringer with my anxiety and depression before I was diagnosed last year.  I believe I have had SJS at least 6 years now.  My anxiety caused my symptoms to flare up considerably and the pain was unbearable.  He would just remind me that the original doctors told me it was all chronic anxiety.

Now my husband sees differently.  Though my anxiety is in control now, it really helps me that my husband understands.  I feel like I can get through anything now.  Hugs.

[warmwaters]

You are not alone.  One of the very frustrating things about this disease is that something you could do yesterday may be overwhelmingly hard today.  And you have NO idea whether you'll be able to do it next Thursday.  From the outside, we look very inconsistent - and people may think we're making it up. 

I've been keeping a pain log for an upcoming doctor's visit, and even though I've been dealing with this for 6 years, I was surprised at how much the pain changes each day. Monday my feet felt like they were on fire, and I could feel every joint in them. By Wednesday that was gone, but my upper arm muscles were aching, and my limbs felt limp, like I moved heavy boxes. Etc.

I like the idea of a support group, or even having your husband read this site.  Or look at the blog "Reasonably Well" by another Sjogren's patient. You may also want to try to get a different doctor if your doctors don't believe you.

[susanep]

I am so sorry you have to feel so alone with this. We here do know what you are talking about. I will never forget my last year at school teaching. I had missed a lot, and in the principals office I was asking for a paper to fill out for medical leave if I needed it, and my boss over my area was there too for the meeting, and she said I haven't even heard of what you are saying.

She was talking about when I said I had sjogren's. She acted like I made this word up, because she had never heard of it. From there she said in front of me and the principal, look Susan we all get sick, but still come in to work. She was talking about normal colds, etc.

I knew it was pointless to say anything to that, so all I said was I want the paper I came in to get, and I will also be letting you both know if there can be any accommodations for me according to the adults with disability act. They handed me a paper, and got quiet as I walked out. I am sure they were talking about me after that, because I had attended enough private meetings on kids to have seen them do that about parents they didn't like.

The lucked out with me though, because when I went back the next year, I worked for about 11 days, and knew that was it. I was too sick and in pain to go in anymore. Suddenly how I was going to eat didn't matter so much, because I just wanted to go home and go to bed and rest.

We did get help to get through everything though, until my social security disability came through. I got it in 5 months.

I retired early in 2010, and can't imagine going in doing what I once did. My particular area in teaching was "Special Education."

Yes, have others read some of the stories of people who go through what you are.

Hugs,
susanep

[juliechurch]

IF there was a group meeting with in 150 miles from my house (but there is not) he would not go, my step kids have to have someone to watch them and he would not let that happen. Last year i was put in the hospital for 4 days. His ex-wife said he can bring her the kids and be with me. he stayed one night with me the night i was put in and by 9am he was gone the next morning. after that i seen him once a day for 30min and talked to him twice for just a min. He tells me he cares but how he acts says other wise. i just wished that he and other people around me would understand. i have a hand full of people that i can go to my mom and her first cousin both has Lupus two of my friends fibro.   

[SjoDry]

JulieC,

So sorry that you are feeling so down & overwhelmed..we have all been there. I totally understand and share the serious fatigue that you have. I feel like that every day.

You have been given some excellent suggestions. I run a support group where I live and it is very helpful to connect with others who are sharing your journey. Our group has been in existence for 3 years & just continues to grow rapidly. This confirms to me, how many people seek out support groups for education and support. This is especially true when dealing with  Sjogren's. Please check the Sjogren's Syndrome Foundation site to see if there is a support group near you.

I wrote a letter that might be helpful for you to share with others. It is called "An Open Letter For Those Without Sjogren's ". You can find it on my blog: SjodryandParched. I have been contacted by a number of people who shared it with some unsupportive family members and they felt that it helped their situation.

I also made a couple of very amateur videos about living with Sjogren's (which are also on my blog). One of those videos is called" A day in the life of SjoDry ". It's just a very simple video with a message. I was contacted by a woman who was thanking me for the video. The reason she was thanking me was because her husband thought she was lying about her illness.

She said that she had come across the video and watched it. She had to leave the room and left the video on the screen. Her husband went over to it and watched it. When she returned, she told me that he said, "Omg, this could be you! This sounds exactly like your symptoms. She told me she cried because he now believed her and was starting to be supportive.

So surround yourself with those people who do understand, in a support group, on this forum and maybe even a counselor. This is a journey that none of chose or want to be on, but having people in your life who "get it" helps.

Hope you are on the upswing soon.
Take care.
SjoDry

[juliechurch]

I have looked and Checked on groups we don't any around here. I have though of having a group meeting for the people like us but let all people with autoimmune disease. I will try to get him to read and watch your Video SjoDry. Hey quick question Is ur hair and skin so dry that not even deep moisturizer or oil works.

[SjoDry]

Julie,

Yes. Always very dry hair and skin. I have finally found a skin care line that is helping me. In fact the creator is a friend of mine who has developed specific products for Sjogren's and very dry skin. My friend is in talks with the head of the Sjogren's Foundation to present her line at the SSF patient conference.

If you would like more information, private message me.
SjoDry

[Joe S.]

Julie,

First, have your read, "Spoon Theory"? This web post allows you to understand good days and bad days. Once you know how to manage your spoons. Have your husband read it so he understands.

When pain overwhelms me, I sleep. I can meditate to reduce the pain with a very simple meditation. I drink carrot juice to (6-8 oz per day) to help my body create endorphins. Endorphins are your bodies own pain killers and they are 1000 times more potent than morphine.

Meditation:
Find a comfortable position, close your eyes, and with your eyes closed, look to the top of your head.
As you breathe in think, "I am", as you breath out think, "Calm". repeat.
Try to keep it up for 15 minutes. Practice when you have little or no pain so you can use it when your pain is intense.

joe

[SunshineDaydream]

Sorry to hear you aren't getting the support you want from your family. Many people don't understand what they can't see and don't take the time to learn about illnesses they haven't heard about.

I started taking curcumin last month based on recommendations from board members here, and it has really helped alleviate achy joint pain. You might want to look into taking it if you aren't doing so already.

[juliechurch]

 Joe S yes i have the funny thing about it is my friend just sent me that link today.

SunshineDaydream Ty and no i have not heard about it but will look in to it.

[quietdynamics]

juliechurch.. welcome to the forum.

The fatigue, pain and symptoms of sjogrens can feel like being blindfolded riding on a roller coaster, one we do not want to be on and seems we can not get off, nor see, predict the twists, turns, hills and falls.
It is really difficult for others to understand this condition.
Really in the beginning it was difficult for me to believe the depth of effects on life.. after all initial I was told "Sjogens; Sicca, dry mouth and eyes" So I believed taking plaquinel/pilocarpine.. soon I would be back to rockin' n rollin' with life.
But, I felt as though I had the aches, pains of a really bad flu for days, turning into months, turning into years. Including the bone crushing 'vise-like' bone crushing pain in areas. And knock me over with a feather fatigue, mental dysfunction .. like a walking quasi coma existence.

For some people visuals are easier than words.
Here is a Sjogrens Chart:


And list of support group by state:
https://www.sjogrens.org/home/get-connected/support-groups/us-support-groups

One forum member here, Carolina, goes to Duke, and seems to have to gotten help.