Complete Exhaustion

[DesignerS]

Hi everyone,

Usually my fatigue comes in spurts.  On my good days, I can get some things done, and then I rest for a few.  But this time it is relentless.  I cannot grocery shop, cook, clean, laundry, nothing.  I am beginning to panic a little because it feels like it will never get better.  When spring comes some of my symptoms lighten up, like my PA and OA, not this spring.  I am hurting more now than I did throughout the winter.  Starting to feel a little worthless here    Anyone else going through a really exhausted spell?

Designer

[Scottietottie]

Hi Designer 

Hang in there!  It will almost certainly pass.

I had a really bad spell of fatigue when this all started and I had 4 young kids at the time. I remember it being awful. I got through it by just doing what I absolutely had to do - and no more. An untidy house doesn't really matter in the sceme of things. I gave up ironing round about then too. I had to sit down for a break halfway through hoovering a room and goodness knows how many times when trying to sort stuff out for the kids to eat. They all learnt to make sandwiches young!
Write a list of things you really need to do. (It's amazing what you don't really need!) Work through the list as and when you can and score things off as you go.
Can you shop on line? I've done grocery shopping that way before.

Also check it through with your doctor. SjS can cause severe fatigue but so can other things and SjS doesn't stop other stuff happening. Check for iron, ferritin, B12, thyroid.

I hope this is a flare which passes in the not distant future. You're not worthless - you're ill!

Keep us posted - take care - Scottie 

[JannaLee]

Yes, honey!

As a matter of fact, I cried my eyes out last night because I have been a year on plaquenil and still in bed yesterday with terrible joint pain and fatigue.  I am not improved enough to live normally.

I guess, I was hoping but really expecting to bring my symptoms under control and then have some months/years of productive vitality interspersed with short periods of down time.  This has not happened.  

Was my 'hope' actually a bit of denial?...because suddenly realizing I've been this sick for a complete year has hit HARD!  I have lost a WHOLE YEAR and like you, it feels like I will never get better.  IS THIS AS GOOD AS IT'S GOING TO GET??

I've decided the 'brave face' approach is both exhausting and dishonest.  My husband was a bit hostile yesterday because he did both cooking and dishes while I laid on bed....AND I DON'T BLAME HIM!!!  My friends are wondering too, where is Janna?... one day will they will stop wondering?

I hope you will experience a rally, Designer!  I pray you will wake up feeling some of the old energy and zest!  I pray this for all of us!

Janna

PS  I want to change the official medical definition of Sjogren's Syndrome: "...slowly progressive disease..."  My disease progression this year has not been slow.  It should read "...progressive disease..."

[Dolly Dimples]

  Designer & Janna,   Soso sorry you are both in this state, wish I had a magic wand that would make us all human again!

  D, please heed Scotties advice, she is so right that there may well be other things going on, and don't feel guilty ,
Let the kids help,  it makes them more independant, of  which only good can come of...   Can you imagine if you were not here at all, they would all manage somehow!   Why is it we women want to be super- woman all the time?

    Janna, sorry your treatment is going so slowly, go ahead and cry, we all do,  but come morning we're all still up fighting it again!
     
As for hubby , let him do it, or tell him to do without,   not your fault that your ill!

   
Your saying "is this as good as it gets"  I have lost count of the many times I ask that.   I know that I have lost a lot of faith in anything as this thing has taken over...   Yet I do have lot's of  good times , and I count myself lucky when I read of some one such as yourselves being so low..  sending you both my comfort and  best wishes for a  good  spell... Hugs, Dolly x

[wednesday mc haggis]

yup!

  i know fatigue has improved with me alot, since i was sleeping about 13 hours a day at one point and felt like i was wearing cement boots rest of time, i didnt lie down i staggered about that exhausted i had no option but to sleep.

I know that its better, mostly coz ive turned insommiac right now, but i just seem to be always drained.

janna i so hear you about that post, all my friends seem to be  where are you ?? sure i can laugh and joke, but i just cant seem to find the enrgy to do the things i used to, i was such a livewire, now im the party bore methinks.

  i dont know if planequil will sort me out or not, and i dont think i ll ever get used to the fatigue, i keep saying i can cope with the pain of feeling like i was hit by a truck, but the exhausted feeling , i dont think i ll ever accept that .

   my friend called today i was not even taking the conversation in, i was that tired, ppl must think im being rude, i know a few friends have side stepped me , but thats up to them, its like feeling your the undead, i swear a vampire drains us of blood as we sleep, for somedays it feels like im running 4 pints of blood short, i guess in a way it was slow progression, certain sicca symptoms 30 years, but when it went systemic, boy did it, SJS is a right nasty illlness for some, and for me the fatigue is the nastiest bit.

  i used to get up witht he kids, get them to school, clean the whole house, go shopping, make dinner, relax for a few hours, go do an 11 hour night  shift in  a heavy ward, come home get 5 hours sleep, get kids from school, make dinner then rest, and go do another 11 hour shift, now i make the bed, make breakfast and want to go back to bed and not get back up, someday i want to spit in SJS`s eye and shout obsenities 

T x

   

[irish]

Janna, I am so sorry that you are having such a time lately. I have to tell you that if I was able to I would be taking the hard core meds such as methotrexate, imuran, etc. I think if you give the plaquenil the college try and it isn't passing muster it is time to go to the "big guns".

Sjogrens is different in all of us and the truth of it is that our immune system is trying to kill us off. We need a med that will slow down that immune system. If it wasn't for the darn low t-cells I could take the big gun meds. Have your mentioned this to your doc? These docs just need to learn that sjogrens is a disease that really sets your whole world upside down. It doesn't kill us off very often, but it does make us "old" before our time because we lose the ability to lead a very normal life. The social life really goes down the drain.

I really encourage any of you who are not responding well to present therapy to talk to your doc and if he/she isn't willing to work with your then find another doc. Good luck Janna. Also, spouses all need to be kind and calm cause they never know when their number is up.  We call our place ____________(our last name) board and care cause it seems like it is one or the other that is ailing all the time. If we get a period of time when we both feel some better we get scared cause we know something is lurking on the sidelines waiting to waylay us. Irish

[Billydude]

My fatique level comes and goes.  When I'm feeling good I overdo it like yesterday.  So,  today I slept till 11am then went and took a nap from 1pm to 3pm and still wanted to sleep.   I had to force myself to stay up and awake.

[KYMOM]

I am new to this web but have found help and advice, laughed, cried, and just enjoyed the feeling of belonging.  I wanted to mention something that I have found to be of help.  A company in Florida has developed a brand of supplements that are DNA based.  They take a cheek swab and formulate a supplement that is personal based on your system.  They check for twelve markers in your DNA. 
I started the supplements in January.  In the fall and winter I was experiencing worsening depression symptoms.  I felt stressed all of the time and would tear up throughout the day for no apparent reason.  I have not had this problem since the supplements.  It makes a kind of sense that if your body chemistry is out of whack that it will manifest itself in physical and emotional symptoms.
I also believe that the supplement are the reason that I am able to walk again for exercise.  I have not had a much of a problem with the pain in the ball of my foot.
Personal stories that have come from people that have taken the supplements have been very positive.  If anyone is interested in information I can give you a web address and the name of the company and you can do your own research.  Roxanne

[Billydude]

Roxanne,  why don't you just post the web address here.   I'm curious to check it out.   I have to say I'm always slightly suspicious but I wouldn't mind investigating it to see if its something I'd like.
Steve

[KYMOM]

The company is GeneWize.  Web www.genewize.com  Please check out the info yourself.  This is also a networking marketing program.  I will not endorse this because I do not feel that this type of forum should be used this way.  I am not a networker I am a customer.  The site should have a list of the potential ingredients that are used for the supplements.  They are DNA based so the ingredients are different for each person.  The DNA report that is generated is fascinating.  I have a friend in her 60s that is without fibro pain for the first time in decades.  Please do not think this is a sell or and endorsement.  This is the only time I will mention this.  Roxanne

[Billydude]

Thanks Roxanne.  Don't worry,  noone is thinking that you are trying to sell a product.  These are all good things for us to know about and exchange ideas about.  Its all good info.
Steve