Just got home from a lunch at a neighbors house. there were three of us there and after about 90 minutes of lunch and chit chat I just hit the wall with fatigue. ran out of spoons I guess.... anyway I told them it was time for me to head home. When they asked why I said I was tired and was going to take a nap. Well you would of thought I told them I was an alien! : )
The looked at me and said, "Nap?!" They were both ladies in their early 60's but they started saying how they could NEVER nap during the day, blah, blah, blah. I realized yet again that so many people have never experienced the SJS, lupus, fibro type of profound fatigue.
It's very isolating to know that when I leave the house my stamina is limited and when my energy is gone I can't even 'fake' it. I really think that people don't understand but that they also don't want to hear about it.
Sorry to vent, but I didn't know who else to talk to about it. My DH is wonderful listening to me but sometimes I don't want to burden him with this silliness.
thoughts??
Rudy,
So sad, but so true. You were dxed in '09 and I was dxed in '13. By about 2010, I had to stop interacting with "most" of my (in some cases *lifetime*) friends. I had a few who wanted to be with me, would go to eat at restaurants where I was able to eat, and close to my home, etc, etc. If I ever joined an evening group for something, I would exit early most times. I was still working part time so could usually say I had work to do. I would hear those chides as you describe. You probably began to experience this before your diagnoses too. With Lupus, I mean with most people knowing Lupus, you would think........well..........that's just it: they don't. What upset me the most is I knew they didn't care. No one wants to "hear" about any condition, treatment, weakness, medicine---and I never talked about anything but to say I finally learned why I had suffered such strange (and consistent, and a plethora of) conditions---which as you know--stop you in your tracks.
I had to leave that location in late 2014---to be closer to my children. So thankful I did. When I go "home", I'm amazed at all the attention I get--from MOST of my friends. Many call, and some make the trip from Houston to Dallas periodically. One friend travels with me (by air) and will come to Dallas so we can fly together. She's a REAL friend.
I guess that's what I could say: among those people you have to have one or two who are not judgmental, etc-just stick with them. Read more, or order books by audible. I am a Netflix and Amazon Prime junkie. I quit work after dx. I was closing in on 72. I didn't go early into that good night, but I surely did learn to go slowly into that good night. Shoulda said afternoon to keep with the reference since I haven't died yet!
About 3 weeks ago I had some dental work and believe (I don't KNOW) the work caused a flare---or at least escalated it. I hadn't taken LONG naps (four hours) since before dx and not working. When starting the 3rd full week, I started (on my own) a 4mg Medrol pack. After the first , the dose, next a.m., I felt like I was coming off a bad trip. I was relieved to know it was a flare. You won't believe this, but this was my first WELL DEFINED and easily recognized to be "FLARE". I let myself flare for weeks before giving in. Because of two of my inflammatory conditions, I keep emergency prednisone/corticosteroid bursts. The night I decided to start one, I counted back and hadn't had a pack since June of 2016. I decided I had suffered long enough. It WOULD have been nice to have someone to commiserate with, but we lose those people, don't we?
Tonight is open Sjogren's World Forum night on chat. The girls are fun...they aren't your friends...but they make you feel connected to people. I love my local SjS group too. My friends in that group are younger...much younger....and we go out...we talk, text and enjoy one another. They suffer the same problem you describe. It's harder for a 50 year old to find "older, ailing" friends with whom to visit. Anyway...sign in..follow instructions at top of the SjS entry page.
Have a good and rested evening. btw: when "we" take a 2 to 4 hour nap and then go to sleep for 7 to 8 hours...that isn't a "nap"....that is fatigue!!
Best to you,
Courtenay
This is my second post on this subject, but I had some new thoughts.
I have had SS since 1992. My first symptoms were lower limb pain, and severe fatigue. The latter has caused me a lot of disability and sadness.
I still have it today. I was fired from four jobs because of my decreasing performance, and retired at 57 years. And you're dead right no-one understanding.
Initially the MD's were clueless and I went undiagnosed for over 10 years. A smart Medical student diagnosed me! After enduring all this, a kind psychiatrist prescribed me
Phentermine. This changed my life for years. But it had many side-effects. So I started Provigil in 2009, & this was a life saver. It has a few side effects e.g. feeling weird and
abdominal symptoms but it's OK. Adderall is much better, and is keeping me going. On top of this is the Sjogrens Fog, which was the real cause of me getting fired. Confusion, forgetfulness,
impaired thinking ...... you know about this. What is very distressing about taking these drugs, are the restrictions on their use. It is an uphill struggle to get a supply (Thanks to our lovely Government).
Best of luck. I truly understand.
Rudy so sorry you had this experience. Too few can understand and a very limited number of people have the patience to support a friend or family member whose illness will never be cured. I have fewer friends these days, but the ones that I do have are great.
I started with autoimmune issues (1964 not diagnosed until 2003) and suffered from such fatigue for all those years. The good thing is the fatigue was not all the time but it was unpredictable and I learned early on that I had to take naps and plan my work. I bet all of you can relate to planning work and chores for the next day and aways knowing that most likely the plans would change due to fatigue. I have always had to adapt my work load from day to day and sometimes from hour to hour. No one will understand that except another person with autoimmune or some other chronic disease that causes this fatigue.
I have never been able to stop to shop or to eat after work due to my fatigue. By the time I made the drive home and filled gas tank and got milk I would almost fall into the house I was so done in. I always had to have food planned ahead or used my pressure cooker in order to get a meal on the table. It can be a heck of a way to live but I was always thankful for a warm home and a bed to sleep in. We can't make others understand our illness, but I can guarantee you this, most people will find themselves facing illness and heartache before their life is over.
Those of us with chronic disease learn early on that we need to adapt and keep on plugging along. I bet we are a lot more understanding of others from our experiences also. Fighting against our disease will just make us bitter but acceptance will help our lives run more smoothly. Tell people what you must and go on your way. If people make fun of you or give you a hard time they may not be as good a friend as you thought. Good luck. Irish
Oh, I do understand, and not much to add from what the others have said. Unless they have had what we do they just can't understand.
Hugs,
susanep :)
Hi rudy,
No 'civilian' can understand our fatigue, because our fatigue isn't the fatigue of normal tiredness.
Our fatigue is due to the attacks on our body by our Immune Disorder(s) and the inflammation that goes with it.
It is often described as 'profound fatigue', but even that doesn't really cover what it's like.
When I have the fatigue of an Immune Flare, I cannot move, I cannot sleep, I must sit in a quiet room, with my eyes half open. I cannot read, I cannot watch television.
I also have total body pain, and because I have severe osteoarthritis every affects joint is throbbing.
Depression falls like a dark cloud, adding a sense that this is all my life will ever be: pain and profound fatigue.
And for me, I also have total body itching.
So I take: Benadryl for the itching, prednisone (taper) to stop the flare, and I used to take antidepressants until I can no longer tolerate the side effects that developed.
NOW I don't get flare, or the fatigue, or the depression and pain, because I have a low dose of Medrol (methylprednisolone) 2mg every other day.
I take the Medrol to tolerate the reaction of my Immune System to the IVIG that keeps me infection free.
And the Medrol also does away with the flares, so I am doubly lucky.
2mg of Medrol every other day is a pretty safe level of steroid. And at 76 I'm not so worried that I might have long term damage from the Medrol.
Our lives are often a trade off, and we make choices every day to achieve some level of comfort.
No one will ever understand what we deal with. People don't like chronic conditions, conditions they can't understand, people want you to get well NOW.
So we come here for what we need, and we get it. We get so much stronger and we are not alone.
Hugs, Elaine
Yep, others do not understand and it makes us feel isolated. I just don't talk about it with others anymore. I am retiring a little early and everybody keeps saying you are too young to retire ( I am 63) and I am sick of it. I don't really care. When I want to talk bout my disease, I come here. People should try to be more understanding and not say things like " I can't nap during the day". It's insensitive. But, it's OK to nap. It's what our body needs. I just don't think life is how much you can jam into an hour or a day. I think it is what we enjoy as individuals. If it feels good to us, we should do it and not feel guilty. It's just the way it is.
I agree, nobody but us understands our fatigue, brain fog. You know what , I just don't care anymore.I retire early, don't socialice much. I've learned a little meditation, and it helps whem I lie down to take a nap. Don't explain anything.... I'ts a waste of energy.Discover your affinity for your spirituality, it helps not to feel alone, or isolated in our condition.
such wise words from you all....thank you so much for the comments.
We so understand. I agree with trejonina. I'm done explaining, and work on finding peace in my life, for me it is thru feeling a part of nature and having faith.
I was going to post a similar item.
These websites are helpful as others don't usually understand.
Some of my friends don't understand why I don't work. Why, if I'm so sick, Ican look fine...even good (I have a great hair stylist and enjoy make up). It's as if I can't fix myself up if I have health problems. I do not advertise when I feel like crud. I stay inside, in bed and to myself. I'm sick and tired of cynnical, mean spirited, jealous people who don't have an ounce of empathy in their bodies. I'm really feeling upset about this at this moment. UGH! >:(
Nope, no one gets it.
It's all too easy for them to think we're not motivated enough to do a little hard work (it does the trick for everyone else, don't you know) and then even expect sympathy for our laziness-induced fatigue.
We don't have anything that a little "push, push, push..." won't cure, do we.
www.youtube.com/watch?v=TY6ZCHw3oA8
I had a laugh reading this thread, I thought hold on did I write this? ☺ agree, agree, agree.
Yes the looks you get if you tell someone you had a nap of 2 to 4 hours!!
When I get home from work most days I NAP for about 2 hours, have dinner etc then back to bed by 9 pm and sleep for up to 10 hours..... thats if I manage to get ro sleep at night with aching body, itchiness, tingling etc etc... we all know the drill. Nearly 2 am and I haven't slept tonight yet, start work at 8 am.
Keep smiling,
Jo ☺💤
Do you take B vitamins? I found out my body doesn't properly process B vitamins and need to take the active form of folate and B 12. I've started taking a vitamin with the active forms and it is helping me a lot. It has also improved my depression/anxiety and insomnia!!! Also, I have to take nexium and can't absorb B 12 that well and that has caused a low b 12 level. Not too many docs will check for vitamin levels when patients complain of fatigue. It could be something completely different for you and your fatigue.
I 've said this before but I highly recommend Functional Medicine docs. Don't mean to sound like a broken record but it's an area of medicine that has helped a lot of people with AI disease. I am seronegative.
It is hard though. I still don't always have the energy of friends who are older than me. It makes me feel so bad but it is what it is. It's a journey!!
Have totally been there. Have been lucky enough to have couple of people in my life who had also had chronic illness, and who understand I can't just "buck up", or "hang in there" when the energy drains out of me. They've become closer friends because of this.
It goes on and on - I want to go to the matinee movie, not the 10PM one. I'd love to join you for music, but that starts at 9 PM. I have no particular way I could make it to 9 PM - by that point my pain levels are pretty high, and I be glad if I could make a whole sentence.
If you think it's worth your time, you can try some gentle education. Depends on whether you'd think they'd listen. I've sometimes explained it as - my health problems can leave me unexpectedly exhausted. I'm not always sure when. So if I have to leave early, I'm really sorry, but once I get exhausted, I'm like a 2 year old who just need a nap (fill in your description!) But I'm glad to have some time with you, and hope my body will hang in there with me.
This is my first day here, I came looking for information about treatments for Sjogren's fatigue and found Rudy's post! Thank you Rudy and all who've posted!
I have RA, PsA, psoriasis; my test results showed something once and I asked my rheumatologist if I shouldn't be tested for Sjogren's? He said no, no sense in it because there was nothing he could do for me anyway and I had it, didn't need to prove it. So for the past few years I've thought I probably had Sjogren's but I only knew the dry eye (I've had that forever) was probably because of that. At the same time, I've been going through periods of extreme fatigue and the doctors didn't know why. I've had mornings when my husband couldn't wake me up! I was diagnosed with hemochromatosis and treated for that and then the doctor who diagnosed it backed away from it, so now I don't have it (treatment seemed to help at first, then I got worse).
In March, my mouth went completely dry. It was about the worst I've felt, adding that to the usual pain and fatigue. And I was at eye doctor appointments and just so miserable. Later I found a huge abscess in my mouth and realized I had thrush, too. I finally started reading about Sjogren's and found out about the fatigue. I asked my rheumatologist if there wasn't anything that would help and he brought up Adderall. I was afraid of that. He gave me a prescription for something for the dry mouth, it made me incredibly sick. So I asked him for the Adderall and he told me to ask my primary care provider to prescribe it. I'm not hopeful.
He gave me a pred taper. The first two days it felt like it was helping but pred gives me insomnia so I didn't sleep at all. I was so sleep-deficient, I think I went into another flare before I got out of the first one! And I still have the thrush, I think it's gone down my throat, sometimes I lose my voice.
I've heard of Provigil/Nuvigil and Adderall. Is there anything else? I'm not living, I'm just too tired to live, there must be something that works.