My fatigue has reached a new level and I am wondering if it might be something other then Sjogren's. I have had all kinds of blood work including thyroid, Vitamin D and B.
I feel like I am going to pass out if I don't lay down and I sleep most of the day away, does anyone else have this. This is beyond fatigue and more like complete exhaustion.
Any feedback will be greatly appreciated.
Epson
The same thing happens to me. Some days I think that if I don't sit down I will fall down. It is a kind of weakness that is hard to explain--just want to go to bed and sleep. I have often wondered if I have sleep apnea. So there are more of us out here that are experiencing the same as you. I did have low Vitamen D and I have thyroid problems also. When they checked my Vitamen D, mine was 11 and 30-100 is normal so I am taking a high dose ea week for 3 months. If you do find a solution for this please post.
Hi Epson :)
The last few months have been VERY stressful for you. Your body might just be telling you that you really need to rest up - and is not giving you the option. It's making you sleep.
I've had episodes like that - but not recently.
Take care - Scottie :)
Scottie,
That's what my wife said, but how long should it take to recover? I might have to change my post name to Rip Van Winkle. ::)
I don't know. I'm not medical - so its just a theory. My youngest son always used to sleep when he was stressed. When he went to school first they had to put the zed bed out for him every afternoon for the first week - or he'd sleep in a corner. Never have I seen a child take himself to bed so early on Christmas eve(s). He couldn't stand the excitement - so he slept.
I had several summer holidays, staying with hubby's relatives, when I slept a few days away. They all thought I was the laziest person alive but finally now understand why I did it. (Days before dx)
Hubby off work - 4 kids - he could look after them - so i crashed. That's without having the health issues you're going through.
Take care - Scottie :)
Whatever I had last week,flare or stress I don't know .I would become blindly exhausted throughout the day.If I didn't get to a sofa or bed I knew I would collapse where I was.It's a very weird and scary feeling isn't it?You have no choice but to rest and hope it goes away as quickly as it came on.My sympathies.
Ruby
Epson - I think Scottie is right. You have had too much to cope with recently. Your body could well be catching up now. Most of us cope when we have to, but when we take our foot of f the gas, the body takes the rest it needs.
Here's hoping you get some energy back soon.
Hugs
Kathyx
Hi, Epson. I must say, I don't feel like sleeping. I feel weak and like I just need to sit on the couch and rest a while. That usually helps. Hope you feel better soon..
Babs
Epson, did you have radiation with your recent cancer? I did two years ago with my cancer and I am still not back to anywhere near what I was. That's about the same time the sjogrens was diagnosed. I lay on the couch most days all day. I am not really sleeping, just laying there like a dufus with my eyes closed.
In your case (and mine) it might have something to do with having cancer. I know everyone is exhausted, but having cancer assault your body is something special and above normal wear and tear. lucy
I get tired often, busy life, etc.
But this weekend I experienced fatigue like nothing ever before. I was taking a short 5 minute walk on an errand. It was raining and windy, but I had the appropriate coat on, etc. However, I had an overwhelming feeling of such exhaustion, and I just wanted to lay down, right there, outside. I was totally exhausted. I could have cried. It was a good job my husband was with me. Just this overwhelming feeling.
Horrid stuff.
Epsom, of course you will still be reeling from all that you have endured over the past months..
Operations take so much out of ones self, never mind that you had to endure radiation too..
You need to pace yourself , eat well, rest plenty and try not to worry ..
You will get there .. Take care, Dolly
My chemo did not include radiation, so I don't think it is a factor, mine was mytomycin administered directly in to the bladder via the nether region for 6 dreadful weeks. I don't know if there are any ologist left that I haven't seen, just can't live like this, might as well stay in my P.Js all day.
I too have suffered from extreme fatique to the point of not being able to stand. Can only lay down and go to sleep! It's like someone came along and just totally zapped me! I know i have CFS also but this seems so severe at times! When it happens i will sleep about 20 hours out of the day.
I'm so sorry your having this problem but at least i know there's someone else out there going through the same thing!
Hi Epson,
Forgive me if I've missed it, but have you had a sleep test lately?
Patze
Hi Epson
Sorry to hear that you're having a hard time. It sounds as though you don't have much choice about sleeping because it's just going to happen whether you like it or not. I echo the others about what a dreadful few months you've endured, and about blood tests and sleep tests. Do you think you've been expecting too much of yourself recently?
I'm also a bit confused because it could be said you're sleeping the sleep of the righteous. Is your conscience really that clear?! This is not the Epson I've come to know and love ...
Thinking of you - Chickpea
Chickpea,
I'm also a bit confused because it could be said you're sleeping the sleep of the righteous. Is your conscience really that clear?!
[/quote]
Is my conscience clear? I'm not even sure what's real and what's not real any more.
Epson, First of all, have you reviewed your meds with your doc lately. Sometimes all of a sudden it seems like our meds can be too high a dose for us. I just read that our liver is 35% less efficient when we are older and that will affect how much medication builds up in our system.
I get those really tired times and will literally pass out in my recliner, but don't do it every day. I agree with the others that you had such a rough year with your multiple "ologists" and treatment plus your dad. I would imagine you are worn out. I wish I could lie down and sleep like that.
As far as how much sleep you need to recover----take how many days you needed to rest up when you were twenty and add about 20 years to it!!! :D :D Sorry, couldn't resist it. Your questioin reminded me of after my hysterectomy and ovaries being removed--I asked my gyne how many years I had to take the estrogen. He told me to figure out how old I would be when I died and subtract 5 years. :) We all need a laugh now and then. Take care my friend. Irish ;D
Epson, My Sjogren's is considered severe, yes I know where you are coming from. I've been curious too about common factors. Mine: Yes low Vit. D ,Low DHEA 28 (like insuline you must have for function), blood pressure drops, systolic below 90 down to 81, sun and U.V. exposure I'll drop in hours after even a half hour exposure (with blistering, mouth sores ,brain fog, and other nasties) So I play "Gremlins...Bright light, Bright light!" For the rest :25mg DHEA, Vit. D 500mg., Co-factor Q-10 (mitrochondria use it, the power producers in every cell), Siberian or American Ginseng two 400 to500 mg casules (these types can be used long term), a Fish, Flax, Borage Oil is easy to find (Vikings used to party with the Borage oil, pumps you up!). Also Schizandra for adreanal support, Gotu Kola and Ginko Biloba for brain function. Fenugreek for tears ,saliva, and intestinal secreations. I know it's alot, but I'm very drug sensitive and without these I'm a stupid limp rag laying in bed. One more (actually many) don't forget Bilbrerry for the eyes.
As I'm reading I must agree with everyone that what you have been going through has got to
take a lot out of ya. With me I noticed that at least three to four days after a very stressful
situation was over is when the flares began. Like during the stress time your body uses up
all the Adrenalin (don't know how to spell) just to make it through and your battery just goes
down till time to do a reset...anyway...thats how Ive always thought of it. Hope you are doing
better since i am late with my thoughts but that goes into the brain fog subject line.
JJ
Thank's, for all the feed back, maybe there is a pattern here ???
Ooop's Epsom, sorry I got it wrong about the radiation ( brain fog)
Maybe this is a delayed flare-up from all the treatment and stress of what you went through ... I know that when I go through any of lifes problems that keep creeping up, it's usually after the events that I generally get a flare -up of my symptoms and feel dreadful...
I certainly hope that things are calming down for you by now, and hope the docs sort you out soon..
Let us know how you get along,,
Hi Epson,
The fatigue has been a huge frustration for me, but the real challenge has been letting go of my NE work ethic guilt for needing rest. It's still frustrating but I'm learning not to beat myself up for needing the rest when I do and it seems I recover faster.
My cat can get jealous on those days when I outsleep him!
Still the voices of my workethic upbringing still ring loud and clear---- but recovering is work!
Perry
Epson,
I'm sorry about all you've had to deal with. Fatigue has been a big issue for me. I understand about the feelings of weakness too. If it weren't for the PA who treats my fibro (along with the rheumatologist) prescribing Provigil I don't know if I could function.
Terri
My fatigue and energy level can be so bad that I think my heart will stop beating! I go through about 3 days of 12 - 14 hours of sleep then I feel better and can get away with about 6-8 hours. I found if I don't get any rest - I go into a flare with lots of pain and I'm unable to get out of bed....
I know that some people don't have the pain and fatigue that I have - I just know it puts a cramp in my work/social life...
I was told by my docs to exercise more and my energy levels will go up a little....haven't seen that as yet. I have started taking freeze dried acai and it seems to be helping a bit.
Hang in there...you are not alone.
Denise :D