Do you get sudden tired spells?

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cured4real?
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   Posted 9/19/2011 9:50 PM (GMT -6)   
I have autoimmune hep and sjogrens and diabetes and thyroid problems and take hctz for hypertension I assume and sometimes I get these tired spells where I'm suddenly just so tired/weak feeling I have to sit down and rest, like all the energy was suddenly sucked out of me.
 
I don't sleep, its not sleepiness, its fatigue and weakness, like I'm gonna almost pass out but not that bad.  I thought it was my sugar but my sugar is fine during these bouts as is my blood pressure, my son is testing these for me when it happens.  If I forget to take my urso it happens more and taking the urso seems to make it better once it kicks in.
 
They thought I may have had adrenal problems in the past due to vitiligo and hyperpigmentation I have and have been dxed with polyglandular dysfunction.  I don't know what it is but it happens since my ama came out positive, in fact, that's the complaint that my rheumatologist really listened to, along with my mom's history.
 
I just wondered if this is the liver sort of hiccuping a little, you know, sort of just not working so well briefly.  I would think my bp would be up.  I do get more acid reflux during these times and other gi problems.  Its a weird feeling, almost like breathing fumes a little, it is really brief and always goes away.  It may be my copd, it doesn't happen much when I use my nebulizer.  I don't know why the urso would make it better though.  It happens when the urso wears off.
 
Do you get tired like this?  Does it get worse?
 
 
 
 

DGinSD
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Date Joined Apr 2007
Total Posts : 818
   Posted 9/19/2011 11:31 PM (GMT -6)   
Hey Marji!
 
I kinda feel that way sometimes but I don't know if it's just that I don't sleep enough or I'm too darned busy!  It doesn't seem to strike me the way you describe though.  It's usually when I'm already stopped and it sinks in.  So maybe yours is more related to an oxygen issue.  Maybe next time you're at the docs (as I'm sure you are a regular there) have them do an O2 sat (oxygen saturation)...it's quick, just that little clamp on the finger...pulse oximeter.  I don't have PBC just take the Urso because of side effect avoidance so maybe it does have something to do with the PBC/Urso but I haven't noticed anything with my Urso.
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 9/20/2011 9:10 AM (GMT -6)   
I feel that way too. Tired because of erratic sleeping patterns. I have to get up several times in the night to use the men's room and lately the cramping sets in and have to get up and walk it off and hydrate. I like your reply DGinSD about the oxygen issue. I do have very little Ascities in my abdomen, legs, but my doc said there is some fluid in my plueral space under my right lung. I never thought of oxygen depletion causing my lethargic spells lately. Also, with liver disease sometimes it can be my sodium level is low and potassium, too. I think mine seesaws from day to day and I just had to go to the ER for this reason in late August. Curedforreal you might want to get your blood levels checked. I do not know if that is the reason for tiredness. Bloodwork might show something that is causing the fatigue  Sometimes it is just my liver disease Hep C causing the fatigue and there is nothing I can do about it. I try to take advantage on the good days and the tired days take it easy and rest.

cured4real?
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Date Joined Dec 2005
Total Posts : 1942
   Posted 9/20/2011 3:43 PM (GMT -6)   
thanks dany and boston mike--
Yeah I have the electrolyte imbalance problem because for some reason I need a thiazide diuretic for my fluid retention. My liver doc thinks my kidneys may go before my liver. Wonderful. I am supposed to take potassium and do most of the time as scheduled, just forget sometimes. it may be just as well because i've had it too high and too low. its mostly too low, but I think if I take potassiium all the time it eventually kind of backs up.
or something.
I think sometimes when the liver becomes irrated, like when the urso wears off, I either am getting a histamine type asthma response or the liver is simply pressing against my lungs, making the copd worse. My dad has a similar problem to me with his liver, not as bad at all, but he has alot of lung problems and they said it was due to gastric reflux, again probably from his severe steatohepatitis that has gone on to some mild fibrosis.

I've got a pulmonology test coming up next month. I need to ask for a blood gas again, I keep forgetting. Maybe they will finally give me some oxygen. I am writing this all down now.

Maybe it is just the way things are now. Oh well. It's an excuse to rest some! I hope you both are doing okay.
Love, Marji


Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes

cured4real?
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Date Joined Dec 2005
Total Posts : 1942
   Posted 9/20/2011 3:51 PM (GMT -6)   
bostonmike, i have something called a retroaortic left renal vein, a result of longterm illness. Mayo was the only place to note it as I go through liver transplant for my hepatology.
It can cause something called nutcracker syndrome and pain. it is better for me when I change positions to one where my back is straight and my knees up. my left side is a new favorite. I don't know if this kind of thing might help. I was up and down all night. I had angioecstasia on my bladder floor. cutting back on artificial sweeteners and changing my diet to an IC diet helped. urologist said maybe the angioecstasia was related to liver problems, he didn't know. I suppose its different though for men. I hope you feel better anyway!
Love, Marji


Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/20/2011 4:56 PM (GMT -6)   
Marji, which Mayo are you seen at?

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 9/20/2011 6:43 PM (GMT -6)   
I go to Mayo Jacksonville FL. I am not a transplant patient though but gi/hepatology at this point.
Love, Marji


Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 9/22/2011 1:02 AM (GMT -6)   
I think fatigue is the bane of anyone with any AI disease...(I have PSC along with crohn's and AS) where every cell of the body feel exhausted and tired. I'm dealing with that HARD right now, and so yeah, sick of being both sick and tired...

about your question about getting worse? Hmmm, that's hard to say...but I think it DOES get better...

michael kelly
Regular Member


Date Joined Feb 2011
Total Posts : 488
   Posted 9/22/2011 3:33 AM (GMT -6)   
Hi Marji,
Whilst I'm clueless as to your problems ,I do know a little about fatigue. I suffer from ESLD due to alcohol and it can be dibilitating . I would sleep for an hour or so when fatigued,however I've recently developed respiratory problems ,got really weak and tired from that medication but couldn't sleep. So the specialist changed my meds on Monday and gave me Spariva capsules and inhaler. I also got from my hep doc a type of pill .It's bigger than the normal with a camera in it,I swallow it on Monday morning and wear a belt they put on me . As it travels through my system it takes thousands of pictures before it comes out . At 4.30 that afternoon he gives me the results. Gee I hope you get better very soon .Wishing you all the very best .
Michael
"Even blind chooks get some corn sometimes"

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 9/22/2011 7:44 AM (GMT -6)   
Michael my husband did the camera capsule test also but the recording did not work right or test was inconclusive..so they wanted him to do it again but our insurance company would not pay for the same test a month later so doctor said we wouldn't do it again ..hope your results can be read ..for I know as my husband said that thing was no fun swallowing .......
Blonde504 aka Elle

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/22/2011 4:02 PM (GMT -6)   

Marji, I go to Mayo Jax, too.  Maybe we can meet up sometime at Mayo if we have appts. on the same day.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

blonde504
Regular Member


Date Joined Aug 2011
Total Posts : 449
   Posted 9/22/2011 4:20 PM (GMT -6)   
That would be really cool.if you and marji could meet up Connie . I made some friends in the ccu waiting room ...but now we are on a different floor so I don't see them as much ...its nice to have others in similar situation to talk to ....

Post Edited (blonde504) : 9/23/2011 5:55:45 AM (GMT-6)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 9/22/2011 11:58 PM (GMT -6)   
Yeah, I don't know if things will match up but I may be down there for something else by that time!

Becoming, they still haven't figured out what kind of AI liver disease I have because I have attributes of both, but my elastography showed no major damage, but I have so much fatty tissue around my liver. When I first got acutely ill almost 20 years ago, they thought I had acute hcv and was gonna die in a year, but also knew I had ANA and other autoimmune problems. They told me you either have ai hep or hcv, I guess I didn't show pos for AMA back then or they misread it which is possible at that place. Anyway, they decided I must have intron a for hcv because if they gave me steroids and such, if I did have hcv, I could die they thought. But the interferon made my ai disease so so bad and most of my liver damage occurred then and I got so so sick. They came out with the virus test by pcr in my midtreatment, while my alts were still super high and it came out negative! They told me I had to finish the interferon anyway, which was a big mistake as my side effects were so bad. Now I have a ton of AI antibodies and am a bit of a Frankenstein from that, don't fit the regular profiles for these diseases. When the interferon didn't work, I asked them about getting treated for AI hep like they mentinoed at first and they said I was impatient, wait a few years the interferon will work. It didn't. So I went back and they treated me like I was a hypochondriac. This wasn't at Mayo, but at a small medical center and I should have gone to a bigger place but back then, not alot was known about this stuff.

The asthma is getting me now. What ever this is, whatever they decide to call it, it is lousy. These days my body just suddenly goes haywire.
The one thing about ai diseases is that you get a new surprise all the time!
Love, Marji


Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/23/2011 1:28 PM (GMT -6)   

Marji, I know that AI has lots of ups and downs, but can be controlled.  It may take awhile to find the right meds for you, etc., but I think you are now being seen at the best clinic/hospital in the US.  I know there are some others that are great, like Mass General, but Mayo is closest to you.

Dany can give you lots of info and suggestions.  She is managing her AIH really well.  She will be away for a couple of days, but when she comes back I will alert her to your last post.

Hang in there!

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 3923
   Posted 9/23/2011 4:13 PM (GMT -6)   
Marji,

But until Dany gets back, you can use our search feature to look up AIH and see what is going on with others.

Carol

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 818
   Posted 9/24/2011 9:40 PM (GMT -6)   
I'm back!  Was at an American Cancer Society Relay for Life Summit...2 day training course for event chairs.  I'll be Co-Event Chair and Entertainment Chair for the La Jolla Relay for Life 2012!  Busy year ahead!!
 
Marji, maybe you have AIH/PBC overlap?  In which case treatment is the Urso you're already on for the PBC and the steroid and/or immunosuppressants for the AIH.  How are your LFTs now?
 
Are they sure it's asthma?  There's a pneumonitis that is a consequence of some autoimmune disorders...it's just good to know that there are other possibilities of disease so if treatment for one isn't working,you can ask..., "I was being a Google doc and I'm just wondering about this othr disease?"...granted they may chuck you back into the category of hypochondriac but that's a stigma that goes with autoimmune patients smhair
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 9/25/2011 2:06 PM (GMT -6)   
Marji, Hope you are finding some relief...and again, I just wanted you to know that you are not alone, nor a hypochondriac...Fatigue and malaise(that general yuck, feeling bad all over) is common with AI disease (all of them really), but hard for many people to understand (the "but you don't look sick" phenomenon) including many doctors, even those at prestigious institutions...

It is also a shame what you had to go through...unfortunately, it seems the case with a lot of people with AI issues as these are more uncommon (though on here they seem somewhat common, they really are not)...ask a lot of questions and if your doc doesn't treat you well, maybe look for a one that works with you better...
A good article here:
www.butyoudontlooksick.com/articles/tips-and-articles/doctor-dating-101-how-to-find-dr-right/

There is also another post that I found helpful on the ChronicBabe page (works for dudes too) www.chronicbabe.com/articles/846/

Good luck!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/25/2011 4:19 PM (GMT -6)   

Thanks for those great links, BU!

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 9/28/2011 11:48 AM (GMT -6)   
Thanks for everything and the links!  My laptop screen died so I was away.  I think 18 years is a long time to go without dx, and all my ai diseases and other conditions all started at once.
 
I am doing better since I'm back on thyroid meds and it is helping everything.  my chest xray was okay,no pneumonitis, just asthma probably worse off the synthroid.
 
I did go in last time, when I got the urso, and told the hepatologist flat out I thought I  had overlap, since I have nearly all characteristics of both diseases.  They keep saying its just fatty liver, really really bad fatty liver, but that doesn't explain antibodies to hepc. And every descendant of my paternal grandmother has them, and my mom has a different type of ai hep.  She "forgets" what, she had a stroke and pancreatectomy for pancreatic cancer, IPMN.  Bile ducts.   The hepatologist told me he didn't think I had it because my alk phos was normal.  And he reran the ama at mayo and it came out negative.  He said he thought the other one from Qwest labs in CA was misread by the director three times. He said other markers can shine and make it look positive.  I tried to explain that I'm under tx for AI disease.
 
The one that came out positive was when I was off plaquenil and thyroid meds for the first time in several years.  It finally showed up positive.  Then, before I could go to my mayo appt I got really sick with a severe allergic reaction and red lines on my abdomen, like blood vessels showing, and at the ER they gave me 100mg of prednisone and a dosepack and benedryl and I went home and slept like a baby, on that much pred.  Felt better than I had in a long time.  I got scared and went back  on plaquenil, then Mayo tested it, just after all that pred and going back on plaquenil.  So it came out negative.  That's my theory.
 
When I'm on plaquenil, it seems to help it, keep it under control, but when I go off it, I get really sick.  Its hard to dx someone who's already being treated.  I emailed NIH and told them that my plaquenil seemed to be suppressing either AMA or LKM1 (I have had both positive) along with ANA, and they seemed quite interested in that.  Maybe it will help them find a good treatment.
 
I'm sorry this is so long. I'm kind of at my wits end. I need a real dx.  Fatty liver doesnt cover it.  I'm happy to live in denial, well minimizing its impact on my life and thoughts as much as I can, works for me, but don't want to feel insane either!   What about when it gets really bad or I end up in an ER and they don't know what to do because they are just saying I have fatty liver? I was able to tell them I had a pos AMA that time and the pred worked fast, but what if I can't tell them that? 
 
I know the levels that are elevated in my are ALT and GGOT. I don't drink, I would get really sick from a small amount.
 
Well maybe my experience will help someone somehow.  Thanks for listening and I look forward to reading more about all this and all you all!
 
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