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01/27/2012 05:39 PM

always cold and have daily pain

teacherpam
 
Posts: 204
Member

Hello everyone! I have come a long way since my first post on here 2 or 3 weeks ago. I have learned a lot and feel more calm and accepting of what is or will or might happen.

I feel after reading so many posts and stories that I am not as sick as I originally thought which makes me feel guilty about complaining. But I am working through that too.

I have been evaluated for so many things in the last 2 years and nothing is coming up positive except now the cirrhosis. I have had a bone marrow biopsy, tear duct biopsy, things I have never even heard of, and given so much blood I wondered how much was left! Wink

I asked my doctor if I need to monitor my albumim, ammonia, and iron levels and he said all that is not necessary. I wonder because of posts I have read here.

He says my MELD is hovering 12-14 and if it stays there over the next 3-6 months he will discuss process of getting on the liver transplant list. I belong to an HMO so my options are somewhat limited.

An ultrasound earlier in January showed ascites which he wants to control with diet. I have been trying hard to eat as little sodium as possible but thats pretty hard.

I originally made an appointment with him due to daily pain in my right upper abdomin - often after eating but lasting for a long time. Sometimes the pain feels like it is in the front and sometimes in the side or even back but all in the same general area. Do you think it could be from the ascites?

Also I am cold all the time which is unusual for me. I have always been warmer than everyone else. Now I wear 2-3 sweatshirts and have goose bumps while others have a sweater and feel fine. Maybe I will be cooler in the summer...that would be a nice benefit.

I am very tired all the time and often struggle to stay awake driving home from work. Then I get home and fall asleep for a couple hours but still can go to bed at my regular time. People wonder about me because I don't seem sick to them. Do you think I could be this tired already in the cirrhosis process?

Sorry for the long post. Things just pour out of me here.

Does this all sound right to you?

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01/27/2012 07:47 PM
mikealpha1
mikealpha1  
Posts: 2286
Group Leader

Ok, the last two paragraphs require response. The cold is definitely a liver thing. I like you was always wanting cooler especially at night. During 2008-2010, though, I was ALWAYS freezing. My wife would want the AC on, I'd have the heating blanket on. We'd go somewhere, I'd bundle up with two+ layers. Definitely a symptom with cirrhosis. (Not saying there couldn't be other causes.)

2008 I'd blame the falling asleep on the way home on the fact that I was working third shift. Don't believe that was the case now. I think that was the cirrhosis fatigue talking. You need to tell your hepa about this. And get it documented for use in possible future disability claims.

Yeah, we don't look sick, but then often I would wonder about the person in the handicap spot. But if they had a heart problem and couldn't walk far, it is not something one would see easily. We're all with you on that.


01/27/2012 09:08 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

Hi Mike - I too am often so, so cold. And I like it cooler than hotter but this type of being cold is double-layers and blankets at any given moment. Then I'll have the night sweats (and it shou;dn't be menopause so I'm confused about that). Re: being so cold - I don't understand the physical dynamics of it but it is encouraging to be able to attribute it to something specific. I even bought those Astronaut (spelling?) gloves and socks!! Hugs from people and animals seem to help the most - oh and my fleece blanket! Smile Ru

01/27/2012 10:34 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

Hi there mikealpha1 - I meant to include in my earlier reply that your last paragraph about people who park in handicapp spaces was so perfectly written. I have a handicapp card and only use it when absolutely necessary. I always try to give someone the benefit of the doubt - sounds like you do too - and when drivers break hard, or don't break son enough, or speed I say to myself or others in the car - what if they just had a seizure or heart attack? What if their brakes went out? What if a little boy's dog just ran in front of them and they swerved to miss hitting it. So many have afflictions we can't see on the outside as you mentioned...but they know them. And so many people need to stop the disrespect....they didn't get that handicapp card w/out a LOT of proof for their doctor's to warrant the decision and sign the form. Thanks for making us all keep the right focus! Ru

01/28/2012 02:33 PM
sadlystillsane
sadlystillsane  
Posts: 942
Member

I have to agree. The exhaustion is definetly a sign of my disease, and is one of the final factors in the decision to stop working. I describe my exhaustion as being too tired to wear my glasses because it seems like too much effort. I am exhausted with no output of energy and no amount of sleep makes it better....also as some here (Mike) predicted may happen, my days and nights are getting mixed up.

I used to be the person who would tell you at 6 am that you were burning daylight and want to be in bed asleep by 10 pm. Now I seem to be waking up at 9 or 11 in the morning because I seem to sleep best after 4 am. Can't seem to fall asleep early anymore...which is very weird for me.

I have been HOT since entering menopause 5 years ago. Like sleep with the window open and a fan blowing in below zero weather up here in the frozen north kind of hot....now I go to bed with the heating pad and reluctantly turn it over to my husband when he comes to bed hours later...and wearing more sweaters, turning the heat up higher....

Just visited the Hep last week Teacherpam, and those dry eyes and mouth you may have due to blocked ducts are a symptom of cirrhosis caused by certain things...like in my case Primary Biliary Cirrhosis. Hep also said that the exhaustion and body temp fluctuations are part of the cirrhosis.....

Good you found the site and keep on spilling, it is done regularly here!


01/28/2012 03:20 PM
teacherpam
 
Posts: 204
Member

Thank you Sadlystillsane...you have been a great source of information and peace to me already...as have all the people who seem to frequent this site. I hope to do the same for others some day.

01/28/2012 04:19 PM
iwiham1027
iwiham1027  
Posts: 940
Member

Cold and hot here too right now got the double layers and blankets only thing is can't type with gloves on that would be too easy! Went to the PCP Doc things are not looking good here. Got a cyst or some fluid filled thing (they call it an ovary) problem is I had mine out and also some bladder issues going on with this diverticulitis which is not clearing as it should finally going for the ultra sound which is badly needed then GYN appt and also Urologist before the Hepa appoint in Feb. Isn't life fabulous! Just had to throw that in. Dry eyes and mouth as well all part of the game.

01/28/2012 05:02 PM
mpmom
mpmom  
Posts: 3275
VIP Member
I'm an Advocate

Most Drs don't like us monitoring our disease. But as a patients advocate I can tell you it can make a huge difference. The most important are Bilirubin, albumin, INR, platelets, Creatinine,Sodium. Iron (For Hemochromatosis patients )

If you do not feel comfortable monitoring your labs that's fine. But it's usually easier than wondering and imagining the worse.

I have a big problem with the tear duct problem and my eyes feel like they are full of sand all the time. As for temp issues I'm either too cold or too hot. Cirrhosis causes hormonal changes also so this may be the cause.

I never go to bed before 2am and I'm usually up before 6. But once every couple of weeks or so I will sleep for a couple of days. the fatigue is constant and has been for about 5 years.

If you saw me today you probably wouldn't believe I'm sick. Yesterday was another story, i looked as bad as I felt.

Sometimes I look in the mirror and still think "maybe they were wrong" Then something smacks me in the face to remind me. So i never worry about what others think. Life is just too short.


01/28/2012 06:43 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

Hello sadlystillsane (what a great site name!) I'm confused about these night sweats. Menopause stopped several years ago (I'm 49 now) and as this disease is progressing so it being cold and bad bad night sweats. I did find out that putting my head in the freezer (well I don't mean cut your head off and put it in there Smile but let the freezer cool me down really helps. Just a thought. Take Care, Ru

01/28/2012 07:59 PM
sadlystillsane
sadlystillsane  
Posts: 942
Member

Ya my Hep told me to expect the cold and night sweats, and for me menopause was over by 47. I'm 50 now. Cannot beleive how cold I get though and then do get hot as I sleep. Crazy!

I don't think it is prognostic or indicitive of degree of disease.

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