Fatigue

[PlainJane]

Anyone else have debilitating fatigue? My problems seemed to all start with fatigue. Then after the fatigue set in the bladder problems started and now I'm stuck with both. I really feel though that the bladder problems cause the fatigue. The unrefreshing sleep causes fatigue for sure.

Some days I've been so tired I felt like I couldn't lift my arms. Other days it's not so bad -- I can go to the shopping mall and walk around for half an hour. I can't be diagnosed with chronic fatigue syndrome because the bladder problem hasn't been resolved. They like to rule out all other possible causes for the fatigue. A lot of the doctors I've seen think that my bipolar disorder is the cause of the fatigue but I know better. I've had the bipolar problem for years and have never been this tired.

I can't remember seeing fatigue listed as a main symptom of IC. It's totally possible I just don't remember it (see the part about sleep deprivation, my memory is pretty shot!)

Erica

[traceann]

Hey there Erica! When I was just diagnosed, I seemed to have the sleepy's as well. I sometimes could barely keep my eyes open. I found myself crashing out on the couch at the drop of a hat, lol. That was very unusual for me! I am sure it was a combo of everything, stress over a cranky bladder, not much sleep - even if I slept, it wasn't a good restful sleep; new medications etc. I think this because as time went on, that went away, thank goodness! But if it's not seeming to have any reason for it, you probably should ask your doc about it! :)

Hugs!
:)

[ICNDonna]

Pain and discomfort can cause fatigue very quickly. It's not uncommon for an ICer to lose sleep as well.

Donna

[PlainJane]

Wow, I slept so horribly last night. I must've woken up about 15 times to pee last night. I feel just terrible today. I've never been so tired in my life.

Erica

[tigger_gal]

((hugs)) Donna is right.. I would fall asleep during the day so easy, but at night I watched the clock.. I finally was put on ambien and that has helped greatly.

[ICNJess]

If you get aches and pains, I would definitely get checked for Fibromyalgia. Fibro sufferers don't fall into the deep part of sleep thta refreshes them, so they often are like zombies during the day.

I know IC kept me up many a nights, but those that it didn't I still felt like I didn't sleep, plus my whole body ached.

Hugs,
Jess

[PlainJane]

Hi Jess,

Thanks for your post. No aches and pains. I've been checked for fibromyalgia. The only pain I have is my TMJ pain which is quite bad at the moment as I was in a car accident.

I definitely feel like a zombie. I don't feel part of the world at all as I am not working or in school and most days don't leave the house. Trying to stay positive but feeling lousy (what an understatement!)

Erica

[bigred]

I understand what your going through. I don't leave the house to often either. It seems like I could go to sleep anytime. Part of my problem I just got a couple new drugs for Chronic Inflamatory Colitis and it all says it will make you drowsy. Also my doctor put me on 1 Elavil every morning along with the 3 I was already taking at night. I try to make myself busy enough to stay awake till 12 or 1 and then I gave myself permission for a nap. My house sometimes looks like I don't get much done but I am trying. I have a very understanding husband so that helps. I believe the IC pain and the Colitis pain work on the tiredness. I keep mentioning it in my complaint but it doesn't seem to matter. Take a good nap and I hope you can wake up refreshed.

[PlainJane]

I understand what your going through. I don't leave the house to often either. It seems like I could go to sleep anytime. Part of my problem I just got a couple new drugs for Chronic Inflamatory Colitis and it all says it will make you drowsy. Also my doctor put me on 1 Elavil every morning along with the 3 I was already taking at night. I try to make myself busy enough to stay awake till 12 or 1 and then I gave myself permission for a nap. My house sometimes looks like I don't get much done but I am trying. I have a very understanding husband so that helps. I believe the IC pain and the Colitis pain work on the tiredness. I keep mentioning it in my complaint but it doesn't seem to matter. Take a good nap and I hope you can wake up refreshed.

Hi,

Sorry to hear you are so groggy. I hope that improves soon. I've always heard that side-effects tend to lessen the longer you are on the meds. I hope this is true.

I'm glad your husband is understanding! That is a help I bet. My parents are very helpful and generous with me but they are just as stuck as I am. They don't know what to is wrong with me and they are so frustrated with this problem.

I wish I could get a good nap. I have 15 partial awakenings every hour in addition to having to get up every one to two hours to pee. I never wake up feeling refreshed. I haven't in almost two years. Chronic sleep deprivation is so wearing. I've had sleep problems before but never this bad for this long. It's horrible. I wish none of us were going through this. It's a nightmare.

Erica

[ICNJess]

Aww Erica I am sorry...are you on Elavil? I used to take that but it made me so sleepy the next day. Anyway, I really hope you get some good sleep soon...I know how awful it is to feel so exhausted all day and not sleep. :grouphug:

[PlainJane]

Aww Erica I am sorry...are you on Elavil? I used to take that but it made me so sleepy the next day. Anyway, I really hope you get some good sleep soon...I know how awful it is to feel so exhausted all day and not sleep. :grouphug:

Hi,

I'm not on Elavil. I have bipolar disorder so I can't take antidepressants. They make me very sick. I hope I get some sleep soon. I feel horrible. I am painfully exhausted.

Erica

[SandyRN]

Hi Erica,

I dont think we've met yet, so :welcome: to the board. There are a lot of sister illnesses that go hand in hand with IC, and one of them is Chronic Fatigue, that I see you had already mentioned. I do understand why they dont want to diagnose more than one thing at a time, but it's quite possible that's what you have.

CFS can disrupt the normal sleep cycles and patterns, which only makes everything worse.

Keep seeing doctors, changing doctors if you need to til you get the help you need. I've had fibro, cfs, and lots of other problems for years, and it does get better once you get the proper medications, and treatment.

See my laundry list of medical problems below.

Please talk to your doctor about giving you something temporary for sleep like Ambien or Lunesta to help you get some rest before it gets any worse. If they don't like giving sleep meds, ask for some klonopin, or valium to relax and hopefully you'll be able to get some sleep........anything just for a short time to get you some rest so that you can think clearly again.

I know how awful sleep deprivation is, I've had it on and off for years.

Take care, Sandy

[PlainJane]

Hey Sandy,

Thanks for your post. Wow that is quite the list of illnesses you've got going there! Sorry to hear you've got so many health problems.

About the sleep meds I won't take them so it's not so much an issue of them not being willing to give them to me. I had a horrible experience at University where I got addicted to klonopin. It took 3 hospital visits with severe withdrawal before I was finally able to quit the med! I had to take a year off university to fix my sleep patterns. I have an absolute fear of sleep meds. And the thing is I never felt like I got sleep on them I just felt I was knocked unconscious for 8 hours. Not refreshing.

I have bipolar disorder which only makes things more complicated! I am not on meds for it but I take a vitamin-mineral supplement that has done wonders for my mood. I went down the med route for years and it was an experience I'll never forget. As you can tell I have an absolute dread of psych meds.

I am on antibiotics for ureplasma urealyticum infection but no improvement in my urinary symptoms. I have to check next month to see if the infection has cleared up. I'm going to see a doctor in New York City next month who knows a lot about infections that could be causing my symptoms. I am getting absolutely nowhere with the doctors I've seen. They are totally ignorant in regards to Ureaplasma infections (as well as bipolar disorder! 3 of them tried to give me antidepressants for my bladder! Antidepressants will make me manic and send me to the psych ward or worse!).

Needless to say I've had horrendous experiences with doctors for the past two years over this bladder problem. They've been incredibly dismissive, patronizing, negative, ignorant and at other times just flat out RUDE.

Thank you for your welcome :) I am in a horrible mood. Does it show? Sorry this post is so negative I am just at my wit's end with this bladder problem.


Grrrrrrrrrrrrrrrr!!!!!!!

Erica

[ICLori]

I've experienced a great deal of fatigue, too, which seems to increase with the level of pain I am experiencing.

I think it ought to be listed as a symptom of IC, myself...

Blessings, Lori

[Tina K]

I am tired all the time too. I think our bodies are doing so much to fight what's going on we don't have the resources for extra energy. I have read fatigue is very much a syptom of IC. I know some days I just want to sleep all day long.

I can't go shopping for very long either. Now the doctor has me on meds that make me so sleepy, I hope that it goes away soon.

Hugs and prayers my dear!
Hope you get some energy soon! It is especially hard this time of year when there is so much to be done.

[Julie B]

Hi Erica, I just added this topic to my book. I think that many people suffer from fatigue with IC. It is a funny sort of tired isn't it? I too was tested for everything, but nothing came up. My doctor finally said, "Julie, maybe you are just one of those people who needs to take a nap now and then." In a way, it gave me the permission to rest that my body was looking for. Now, if I need to rest I just do. I think I wasted a lot of time being frustrated with being tired, when all I really needed was to close my eyes now and then during the day. I know that isn't going to work for everyone, but maybe this will help someone.

[PlainJane]

I wonder if low cortisol can contribute to sleep difficulties. I don't know if my sleep problems are being caused by my bladder or something else. While I was in New York for treatment I had two really good days where my bladder nearly completely settled down-- at that time my sleep was much deeper and I started to feel more alive. Of course that didn't last long but still, does that mean that my bladder is waking me up at night?

If it's not my bladder what else could it be I wonder? Low cortisol? Low iron? I just don't know, it's so confusing.

Erica

[Silverfox]

LOW THYROID NEUROPATHY?

Hi Erica,

Fatigue is a symptom of almost every condition or disease. From my earliest memory I remember always feeling tired out. It seems so odd that I had observed this when I was only 6 years old. I also remember that I had bladder frequency, and was aware of symptoms by age 3 or 4. The other thing I remember is that I just loved life. Yet, I always felt like I could not keep up with all the other children in school. It was like I was caught in a invisible net, and that kept me behind. I think my parents were disappointed in me too, but they had no idea what was wrong, and I felt their disappointment.

Things never improved year after year. I had some dreams, and over time I learned to just let them go. For some reason these goals were for others to have and not me. I tried not to be bitter or jealous, but I know I was, and am today. I had several conditions along with the bladder symptoms, that were ignored as being unimportant problems, or something to just be quiet and endure, things girls and women were told are just normal, so don't mention them.

Having terrible fatigue just got worse and worse. It was the type of fatigue where you could sleep for 11 hours and not feel rested. Pushing yourself to get out and do what normal people do and no extra. My bladder frequency also was growing, but it let up now and then, and I could fool myself and others into thinking I was normal. My fatigue was strange in that I could sleep 11 hours without waking and after only 3 or 4 hours, then a huge fatigue would sweep down on me and suddenly I would feel so exhausted and even nauseous, it was something like you get when your coming down with the flu or other virus. This was the same for me everyday. I was attending classes across the town and by the time I arrived the huge fatigue swept down and ruined everything and I struggled with all I had to make it home to bed.

Years passed, and I had the similar experiences with Drs. that you and many others here have had. At one point I just gave up and never went to Drs. even when I was pregnant, I had very low self esteem, particularly around Drs. My family also had little interest in my failing health as usual, and I made it easy for them too, by not complaining. I was not taking any medications, and if I did go to a Dr. I learned never to mention my bladder symptoms or the huge fatigue, because I learned finally that the Drs. treated you so much better when I did not mention bladder frequency. When I had brought up my bladder frequency and pains, I noticed they treated me so different. So, I just hid that information in order to get the help I needed for the easy not so disgusting things, and I liked being helped.

Over time, this finally did not work and I did have to face the music and deal with my bladder symptoms. Yeah, it turned out my suspicions were true and I was treated with great unkindness, rudeness, and absolute disgust. I was really puzzeled by all this bad attitude, when I had done nothing to diserve bad treatment. I was paying them well as I had good insurance. I went all over the country and met many urologists and tried many painful treatments that failed to help and most made me worse. There was no computer then so all I could do was call on the phone and talk to others in search of help.
Some were a little nicer than others and this puzzeled me.

So, when I thought I had tried everything and the top experts had told me that I had tried everything, I received a phone call from a relative telling me that we had a disease in our family. It turned out that she was correct, and I realized that all those years, since I was just a baby I had all the symptoms of this disease. All those years that I began going in search of help, and not one of those top Drs. had ever bothered to attempt to solve my problem. They just used the simple attacks on my bladder that caused more severe pains then ever before and took all our money and they all did it with huge disgust. They also attacked my mental health and convinced some of my family that my bladder problems were just a mental disease that I needed treatment for. All this time, they were doing this to other women who were suffering the same as I was. Tragic! I think this is the most inhumane story that I have ever heard of or read about, and we let them do this to women for a long long time. Things must change, but this will not change until we can go public as they have done with the HIV virus! I'm not saying this is an infectious disease, but it is definitely a mostly female problem that has been easy to kinda ignore. But also, this bladder disease has been a big sorce of income and they all knew that it could not be successfully treated. People seem to do anything for money, and it is heartbreaking to watch.

Okay, I discovered that I had a disease that caused nerological damage throughtout my body. Thats why I stuggled so long with that invisible net that held me back. This disease is also the cause of extreme fatigue! The nerve damage was the cause of all my sister IC diseases! I could list them all but you might want to make your own list of symptoms and signs. The good news was that my disease was treatable all along, and safe and simple to treat. Not one of the top IC Drs. could make this diagnosis... Why?...because the Drs. are no longer being trained to do this, and so this disease is almost being ignored because it also is a female disease and it is cheap and simple to treat! Drs. can't make a good living off of this because just a simple pill will take care of it. SHAME, SHAME ON THEM!

Okay, this is turning into a vent, so I just want to send you to a couple web sites to read about this. You have any spare time do study this disease in detail. Have any questions just pm me or go to the web sites and ask questions till you understand. If this might be you do ask a kindly Dr. for help.

The sites are called stopthethyroidmadness.com and thyroidabout.com but do not come back to me and say that they ran tests for this. The tests are rotten. They stopped teaching Drs. about the symptoms in 1973 or so, an older trained Dr. will know about this.

Along with fatigue, just add bladder frequency and oversensitive to catching bladder infections to the long list of signs and symptoms. Did you know that over 50 million Armericans have this thyroid disease and do not know it!

Do not be fooled like me, find out if you are one of the 50 million Americans!

My new slogan is "YOU CAN TAKE AWAY MY ARMOUR THYROID WHEN YOU PRY IT FROM MY COLD DEAD FINGERS!''

My Dr. says that there is a real big problem in that this is a pandemic and there isn't enough Armour thyroid to take care of all of those in the world that would be helped by it. I believe humans can try to solve this, by coming up with new thyroid drugs.

My daughter is a Veterinarian ( :bow: ) and she is more humane any day of the week, then any and all the top IC Drs. that I saw put together!

Please Erica, be open to a new idea, and learn about the terrible fatigue, bladder problems and other symptoms before you delete this message to you.

my warm sincere wishes, Silverfox :)

[wife2TJ]

I am always exhausted. They pick on me at work about it. LOL! Never considered it would be from IC. I've been to the dr. to see if it was CFS (Chronic Fatigue Syndrom) but they didn't think so. Its awful as I get so tired during work Its hard to stay awake sometimes.