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  • always tired

    Hi everyone,
    I was wondering if any of you have had these same problems? Since you have gotten ic, do you have problems with always being tired? It seems like I am always tired, and that even when I wake up from a good nights sleep I could still sleep for a couple more hours. And during the day my body is just physically tired. I was wondering if any of you all ever have had this problem, and what do you do or is there anything that I can take to fix this? Thanks

  • #2
    I feel tired most of the time. I think it's just so exhuasting for your body to be in pain all the time. I also have a 2 year old who tries to climb into my bed like 10 times a night so of course that doesn't help. I don't know of anything to do though. I think that someone people might be on sleep meds if they have trouble staying a sleep, I'm not though.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      HI! I feel drained all the time too. My arms and legs ache. I'm going to see my dr. tomorrow and see what he thinks the problem is. Several friends think I have Fibromyalgia.......guess it could be. I've felt this way for a few years....but always attribute it to stress and being in pain so much. Have you talked to your dr. about it?? Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


      • #4
        No I havent talked to my doctor about it, since I just got diagnosed with ic, but I would be interested in what you doctor says


        • #5
          Pain can be horribly exhausting.

          Stay safe

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          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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          • #6
            I'm tired at different times during the day. About 9:00 am I get really sleepy. Some days after lunch it's really bad. I can sit down after dinner and fall asleep, but then not sleep when I get in bed at 9:00pm - it is very frustrating. I don't like feeling tired all the time. It is tough especially if you have a two year old. They don't wait for anyone. They need you right away. Hang in there.


            • #7
              Me too!
              Hugs Sandra
              "Never Give Up."

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              • #8
                I remember being tired and depressed when the symptoms started. Constant pain, getting up several times a night and the restrictive diet all seemed to play into this.

                What has helped? Treatment, and adjusting to the night wakenings. I have gotten much faster at getting back to sleep after a bathroom run. I'm not sure how, I think I just got use to it. And, I take Ativan once per week (Friday night so I can sleep it off on Saturday). It lets me get a big night sleep and it calms my bladder spasms. Talk to your doctor about the fatigue. It is a relief just to have a plan in place.


                • #9

                  I am exausted most of the time as well. I guess it comes with this illness.


                  • #10
                    I could always sleep! I think that it is a lot of strain on our bodies to fight these flares all the time.


                    • #11
                      Interesting that you should bring this up because I was just thinking about this the other day. I am much more tired than I used to be before IC reared its ugly head. Now I am zapped by the work day so when I get home it is all I can do to get dinner together. I know that I used to have a lot more energy in the evenings. When I am flaring, I have weekends where I do not get off the couch. Basically, I feel like I could always sleep.


                      • #12
                        You should go to your doctor and have your thyroid levels checked soon. It could simply be the IC, because it does wear your body down, but it's best to be checked. The right dose of thyroid meds can help a lot if your levels are low.

                        *IC-- Summer 2004; PFD--October 2005
                        *Fibro--Fall 2000; CFS-- Fall 2000
                        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                        Total Abdominal Hysterectomy--adenomyosis--9\08

                        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


                        • #13
                          I think for myself, between pain, and getting up at all hours of the night, I really only get 2-3 hours of good sleep, then its up and down going to the bathroom, in between trips I really don't sleep at all. My pain management doctor put my on Zanaflex a few weeks ago, but that really didn't help. (It stopped a couple of trips to the bathroom, but thats all). Went to my family doctor yesterday, we discussed the possibility of having an over active bladder as well as IC, so he took me off the Zanaflex and put me on Vesicare. (I know some of you ladies have tried it, but any success with it. I need to sleep so that I can function. (I don't have a life -- on Saturdays all I do is sleep and pee!!) My doctor also gave me a referral to the Uro said maybe its time to have my hydro again, so I'm going to do that in a few weeks. (I don't know, if its not one thing, its another!!)


                          • #14
                            Fatigue may be from a lot of different things...pain, multiple trips to the bathroom, the stress of this diagnosis....if it is lack of sleep are you on any antihistamine or medication like a anticonvulsant or antidepressant that could help you sleep and treat the IC symptoms?
                            I do agree on getting your thyroid checked ...I think almost IC patients should at some point just as a means of illimination of contributing factors...there are also a lot of other pretty common amoung IC patients such low iron that may contrute...I give a lot more at the link on fatigue. There are some treatments too
                   newbie kit ideas to help you sleep
                            Faith, Hope, and Love,

                            I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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                            • #15
                              I did not know before how exhausting chronic pain can be. At times when I was having a particularly bad flare (I had pretty ugly pain everyday, but some days it was pretty much unbearable) I would just collapse after I got some meds in me to take the edge off the pain. I mentioned it to a friend whose husband has chronic pain and she said she absolutely knew, from their experiences, that pain is exhausting for the body.

                              Now that my symptoms are under much better control with Elavil, I'm still sleepier (from the Elavil) but it's different -- I don't feel so drained and exhausted, and I can plan for being a little tired in the morning.

                              Good luck figuring this all out for you! It's frustrating that everything is trial and error for the individual, but it certainly seems to work that way.