KellyErnst Posted August 13, 2006 Report Share Posted August 13, 2006 I just cannot seem to pull myself out of bed before 10:00 a.m. - Used to be up at 6:00 a.m. everyday and didn't sit down until 10:00 p.m. What can I do to help this symptom - wondering if it's CFS - what is the difference between POTS and CFS???Kel Quote Link to comment Share on other sites More sharing options...
dano2718 Posted August 13, 2006 Report Share Posted August 13, 2006 I'm glad you posted this question, as I was going to do the same thing after rousing from bed . I think you will find that there is no good answer for whether a symptom is from CFIDS or POTS, or many other illnesses. "Unrefreshing sleep" seems to be common to both, and many on here struggle with insomnia. I was going to ask, like Kel about being unable to get out of bed before 9 - 10 AM. I also could get up at the crack of dawn in the past, but not now. Taking Lunesta helps the insomnia and I now get 7-8 hrs sleep a night. But still, I wake up at 7 AM with the alarm, and simply cannot do anything but cut it off and sleep / half sleep till 9 or 9:30 some days. It's like you wake up beat. Anyone else have trouble getting going? Quote Link to comment Share on other sites More sharing options...
Beccapooh Posted August 13, 2006 Report Share Posted August 13, 2006 Taking Lunesta helps the insomnia and I now get 7-8 hrs sleep a night. See, I wish that Lunesta helped me, but, it doesn't!!! Nothing seems to help me sleep. I've even tried some not so great things (won't disclose here, probably not even safe!!) and they didn't work either.I have the same issue with not being able to get my self up. I'm worried, because school is getting ready to start (this upcoming week) and I don't know how I'm going to get up and get my girls ready.?!?!?? It was horrible last year, too and my poor husband had to suck it up and help out, but, this year, the baby is starting Kindegarten and she won't let Daddy do anything for her (she quite modest). So, I'm going to have to get up. I don't know how on Earth I'm going to do it. It's not like I'm being lazy and chosing to not get up, I simply CAN'T do it.What's the deal, huh???Bec Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted August 13, 2006 Report Share Posted August 13, 2006 Hi! I would force myself up to get my son on the bus and then go back to bed. It would be such a struggle to do that. I would do one thing, lie down, get up, do one more thing, etc, etc. I couldn't even sit at the table and have breakfast with him! Mornings are definitely the worst time of day, but it doesn't get much better later either. Martha Quote Link to comment Share on other sites More sharing options...
cardiactec Posted August 13, 2006 Report Share Posted August 13, 2006 HEH, i'm up at 5am every saturday for a lovely 12 hour shift at the hospital and have a very hard time getting up, tired.........but i must do it. is everyone here always symptomatic mostly in the morning?? i notice the horrible fatigue for me usually sets in around 3pm or so, especially when i am up and going at 5am! by 3 i am ready for bed on those days. luckily i dont do too much past 3 at work and get to lay down in the back room til i leave at 7PM! Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted August 13, 2006 Report Share Posted August 13, 2006 I'm nervous about having to get up again to get the kids ready for school also. This whole summer we've been sleeping till about 8:30 and staying in PJ's till 10:00. I'm going to miss the freedom of that.dayna Quote Link to comment Share on other sites More sharing options...
persephone Posted August 13, 2006 Report Share Posted August 13, 2006 It hits me between4 and 7 pm most days but I too physically can't get up before 9 or 10. In the hospital they gave up trying to get me up at the crack of dawn. They woke me up for my Ivabradine pill at 6, but used to let me go back to sleep after or else I would make no sense and feel like death Quote Link to comment Share on other sites More sharing options...
AJVDK Posted August 14, 2006 Report Share Posted August 14, 2006 Yeah, I know the feeling I am worried about when my son goes back to school, I don't think I am going to be able to get up on time to get him to school! I am trying to get up by 7:30 now and am lucky to roll out of bed at 9:00) I got a ways to go! Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted August 14, 2006 Report Share Posted August 14, 2006 Hi, Not sure if I'm right, but I think the difference between POTS and CFS is the heartrate? I too have a very hard time getting up in the morning, and I'm proud to say I got my daughter off to school last week! Although we were short on time. But I still did it. I have been going to bed earlier to help with the sleep issues. (I'm going to pay in the morning for being up this late) I started about 2 weeks before my daughter had to go to school and set my alarm to 6am. I didn't get out of bed, but I did "wake up". So because I did this, it helped me prepare for the real thing. But I'll be truthfull, I only do it cause I have no choice.....I still feel awfull in the mornings! I can't really go back to bed either cause I have another child still at home. So I take a shower to help wake me up and force myself to eat a little(my stomach is uneasy so the last thing I want is food) It might be easier on me cause I know I'm doing it for my child, but I hope my body will get used to it. A part of me doesn't think it will though. Best of luck to everyone! Amber Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 14, 2006 Report Share Posted August 14, 2006 I've been told that POTS & CFS overlap. It is possible that nearly 1/3 of CFS patients may actually have some Dysautonomia like POTS which might help them find some treatment. If you read through peoples symptoms you will probably see that many of the Dysautonomia patients suffer from fatigue. Quote Link to comment Share on other sites More sharing options...
Eillyre Posted August 14, 2006 Report Share Posted August 14, 2006 Kel,I'm one of the POTS/CFS combos that briarrose mentioned in her post. Here's a link to the CDC's definition of CFS. http://www.cdc.gov/cfs/cfsdefinition.htmIt was nearly impossible to distiguish how much each condition contributed to the terrible fatigue I had until I found a medication that worked for the POTS. I did have all but one of the other CFS symptoms listed on the CDC site (substantial impairment in short-term memory and concentration; sore throat; tender lymph nodes; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours). At this point I have little to no problem with POTS symptoms as long as I take my meds and regular precautions, but I still have the fatigue and a number of other CFS symptoms. It's the CFS that holds me back now, although it is gradually improving.Feel free to PM me with any questions you have! I love to help. Rebecca, I had very bad insomnia earlier in my illness and my symptoms were worse in the morning and at night; 11am-3pm was my best window, although even that was not particularly stellar. I took Melatonin to sleep at night (which helped tremendously), but eventually decreased my original dose because I felt like it hindered me in the morning trying to get up. I was still able to sleep at night on the lower dose, but I didn't have as hard a time getting up the next morning. You might want to ask your doctor about the ins and outs of decreasing your dose. On the other hand, it may just be that the severe fatigue is your culprit.AngelaJust a brief note on fatigue that I forgot to include on my last post. I have noticed a difference between the fatigue I experienced in relation to the POTS symptoms and what I call my "CFS fatigue." It's not easy to explain and I imagine that it's different from person to person, but you might try analyzing your fatigue to see if there are differences (like many of us do with headaches -- migraine vs. sinus vs. did not drink enough water, etc.).Hope this doesn't sounds too crazy. As a former dancer, I'm used to paying attention to minute changes in how my body feels, but it's difficult to put what I feel into writing sometimes. Angela Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted August 14, 2006 Report Share Posted August 14, 2006 My husband is doing better with his fatigue. He recently had a sleep study and was diagnosed with Obstructive Sleep Apnea and more importantly they determined that he had 565 muscle twitches during the night which also led to what they call sleep arousals. The arousals meant that even though he had no problem getting to or remaining asleep, he never achieved the stage of deep sleep that is the beneficial restorative kind. He has had his CPAP for just over a month and is doing great. He was just taken off Mestinon about 10 days ago and he has had no ill effects from that. So, another step forward for us......Wishing you all could have sweet dreams!I don't know if you will find this relevant or not but here is an abstract that I came across today related to CFS. 1: J Electrocardiol. 2006 Feb 28; [Epub ahead of print] Links Shortened QT interval: a distinctive feature of the dysautonomia of chronic fatigue syndrome.? Naschitz J, ? Fields M, ? Isseroff H, ? Sharif D, ? Sabo E, ? Rosner I. Department of Internal Medicine A, Bnai Zion Medical Center and 'Rappaport Family' Faculty of Medicine, Technion-Israel Institute of Technology, P.O. Box 4940, Haifa 31048, Israel.PURPOSE: Because autonomic nervous functioning is frequently abnormal in chronic fatigue syndrome (CFS), we examined whether the corrected QT interval (QTc) in CFS differs from QTc in other populations. METHODS: The QTc was calculated at the end of 10 minutes of recumbence and the end of 10 minutes of head-up tilt. In a pilot study, groups of 15 subjects, CFS, and controls, matched for age and sex, were investigated. In a second phase of the study, the QTc was measured in larger groups of CFS (n = 30) and control patients (n = 96) not matched for demographic features. RESULTS: In the pilot study, the average supine QTc in CFS was 0.371 +/- 0.02 seconds and QTc on tilt, 0.385 +/- 0.02 seconds, significantly shorter than in controls (P = .0002 and .0003, respectively). Results of phase II confirmed this data. CONCLUSIONS: Relative short QTc intervals are features of the CFS-related dysautonomia. The significance of this finding is discussed.PMID: 16895768 [PubMed - as supplied by publisher]http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16895768&itool=pubmed_DocSum Quote Link to comment Share on other sites More sharing options...
ariella Posted August 14, 2006 Report Share Posted August 14, 2006 The getting up on time thing is challenging. Not only do I have POTS, but pretty sure my 14 year old daughter does as well. You can only imagine the struggle to get her up in time for school---teenager with POTS I have (probably wrongly) accused her of being "unmotivated" many times. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted August 15, 2006 Report Share Posted August 15, 2006 I am all over the place. Typically my best time is morning, and my worst between 3-7 pm. I used to sleep in, then couldn't sleep past 6 am, now I wake up sometime between 6-9. i am in bed every night by 11.I have had CFS for 30 years or so and OI in a severe form for about 6 years now. I believe they are overlapping. The fatigue really is an awful problem for me. I asked my doctor for a sleep study, but he said he could see no reason for one. I don't care how much i sleep, I wake up feeling like I haven't slept at all. An hour after I'm up, I'm ready for a nap. morgan Quote Link to comment Share on other sites More sharing options...
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