MPN Voice
3,284 members4,961 posts

Body clock

I wonder if any of you are experiencing "reversed body times. My sleep pattern is interrupted quite frequently by sweating but I usually get up at 7.OO a.m. - tho there are times when I'm awake until 5.00 a.m. Within a couple of hours of getting up I need to go back to bed for an hour or so. When my daughter comes to visit, after a couple of hours I am wiped out and absolutely have to go to bed when I sleep for between one or 3 hours. I'm falling over with tiredness and have tried not to sleep but am always defeated. Feel awful - aching, headaches, drained. Then about 7.00 pm I wake up and although not raring to go , feel more human. My body clock seems to be in reverse! Comments please guys. Thanks. Mary

9 Replies
oldestnewest

Hey Mary... :)

Sorry to hear about your altered sleep patterns. I too continue to suffer from such things...

That was one of the reasons why I decided to find a way to learn how to exercise all over again. It was/is really a tough thing to do at times, & so it continues unfortunately. However, there is a small upside in that I do eventually find a little normal sleep along the way, (even if that is only for a couple of hours).

The exercise I do is cycling. When I first started I could barely travel between 3-5km, now I am regularly able to undertake 40-50kms.

Nevertheless, in my case, my anemia is making this routine ever more challenging & difficult to achieve as I continue to grow ever more breathless. However, I just keep telling myself that I am not giving up nor giving in...

Some days, (most if I am honest), I dread going cycling. However, I do know that I derive benefits from being able to continue to do so at this juncture... The day may soon be upon me when I can no longer do so, & then I shall have to find a new routine that I can still manage I guess... Perhaps something not quite as rigorous. Breathing is everything to me and I am uncertain if something like a yoga class would suffice. My aches & bone pains seem to be intensifying for me as this journey continues...

I do try to stay awake until well into the witching hours in the hope that sleep will soon come, & I am afraid that it is my MPN condition & its symptoms that prevent me. Some days I really struggle just to rise... Some days... I will stay in bed well into the afternoon, & sometimes for days at a time...

However, as I said, I am not beaten as yet, & therefore I shall continue to search for alternate ideas and solutions. Sleeping pills for me are not one of those answers at this stage...

Hence, tomorrow, irrespective of how little sleep I have this night, I shall rise as early as possible & go cycling once more... & that exertion will aide me in my coming slumber to achieve a better night's respite...

That's my theory in any event...

Best wishes Mary, at least I, & many others here I am certain also understand and empathise...

Steve

(Sydney)

Reply

BODY CLOCK. HI Steve. How lovely to hear from you so far away.You sound very determined and (almost) fit. I know exercise is important but just to add to the joy of life I have CFS and Bronchiectasis all of which cause fatigue. I have ET. JAK2 / CALR . I so long to be able to go for a walk in the woods but can only manage a short walk to the bottom of the road and back - uphill! We are all struggling to find ways of dealing with our conditions and I'm so glad you are able to continue with your cycling. Good for you. Have just returned from having an ultrasound on my kidneys/bladder after numerous infections.Meanwhile, keep it up and my very best wishes to you.

Mary

Reply

Hi Mary, I too have very disturbed sleep, waking lots of times during the night. Not as bad as yours by the sound of it. It does mean I am very tired all the time. Although I am quite anaemic at the moment, the haematologist has put me on iron tablets and says I should feel better when my blood improves! I won't put money on that.

I think you should mention how your sleep pattern has changed to your doctor either GP or haematologist and see if they can help you.

I've never been a good sleeper, having a child who didn't sleep until he was 9 years old put paid to deep sleep permanently. (He's 37 now) I can't wait for him to have children - I do hope they take after him sleep wise if he does have some.

Reply

Me too.... It's awful. I'm usually very tired during the day. But come night time I can't sleep. I don't nap during the day because I feel guilty. But I don't get as much sleep at night as I need. I sweat and have burning feet which begin at about 9 at night.... I have e.t Jak2+ also Behcets disease, herniated disc and allodynia also multiple liver adenomas which hurt.... I was diagnosed after a bleed in my right eye, but my platelets had always been high but they put it down to my behcets....

Hope you get sorted. Have a good Xmas

Reply

BODY CLOCK. HI wormwood. It sounds as if you have several conditions to deal with. IT is awful isn't it. Do you take anything to help you sleep and has your GP been of any use? It's now 1.15 am and I've just been sitting outside on my garden bench - all is calm and dead! With a glass of Prosseco a friend brought to me. Not sure it will help but feels pretty good right now! There must be a solution to this as,like you, I'm. almost wide awake but desperate for sleep. What are behects? Wouldn't it be great if we could all call each other insomniacs at a time like this. Best wishes , Mary

Reply

Hi... No sleep for the past 2 days... My brain doesn't seem to shut down!!! But as soon as it's time to get up , I feel exhausted and could sleep... I have been given meds by my doctor, but I find I'm like a zombie until dinnertime, which is no good. I'll get do tired I'm bound to sleep the sleep of a thousand deaths at some point. On the meantime I'm trying to keep chipper for my family, who I'm sure must get fed up of me being dontired I don't want to go anywhere or do anything....

I hope you have a great Xmas xx

Reply

Yes I find the same bad sleep patterns and either sweating or extremely cold. Getting really fed up with it.

Reply

Do you know this is such a relief to read your post because you could be describing me completely. Thinking I was going backwards to the menopause. I will mention it to the consultant next time. One thing that I did mention last time I went was a nasty ulcer on my my ankle, I have had it for 4 months, anyway my hydroxy has been reduced by 4 tablets a week. I still have the ulcer but it is getting smaller.

Reply

Hi, I suffered with lack of sleep, I downloaded Headspace , it will help, I sleep a lot better. Good luck..

Reply

You may also like...