Anybody have worse symptoms after a rest or nap?

[creakykneed]

Since my breathing has deteriorated fatigue has been one of the biggest problems for me, but I have noticed I always feel worse after a sleep or rest on the sofa. I get very shaky, can't concentrate, stagger when I walk, and generally just feel 'out of it'.

I'm on steroids at the moment due to a particularly bad weekend, the result of which being I can't get my daily snooze, but what I used to put down to waking up to early, being in too deep a sleep etc, still got me just from laying down and watching tv.

The mums at school have got used to me staggering out of the car like a drunk (I normally nap before pick up to get some life back for the kids being home) but yesterday I was particularly bad, and without the excuse of sleep. I couldn't talk or walk, was really struggling. Is this just the remnants of my flare up or something I just need to start planning for? I've been on Prednisone 30mg since Monday and I'm much better in general, but as I say yesterday was particularly bad.

It would be good to know if anyone else has these type of symptoms.

Thanks

Sophie x

[pollyjj]

Wow creakykneed that sounds awful, all I can suggest is give the BLF a ring to see if they can help, hope you get it sorted soon.

polly xx

[Hidden]

Sorry that I cant help perhaps you could try the helpline? TAD xx

[longlungs]

Hi Sophie that doesnt sound very good at all,you definitely need to seek help from blf and your doctor,something is not right,do you know what your oxy sats are at all? Takecare and seek advice Sophie let us know how you go eh? Janexx

[creakykneed]

Hi all. Thanks for the replies. I will monitor next week and call the BLF if it continues. I am off to my mum's for half term so she'll have me down her doctors in a heartbeat if I'm in trouble.

Jane, I have no idea what my sats are, don't have a finger thingy. Tempted to get one but don't want to over worry all the time and have heard bad stories about reliability - is there one you could recommend as I might get one as part of the monitoring next week. x

[budgiesmon]

Hi..... I got my Oximeter from e.bay the cost inc. delivery was £16 .99

The firm I used was in London so the Oximeter was in this country and in my hand within a couple of days.

I think they are all made in China these days.It does have the CC standards mark with makers details on the back.

Hope this helps....... J.

[Eve3066]

Sounds like you are losing oxygen when you lie down, on Oximeter could help. They are mostly all the same and quite cheap now.

[helingmic]

Hi creekykneed, Sofa sleep gets your neck all crooked and sore! It does mine!. Also, when you lie down flat or if you crouch, you do lose oxygen.

Ask your pulmonary nurse for a frame you can adjust in bed and put 2 cushions lengthwise side by side. In that way you can keep your oxygen level.

Also make a point to have a proper nap in bed for whatever time you need. I do this without shame and it does refersh me without feeling groggy or fuzzy. I do sleep on a frame, and it has made me feel better. Hope you get help (or your mum will get help for you!)

[creakykneed]

Thanks Helingmic. I don't have a pulmonary nurse, where do I get one of them from??

I have just driven 100 miles to Mother in Law and feel horrid, another 100 to go to get to my mum on Monday. Think I should be in hospital but really wanted to get to Norwich first. I am very stubborn about not going in, so know I must be suffering to contemplate it!

If I keep out of hospital for the weekend I will buy an oximeter on Tuesday

Thanks for all of your replies, 2 hours rest and I'm not gasping anymore, just shaking

[FarmerD]

It may be lack of sleep is your main problem.When on 30mg steroids I hardly sleep at all,I,m on 20mg maintenance dose at the moment and still can,t sleep during the night.Check with GP may get something to help you sleep at night.I have a nap in the afternoon but don,t have your problems although I,m quite breathless all the time,it,s difficult is,nt it.A week in hospital might do you good,settle you down a bit.I,m like you want to stay out if possible but sometimes it,s for the best.Hope you get the chance to enjoy half term,my wife,s a teacher so I won,t lol.All the best Sophie.D.

[creakykneed in reply to FarmerD]

You could very well be right FarmerD. Definitely missing my daytime nap but the 'roids have me too wired to sleep. When I get 'home' and hand kids to Gran I will seriously consider your advice re hospital - just hate the girls seeing me in there. Last dose of steriods tomorrow so hopefully sleep will return. Then peace for all when school is back

[FarmerD in reply to creakykneed]

Might be an idea to ask to come off the steroids gradually,dropping from 30mg to 0 really messed me up,just a thought.Good luck.D.

[suemaz]

Hi When I have been on high Steroids, I have felt like you, could not focus, was unable to stop I was like a coiled spring, even though I was breathless pushing myself all the time, I just could not come down. I had to reduce my Steroids gradually, and am now on 10mg daily. Please ask your Consultant or GP to referr you to see the Respiratory Nurses, they are my lifeline, they never let me down and have helped me so much I just ring them if I need advice or help and leave a message and they always reply, they check all your stats, do breathing tests, walking tests, and I now have just had to have Oxygen Concentrators in the house, and ambulatory oxygen for when I want to go out, so please try to get to see them. I dont think you will be admitted to hospital, as it is a last resort really to try to keep you away from picking up infections ect, passed on in hosps, in my experience you have to be very poorly to take up a bed!. I hope you get some answers, and sorted whilst you have your mum's support.