Tired

[Castle155]

Does anyone else always want to sleep? I feel like all I ever want to do is sleep😟

[GeeAyGee]

Hi Castle155

Tiredness is my biggest issue too, I am always tired with little energy. I have to plan my day so I can do things I need to do and then have a rest before doing anything else. It's not that I want to sleep all the time, more like I feel drained of energy. If I do too much or get stressed I feel really ill and ache all over. I had to retire due to the tiredness related to my ITP. My platelets are around 50 and don't go much above this. When they drop lower I feel much more tired and then everything is an effort. So I try to pace myself and do as much as I can within my limits. You need to try and do your daily activities but don't overdo it. Listen to your body and you can have a nearly normal life! I hope it helps to know you're not alone in feeling like you do and I wish you all the best.

[Hidden in reply to GeeAyGee]

Yes, I too do suffer from tiredness and lethargy, when the platelet count drops so does my energy level. As has already been said, I hope it helps to know you are not alone.

[Castle155 in reply to GeeAyGee]

Hi thanks for the feed back. What drugs are you on? I'm on steroids should be taking eltrombopag but it's been making me feel really il and have stopped for a wk now. I have hospital this wk so will of course speak to them. I have a business to run so resting is hard but I do try to as I feel so run down its like a vicious circle oh to be well but again thanks it does help to know I'm not the only one.

[GeeAyGee in reply to Castle155]

I am not on any medication for my ITP. My GP checks my bloods every three months, or if I have a problem, more often. I was diagnosed with ITP four years ago but I think I had it for quite sometime before that. I worked full time up to two years ago but because of the tiredness and stress, caused by trying to continue as normal I cut my hours. I thought with working less I would feel better but I soon realised it wasn't that simple! I couldn't say when I would feel okay or not, so cutting my hours didn't help when I was having a really bad day. I eventually got early retirement with the support of my GP and my Occupational Health consultant. I am 55 and retired not what I expected! So I do what I can when I can and don't feel guilty anymore when I can't!

[Castle155 in reply to GeeAyGee]

Oh my 55 that's so young but I fully understand how you feel it's so debilitating, on really bad days I'm so emotional which is not good when I deal with customers. Thank god they know me well😃. Was your doctor ok with you stopping medication? I am going to be telling my consultant this news at my next appointment which is Wednesday not sure how they will be. I'm glad that you are able to rest up more nowa days.

[GeeAyGee in reply to Castle155]

I have never been on medication for my ITP, my hospital consultant uses a 'watch and wait' approach as my platelets are low but stable. My GP checks me regularly and I can see the consultant if I have any major problems. Seeing some of the stories of the side effects of medications, I'm glad that they have taken this approach. I think if my counts were more up and down or regularly very low I might have to take medication. I am in the UK, are you in the USA as the approach to treatment seems to be a bit different to here. I hope to be drug free for as long as possible!

[Castle155 in reply to GeeAyGee]

Oh really wish I'd never had any medication as all the ones I've had have given me awful side effects. I'm going to encourage the watch and wait thought with my consultant. No I'm in the uk also in the south. Mine have gone as low as 13 😟. It's really nice knowing I'm not the only one as you do tend to feel

Like it.

[GeeAyGee in reply to Castle155]

If you've been stable for a few months and been above 20 ish, hopefully the hospital will be more likely to agree to watch and wait. Good luck with your appointment and I hope you get the result you want. Please let me know how you got on. Keep your chin up!

[Castle155 in reply to GeeAyGee]

Thanks I will do.

[Castle155 in reply to GeeAyGee]

Hi just updating you on my appointment today. We have agreed to withdraw the medication they weren't happy 😁. Anyway we will wait and see. Thanks

[GeeAyGee in reply to Castle155]

At least they are willing to give it a try! If you're bloods are checked regularly and remain reasonably level and not drop dangerously low, you should be ok. You will probably still feel tired but it's worth a shot if you can stay drug free. Even if it's only for a while.....

Best of luck and all my good wishes to you.

[Castle155 in reply to GeeAyGee]

Yes your right I just want to see how I feel with no drugs, as before all the drugs I didn't even no there was a problem onwards and upwards. Thanks very much for your support take care 😃

[tennissenior]

Welcome to the "World Showcase of Lupus." Yes, we all feel that way but if you give in, you will be doing just that! Get up and start exercising! If you don't - Lupus will rule! That will make your ITP worse and you will feel worse! You gotta fight it!

[Castle155 in reply to tennissenior]

I don't have lupus just ITP. Don't want to give in just sometimes the aches & pains take over

[GeeAyGee]

I don't have Lupus just ITP so the symptoms may be different. When I 'get up and start exercising' I cannot do anything else that day, ot wipes me out. So I have to plan my day and go swimming or for a walk on days I am not doing anything else. Even going shopping or visiting friends and family makes me tired. So yes exercise is important, but you need to balance it with other daily activities and rest. If I over do it can take 2 or 3 days sometimes to recover and I hate feeling like that. As I said before, pacing myself and listening to my body is the best way of dealing with the fatigue that I have found.

[tennissenior in reply to GeeAyGee]

Some of us have both, plus a host of others. You are correct. When you feel tired - stop what you are doing and rest. Just got back from food shopping. Can't even take a shower now....my legs are too weak. The ITP made the fatigue worse than just the Lupus. All of the autoimmune have the same symptoms. Throw in a little nausea and dizziness....we have that too! LISTEN TO YOUR BODY. It tells you when to stop and slow down.

[SoporRose]

I too have the exhaustion even though my platelets are stable and I haven't been on medication for almost two years. In some ways it helps to know that I'm not making up the fatigue, but my body tells me to stop and slow down far too often to allow me to do my work and function in a normal fashion. Like GeeAyGee, I find that exercise, even a short walk, can drop me for two or three days. My weariness is increasing and I'm frightened that before the end of the year I'll be completely useless. My doctors (primary care, haematologist, endocrinologist) all tell me to see someone else (I'm supposed to find a rheumatologist now), but every doctor's visit is costly (I'm in the States), disheartening, and of course tiring.

[Matildagirl]

I also get really fatigued with ITP but I have also discovered I am vitamin B12 deficient .I am getting treatment now ,injections and that has made a difference to the fatigue. Might be worth checking as B12 deficiency can also be autoimmune and once we have an auto immune illness we are more susceptible to other auto immune illnesses.

[ITPGUY]

My platelets stay at about 35,000 and I do not feel tired. I am 73 and that may be why my initiative to get things done is low. I do sweat easily. I walk 4 miles every day and pump iron five days a week using a low amount of weight. I dance three nights a week. I am more active than most people at 73. I do not think low platelets always causes fatigue. An expectation of having fatigue can definitely cause fatigue. You think your way into the problem. The mind is very powerful in ways we do not understand.