Do you suffer from tiredness/fatigue ... - ITP Support Assoc...
Do you suffer from tiredness/fatigue and do you think it is linked to your ITP ?
AnthonyHeardAdministratorITP Support Association131 VotersPlease select all that apply:
Fatigue i think is also caused by Low Haemoglobin levels as the meds that we are taking for ITP tends to lower Haemoglobin thus low oxygen n thus fatigue. i have gone down to levels of 11.5 and would feel like sleeping all day
Yes a very good point. Also platelets carry the substance Seratonin in our bodies and that is the chemical that gives us our feeling of overall well being so a low platelet count will also impact on that too.
I do not take any medication for ITP, but I do suffer from fatigue/tiredness. Everyday I feel tired & weak, which I believe is related to having ITP.
This is the same for me I been going on f the last 25yrs
I never had cronic fatigue until I had ITP.
What makes us tired when we get a cold or flu?
Our bodies are constantly fighting an 'illness', wouldn't the ITP create the same effect as a 'real' illness...
I also have fatigue. I not had any medication to treat my ITP.
I noticed little red spots appearing on my skin on my breasts and arms. And I felt constantly warn out and wanting to lay down. After I go to the shop, or doing the laundry, I get lightheaded and drained. I'm not aware of my levels but I told myself to wait untill I see rigorous bleeding before going to report it. And after a few days the red spots seems to fade. Maybe the ITP was surfacing. These days I feel patches of pain on my head as if I bumped on various parts of the top of my head. And that is impossible. I hope it's not blood patches. The thing with having had ITP, is I'm afraid of my blood now. I see it every time I brush my teeth and my swollen gums and I hate to brush my teeth of to look at my gums,because I'm afraid it's the ITP returning.I hope I'm not getting obsessed with the ITP.
I find when I have the red spots, lightheadness,and bruising my platelets are low then the fatigue kicks in I am now in tune with my ITP and i know my symptoms it is a learning curve and have I learnt that ITP can show different symptoms with everyone.
Does anyone else find their Consultant to be very dismissive your fatigue? My new Consultant refuses to take my fatigue seriously and that it is linked to ITP, has anyone had the same experience? Thanks
Yes BUT more research has and is being done right now to boost our claims. Please do have a look at the recent item I added to my ITP blog on new research projects...see the following link if you haven't already had a look at it here is the link...
If you click on the link and scroll right down to the bottom as it is the last episode that I wrote only 2 weeks ago....
It is the Chapter called I've Been Meaning to Look Into That in which I highlight 3 new ITP research projects recently announced, one of which is looking at fatigue/tiredness.
Also useful if you wish to show your ITP consultant or specialist is the following link which is to the ITP Support Association page which lists the common symptoms of ITP, one of which is FATIGUE. The link is itpsupport.org.uk/index.php...
Thank you so much Anthony that's really helpful, I'll have a look at everything and make sure I take it with me to my next appointment. It's difficult as this Consultant has just taken over my case, previously I had the same Consultant for over 4 years so was sympathetic. Are you aware of anything to help improve fatigue? I'm only 30 and it's so draining sometimes it just feels like an uphill battle with fatigue and itp. Thanks
I am recently diagnosed one of the symptoms leading up to this was feeling more tired, fatigue aswell as the bruising, bleeding gums, rash. I ended up in A&E with platelets of 3. On > prednisolone but still have days were I come home from work completely whacked out. I really believe that fatigue is linked to this condition. I'm staying positive and refusing to let ITP define me, although only just embarking on my journey with this. I just keep thinking it could have been some thing much worse. 👍
My platelets are currently normal but I still suffer from extreme fatigue which comes on suddenly with little or no exertion. Doctors blame both ITP and steroids. I have been like this since first diagnosis of ITP over 2 years ago.
I had a nose bleed yesterday and bruising today I got sent home from work I was shattered i still am so I put it down to my itp.
Absolutely, YES !
Yes
Have had to retire from work as constantly worn out, I would find myself shaking with tiredness, but my consultant does not link it to my ITP.
Hi Hilary, I had to take Ill health retirement too 4 years ago... I was exhausted all the time and couldn't function properly at work. I cut down my hours, was given different lighter work with breaks whenever I needed them. I was still unable to manage, until one day I was getting ready for work and I started to cry and couldn't stop... I phoned work (still crying) and told them I couldn't go in. I phoned my husband ( still crying), who came home and took me straight to my GP surgery (still crying). I was signed off work for a month with severe stress. Eventually after several failed attempts at returning to work, I retired on ill health grounds due to ITP related chronic fatigue. So next time you see your consultant tell him about me and all the related research on ITP and fatigue, before he tells you he doesn't think it's linked.....
Hi there! Yes, I do constantly feel tired, sometimes totally exhausted. I think it is linked to my itp or is due to lack of quality sleep due to the itp medication. I am taking myfenax (500mg twice a day), and for me the side effects are similar to steroids but without the mood swings. I find it difficult to get off to sleep and wake up a few times during the night. However, my consultant thinks it is more likely that my fatigue and poor sleep are due to my age and menopause, ( I am 53 ).
Thank you very much for all the very interesting replies. It is clear from my 11 years of ITP that most of us are convinced that Tiredness/fatigue is absolutely a symptom of our ITP. I have written up a full account on the subject as I see it on my ITP Blog at anthonyheard.simplesite.com. If you click on the link then scroll all the way down to the bottom it will take you to the article entitled Fatigue and ITP.
I said yes, but not because of ITP because my ITP has been in remission for over 4 years, though I still do get tired. I have other health issues / take medications which may be a factor.
Fully understand your replying the way you did Artyjoan. I am no longer getting any issues with fatigue/tiredness from my ITP but like many other folk who take immune suppressing drugs like Prednisolone and Mycophenolate Mofetil they tend to turn you into an insomniac. So my tiredness comes from interrupted sleep, albeit I have now worked out that if I take my Mycophenolate immediately before going to bed it does not wake me up. So I take 500mgs in the morning one hour before breakfast and the other 500mgs before going to bed. It seems to work ok but obviously other people reading this may find something that works better for them. So much of this is still trial and error !
Itp can also be linked to MGUS can cause Fatigue bruising nose bleeds joint pain ect
I am on treatment at the moment for Low Platelet's, I was feeling very Tired and Fatigued in the weeks leading up to finding out about Low Platelet's (a word I never heard until my bloods were done)
My Platelet's over a month and a half fell almost every week by 6.000, and at one stage from from 38.000 to 23.000 in a week, during this time I got bad bruising and was very tired and fatigued.
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