I plod along nicely... taking medication to keep my platelets in healthy numbers... looking for a job to return to the workplace... telling everyone I'm fine and dandy (which in the bigger scheme of things.. I am...)
BOOM... on Thursday I could hardly move... and I feel as though someone has poured lead into my limbs. Not as bad as fatigue.. but not a kick in the pants off it...
If I didnt feel so tired.. I'd feel sorry for myself...
Hi Pollyangel
I'm sorry to hear that things have been more difficult . There is something of an unpredictability to the fatigue element of the condition. We've watched our daughter do perhaps more than she should one day and be fine the next and then having done little one day only to be wiped out the following.
Do you see a pattern in how you feel?
Hi Bellazac
I know that if my count is below 40, fatigue is one of the main ailments I have. My count hasn't been that low in about 9 months... and at last count it was 145. I'm hopeful that this is just a blip... but it's taken me totally surprise (you quickly forgot how horrible and debilitating fatigue makes you feel)..
Thanks for getting in touch... x
I've just spotted your post about Eltrombopag. How have you found it? Bella took her first tablet this morning. Can't quite get my head around the best time of day to give it to her given the dairy product element. Any advice ? X
I usually take mine around 9pm.... usually with a peppermint tea (rock n roll lifestyle... lol).
I don't drink at lot of milk... and any dairy I have is normally during the day. Eltrombopag has worked well for me... hopefully your daughter will have positive results xx
Pollyangel,
The fatigue is, indeed, devastating. My counts have been solid (between 100 and 190k) for almost four years now, but the fatigue/exhaustion knocks my feet out from under me more days than not. It's hard on me and on everyone around me. Sigh. I hope yours has passed for now.
Ruth
Ruth.. thanks.
I've not had a period of fatigue in months... and you forget just how rotten it makes you feel... not just physically but mentality too. Im starting to feel a bit more human this morning...
Hi, I can completely empathise with this - I was feeling good all week - not too tired - managing to pace myself - then walking back from a friends house my legs suddenly felt like lead I wasn't sure I'd make it home and had to spend the rest of the night on the sofa and cancel my plans to go out. It's the unpredictability that's frustrating and not knowing what the triggers are. It does pass though if I get lots of rest - hope yours does too.
Hi, everybody! Fiona 123 just caught my attention about what are the triggers. Does anyone feel what some triggers are that causes the tiredness or aching ❓
Thanks❗️
I've been a bit stressed over the last few weeks. I think this is my bodies way of forcing me to stop....
Part of what makes the fatigue so infuriating for me is that I can't figure out reliable triggers, can't find a way to avoid the weariness. It's not tied to my counts; they've been stable for four years. The truly debilitating fatigue set in after my Rituxan treatments in 2013. The medication worked well for my ITP, but the exhaustion never went away, and I now have a diagnosis of ME/CFS as well as ITP. There are some things I know — walking more than half a mile (and it makes me cry and rage that that is all I can walk because I don't drive and NEED to walk to get places), certain kinds of emotional stress, too long on the computer (another major problem since I have to work on one) — but too often there is no proximate cause. I'm sick of trying to be kind to myself, of having to explain to clients why I work so slowly, and having no reasonable expectation that the fatigue will ever go away.
Thanks for putting up with my venting.
Ruth
Rants are allowed...
Hugs to you x
Thanks Fionn... Feeling a bit better today...
Hi pollyA , I think half the trick is acknowledging it's fatigue you have and just resting. Ploughing on through doesn't work too well I've found. Sometimes if my platelets aren't too bad, I thinks it's just the normal ups and downs of life, or sometimes just carry on because of life. Not good idea ! Hard I find for those around me to really know I'm not just lazy. Hey ho. !,have a chilled day. I am watching Johanna konte play , relaxing x
Thank you... x
I really have to pace myself and when I need just don't do much been doing essential oils for my aching joints and aromatherapy to fight the depressions and fatigue
I know... I'm normally more careful too... but for the last 2 months it's been non stop. I thought I was invincible... lol... maybe not...
I had a triple whammy last year of shingles, followed by a stinking cold, and then very low levels of Vitamin D. Once the latter was corrected, I felt so much better. Fatigue isn't always ITP related, and I think we all forget that at times. Get your Vitamin D levels checked!!!
Jeez... that was a triple whammy...
After a few days resting I'm feeling much better... I think I've just overdone it...
I actually started taking vitamin D... I'm sure someone on here mentioned taking it... as an additional boost for the immune system...
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