I've hated the bruises the size of saucers that take months to go away, the blood blisters in my mouth, the bleeding from every orifice and the pin pick rashes all over my legs and neck, but by far the most depressing and disabling symptom of this condition, is the fatigue!
I find it has totally changed the way I can live. It's a tiredness that simply wont go away with sleep.
My platelet count yo yo's so much and when it's high I can feel totally "normal" again and make plans and look forward to things; as the count plummets all plans have to be ditched as I can barely get out of bed.
A 4 mile drive to Lidl to collect a leg of lamb on Thursday, resulted in me dissolving in tears with sheer exhaustion.
I'm told "tiredness" is one of the symptoms of this condition - does anyone else experience this to extreme, and if you do, any tips on coping?!
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Sarah-Fitzgerald
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I have constant fatigue. My count is between 100 and 130. And back pain, migraines, my teeth hurt... there’s no telling what this condition will do. I had no idea how important platelets are until ITP.
ITP sucks 'eh? I'm sorry to hear of your symptoms - thankfully I don't have migraines or painful teeth - in fact, I don't actually have any physical pain, other than the extreme fatigue which is disabling and causes me to feel hopeless and depressed.
However, I've just discovered the possibility of a link between past trauma (sometimes decades old!) and physical illness. An undealt with issue in my life has come to light and it seems that sometimes the "coping" mechanisms we use internally to cope with the fear and distress trauma brings, can cause physical conditions to manifest which are difficult to diagnose and treat.
For me, this is worth exploring, since I hate taking medication (especially as it seems to have limited effect), although of course I will. But if I can be free of the effects of trauma, by taking a look at the emotional elements of my life, then it has to be worth it, and who knows, it may even go on to cause the remission of ITP!
I'll do a post on this soon. Happy to hear your thoughts on this, if you have any you want to share!
Hi Sarah-Fitzgerald, when my platelets drop below 20K I have increased bruising (bleeding), fatigue, extreme irritability (PMS on steroids) and depression. My bruising is significant enough to drop my hemoglobin which means that I have fewer RBCs to provide oxygen to my cells, that decreased oxygenation causes fatigue. What is your hemoglobin and platelet baseline. Platelets are involved in the transport of Serotonin, the lower count the lower the amount of Serotonin available which leads to depression. Patients with ITP are unable to take antidepressants as they interfere with platelet function and we are “ stuck between a rock and a hard place”.
What treatment regimen are you on, how often do you have blood drawn? I’m on weekly labs and Nplate injections to maintain my platelet count between 30 to 80K, feel best between 50 to 80K. Last month I droped to 10K, I don’t function well at this level, in addiction to extreme fatigue, I cannot think clearly which leads to depression. It’s a vicious cycle I’ve been unable to break. Any suggestions? Be well
I have weekly blood tests, and am now on a combination of Mycophenolate Mofesil and Eltrombopag. As of yesterday, I am trying a new combination of dosage.
I totally sympathise with the not thinking clearly! I got lost on my way to work one day! I haven't actually been able to work properly for the past 4 months as blood counts have yo yo'd so much and I've been floored!
I'm feeling a tad better this week, count is up to 22 and although I'm pacing very slow, I'm not a breath away from tears all the time - yay!!
I'm exploring some emotional stuff that has surfaced recently, as I'm learning that unresolved trauma can take a significant detrimental toll on our physical bodies, manifesting all kinds of physical symptoms. It might explain why ITP is so idiopathic and why everyone reacts differently to the symptoms and the treatments! If it helps get my life back, it must be worth looking at!
I,too, have had extreme emotional trauma and have been diagnosed with PTSD. I also have fibromyalgia. It’s entirely possible that emotional trauma has caused both conditions. Thanks for your perceptive post.
I have been put on amla, or Indian gooseberries, by an Ayurvedic health practitioner. I do believe it helps. Following wing this websites food guidelines has been most helpful. I love wine with my meals and now only indulge occasionally. Coffee, ditto.
Hang in there. My thoughts and best wishes are with you.
Fatigue is a permanent feature of ITP. As the platelet count yo-yos, one goes from feeling great to totally down in the dumps. The only way to fight this I find is to try and keep the platelet as high as possible at all time. Recently, after a lot of research I have found that the graviola fruit helps platelets and is quite a ‘wonder fruit’. It has helped me to keep my platelets higher than normal. You may want to try this. With this, the incidences of total fatigue and depression have come down.
Your symptoms sound exactly like mine. It's verydifficult dealing with the fatigue. I also find exercise makes it worse. I find vitamin supplements do help especially vitamin D, B12, magnesium and Zinc. You have to learn to pace yourself and not do as much all at once - It's extremely frustrating.
Thank you for your response - sorry for the delay in mine - I've had no internet for 3 days!
Vitamin supplements sound great! Wouldn't it be great if the NHS could prescribe a week in the sun so we could top up on Vit D!! Beautiful sunny day today - if only I had the energy to go for a walk in it!! Think I'll sit and have a cuppa in the garden and let those rays revitalise me!
Read an article recently about B12 deficiency - it's quite scary how the lack of this vit effects us and it's not possible for everyone to absorb it via food or tablet supplement. Some folk need injections and our medical system only considers us deficient at counts below 150 whereas in other areas of the world, they treat folk with a count below 400!
It's worth a try - I'm going to get a good supplement and see what happens.
I've found the best way to absorb magnesium is to take a warm bath in epsom salts! It's very relaxing and is absorbed through the skin while you chill out in the bath - wine, candles and a good book, (or husband to wash your back!).
I feel your pain I also have constant tiredness, joint pain bruises all of it and quite frankly it gets me down terribly wish i had the answer. Chin up happy Easter x
Easter is all about death and resurrection and I really want to put to death this flippin' ITP and resurrect into a healthy state so I can carry on living the life I want!
An unresolved issue of past trauma has come to light in my life recently, and I am exploring the possibility of unresolved emotions playing a part in my body crashing! This doesn't necessarily make any sense medically, but since the medicine seems to be lacking, (and I'm not encouraged by all the stories I'm reading on here that the medicine really holds any long term satisfactory answers) I'm going to give it some time and explore my emotional state.
Apparently living on adrenaline for long periods can have a detrimental effect on our physical bodies and often if one ignores or tries to "cope" through trauma without giving emotional release to the fears etc that trauma produces, we actually live on increased levels of adrenaline!
Interesting, who knows ..... at least it gives me something to ponder on and investigate other than how rubbish ITP makes me feel!
I sympathise entirely with your predicament. I too have these fatigue episodes; I believe most of us do. However, I seem to remember a conversation in which a haematologist suggested that extreme fatigue could also be the result of something other that just thrombocytopenia e,g, ME. Perhaps you could ask your GP or your haematologist.
Thanks for your reply - sorry for delay in response - our router became faulty and we have been without internet for past 3 days! Surprising how much one depends on it!!
Saw my haematologist yesterday and asked about ME. He seemed very certain that the fatigue I experience is down to the ITP and caused by the low platelet count and accompanying low haemoglobin which follows after a heavy bleed.
The fatigue disappears when my counts are heading up towards 150 - which has been rare, but I am now trying a new dosage combo, to see if we can increase and stabilise my count - I'm hopeful!
Count was at 22 yesterday and already I can feel the difference in my body from last week when count was only 9. Still have to pace very slowly, but the constant tears aren't flowing!! Yippee!!!
I am now exploring another, not medical, option that may possibly go someway to explain the extreme fatigue. I'm going to post about it at some point - let me know what you think!
I too have the fatigue even though my counts have been around 190k for almost five years now. I have been given an additional diagnosis of Myalgic Encephalopathy (Chronic Fatigue Syndrome) and cannot find a doctor who knows how to help me deal with it. It's ruining my life. How tied the ME is to the ITP I can't tell. I didn't have it until I had a course of Rituxan back in May/June 2013. The medications I have tried to treat the symptoms have either been of no use or made the exhaustion even worse.
Oh Ruth! I'm so sorry to hear this! Exhaustion is so draining and does make life seem hopeless. I have discovered that sometimes we live on adrenaline, due to a past trauma - it could be something that happened years or even decades ago. Living on adrenaline as a "coping mechanism" to continue living life "normally" while concealing the cause of trauma - even for relatively short periods, takes it's toll on us physically. It has come to light in my own life, even over the past few days, that I still have undealt with past emotional issues that may be contributory to the extreme exhaustion I am now experiencing - my body kinda giving me an alarm call to deal with some of the internal "stuff" that effects the way I have lived my life - at full speed - until now when I have simply crashed! Who knows, if the meds aren't having an effect, maybe the extreme fatigue you're experiencing is connected to a valid emotional need? I have no idea if this will help - but please hear that it is in no way meant to offend!
You are not useless, and there is purpose in and for your life. You will have a unique set of gifts and talents within your character and personality, and being useless isn't among them.
What are your interests? Are you arty and creative? Do you cook, write, sew, build, care for others, administrate, serve, initiate, listen well? What are you passionate about?
It seems to me ITP (and maybe ME) robs us of who we are and what we do - let's not let it! Within the fatigue, try to remember who you are and what you're good at - write it down and maybe each day remind yourself of your unique blend of attributes and aim to do one positive thing in connection with them.
Also, maybe consider if there is anything in your distant or more recent past that has caused you to be fearful and traumatised that hasn't been addressed and see if you might find a way to address it.
I am going to try to look at the issue that has come up in my life - it's going to take some courage and energy, but if it does turn out to be the thing that is making my body turn in on me and rob me from the life I want to lead, then it'll be worth dealing with!
Thank you for your kind reply. The role you describe adrenaline playing is interesting to me since Prednisone — often the first go-to medication for ITP — wreaks such havoc with our adrenaline production. I wonder how often it makes long-term recovery worse instead of better.
There is nothing in your message that could possibly be offensive! I have been in therapy for quite some time (years) to deal with the traumas in my life. They are mostly relatively low-level issues that became traumatic simply because they have persisted for so long. The fatigue and the depression feed each other, though right now I'm pretty sure that the fatigue is my primary problem. But the more tired I get, the more down I feel, which makes me more tired… I'm sure I'm not the only one who feels this way.
The fatigue prevents me from pursuing my interests and fulfilling my commitments. You write, perspicaciously, that "It seems to me ITP (and maybe ME) robs us of who we are and what we do," and I have tried not to let these conditions do that, but haven't found a work-around yet. I hope someday I will.
I think that your are spot on to realize that your body is sending you a message and that rooting out what emotional needs are not being met will and then finding ways to get them fulfilled will help a great deal. Please do keep us updated. Your messages are both compassionate and a joy to read.
I dont feel tired or anything even with counts below 10k but i feel my body is burning inside if counts are below 20k. It feels like fire inside and if someone touches me, they feel i have fever.
I am on Promacta from 6 months and counts are going up and down. Highest being 250 initially and Lowest being 14 a month ago. Dont know when it settles above 20 on an average. Hoping soon. Dont want to just keep hopping between variety of medications.!!
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