ITP and tiredness

I have heard that fatigue is a symptom of ITP. I have ITP and previously I am only tired when I dont get enough sleep. However, i went on dexamethasone for 6 treatments 4 days on every 2 weeks for 3 months. Since coming off dexamethasone(December 6th 2014) I am tired a lot. I seem to be okay after an hour nap, but i am not sure. I do think I sleep 8 hours most nites. Could I be experiencing adrenal insufficiency? Maybe the steroids triggered something? Or, maybe, I am just recovering from the steroids? I hate to think that I will always be tired now due to the steroids triggering an ITP symptom. Do the majority have fatigue?

Fatigue comes along with ITP sometimes, not everyone experiences it.

Dex can definitely cause adrenal fatigue, so it is most likely due to that. You were on a pretty harsh regimen so it could take a while for your body to recover (weeks to months). I don't think it's permanent and actually, what you are describing isn't nearly as bad as what most go through.

You could speak to your doctor about it, but time is most likely the best cure. This is why most people say that the treatments are worse than the disorder.

ITP means your immun system is in constant overdrive. Its a little like people with hay fever that feel exhausted during spring and summer.
In addition going of steroids can make you feel powerless. The steroids push you and activate you. Once this push misses from your body you feel tired.

My advice would be to rest, but also to exercise. Take walks, ride a bike and activate yourself by doing so. In my experience this helps to get over the period of tiredness quicker.

Good luck
Joerg

Thanks for the replies. I seem to have days where i am not tired and then I have days where i am exhausted. I can also feel the dex sometimes too. I know the tiredness is not normal. Thanks for the input. Will I recover from the steroids? Will I make hormones again?

I was also wondering about exercising. I use to be a runner. I am worried that exercising will promote bleeding. Not from getting cut or anything. Just that it gets your blood pumping. Should I not worry? Thank you. This community has been great. Especially Sandi.

Yes, your body should recover from the steroids. It just takes time. Staying active can help that since muscles tend to atrophy with steroids.

As for running, that depends on your counts. Above 50k, you should be fine for that, but it wouldn't hurt to talk to your doctor. One guy here runs races with counts in the 20's.

Hi,

I am a regular runner (about 10km per week during winter months,
20-25km per week in spring and summer). My counts have been constantly
around 25K during the past six months. I don't think that running
promotes bleeding, that's definitely not my case.
You should obviously avoid any contact sport as Judo....

I am not taking any drugs at the moment (watchful waiting).
I took steroids for 3 months in Sep-Nov 2013. It took several months
(maybe 8!) to get rid of tiredness and other side effects of prednisone.

Carl

I was on the same treatment as you with Dex. I've now been in remission for 4 1/2 years and I still get fatigue. I really think that the Dex did something to my adrenal gland. I had it checked some years ago but it didn't show up. Before this, I never had the fatigue. I do make myself exercise to keep my weight down and to keep my blood pressure normal (even though I've had a couple of had falls this last year!); I have osteroposis which makes the exercising hard at times. I run about 3 miles on the treadmill 4 times a week. But, I plan to add swimming again when the weather warms up.

When I was at the last two conferences, one young man who was a runner did have some problems with relapses from long distance running. Sometimes, I think we just push our body too much with the long distance running.

In general I think that sports does more good than harm.
I cycle, run and swim. More cycling than running and more running than swimming.
I also go climbing, skiing and cross country skiing.

My doc was worried once when I had counts below 30 and kept cycling on my mountainbike.

What i try to avoid is very rapid pulse. (I'm sure this is not the right expression, but I can't think of a better one). I try to stay below 150 heartbeats per minute.
My doc once said that constant high pulse can stimulate the immune system and that is something that we should try to avoid.

Depending on how long you take steroids and at what dose it can take up to a year to get it out of the body again.

Keep running, but to run too hard.

Joerg

Joerg,

I'm glad you mentioned that about running. I do like to run, but the first time I had my episode of ITP (2006), I was running 3 miles 6 times a week. I ended up with a large accumulation of blood below my knee along with the petachie. Since then, I was swimming for some years and only running 2 times a week. Now, after having rotator cup surgery, I am running about 4 times a week again. The young man that I met was running the long distance races; I really think this was just a little bit too much for him (say, about 25 miles?).

Thank you everyone for your input. I have not ran for a year and i am slightly out of shape. So, I would like to get back into running again(I miss it too). I dont plan on running 28+ miles per week like I use to. I guess I will start back slow(2 miles 3 times a week), and increase slightly and wait and see what happens. I do plan on eventually running 7 miles 3 time s a week. I think thats the most I need to run. Thats going to take time though since I havent ran in so long.

I think you'll be fine starting out with 2 miles 3 times a week. After I had my rotator cup surgery (Feb.2), I ended up with a "frozen" shoulder; so, I was doing a lot of different exercises that didn't affect my shoulder (no swimming!). Now, I am finally back to running more (just the 3 miles at a time). I am tired quite a bit like I mentioned before. Sometimes after my hour or so of exercising, I am almost ready to hit the bed (just at times!). But, for me, I really need to exercise to keep healthy--and to keep my weight down.

After my last relapse over 4 years ago, I went to the gym right away to get rid of the Dex from my system. Good luck to you--and it's a good way to start the New Year.

I was diagnosed 6 months ago. I have been shattered for the last 8 months. My consultant told me it is due to lack of serotonin caused by low platelets.

Hi mrsb,

I've never been sure exactly what the cause is (my platelets are now normal), but I continually feel fatigued. I will say it is worse when the platelets are low (mine were about 10 or below at times). After 8 1/2 years, I do try to push myself to do things. Your body will adjust after a while. And, it is good for you mentally.

Great to hear other keep doing sports too.
I need too to keep my weight down. I even try to be active during steroid times.
That and a strong protein diet helped me to "only" gain 6 kilos during 25 weeks of steroids.
I also think that it stabilizes my counts. Something that my doc thinks is complete BC.

But I need longer times for rest than before ITP. And rest and sleep is in general more important to me.

Cheers,
Joerg

Along with ITP I also have CVID. I suffer from fatigue. Some days I feel so tired I could just drop.

My immunologist described to me this way.

For most people their immune system just strolls along with the occasional bump where as people who have a autoimmune condition it more like climbing an endless stair. It's this strain which causes the fatigue.

Fatigue interests me with ITP, I would say it impacts me.

I was diagnosed in 2012, my counts have been all over and I last crashed (count wise) in June last year, I came off steroids in August and so far I have had no further bruising / bleeding. However, since this all started and since being off steroids I suffer bouts of almost debilitating fatigue. I am fit and I run, mainly swim and can easily do 60 laps of a pool before work, but then some days I can do just 5 or 6 laps and I have to get out of the pool. I assume that it's this illness and when I feel exhausted I treat it as a sign I might be on a downer with my counts! and I look after myself by ceasing exercise and resting! literally in bed!

I also run, and when my counts went really low last year, my Doctor advised me to watch running with such low counts and guided me to swim more as a low impact exercise. I did avoid running while I was treated and only do it moderately now.

When I look back prior to my worst count drop last year, the week leading up to the event, I was in bed a lot feeling too exhausted to get up, and going for a lie down and sleep the minute I got in from work!

It interests me that there has been disagreement over fatigue and it's links to ITP, I feel at 40 I should not get as fatigued as I have done close to and around bouts of this illness.

I don't know that there have really been disagreements. 1) It's hard to prove a link because some people just don't feel fatigued with ITP. 2) Logically, low platelets should not cause fatigue. 3) Fatigue is subjective.

I'm not saying people with ITP do not or should not feel fatigue. When my counts were low, I know that I did. I felt like I would keel over just doing normal things. Some people feel the same with low counts as they do with normal counts, so it's not always an issue. Many times the treatments can cause it and not really the counts, but everyone is different. Autoimmune disorders do not hit everyone the same, and sometimes it can be something else that is causing it, such as a vitamin deficiency or some other unknown disorder.

Some people feel fatigue after running a few miles, after working all day or after going out at night. For me, fatigue is having to sit down for an hour after showering; when going grocery shopping is all I can do in a day, or feeling so weak that it's hard to stand for 10 minutes and cut up some potatoes for dinner. Fatigue is such a common complaint and nearly everyone I know complains of it, even seemingly healthy people. I never even bother saying it to people I know because it seems meaningless. I think many doctors hear it so often that it isn't even a valid complaint any more.

As far as the ITP medical world, it is being acknowledged more and more as time goes by. Doctors are beginning to validate it with their patients. Even if it's not attributed to the low counts themselves, they are believing that the autoimmune response can be the cause.

That's really interesting. Sandi, do healthy people actually talk of 'fatigue'? It's not a word I'd even heard of before I had it. And it took a doctor to tell me what my sort of tiredeness really was.

Tiredness and fatigue for me are totally different. Maybe people just need to correct their terminology.

The main reason that I mentioned my fatigue is because before ITP--I had too much energy! I could go with 4-5 hours of sleep and work all day (in my 50's) and still run 3 miles after work (and driving 2 1/2 hours going home). I definitely feel different and my husband does notice it. I was hyper all the time; now I have to push myself (which I do--I don't give in to it). And, I felt different right after my first bought of ITP; then, the second time around, the fatigue was even worse.

Ann:

Back when I worked (2 years ago), my co-workers always complained of fatigue and being tired. It was a common discussion at lunch. Family members also talked about it all the time. It became such a regular discussion that I believed that what I felt with ITP and Lupus was normal. People are busy with stressful jobs, running kids all around after work and maintaining homes...yes, it tires you out. I did all of that too at one point, but was able to keep up with it. This is where the subjective part comes in. There is a definite difference between 'tired' and 'fatigue' and there are obviously different degrees of fatigue, but the word most used to describe it is 'tired'. It's like an epidemic and everyone gets lumped together. Common phrases were "I'm so tired", "I really need a nap", and "I want to go home and crawl in bed". I just listened because what can you say? Certainly not, "I'm more tired than you and you don't really know what that means".

Here is an article about it. There are many. It seems to be rampant, at least here in the US:

When energy expenditures outstrip restorative processes, FATIGUE is the result. Whether it be mental exhaustion, physical depletion, or a combination of the two, fatigue has become one of the most significant health challenges facing people of our modern world. In fact, in the United States fatigue is the single most frequent complaint patients make to their primary care physicians.

Lack of energy, a.k.a. being tired all the time, that seldom-fatal scourge of modern civilization, is killing us slowly by continually detracting from life’s everyday enjoyments, as well as limiting on-the-job performance. Those with a serious lack of energy are relegated to “life in the slow lane,” like it or not!

Fatigue is caused by an assortment of factors, including:

lack of sleep
lack of adequate nutrition
mental (emotional) stresses that are largely part and parcel of modern life
an under-active thyroid
simple boredom
a decline in bodily systems due to aging
the body’s reaction to disease processes

Whether it be for a short stay or an extended visit, at one time or another virtually every person living in contemporary Western society is plagued by this insidious condition. Over 60 million Americans currently suffer from moderate to severe daytime fatigue.

www.naturalsolutionsradio.com/drcorner/fatigue-new-health-epidemic

DeeDee:

I remember the days when I had too much energy too! I'd work all day, run my kids to their activities, make dinner, help with homework and do laundry, usually getting to bed around midnight. A lot of times I'd come home from work and paint a room or stain my deck until dark. I had a social life. I had many balls in the air and juggled constantly. Yes, I was tired but I also felt driven and loved to keep busy. I look back now and shake my head...I have no idea how I managed all of that. Getting older does make a difference, but if I compare myself to my friends, I know it's not age at all.