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Newbie hi and a question! 11 years 9 months ago #2503

  • Tired Chris
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Hello all!,

First post, just been diagnosed in the last few weeks - all feels a little strange.

I went to the doctor in October last year as i hadn't felt great for a good few months (a year??!), totally shattered all the time and more worryingly i was as tired when i started to exercise as i was when i had finished!!.

Haematologist was fantastic and explained everything (including fatigue). I have a fairly stable count between 80 - 90 and feel a little phoney looking at the kind of numbers on here, i am still very tired much of the time and am worried that this will only get worse the older i get. Being a fairly youthful 37 with a good diet and an active life all this has come as a massive shock.

Did everyone feel this way???.

Much love,

Chris

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Re:Newbie hi and a question! 11 years 9 months ago #2514

  • AmeliaP
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:) Dear Chris,

I am twice your age and this started for me in October 2008. First of all you need to start thinking positive and get the grip with a better attitude. This is something we all are dealing with and it is not going to go away. I thought mine would go away after high treatment of Prednisone and the IV Hemaglobulum, in the hospital for a week, and a bone marrow test. Listen to me, everyone has a story, someone worse than you.
Think about your eating habbits. Try and eat organic, watch your sodium intake, stay away from dairy. I take a multi-vitamin and an Omega3 which helps build the immune system. Get some or make some juices that help the immune system. Eat spinach, strawberries, mushrooms. You can check out food s on this website.

With this disorder you can't feel sorry for yourself! Keep readin these post and you will see what I mean.

My best to YOU and everyone who has to deal with this! May the LOrd above watch over each and everyone!

Sincerely,

Amelia/CT-FL(snowbird)
Amelia M Petre

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Re:Newbie hi and a question! 11 years 9 months ago #2516

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi Chris. This isn't a "get worse as you get older" kind of disorder. Counts can go up and down very quickly, no matter what age you are. Age has nothing to do with it. I was diagnosed at 50k and within a few weeks, I was at 8k. I was 35 years old then. Sometimes counts drop due to a medication, illness, herbal supplement....there isn't any way to know what will cause a drop or what won't. Everyone is different.

Having ITP isn't a picnic, but not having to treat is great. The treatments are worse than the disorder sometimes and come with a slew of side effects that make you feel worse than before you started. Your counts may even rise on their own at one point. It happens.

Stick with us and learn.

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Re:Newbie hi and a question! 11 years 9 months ago #2522

  • NatalieM
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Oh Chris,

First, take a deep breath. Realize that you're going to be fine. You have low platelets. There are much worse afflictions out there. Be glad that you only have ITP. As we all know, it can be terrifying, confusing, and leave you feeling hopeless. Let's look at the positives: You have an awesome count. Some hematologists wouldn't even treat at that number. Actually, most, I would say. Also, as Sandi has said, the disorder doesn't worsen as you age. For many it gets better or goes into a remission, especially considering that new treatment options are opening many doors. If it got worse as we aged, I would be in big trouble because I'm only 24! One unsettling fact that you'll have to realize is that you can't control the number. This was my biggest challenge. Now, let your recovery begin and begin focusing on what you can control! Don't let this pain in the ass disorder rule your life. You can still be YOU and have ITP. You will come to know this as you go further along in your disease. I tell you this because a year ago I was in your shoes (although my count was much lower than yours is currently!). I felt lost, sad, confused, and felt as though I had been betrayed by my own body. Like you, I did everything right, so to speak. Take comfort in knowing that it will get better and you have a place that you can come to rest your worries. All of these people on here helped me so much to get through that tough time. Don't be shy, if you have any questions, share them with us. I'm still somewhat of a rookie myself, but some of these people have been living with ITP for a very long time and have lots of helpful hints to share with you! Good luck!

Natalie
*Here's to high platelets!*

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Re:Newbie hi and a question! 11 years 9 months ago #2532

  • Katie
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Hearing you have ITP for the 1st time can be pretty scary. It was very emotional for me. I just couldn't acept that it wouldn't go away. I was 27 when I was diagnosed. Through time, it became much easier to deal with. Educate yourself and learn to befriend this website. It helps so much to talk to people who understand!

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Re:Newbie hi and a question! 11 years 9 months ago #2540

  • Bunnie
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Welcome to the group Chris. Autoimmune diseases come in all sizes and symptoms, so never feel that you have to feel phoney if your counts aren't as low as someone elses. We'll rejoice with you that you don't have to treat as all of the options have some associated costs in terms of side effects, inconvience and/or dollars.

Look up Gort's response to the post titled "33 Y/O Male with ITP, Intro" in the Newly Diagnosed & Frequently Asked Questions thread where he reminded us all that the new people should all get some time to freak out and be human. Then he outlines a good plan to move forward.

Answering questions on fatigue is always tough because we all have different thresholds where we assign the cause to our platelet count. For me, it's typically that I need a thyroid med adjustment or to better control on my sugars if my counts are above 30. For others, they are simply feeling the toll of their bodies internal war with autoimmune disease and sometimes it's a minor skirmish and others full out offensives. There are literally dozens of underlying conditions that can cause fatigue. Some do experience fatigue at the levels you're at, but as extreme as you're describing yours, it might be worth doing a bit more exploration. Since ITP is typically a diagnosis of exclusion, they probably did a whole battery of blood draws to get to your diagnosis. Ask the doctor for a copies of your results. Check your potassium, vitamin D, and Vitamin B levels. Spend some time with your family doing a history of known health issues. If you have a prevalent trend like mine does with thyriod, do some research on other typical symptoms and if your experiencing some of them, then check to see if you were tested for it and if your near the end ranges or outside the "normals". If so, you may want to discuss with your doctor addtional testing. Do a gut check on whether you believe you're experincing some depression, if so discuss how that might be contributing to the fatigue with your doctor and what options you could take to deal with it.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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Re:Newbie hi and a question! 11 years 9 months ago #2543

  • Angel85
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  • What we have is now & right now we have each other
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I think everyone here knows ITP sucks, but sadly it is something that everyone here has to deal with and it is better for yourself and your loved ones if you deal with it in a positive manner. You can have days where you feel sad and sorry for youself, just don't let yourself feel that way all the time. As someone else said ITP is not as bad as other medical conditions, you can find ways to live with it. Your counts are fanstastic especially if your not on treatment at the moment, i am never above about 20 or so without treatment and don't feel phoney because they aren't as low as some peoples here. Instead feel lucky and happy that yours at at a level where you can still do normal things and not worry as much. We are all happy for you, we want everyone here to have lots of high platelet counts, so don't feel bad about that.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:Newbie hi and a question! 11 years 9 months ago #2566

  • server
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  • newcreationchangingdaily
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Hello Chris, welcome.
I'm still in the same boat as you, kinda. Though I'm getting closer to shore! I was diagnosed on February 11 2010. I went to gynecologist for female problems, mentioned to him that I bruise easily, he did a CBC, called me later in the afternoon, as I was getting ready for work and said "You have ITP and your doctor may want to admit you to the hospital!" I said.....huh??? It's been quite a journey since! There has been so much good advice given here, even some new stuff for me! (thank you all.) I'm slowly learning that it's gonna be alright. There are some adjustments for me, ie working at my job and even here at home. My count hasn't been above 38 since diagnosed. Gotta adjust my attitude about things and how I used to do them, but it's been all good. One thing that was a huge revelation to me only a couple of weeks ago....ITP will not be the cause of my death. That was a relief for me.
Looking forward to hearing more from you.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:Newbie hi and a question! 11 years 9 months ago #2606

  • Tired Chris
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Thank you all so much - i have been allowing myself a little freakout recently!!.

I suppose like most people this was pretty out of the blue (and i know full and well that the symptoms i am currently presenting may not get any worse - i may even start to feel much better!). Having a mass of information and support here is a brilliant as there seems to be an awful lot of speculation in and around the net.

I have spent some time lurking around the forum over the last few days and think you are all really cool for the advice and support you give B) .

Thanks for the replies,

Chris

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Re:Newbie hi and a question! 11 years 9 months ago #2656

  • ianroom
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chris you and i are in the same boat, im 15 and super behind in school due to hospitallization. and the prednisone is scary stuff. just gotta look on the bright side of things i guess

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