Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66723

  • Energizerbunnay
  • Offline
  • Posts: 4
  • Thank you received: 0
So I was diagnosed with ITP as a child and at the time, I had a platelet count of 2. My family was told that ITP only affected my risk for bleeding and it didn’t affect my energy levels or anything else so I didn’t realize that this whole time there was a reason I struggled with feeling rested enough and why I was such a sensitive person. I cried super easily and my feelings have been easily hurt by stuff that didn’t bother my brother. I don’t really receive any treatment for my low platelets anymore. I’m just supposed to keep an eye out for excessive bruising and dark circles under my eyes but one thing I’ve always had has been blood spots on my arms. Something that really bothers me is the fact that my energy levels are always terrible when I’m working and once I’ve been working at a place for about a month or sometimes earlier, I find myself feeling foggy and my body has a hard time moving as fast as what my jobs have required me to and usually I end up getting laid off for my poor work performance. I was wondering, how other people cope with extremely low energy and working? I emailed HR and told them about my symptoms because prior to this I thought I was just tire$ because of insomnia or something and I always tried to live my life as if I didn’t have ITP which has lead to some pretty unfortunate consequences such as being unemployed a lot and having to live with my family because I cannot support myself financially right now.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66727

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
This may be of absolutely zero benefit. But just in case, I'll go ahead and mention it. Have you tried the supplement 'NAC'?
The following user(s) said Thank You: Energizerbunnay

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66732

  • Energizerbunnay
  • Offline
  • Posts: 4
  • Thank you received: 0
I’ve never heard of that before, but I will look it up online now thanks!

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66735

  • MelA
  • Offline
  • Posts: 909
  • Karma: 2
  • Thank you received: 295
You didn't mention what your platelet count is now - when it was last taken - what your ITP symptoms are.
Have you discussed this extreme fatigue with your doctor?

Before taking any supplement you should talk to your doctor!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Energizerbunnay

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66740

  • Energizerbunnay
  • Offline
  • Posts: 4
  • Thank you received: 0
Hey, I was told by a specialist to just watch out for any signs of serious bleeding or really heavy periods and I had no idea that there were other signs of low platelets. One symptom I’ve always had is tiny petechiae on my arms and I always assumed my fatigue was because I simply must’ve not slept enough the night prior. I’m planning to get a doctors appointment and get my platelet levels checked out to see where they are at now that I know fatigue is actually a symptom of my ITP and not just a thing I gotta deal with everyday.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66741

  • MelA
  • Offline
  • Posts: 909
  • Karma: 2
  • Thank you received: 295
I don't know if extreme fatigue is an ITP symptom. Some have fatigue and some don't - I've had ITP since 1989 and have never had fatigue from it [from prednisone yes because it kept me awake].

Just because one has ITP or had a diagnosis of ITP doesn't mean that everything is due to ITP. It is good you are going to get an appt with your doctor and get a count done - I'd ask to get the count done before your scheduled appointment so that the doctor has that # when you go in to see him/her.

Please keep us posted and do let us know what your count is and what the doctor has to say!
Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Energizerbunnay

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66742

  • Energizerbunnay
  • Offline
  • Posts: 4
  • Thank you received: 0
When I was a kid and I used to get platelet transfusions weekly or sometimes twice a week, I’d feel tired once my platelets were back up according to my grandma. The reason I think fatigue is a symptom of my ITP is that even on days when I’ve slept enough like today, I still felt like I could sleep some more and on days when I couldn’t sleep enough, I feel like my mind isn’t working properly and my body is only able to move slowly because my arms and legs feel heavy. I was thinking I could be anemic too come to think of it, so I’ll ask them to check for that too and I’ll update you all on this.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66743

  • poseymint
  • Offline
  • Posts: 629
  • Karma: 1
  • Thank you received: 192
Yes, as Mel said- get checked out. Everything you can. Yes, people report feeling tired with low platelets. Often there is a threshold like below 20 when they feel the fatigue. And it would be good to check for anemia like you said. I also agree with Mel, don't take supplements for fatigue when you don't know whats causing it.

Exhaustion like you describe can be a symptom of low thyroid. I have low thyroid sometimes (I'm on thyroid meds) my symptoms are sleeping but waking up still tired, feels as though you are not refreshed after sleep, morning tiredness. Also sleepiness, slow moving, everything feels like it takes too much energy, and fatigue that makes me feel like I'm trembling inside. Slow thinking and heavy arms and legs can be low thyroid too- I notice at the gym that it takes more effort to swim when my thyroid is low.

There are also other autoimmune disorders that can go along with ITP. Some are Lupus, Sjogrens Syndrome, Fibromyalgia and more. They have unusual various symptoms associated with them- they can certainly have fatigue as a symptom too. Yes, keep us updated! Will be interesting to see what you find out. Thanks for sharing your story- good luck!
The following user(s) said Thank You: Energizerbunnay

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66744

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1929
  • Karma: 7
  • Thank you received: 556
I get fatigue sometimes but not all the time. Primary ITP is an autoimmune disease. Auto immune diseases are recognised as causing tiredness because the body is fighting itself.
As Posey and Mel have said get everything checked out not just a full blood count. My advice is ask for the following initial blood tests
Full blood count, Renal profile, Liver function, Thyroid function (TSH, T3, T4), plus B12, Folate, Ferritin and Transferrin (these are all related to types of anaemia)

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66750

  • JJ
  • Offline
  • Posts: 190
  • Thank you received: 66
I always know when my count is low because of fatigue. It's a special kind of tiredness and I just know. It was the first symptom I had before diagnosis years ago and it's always the same.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66756

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245

I’ve never heard of that before, but I will look it up online now thanks!

Many diseases, including ITP, are believed to be possibly related to mononucleosis, aka EBV. Recall that a major symptom of EBV is tiredness/fatigue. This study talks about how NAC reduces a form of persistent inflammation that is associated with EBV:
"N-acetylcysteine (NAC) ameliorates Epstein-Barr virus latent membrane protein 1 induced chronic inflammation"
www.researchgate.net/publication/321735025_N-acetylcysteine_NAC_ameliorates_Epstein-Barr_virus_latent_membrane_protein_1_induced_chronic_inflammation

If one does a search of EBV and many/most of the autoimmune diseases talked about on this thread you will likely find NAC as having a believed potential benefit by many. If you are overwhelmed with chronic fatigue, perhaps NAC has a chance of working. I dunno.

Regardless, it does make sense for one to feel tired if one's immune system is in a heavy battle trying to destroy platelets.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66758

  • MelA
  • Offline
  • Posts: 909
  • Karma: 2
  • Thank you received: 295
From the CDC:
"Epstein-Barr virus, or EBV, is one of the most common human viruses in the world. It spreads primarily through saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses. Most people will get infected with EBV in their lifetime and will not have any symptoms."

In reading I found that if one has symptoms of mono but a negative test then the doctor would/should test for EBV. My son had mono and tested positive, he has no autoimmune disorders.

If one is overwhelmed with chronic fatigue then one needs to get to the doctor not take a supplement they don't know will help or hinder! There very well could be an underlying cause for the chronic fatigue that needs attention that shouldn't be ignored. If the doctor feels a supplement will help then by all means take it - as I did with the Alpha Lipoic Acid, tests have proven it helps neuropathy [in some people].

You state that "NAC reduces a form of persistent inflammation that is associated with EBV" - well get tested, if EBV is present then ask the doctor about NAC before spending money on something that may not help. Just my opinion.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66802

  • porqupine
  • Offline
  • Posts: 30
  • Thank you received: 0
I also have extreme fatigue my count is 23 that's high for me and there is not much you can do about it except slow down and rest

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66805

  • JJ
  • Offline
  • Posts: 190
  • Thank you received: 66
I get fatigue with low counts. I have learned to be kind to myself and just take rests as necessary and give myself realistic goals. So instead of planning to do lots of things in a day, I'd restrict myself to one thing. That way I didn't feel I'd failed to do what I'd planned and if I did get more done it was a bonus.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66811

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1929
  • Karma: 7
  • Thank you received: 556
My philosophy entirely JJ

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66816

  • soco87
  • Offline
  • Posts: 9
  • Thank you received: 3
I'm sorry that you are going through these symptoms. ITP can most definitely cause fatigue. There are some natural remedy's (supplements) to help with fatigue. Rhodiola rosea is a natural herb that works for some people.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66817

  • Christine
  • Offline
  • Posts: 319
  • Thank you received: 46
I get tired and have "brain fog" when my plts drop below 20K. That is the threshold for my gamma transfusion -which the day after I am rested and my "brain fog" has cleared. I did read sometime ago (please correct me if I am wrong) that the platelets are what carries the serotonin to your brain - hence the tiredness. High plts everyone :) :) :)

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66819

  • soco87
  • Offline
  • Posts: 9
  • Thank you received: 3
Hi Christine,

I'm taking medication to help with tiredness and overall feeling depressed since being diagnosed with ITP 5 months ago. My physician prescribed me Trintellex for anxiety/depression and its been extremely beneficial. Trintellex increases the amount of Seratonin by inhibiting specific receptors so you create more serotonin. Have you considered taking an SSRI? I've taken so many of them in the past but this one is very mild and helped me more than ever. Especially with the stress of dealing with ITP.
The following user(s) said Thank You: Christine, DonnaLeeD

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66856

  • JJ
  • Offline
  • Posts: 190
  • Thank you received: 66
Some studies say that the SSRIs inhibit platelet activation. What that means to us is unknown as far as I can see.

As for serotonin in platelets... lots to be read on that and no real conclusions. It's far more complicated than simply thinking that platelets carry serotonin so fewer platelets means less serotonin. Google search will find plenty.

Please Log in or Create an account to join the conversation.

Looking for tips to dealing with extreme fatigue 2 years 7 months ago #66869

  • MelA
  • Offline
  • Posts: 909
  • Karma: 2
  • Thank you received: 295
My feeling is if someone has "extreme" fatigue, as this thread title indicates, they should see their doctor.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo