Hi does anyone else suffer extreme fatigue? DD school attendance at 40% as so bad. Also suffers pain in joints & muscles.

[Miskha]

ITP - Extreme Fatigue

[SoporRose]

Yes. I have been dealing with fatigue and pain for well over five years now, even though my platelets have been steady. It is eating away my life. What is "DD school"?

[Miskha in reply to SoporRose]

Hi, ‘DD’ is my daughter. Her school attendance is so low. At secondary school only part time but if she picks up a virus platelets drop and severe fatigue for weeks. When this happens she struggles to even get out of bed. How are things for you and how long have you had ITP?

[SoporRose in reply to Miskha]

I see now!

I am much older than your daughter — fifty-five — and have had ITP for seven years now. The truly overwhelming fatigue didn't set in until five and half years ago when I had a course of Rituxan. A lot of people get temporary fatigue from the medication, but mine never went away. The pain issues showed up earlier. Since developing ITP, or more accurately, since having the bone marrow biopsy that confirmed it, I have lived with constant pain of varying intensity. Whenever I am hurt (biopsy, operation, back strain), the pain remains with me. I see a physical therapist every week, and that helps ease the hurt, though it never entirely goes away, and if I miss appointments, the pain grows again. Between that and the constant fatigue, my life has become relatively limited.

I know others have it much worse. As I mentioned in my earlier post, my platelets have been stable since the Rituxan, though my haematologist assures me that they will dip again eventually. But I am not bleeding and am grateful for that.

How long has DD had ITP? I've read that younger people often get over it. In any case, both she and you have my sympathy. I hope her school is understanding and supportive.

Ruth

[Miskha in reply to SoporRose]

Thank you for sharing your experience. It means a lot to my daughter to hear other people’s stories and know she is not alone. My DD has had ITP for 5 yrs, she had a bad illness EpBarr and platelets were normal then started to drop. As with you, the fatigue came on some time after the initial diagnosis and is extremely debilitating. Unfortunately adolescent ITP sometimes takes the ‘adult form’ and my DD never recovered and the platelets went lower and lower. I think my DD finds it particularly hard as she does not have anyone her age to share her problems with as ITP is so rare she has never met anyone else who has it. The ‘invisible’ ITP and fatigue makes it difficult for others to appreciate what she goes through. Obviously on the days she is ‘well enough’ she is in school and looks fine. She is now on eltrombopag but counts drop as soon as she picks up a virus.

I hope you find some relief for the pain and platelets continue to maintain, someone here has suggested CBD oil for pain. Thank you for your reply

[SoporRose in reply to Miskha]

Please tell your daughter that I am truly sorry for her debilitation and that her counts aren't rising. It does indeed sound as if she has the persistent, adult version.

You raise a good point about how hard it is for younger ITP patients, especially teens whose social needs are so strong. I found some discussion threads on the PDSA site that you and DD might perhaps find helpful:

pdsa.org/discussion-group.html

For Parents of Children with ITP

Newly Diagnosed(4 NEW)

For parents of children who have recently been diagnosed with ITP. Frequently asked questions etc can be discussed here.

General Discussion for Parents(7 NEW)

If your child has ITP you'll find support from other parents in this section of the ITP Discussion Board

Social Chat for Parents(2 NEW)

A place for parents of children with ITP to interact and socialise outside the topic of ITP

TEENS with ITP

General Discussion for TEENS(1 NEW)

If you're a teen with ITP or you have a friend or family member with ITP and you need to talk with other teens who understand here's the place for you.

I realize that these groups won't fix anything and it would be better to have some non-virtual friends (maybe her doctor could introduce her to some other ITP patients her age?), but maybe DD can find some people who understand.

Thank you for the advice about CBD oil. Unfortunately, I react with a very high degree of sensitivity to most medications and am very wary of trying anything. But I know many, many people who do get immense relief from CBD.

Please keep up posted about how you and DD are doing.

[Miskha in reply to SoporRose]

Thank you for the links to PDSA I will have a look through the posts. I understand what you say about interactions with other meds and your reluctance to try other remedies. It is a worry if you do not have regular bloods to see if it is affecting your platelet count. The last thing you need is to find out that something is adversly interacting by having a bleed.

I hope you continue to have a stable count and that your fatigue symptoms improve. It is difficult to get a balance when you suffer so much. We tell DD she must always save some energy for herself, and the things she enjoys in life, not just school work and daily functioning. Easier said than done, I know!

[Lynwoodley]

Hi I’m 60 and have had ITP for 3 years I had fatigue and pain a friend told me to try CBD oil (cannabinoid) which I bought over the counter in the UK from Holland and Barratt, you just put a few drops under the tongue daily and I found that really helped me but best to ask your consultant if they think it’s ok to use especially as it’s a child.

[Miskha in reply to Lynwoodley]

Thanks for your reply and the suggestion of CBD oil. We will definitely speak with the haematologist about that at her next visit. Do you have any treatment at the moment to help your count? My DD has a count in the teens when not on eltrombopag.

[Della30]

Hi, my love and regards to your DD. I have had ITP since my teens and now 46. The lowest was 4 when I was pregnant. Steroids have not helped and platelets transfusions have not helped either as my body gobbles it down too. I had retuximab 4 years with lots IVIGs before they picked up a bit. The last IVIG gave me a terrible headache they thought my brain was swollen but apparently they were too thick and given too quickly hmmmmm. The count is up and down. I also suffer from sickle cell disease 🙈🙈🙈🙈

But the debilating effects of the pain and fatigue is tough. I often get total paralyses and thank God I have only had one episode in a shop and the rest in bed where I cannot summon for help. Now enough bad news.

How do we help DD, is the school aware so they can offer some support - extra classses on her good days mindful not over exert her. Some tuition at home. Can they send her lessons online. You and her teachers have to find some innovative ways to transfer school home.

Am a nurse in the community and pick up infections which wipes me up to even gets my counts checked. I am too debilitated to get on the fone or get myself to hosp and by the time I do they are up slightly up I think over 50 and nothing is done.

Tell DD to try some gentle exercises, walks, swimming and very gentle massage & relaxations.

Regards to DD she is not alone.

[Miskha in reply to Della30]

Hi, thank you for your reply and sharing your story. It sounds as though you have had an awful lot to deal with in life with your health. I have read somewhere (can’t remember where tho!) there may be some predisposition to these autoimmune conditions and hence some people suffer more than one.

My DD has IVIG and experienced the same symptoms as you, she did literally think she was dying which is terrifying for a young person. Thankfully there are other options out there now but as you say the fatigue never goes away and DD has also experienced the ‘paralysis’ although it normally only last a few minutes thankfully. DD was inspired by your resilience, and the determination you have had, to overcome the problems ITP brings. Her concerns about employment and pregnancy have been somewhat assuaged by your story.

DD school have been helpful however they are not able/willing to make too many adjustments for her. We really could do with help to plan the next steps in her education but everything seems such a hurdle as even the GP doesn’t have any real knowledge so hard to expect school to understand.

Your advice for gentle exercise and massage I think is perfect not only a sense of achievement but also helping general well bring which will support the body while it’s dealing with the ITP.

Thank you for your advice.

[Tenk]

Hello,

I wish you, your daughter and all those around you strength and peace. Itp is so hard as it is hidden. And when I lessens it’s grip on us it becomes hidden, momentarily, even from those experiencing it and their closest loved ones. It comes back with harsh remembrance.

I was diagnosed only last year and had a year of extreme exhaustion. I have been lucky since May, I have had no symptoms for five months. Until the end of October and my bloods dropped slightly after catching my first viral infection of the winter. And back came the flood of fatigue.

I have noticed that I feel more fatigued when the bloods are dropping, even when they are still ‘relatively high’. It seems that for me, the drop of blood count is what sets off the next wave of exhaustion. Thankfully I get the red pin pricks to warn me/ confirm why the fatigue is back and I at least know I am confirmed in my wish for more sleep. I sleep earlier at night. Sleep in the day, sometimes a number of times.

Like the previous writer, I keep exercising, lightly.

I recommend massage and reflexology.

I recommend reducing wheat or any foods that make fatigue worse.

I recommend more fresh and raw foods, or any foods that enhance variety and vigour.

I recommend drinking 100ml kefir daily. Good for the gut which is the storehouse of the immune system (see dr Michael Moseley’s gut diet book).

I recommend mindfulness. Daily. In short ten minute sittings.

And more sleep.

And beautiful, restful, creative activities like art and listening to uplifting music and watching comedy.

I never expect my life to be different from itp - I am slowly coming to terms with the fact that for almost half of every year I will be on slow motion.

But I will also look forward to noticing more in that slow motion state. I play more slowly with my two and five year old. I get down on the carpet and roll around with them. We hug when we’re tired and watch our fireplace crackle in the afternoons. Sometimes I wish it would never end. All because itp has slowed me down.

I wish you all the best.

[Miskha in reply to Tenk]

Thank you so much for your words of advice. You have summed it up perfectly, my daughter does indeed live in slow motion when the platelets are dropping/down. As with you, my daughter gets petechiae which confirms why she has become more exhausted. When depleted of all energy the only thing you can do is sleep. DD works so hard trying to keep up with school work and then often has no energy left to enjoy her life. As you have pointed out there is always something good in every situation (I do believe that things always happen for a reason), for you slowing down and enjoying time with your children is so precious. DD has yet to see this as she is young and is only focussed on the GCSE exams over the horizon and piles pressure on herself to keep up.

I will look up the book you recommended as supporting the immune system and general well being will ease this journey for her.

I hope you do not suffer too much over the winter period but I think you are in a good place with the way you have embraced how ITP has slowed you down. Thank you for your advice and sharing your experience and insight with me.

[KPA_1]

Hi, your daughter is not alone, and i understand that it is particular hard being an ITP suffering teenager.

I have a 16 year old son who has ITP and low neutrophenia. He has had it for 3.5 years now. Like DD he suffers with fatigue - the fatigue and missing out is the worst part of ITP for him- he has had lots of absences due to illness or hospital appointments. In the beginning of his itp he went to school as “normal” as if nothing was up, But since the Ritoximab stopped working (beginning of this year) the fatigue got so bad that he couldn’t go on anymore. I scheduled a meeting with his form teacher and the school nurse. They have luckily been very supportive and helpful - We have now arranged that he can go to the nurse for rest breaks and if he needs to he can skip non essential lessons like PE. All the teachers also knows now and have been told to only give him essential homework or homework extension if he need to and if he is absent they’ll send notes to him via e-mail so he can catch up in his own time - when he has more energy. It has been a great relieve and help to my son to know that he has that understanding and support from school. I should probably have had that meeting much earlier on but then i guess it is always easy to see things with hindsight.

I do hope you can get an arrangement with DD’s school so she can get the support and help she needs at school too. She need a team of support around her.

Is your haematologist good at supporting DD and what do they say about the fatigue? We have just been referred to a psychology telephone consultation so my son can talk to a professional about his ITP and his challenges. I wonder if that is a possibility for DD.

Best wishes

Karina

[Miskha in reply to KPA_1]

Hi thank you for sharing your experience. I agree with you that ITP affects teenagers in many ways. Isolation through absence and not having the energy to socialise really does impact teenagers, it’s tough! DD’s school will now provide notes but it has taken two years of low attendance to get to this point. As you probably find with your son, it is always a catch up scenario. The times when DDs energy levels improve are full of school work, catching up and worries about what has been missed. This definitely drags her down physically and emotionally. Pleased to hear that you have a referral for physcology consultation as keeping positive can be very difficult when you feel rubbish and it is a chronic condition. DD does worry already about further education opportunities and employment - really not something a 15yr old should be focussed on too much. Has your son expressed these concerns also?

DDs haematologist has confirmed the fatigue has been recognised and she definitely suffers less from fatigue and brain fog when the counts above 50. DD often seems to run on adrenaline in a short burst to do things and then pays severely for it afterwards. She just feels rubbish all the time but when she then gets a virus a lot more rubbish than normal. If her friends get a cold and have 2 days off, DD will end up having 2 weeks off. Does your son get affected that way too? I hope that your son gets a stabilised count and the phone appt is helpful for him.

Thank you for sharing.

[Kyriak51]

When my platelets drop to 20K and below I experienced increased fatigue, irritability, bruising, joint pain and depression. I’ve had a prolonged upper respiratory infection for the past three weeks, my platelets dropped to 12K-24K. I feel best with count of 50 to 80 thousand.

How old is DD, how long has she had ITP, what treatment regime is she on, what’s her platelet baseline? Have her doctors addressed her pain issue as uncontrolled pain also drops platelet counts. Sorry for all the questions as a nurse, I hate to see children suffer. Talk to her Hematologist about pain management options. Learn as much as you can about our disease so you can participate in plan of care. This site has an excellent education section, check it out. Be well Georgia.

[Miskha in reply to Kyriak51]

Thank you for contacting me. I didn’t realise pain could impact the count but that makes sense as the body is under stress when coping with pain. DD is 15 and has had ITP 5 yrs. Her base count is low teens so is now on eltrombopag which usually gets her above 50 with improvements in fatigue, pain and brain fog. Unfortunately any virus knocks her back down again and like you all those symptoms intensify. Sorry to here about your infection and I do believe recovery takes longer when you are an ITP sufferer, the body is already trying to cope with too much!

I think there is so much that comes along with the low count which is now being recognised so hopefully research into the connection between these things may lead to better treatments. It’s a tough journey. Thank you for sharing your experience.

[Kyriak51]

Hi Mischa, the goal of treatment is achieve a platelet count of 50K; a baseline in the teens is not acceptable. Has DD been offered Nplate or splenectomy? At 15 DD is probably having regular menses, if so with counts the teens she must be bleeding a great deal for prolonged time and may be anemic which increases her fatigue. What is her hemoglobin(range=11.5-15.5g/dL), hematocrit (range=36-47%)and RBC (range=3.88-5.36 million)?

I feel very badly for DD as I know fatigue I was for 4 weeks an can’t imagine that level of fatigue as my normal. Please discuss this issue with her Hematologist. Be well Georgia

[Seafood]

yep. single mum. so always on the go. suffer from joint pains, tired. However, I am getting older.

I used to be hard core at the gym, now just do the basic stuff, why add insult to injury.

I have RA, sjergons, and lupus as well. So I just struggle every day.