Feeling Shattered

[stevenjust]

Hello,

I am aged 41 was diagnosed with ET approx 2 years ago but was told i probably had it much longer. I am on 1500mg of Hydroxycarbamide and 75mg aspirin per day. More frequently I am feeling extremely shattered and fatigued and also forgetful, At work people have begun to say to me 'it's not like you to forget something like that' and I just shrug it off as a 'bad day' as they don't know of my condition. It can sometimes take days for me to feel normal again and during this period I long for my bed and to just sleep. I hate these periods and just want my life to pass until I'm back to normal again.

I suppose my question is, does anybody else get this and is it the medication or the ET or just me?

Thanks

Steven.

[Aime]

Hi Steven

I have PV and have the same symptoms without being on medication (controlled by venesection) apart from anti-histamines for the itch. I have had a bad week despite my bloods being ok and brain fog has descended again! I forget things, don't seem to realise things - it takes ages for things to dawn! You are not alone as some of the others will I am sure reassure you too. You are not alone and will find a lot of support on this forum. Best wishes, take care, Aime

[Hidden]

Hi Steven I experience exactly the same as you, I am at work at the moment since 8.30 a.m. and dreading this pm as I just know I will feel even more shattered by 5:15p.m. I too take Hydroxy and my counts are under control. It could be the ET, it could be the Hydroxy, I'll never know because I daren't come off the Hydroxy. Just know you are not alone, this forum has shown me this and is an absolute lifeline.

Best wishes

Mallard

[Aime]

Hi Mallard, I am on holiday this week but last week would not even have lasted out until the afternoon. I am sorry you guys have such fatigue, it is horrible! However as you say Mallard, at least we can support one another cos it is difficult for our family and friends to understand because I look fairly healthy! Work colleagues, as well, will say you are looking well - if only they KNEW! Best wishes Aime

[Swede]

Hello,

Yes, I also suffer from a lot of side effects, from medication or the E.T itself??

One of them is that sudden absolute tiredness.I could fall asleep sitting on a chair, in the middle of a conversation if I didn't start to move about. Also, I would think, one day per week or so, I just cannot stop sleeping, I am just a wreck and feel like I haven't slept for weeks.Added to that I feel groggy and like I was behind a curtain.

Something that I am worried about as well is, that I am gaining weight all the time. I did read somewhere that with this medication one can increase the weight but it never seems to stop. Eating very healthy and doing exercise (hurt my knee when slipping in the snow in January so less know)and walking etcetera.

So, a lot of different things that came along with the E.T...

MLA

[Mwalimu]

Hi, Stephen. Sorry you feel so rotten. I feel bad from time to time but find exercise helps. Even if you don't feel like it, you could try it. Lots of people recommend it. Others pay a lot of attention to what they eat as well. Spend some time going back through the comments and see what they say. Is there a reason you haven't told people at work about it? Thinking of you ..... good luck, Sallie

[stricnine]

I too have ET and still work full time, but with a fairly relaxed/sympathetic employer - I have told the main people I interact with as the brain fog definately decends at times. I also now acknowledge the total fatigue when it hits and just go for a sleep during the day - even 40 mins can make all the difference.

I was on Interferon for 3 months but it took it's toll mentally, although physically I had started to feel a bit more energized, so I am currently off it and I am aware the ET symptoms returning... ho humm...

[rubyrubyruby]

I too am struggling with the fatigue plus aching legs. Today I woke up after a good 8 hour sleep and I still felt tired! I have walked my dogs for an hour, had lunch with a friend and done bits and pieces at home, so not exactly hard work, and I still feel as tired as I did when I woke up!

I am more tired at the moment than I ever have been but that could be related to my RBC count which at 15.1 a few weeks ago apparently is high!!

[rubyrubyruby]

I meant to add that I am fortunate not to have to work but there is no way I could work feeling like I do at the moment so I really feel for those of you who are having to work whilst being hit with this fatigue.

[PVPVPV]

Sorry to hear you feel so bad. What does your consultant say? Are you unable to discuss at work? Obvviously depends on the workplace and we all want to pull our weight at work, but also have employment rights. Thought I saw something recently about our rights under DisabilityDiscrim Act. Work look at that. You may need it at some point even if you dont feel able to raise it at work now. Do you have a union rep or occupational health service? Unions get a bad press but defence of individual members interests (as well as the collective interest) is often one of their strong points.

[Rinty]

Hi Steve, I too have ET and have recently turned 40, I completly empathise with your symptoms and I can also reassure you that what you are feeling is completly 'normal' for an ET sufferer, my counts have been well over a million for the last few years and back in November (When I turned 40) I commenced chemo. I have to say my experience the Hydroxycarbamide was particularly horrendous, or so I thought! It turned out that I possibly had a bad reaction to the drug (41 degree temperature, even more severe bone pain, fatigue, headaches, vomiting, complete loss of appetite etc) but once in A & E (after very weakly demanding my bloods be taken and I be put on an antibiotic drip) as per my chemo 'alert' card, I was told by a 'chest specialist'! that I had th flu. I actually felt like I was going to die!!! My body was shaking I was halucinating and I also lost complete bladder control. Looking back I think starting the chemo at that cold time of the year was a very bad idea as I was not as 'well' as could be. I must state that the reason my heam and I agreed that I should 'try' treatment was to see if I could improve my ET symptoms, and also lower my counts as I am due to have some surgery (which I have since postponed). After spending the most of January in bed and sleeping all of the time apart from dragging myself out of bed for the loo and taking sips of water, food was a no no, no matter how hard I tried, the vomiting prevented me. When reasonably recovered I went to see my heam, whom I should have seen earlier, but feeling so awful I cancelled my app. We disgust my dreadful experience and we agreed to try something else. I chose Interferon Pegsys injections, although my heam was not entirly happy with this choice (as I am taking anti depressants - there is a strong connection of this therapy causing depression) she respected my decision. Well ......... I lasted 6 weeks!! 5 on the minimum dose and the last I had to double, not only were my counts much the same I felt like I was living in 'hell'!! I was having daymares as well as nightmares, I would burst into tears for no apprarent reason, I was very withdrawn, again with no appetite, once again I threw in the towel. As a consequence I am seeing a councillor, although my husband has been reccommending this for a very long time! After throwing in the towel my heam and I agreed that I should take a month off and continue with my clopidogrel (have been taking since diagnosed 5 years ago). We are now at the stage where my month is almost up I see my heam (who I have to say is the most amazing person I have met - she is a complete expert in her field - previously, at diagnosis I had a different heam, whom of no fault of his own was 'not' an expert on MPD's, so I sought out the best I could find, still on the NHS, had a second opinion and have never looked back) next week, I know my counts will be very high, they were 1.3 mil when last throwing in the towel, I have decided better the devil I know and to commence treatment once more with the hydroycarbamide (which I have to say worked very well reducing my counts to the lowest they have ever been 800ish in short period of time) and just hope that this time I manage to continue with the therapy. So in answer to your question (sorry for going on so much) I have felt and continue to have very up and down days, be it on or off medication. I think with the med's a high temperature and sweats are more common and as long as pain releif is taken this takes the edge off. Although since starting and coming off treatment my bone pain (and I mean from my head to my toes) has been the most severe it has ever been, so much so that I have to take 100mg to 200mg a day of slow release morphine, I have tried to go cold turkey on this also and the results are that I will have an acute attack of pain and litterally do not know what to do with myself the pain is so incredibly bad. I also long for my bed, most days. I too am working but am fortunate that I along with my husband run a small - busy, stressfull at times business, we employ 7 people, I have taken on an assistant, which helps very much, most definatly reduced the chest pains I used to have on most days. Having had this blood cancer for 5 years I have learnt to take my time (regardless of those around me! extremley hard to do as I have for so long done everything for my husband and two children aged 12 and 19 - family is a whole other chapter & I don't want to bore you with that now), have that sleep if I can (I have fallen asleep on my couch in my office before) I do my food shop online, I have learnt to say no alot more often instead of burdening myself, I eat as healthily as I can but still enjoy a glass of bubbly. Basically just be kind to yourself, YOU ARE IMPORTANT. Good luck and I hope some of what I have said is of help, Best Wishes A.

[Hidden]

Oh the joys of PV! Falling asleep at the most inopportune moments is so inconvenient-I particularly struggle without with the ends of films/tv dramas finishing after 9pm! But like Sallie suggests I find exercise helps loads Not long after I was diagnosed with PV & ET I was being being pressurised by my eldest daughter to get a dog. Of course she was going to walk him religiously twice a day etc etc. Didn't happen. So I walk him twice a day for anything from half an hour to an hour & it's certainly made a difference to the fatigue. I believe it's self care that's a huge part of managing this condition; if I'm tired in the afternoon & I'm at home, I'll have a nap. Or in the car at lunchtime when I'm at work. Eat well & drinking lots of water seems to be beneficial too. Take care of yourself Steven, you're all you've got!!!

[DeniseC]

Hi Steven, I am also 41 and been diagnosed with ET for a year although like you they think I've had it a lit longer. My meds are also 1500mg of Hu and 75mg Aspirin per day. I don't think we'll ever know if the fatigue, brain fog and the other symptoms we experience are the meds or the illness. I used to really worry about the different things I was feeling, but this site and the support that we give each other always makes me feel reassured and a bit better if not physicaly then mentally, it makes me stronger. Share you bad days with the rest of us and hope you feel stronger soon.

[stevenjust]

Thanks for all your advice, at least I know it's not just me. I have not told work yet as prefer to keep my life outside private but I may have to if I start to slack. I have just moved hospitals as my old one closed, saw my new heam last month and was in and out within 5 mins given a prescription and said see u in 3 months, no examination, no how you feeling, just your bloods are still stable here's your tablets so I think going back to see her wouldn't be beneficial, I will see what she's like at my next appt. I've started walking today so hopefully this will bring some benefits. Good luck to you all.x

[beetle]

When initially diagnosed with ET 20 years ago I had four boys under the age of 12 and looking back I am not sure that I had time to be tired - or maybe I thought that four boys gave me the right to be tired! However, now, "tired" is an understatement. My ET has progressed to MF and the brain fog and glue in the veins are a daily nightmare and unless I do something else (usually cross stitch) when watching TV I fall asleep! Reading is a tough one too!

I have recently had cause to stop HU cold turkey and within five days my platelet counts have gone from 500 to 700. Significant recovery happened in White cell count (which is what we were after) and Hgb stayed much the same. However the brain fog and fatigue were unaltered. As Hgb stayed the same that might account for it but it might also mean the fatigue and brain fog come more from the disease than the medication. Pure speculation, I know but it is certainly colouring my opinion!

Hope it helps a bit to know that we are all dealing with the same thing and that you are not alone

[kangaroux]

Gosh Steven your question rings true,

I am 41, was diagnosed in 2005 but also had it long before that, currently on Aspirin and 2000mg HU and have the lingering fatigue, getting out of breath alot lately too and the 'chemo brain' looms over me constantly (the standing joke in my family). My workplace is unaware of my condition as I don't know how they would react to it and also for the most part I look and act quite healthy. I have also noticed the slow and steady weight gain since being on HU regardless of how healthy I eat...........Just remember you are not alone, it's comforting to know someone out there is in the same boat as I am........look after yourself

[Seea]

Hi Steve

I believe the brain fog and fatigue comes from the condition. I am 47 and was diagnosed 8 months ago with ET and had the extreme fatigue and brain fog for 6 months before going on HU and other medications. I find having a routine of exercise, meditation, eating foods for my blood type and regular bed times definately has a positive impact on reducing how tired and sore I am. Hope this helps.

Sea