New girl

Hi everyone. I'm new here and am so grateful to have been told about this site. Have already posted a reply to one our sisters-in-arms! Am looking forward to continued communication with everyone. I have questions but also like the idea of supporting where I can so watch this space. I have ET and am beginning to understand and cope with it. I also have Chronic Fatigue Syndrome which makes life challenging,if not impossible at times.

13 Replies

  • Hi Garden, do you not think that your chronic fatigue syndrome could all be part and parcel of your ET, before I was told I had ET they tried to tell me that this is what I had, but once I was on the Hydroxycarbamide and I was already on Asprin and numerous other tablets the fatigue has improved some what although I still have the occasional day when all I want to do is sleep things seems to be better, I do keep fit, have a really good diet which includes plenty of fresh fruit and vegetables also it is important to drink plenty of water.

    So onwards and upwards MPN voice is a great place to be so many lovely people on here.


  • Superwoman. - CFS

  • Thanks so much for your quick response to this new girl! IT's wonderful to have this connection to you all. Not sure that I DO have CFS as two idiot "consultants" diagnosed me without doing any tests, one after an appt. for tests for encephalitis and within 20 mins! All I can say is that my fatigue is very severe and most days I can't walk along the road. I am 77 but don't believe it's necessarily age related. My GP knows nothing about CFS and my heamo. Is only interested in controlling my platelet level. It's been a tough time for the past 10 years when I had a very severe chest infection in Canada and things went downhill from there. After repeated visits to my GP (5 years!) a blood test was finally done and guess what? my platelet level was 1400!h. After BMB I was told I have ET and prescribed Hydroxy. and Clopidagrel. End of. No support, information, nothing. This was in 2014. I have never felt so ill in my life. So, because of the fatigue my GP arranged an appt. with an "expert" hence CFS. Exercise is important and I love walking anyway but it is impossible. Have changed from Clopidagrel to aspirin which has helped somewhat, so your guess is as good as mine! Thanks for your interest. Am sure we'll speak again. All good wishes to you. Mary

  • Hi Garden

    Welcome to this lovely site with lots of lovely people in the same boat as you . Having such rare conditions, can sometimes make it feel quite a lonely illness . As MPNs can be so varied and complicated it can be hard for us to sometimes understand at first, never mind our friends and family! I was diagnosed with PV last October (2016) and although I, and alot of my friends and family are all in the medical/nursing profession we still found it quite alot to get our heads round at first. I have found that just reading everyone's posts and lovely replies I have learnt a lot. I've posted a few questions as well and was overwhelmed with the kindness and sensible advice I received. Maz, who runs the site is so kind and helpful, and if necsessary, she will ask Professor Harrison for advice about any specific questions you may have. She will also send you the MPN Voice leaflets which are really informative. Maz has recently released the dates and venues for the annual MPN forums which I hear are really great places to meet up and also learn more about our conditions . I live in North Yorkshire so am going to my first forum in Leeds in May and also the Newcastle Forum later in the year. Remember, as my hubby says, we are "special pepes" and all can help and support one another!

    Good Luck and I hope you stay well

    E hugs to you

    Love Di


  • ".Hi Di. How lovely to hear from you. It's all a bit of a minefield isn't it. Glad you can make it to the Forum in Leeds. I'd love to hear how it went. Because of my fatigue going to Forums is impossible because I have to go by public transport as there is no one to drive me and my body says NO! If you read my reply to superwoman you"ll learn my sorry tale!!!!!! Big hugs. Mary

  • See you in Leeds Di

    Janet x

  • That will be great xx

  • Hi Garden987, I would just like to welcome you to the forum, it's a great place for asking questions and seeking support.

    Mary x

  • Hi and welcome,

    You will find lots of help and support here. It's just great to be able to chat to so many people are going through the same things you are. But more importantly that they understand what you are going through.

    I have learned so much more from this forum than from my haematologist that's for sure.

    Lots of love

    Karen. X

  • Hi Mary, lovely to see you on this forum, I am sure it will help you, you can still also call me when you need to. Maz x

  • Hi Maz. I wonder if you could give suggestions to how I deal with a situation I'm trying to solve. Have had quite a few "melt downs" over the past year. The first one was when at the surgery for a blood test.. The nurse arranged for me to see a GP as she said I was looking so unwell. Whilst waiting, the fire alarm went off and the building was evacuated and everyone was I the car park. I was shaking and crying uncontrollably when the Practice Manager said there would be no apps. That day and they were going to send me home in a taxi! A kind patient brought me home. Later that afternoon one of the GPs rang. I was still sobbing. He sent a prescription to the chemist for 5mg of diazepam X 3 daily for a week. Long story short I was referred to a primary care therapist . Yes, I have had a really awful past and accept that has contributed to the stress but I didn't realise that meltdowns are fairly common - don't think GPs do either. So am seeing another therapist now. Am pretty sure that coping with ET and CFS is the main problem but she won't discuss that. Keeps drawing "maps" to illustrate my relationships with other people! When what I need is on hand support locally. She did say at the last session that maybe we're not on the same page! And we will discuss it on Thursday. My own feeling is that because of my past and the two illnesses I am exhausted. I am really struggling with fatigue and all my plans to do things I want to do are invariably thwarted by fatigue. I have to go back to bed just a couple of hours after getting up. Spending more than an hour or so with anyone (which is lovely) wipes me out. Feel I've reached bottom. Have had to stop the Pregabalin because of side effects. Am certain I'm not depressed. JUst exhausted. Not sure my GP can help and quite honestly am too tired to go over it all again. Is fatigue really that bad for ET sufferers? Sorry to ramble on but can't seem to find a solution. My legs won' carry me although I do try to go for walks. Any suggestions? With all best wishes. Mary

  • Meltdown. Hi Maz. Have lost your fone number but would like to talk to you please. Could you either let me have your number or ring me?Thanks. MAry

  • Hi Mary, I am so sorry that you are struggling so much with the fatigue, I know from our previous chats that this is something that has plagued you for a while, I know that people with MPNs do suffer with fatigue and it can be in varying degrees from feeling tired and having to push yourself to do something, like go out for a walk or stay at work all day, to the extreme where some people can't even get out of bed. I am afraid as I have said before, there is no majic cure for this fatigue, other than trying to do some gentle exercise like going for a walk, or dancing round your living room, or yoga, as this can help with the fatigue, although it seems counter-intuitive that when you feel you can't get off the chair that you should go for a walk and it will make you feel better, but it does, I know that a lot of people have tried some form of exercise when they are fatigued and they feel better, but again, you have said that you struggle to go for even short walks. If you feel that your therapist is not helping then maybe you could ask to see someone else. With regards to anything locally, again, I am sorry but I couldn't find any support groups in your area which is a shame, as I am sure it would help you. It may also be worth asking your GP or at the hospital if there are any complementary therapies available to you, like reflexology, or massage, I know that some GP surgeries and hospital departments are able to refer you for a course of complementary therapies, so it may be worth asking, or even booking some sessions yourself, a lot of reflexologists and massage therapists will do home visits. Maz

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