Had enough

I've had et for about 4 years, diagnosed anyway. I've always just got on with it although I've had some symptoms. For the last six months or so I have had constant mouth ulcers, been tired, felt sick an bloated and just felt generally like crap. If I'm honest I've probably had this for years but just got on with it. Now it's just coming to a head and making me feel so run down. Is this my illness? Is this the hydroxy? Or is this just me being over dramatic, I just need to feel normal.x

12 Replies

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  • Hi Steven, No I don't think you are being over dramatic - your symptoms are probably getting you down but unfortunately they are real and having mouth ulcers alone for 6 months would drive anyway round the bend! I have PV and go through spells of feeling almost normal and then most of the time now I feel bloated, sick tired, go through spells of mouth ulcers. I am not on any meds, just treated by venesection and anti-histamines so far. I had family visiting yesterday and at one point felt absolutely awful but kept on smiling! You are obviously worried so why not visit your GP or haem and tell them about the last 6 months. But remember you are not alone on this forum. Kind regards Aime

  • Hi Stevenjust

    At the time of my diagnosis (I too have ET) ,just 6 months ago, I had a very bad cough/chest infection and once on the Hydroxy and asprin felt even worse. I also had hearing loss probably because of the cold. I went to my GP and through trial and error, and a few months, eventually got back to my `normal` self again which I was afraid I would never feel again. Reading comments on this forum regularly, I fear we tend to blame everything on either the illness or the hydroxy. It can easily get you down, particularly as there is no cure and therefore no end to it. I find this forum helps as you feel you are not alone. Mouth ulcers I can recommend Corsodyl mouthwash and Boots Mouth Ulcer gel, I`ve just had some dental work done and had some beauties, all now gone. Hope this helps.

  • Hi

    I too was diagnosed with ET 5 years ago, we are all very different in terms of what medication we take and when we take it.

    I was concerned on diagnosis about the effects of Hydroxyurea in the longer term I was 51 at the time of diagnosis. perhaps you could talk to your doctors about trying a different medication.

    Anagrelide seems to suit me but I am aware it is not always right for everyone. Side affects of Anagrelide seem to get better for me with time, and is keeping my platelet counts in check.

    I guess at some point I too will have to consider alternative treatments.

    This thing that we have is not easy to cope with, I go through periods of panic and other times feel almost normal, say almost because its difficult to feel normal after our diagnosis.

    I try to think how lucky I am that I have not had something far worse or worse still lost my life before I was treated.

    There is always something that can be done, talk to your doctors about what to do next and any alternatives that they are aware of for you, if need be ask for a second opinion.

    You can get an orange flavoured gel which coats the ulcers and seems to work quite quickly, sorry I cannot remember the name of this but I am sure the pharmacy would be able to tell you what it is called.

    I hope these feelings and issues pass for you and you feel better soon. I do know how you are feeling and wish you well and no you are not being dramatic.

    Regards.

  • Hi Steven

    You are going through a very hard time, not sure when you were last reviewed or tested by your haematologist but it might be worth getting yourself checked out.

    I'm not an expert on MPD's so can only talk from my own experience, however in my case the severity of symptoms fluctuates. Also they can get worse and deep down only you know you feel in your body? The best advice I can give is if things are getting worse and/or getting you down then you need to get yourself checked out to see if there have been any changes? Maybe it's worth getting a Bone Marrow Biopsy done if you've not had one for a while, my consultant is advising six-monthly checks but they're not the most pleasant things!

    Also, have you got a buddy? If not, I can highly recommend getting one as its refreshing just to be able to talk to someone who just understands! I spoke to my buddy for the first time a week ago and it really helped! You can email Maz and she'll pair you up with someone who has a similar condition.

    Finally, after a particularly bad couple of months my GP arranged for me to see a counsellor, not for everyone I know, but just having someone to talk to has also lifted the load and its been nice to talk to someone outside my family and friends.

    Regards Ian

  • I can only sympathise with you. I have had a bad spell for a couple of months now and even days when I feel a bit better and go out and do things I run out of steam and have to cut short and come home completely exhausted. I am starting to feel the impact on my life so much more than before. I do think of everything as a phase and sometimes bad ones last a bit longer than I would like. At times like this it is more difficult to keep your chin up. To others I look so well and they tell me this. I am glad of looking well and make-up definitely helps the dark shadows but sometimes I feel such a fraud. It stops me from saying how I feel which I suppose is maybe a good thing. I just say I am fine now to everyone in case they get bored with me but it makes my behaviour seem churlish when fatigue overwhelms me and I have to make my excuses and leave. I agree things could be a lot worse and I am sending this more as a message of support to you. I am sure you too will empathise with my feelings. You are not alone and we care.

  • Hi. Sorry you are feeling so rubbish at the moment. I think that one of the hardest things about what we are dealing with is the fact that to those on the outside we appear to be fine. For some of us that is what we want but for others it covers up what we are really feeling, so nobody thinks to ask how we are or is there anything we can do to help!

    I was diagnosed almost 2 years ago and so far just on aspirin. I was given choice of meds to help fatigue but decided that the side effects would outweigh any possible benefits for the tiredness. I dread the day that HAVE to take them!

    I definitely can recommend counselling. It has helped me to talk and to get rid of some of the anger I felt at being dealt this blow.

  • Hi Ruby. I do prefer to look well as you say, it would probably be much worse to have to look in the mirror and see an "ill-looking" person looking back at me! I know we have all spoke about this so often before and wonder if it is just better to avoid people who don't get the message but that would be a shame. I am sure many can identify with this but I fully explained to a close relative the contradictory nature of the disorder. (Just for info, I am 64 and worked mostly full-time for 35 years). I spoke about how people were saying I look great which IS great but that it belies the extreme fatigue which makes it necessary for me to sometimes crash out in the middle of the day (only when it is really bad I hasten to add! Her solution was for me to get a job and to go back to work. I dearly wish I could but it would be unfair to me or an employer! Sometimes it makes you feel like a malingerer but maybe I take it too much to heart. We all must try to be strong and thick-skinned and just be happy to look so well!

  • Sorry you are feeling so bad. When you say that you have felt like this for years, does any of that go back to before your diagnosis with ET? As people have said in response to other postings, it's worth having a look at diet, exercise patterns, etc. as ET/PV etc aren't going to be the only things that go wrong with us as we get older. A small point on diet, in case you missed it, a few weeks ago, I saw somebody mention that a slice of pineapple a day can help with mouth ulcers. Hope you can turn things around a bit. Oh, one last thing, in case you don't know already, there's an MPD Forum in London St Thomas Hospital a week on Friday (13 Sept). If you can get to it, you may pick up an idea, a single bit of info that helps in some way. Not sure what the programme is but the group chat sessions that usually follow the presentations can be especially useful. Best of luck. Chris.

  • Hi Steven, sorry you are suffering at the moment. I have MF but can cope with the symptoms and side effects, at least for now! As an early post said, "outsiders" think we look OK...! Try to be strong, and have someone to lean on. Visit your doctor if you are becoming depressed, but one of the problems is that most GP's don't seem to know a great deal about MPN's. Does that make us special?!! Definitely! Take care.

  • Hi Steve,

    I must be lucky as i have been on HU for nearly 20 years to control my ET and other than some fatigue and some skin problems I keep pretty well and am now nearly 69. I think you should see a medic as we can still get other things like thyriod problems and it may not be all ET and hu poisoning .

    yours town Crier

  • Hi Steven, I am 53 and was diagnosed in 2007 with ET and have been on HU and asprin since then. I do have flare-ups of mouth ulcers from time to time. Like you I feel bloated and uncomfortable a lot of the time and the fatigue is constant. I still work full time but by around 1pm, I feel like I just want to lie down and sleep! I highly recommend excercise (doesn't have to be much - even just walking for 30 minutes each day) - this seems to help with the fatigue and I think it is good for your mental health too! I think having this website and all the support there is from the group is a comfort too. It is very important to know that other people understand this condition as even our GPs don't seem to know much about them. The 3 monthly visits I have to my Haematologist have just become part of my routine now. He only seems interested in my blood count and as long as that is within an acceptable range, he is not interested in the other symptoms like fatigue etc.

    My advice is look after yourself the best way you can. Healthy diet, a wee bit of excercise and talk to your medics about your symptoms. Good luck.

  • I am sorry to hear you are feeling low. The research I have done so far, meds can have this effect. Talk to your consultant.

    Mouth Ulcers - Some natural remedies that might help.

    Rinse you mouth with Bi-carbonate of Soda and Salt in warm water.

    This is very soothing.

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