32 disabling MDS, x2 BMTS relapse

[Abitwo]

Hi there,
I wanted to find out if anyone else is feeling as I do?
I'm 32 female and constantly fatigued, I'm In such bad pain most of the time and find myself less able to do normal activities day to day routine, takes me ages to start my day etc
The pain/fatigue I'm experiencing is so disabling!
I also get very dizzy and my ears pop, my eyes blur and I feel like my eye sight is worsening.
I've been having MDS since I was born but diagnosed officially 8 yrs ago, I've had 2 transplants which have both relapsed I'm now having azacytadine injections and DLI to try and salvage my BMTs 18 mths ago!
I have nightly temperatures at the same time every evening and go again!
I'm totally concerned that I'm not going to survive this and getting totally fed up with feeling this ill, even considering a mobility aid! Despite cramping my fashion sense!!
I want to feel normal

[janbev]

Hi
My husband said to reply to you in his place. He can sympathise with you as he is suffering very similar symptoms. He knows exactly how you feel it sometimes takes him so long to get washed and dressed in the morning I end up going in search of him just to make sure he is ok and not lying somewhere in need of medical attention. He is a lot older than you (67) and has only been diagnosed since 2013 and is not on any treatment yet - the doctors just keep him supplied with paracetamol, tramadol and oramorph. Most times the mix can keep his pains to an acceptable level when they can't I end up taking him to A&E. He needs a nap 3 or 4 times a day and from being the one who was always cold he now suffers from 'night sweats' and sometimes is so hot he just wanderers outside in the night to cool down. He also does not like the idea of mobility aids (Male thing) but you could find something that could double as a fashion accessory. I hope things improve for you soon and you have our sympathy and good wishes
Janet

[Abitwo]

Thankyou for your response jan,
Just wanted to see if people got the same as me, along with the night temperatures I also get very cold during other times.
My diet is now terrible can't eat much at all.
I'm going round with what I can describe as constant muscle cramp the whole time in my calve muscles.

Thanks again abitwo x

[Kes]

Hi,

You have my utmost empathy. I was diagnosed in my 30's. I am now 50. There needs to be much more done about some of these quality of life issues. There are a couple of questionnaires listed on this webpage. Do have a go at filling in if you feel up to it.

I find the side effects of many of the drugs are awful and extremely debilitating. There is only so much time in busy outpatient clinics. My GP is brilliant. It took me some time to train him but it was so worth it. He really helps with counteracting some of the side effects and long-term problems.

As for mobility aids I gave in and have a mobility scooter. My preferred method of transport is a motor bike so this was a bit of a street cred issue for me. After a couple of years of sitting in the car while my family went off though I decided it was better to compromise. It's the best thing I've ever done. I can get all over the place now and there is no reason why these things can't be customised.

You don't say if you've been given a reason for some of your symptoms. Keep asking questions. The more you understand the more you will be able to do something that helps make you feel better, even if it's just a little.

Sometimes what I find helps is to try and be in the present moment and not think too far ahead. Thinking ahead can make people feel anxious who have such serious illnesses. If I stay in the present and the present moment is ok I can enjoy it. If the present moment is rubbish then I just need to breathe over it because it will change.

Also keep pouring your heart out about how awful it is sometimes. I'm not always good at checking these forums. I'm trying to be better. I do have some good friends that I can shout at when needed though.

I'm sorry it feels horrible just now. I hope you get some improvement soon.