Does anyone take pain meds Or B 12 shots for energy? I have ET.

[BlessedWithSix]

I have pain in my feet, my joints and sometimes stabbing headaches like nails going into my head. I'm only 39 years old but feel like I'm a 80. I can hardly move. I have 6 children that I want to play with it. I'm so sad. My mind wants to do so many things but my body can't is there a pain med I can take? I'd ask the doctor but I don't think he believes im in this much pain. I'm going for a second opinion would, like a med to tell the doctor when I go

[DENMOOR]

Hi there,

I am so sorry you are in so much pain. I too have ET and take oral chemo. I have good days and bad days. Today not good as feel exhausted and no energy. Like you get stabbing head pain and joints aching with burning feet. I am 48 but feel 98 at time. my consultant says just got to put up with it!. I do take brufen and codeine though but they do not seem to work sometimes. Really cannot offer anything more.

best wishes

Denise

[BlessedWithSix in reply to DENMOOR]

Thank you Denise. Ill pray for you.

[Balenciaga]

I understand exactly what you are saying. I have B12 injections every 3 months but only because my B12 was low + I'm now on daily ferrous sulphate [iron] tablets because my ferritin was low. The lining of my stomach has been ruined by the hydroxycarbamide so I have to have paracetamol in suppository form (plus point: it works much quicker) & sometimes I do take it to relieve the aching (& obviously headaches).

My son is now 22: I was exhausted from the day he was born & felt about 100 from then on; when he was 5, I was diagnosed with ET (been on hydroxy ever since) & assumed I would start feeling better - haha! I'm disabled anyway (put simply: I've walked with a stick since I was 19) & I can totally relate to your frustration at being unable to do things we want to with our children: the only thing I can really suggest is... we spent hours & hours doing boardgames, quizzes (anyone would now want him on their pub quizz!); if you have a telly: watching a children's film but pretending you are at the cinema, so pulling the curtains, making popcorn to eat at 'the cinema', then discussing the film; if you have a garden & are able to get an old tent from a Scout jumble sale or something: then having picnics in the tent (or even doing that indoors if there's room). Obviously, these are pursuits that mean you can sit down + children think they are exciting &, as you have 6 children, maybe one or 2 are of an age that they can do the 'donkey work'.

It is v v v hard & it is also v v v hard not to fester on one's situation but, trust me, festering does make it worse.

All the best to you.

(I am now going to write on the blog section about my sleep situation: I've been thinking about doing this for ages & actually think it's a good idea as it may help others.)