So completely and utterly fed up with my arthritis

[Weegle]

This is a self-indulgent whinge, but please save me from going on about it to DH again!

I have a form of arthritis called Ankylosing Spondylitis. It's horrid and makes me constantly fatigued, but I can't sleep well due to pain. And I'm in a lot of pain - back, pelvis, kness, ankles, wrists and now my hands, fingers and left shoulder are hurting too. We are TTC so I have had to come off all my medication and it's just horrid. Pregnancy can sometimes trigger a remission phase but I know that's not a given, so I have to face the prospect of many more months of feeling like this. I have a toddler, and I don't know whether it's the drugs I was on or the arthritis itself but my cycles are haywire 26-47 days and so I'm having to find energy to have a "rampant" sex life on top of all the pain. Some of the drugs I can take post-ovulation through a period, but I'm currently on day 28 of this cycle and I haven't even ovulated yet. TTC DS was fun, this is, to be honest, is a chore (I would not say that to DH!). But we so desperately want another baby, and I know that the best medication I can be offered I can't go on until after I have finished child-bearing. So today I just feel like crying. I'm fed up of "being on top of things" and "brave" and having people admiring me etc etc. It's pants and I hate having it in my life.

I don't even know why I'm posting?! So someone can say "there, there, dust yourself down and carry on" maybe. Thanks for reading.

thank you for replying - I was feeling even crappier when no one replied even though my post was very me-me-me.

I popped out to town and went to a cafe with DS, ok so I'm worn out but feeling more positive. I appreciate the sympathy - I don't think people can relate at all if they haven't felt joint pain. DH home so going to have a bath like you suggest and have dinner cooked, so that's got to be good! I think it's the never-ending day-in-day out side of it which sometimes just sneaks up on me and I feel fed up but I know tomorrow I will just get on with things again.

oh Weegle .. have we talked before? DH has AS too so I know a fair bit

are you aware of Kickas.org? there's a woman's forum on it (it is private) and a number of those posters have done the difficult pregnancy thing (numerous times)

thank you. Sorry for you being in pain too, I wouldn't wish it on anyone.

Hi Twiglett, not sure if we've "talked" with regards to AS before (I think I've only mentioned it in response to others before, or maybe started one thread in Disabled Parents), but thank you. I haven't heard of kickas.org, will go there now. I sort of joined the NASS forum but it is slow and mostly full of older men so gave up! I think I came across one other woman on there who was in a similar position ie. with and planning a young family - all the advice is so incompatable with having a child who needs lifting, constant attention etc and so is unrealistic! Most people haven't even heard of the disease so when someone like you says they know what you're talking about it really helps in itself, if that makes sense?!

weegle, that sounds like a horrible visious circle and you are perfectly entitled to have a major moan on here.
I have arthritis in my knees and there are some days when I just don't know what to do with myself with the discomfort.
But I know that at the moment it is discomfort, rather than real pain. I know the pain isn't that bad and other people are in much worse pain than me.

So I can't help, but I can empathise a tiny bit.

There there, dust yourself down and carry on.

And I hope you get knocked up soon

thank you

and Twiglett - I'm on the KickAS website - I think you may have just given me a massive boost, how can I not have heard of it?!

weegle you have to ask to join the woman's forum (once you register) because it is private

it has members from all over the world but many americans too

I hope you find it useful .. lots of great information .. including the apple diet which might be worthwhile for you if you're flaring

Weegle, I have psoriatic arthritis and went through exactly the same feelings while trying to conceive DD - it is an effort just to manage all the meds you can take before and after OV but all the TTC stress on top of that really takes the pleasure out of things. It really is hard to manage arthritis with a young family to look after, and I have found it is hard for people understand what it is like so totally know why you feel the need for a moan - even older arthritis sufferers are able to prioritise their own health where as with toddlers about you don't have that luxury.

I had a remissive phase not only through the pregnancy but for several months afterwards too so there is hope that once pg you will get a longish break from the relentlessness of it all. Plus I have found that now DD is walking and talking (she's 18mo) it is starting to get a lot easier as I can talk to her to comfort her rather than having to pick her up all the time. I hope you are successful with TTC soon and the pregnancy goes smoothly - and moan away at will!

I think I'll have to take a look at that website too, sounds great.