Hi Guys,

Sorry I haven't been around for a while but its been hell! Kids, business, illness etc etc

I am here because I am scared! (I know - how stupid of me)

My hips are giving me so much pain I cry. Its not in my groin, its on the outer part near the bursa but also inside near the head of the ball! I also get a numbing sensation down my legs from my buttocks and the pain when I lie on my side is awful. It hurts to stay still and move! I cant sleep on my front or back (just not comfy) so I don't sleep much.

My GP has seen me and said it was my bursa and gave me a steriod inj in my buttock because my hips, wrists and fingers were sore, then the week after put me on anti-inflammatories with Omeprazole (even though I cant tolerate them). They don't work. He was talking about perhaps taking me off Methotrexate Inj and onto something else but its been working for me since December with only 4 or 5 flares lasting 4-7 days. If I come off Methotrexate do I have to stay off it for a few months to get it out of my system? Also I cant carry on working with this pain. I had to use a crutch last week! I own a Newsagents so have to stand up for hours on end!

Sorry for rambling but I have an appointment with my Rheumy Nurse tomorrow and am scared they'll tell me to have a rest for a few weeks! How do I explain this to my husband? He cant understand the pain and fatigue so laughs and jokes about me being part time and that he has to work longer hours cos I cant! I know he's joking but it hurts!

I guess I am just low and so much in pain that everything gets to me! Like cos I have been sore, he hasnt got any boxers or clean jeans! I know I should say "well you know where the washer is" but he works 15 hours a day! My daughter has exams and has anyone tried to get a 16 year old lad to get off his butt?

I am wondering about DLA or something to help me. Any ideas would be greatly appreciated!

Hope you guys aren't suffering too much!

Lxx

Oh you poor thing. It all sounds horrible at the moment.

And I'm sorry but you too are working and coping with RA too and there is absolutely no reason why your husband and son and daughter cannot do their own washing.
I think this needs a very serious family talk.

Hi Louise

So sorry to hear things are not good.

I had a family meeting with my lot (my youngest son is now 18 years) - and explained the situation and we split the jobs up a bit - each took a different job of their choice! (one did all the hoovering, one selected keeping the 2 bathrooms clean, and the youngest choose to do the washing!). He's the only one left at home now, and he still carries the washing around from machine to drier and upstairs - he will also do any job I ask him to do... which is really lovely. So I would definitely explain the situation to them, and ask if they might be able to help. Specify what needs doing - have a piece of paper with the urgent jobs written on it. I always gave them a day to get the job done... so they didn't feel too pressurised. If it was exam time, they would do a job during a revision break. (We had GCSE's with one and A levels with another at the same time! - but survived).

As Petra says I would also ask your rheummy nurse about a course of steriods to help you through. Chat through all your options with her. As things are so tough at the moment, I would write a list out on a piece of paper of everything you want to ask, so that you don't forget anything (easily done if you feel rushed). Ask about the different treatment options that might suit you. May be ask for an Xray of the hip to see what is going on. Sometimes the general steroid injections (in the bum) don't work much (they don't on me) - but the tablets do. I've had a steriod infusion a few times too, which has really helped. May be that might be an option. I wondered it what it was the first time I was offered it - but was so glad I accepted and they did it there and then. Amazing pain relief. She will hopefully want to sort out the current problem - as well as the underlying prevention treatment, so you could discuss the MTX and whether to keep going with in longer or change or maybe add something else as well.

My Rheum nurse is very good - and usually very keen to sort out current pain.

Do let us know how you got on. We all sympathise with you as pain is one of the worst things about the RA - and getting it under control so important.

love Anne x

Hi Louise

I really feel for you. You are going through a terrible time right now. I agree with what everyone else has said. Good idea from Anne about writing everything down because you think you will remember everything but often you don't. Every little thing is important to enable docs to give you the proper meds. If you can get steroids I am sure they will do you a world of good. I think you need to read all the information you can get about RA with your family. Don't ask them to read it on their own, it won't mean anything. You need to be able to explain things at the same time.

Good luck Louise. I really hope you get sorted soon.

Sheila x

hi Louise,

i just wanted to add my heart goes out to you, so much advice has already been posted.

and agree with others that a Family meeting might have to be the order of the day.

as for DLA i'm afraid i can't help you ... but if you post a Thread under Benefits section with any queries about how to start the procedure i am sure Rich will be able to point you in the right direction.

hope you get some relief soon,

Suzanne x

Hi Louise i too really feel for you. It mustn't be easy being on your feet when you are in such alot of pain.

It's also not easy bringing up teenagers when you have ra either, speaking from one who knows! Mine have been doing alot of there own jobs since they were about eleven, ie their own beds and bedrooms and their own ironing and helping with cooking but alot of the housework still falls on to me. I have a nearly twenty year old and it is like waking the dead trying to get him out of bed in a morning as well!

I have to read the riot act every now and then in our house when things get too much for me. It's not easy is it.

Bevxx

Hi Louise

Really good that things are getting better for with your medication and home life. One step at a time though, as they say

So very sorry to hear the news about your Uncle, just hope he remains comfortable, just such a difficult time for you all ( the very same thing happened to my Uncle ). Just to say sorry about losing your dog, just one thing after another - I have animals and the loss is so devastating, just part of the family and we love them so much.

Good that you had such a great time at the Concert, must have done you the world of good !

Take care, Julia x

Hi Louise

You are having a really bad time right now and when so many things affect us we do seem to ask "what have I done to deserve all this?) but you have done nothing to deserve it. I hope your uncle is not in too much pain. If he has MacMillan nurses or Marie Curie nurses taking care of him, they will make sure he is comfortable. I know how difficult it is to lose a pet too. I have always had pets in my house and each time we lose one I say never again, I couldn't cope with that one more time but when you are an animal lover you do. I am sure that now you are getting some respite from your own pain, you will be able to cope much better with the other problems. All the best.

Sheila x