When will it stop getting worse?

Ankyspond

Sorry guys just need a moan, don't bother replying just need to tap it out!!!

When is this ever going to stop getting worse, I waited and tried all the meds, I went on the anti TNF (which is great on back and hips), got rid of my heels, stop doing things which I know upset 'arthur', keep being told to be patient, found out meds damaged my eyes and after all this the pain in my joints keeps getting worse. My joints hot, swollen, sore and full of pain, i feel so down but try to carry on so nobody know but feeling so down. Gone back on methotrexate today as well as Enbrel and just feel like going around in circles! Worried about long term effects on my body, arrggghhh!

Just want to scream but 'arthur' never there for me to tell him what I think!

Sorry all rant over, just ignore me i know there are many if you much worse than me and I shouldn't moan. Xx :x

Poppyg1rl

Hi Anky,
You rant all you like! We know what it's like to deal with this complete and utter b******d Arfur!
You did the right thing in getting it all out and telling us how you feel hon, tomorrow's another day and the enbrel/meth combo will start working for you, I'm on the same combo and it's starting to work for me finally it will happen for you think positive.
Sending you huge big hugs and you know where to come if ever you feel down, we are always here for you and know what's it like.
Love and hugs (((((()))))) Xxx

weejean

Hi Anky

You go on and moan as much as you want. Hope you feel better soon. Sending you hugs xx

valval

hi know where you are coming from most of time i live normal life even work 4 hours a day but from time to time he bites and will not let go. you moan all you need to it, helps us cope shareing with others that understand it helps us get our head around it and cope.
sat her with tears in my eyes trying to decide should i try and bath or just go to bed it hurts and there no words to discribe they way it makes you feel val

Ankyspond

Hi all, I should have known you would all be there to support me instead of ignoring me, thank you sooooooo much it really means a lot anytime but especially tonight.

Poppy, I loved the way introduced Arthur! Thank you for letting me rant I just so needed to do it tonight just felt it all too much. I am so pleased to hear you are on the same meds and that they are working for you, I am hoping for the same. Thank you so much again. Xx

Jean, thanks for the big hug it was really needed tonight. Xx

Val, I know what you mean I teach three full days a week and most of the  time it's fine and I think talking about it to people who understand makes such. Difference.  but when it bites it really bites and as you know it becomes to much to bare.  Sorry to hear you are struggling too, such a cruel, cruel disease. Xxxx

Thank you all again for Taking the time to show me your support. Xxx

julie47

Morning Ankyspond

How are you today? hope you are feeling much better.

Got my fingers crossed that the embrel and meth work this time.

Take care
Hugs ((((())))) juliepf x

suzygirl

I really hope today is a much better day for you. Sometimes it just all gets too much x

barbara12

Hi Ankyspond
I am a great believer in getting it all off your chest, and if it has helped then we are happy to listen.
Thats what good about this forum, we all understand to some extent or another what you are going through.
I do hope things improve for you very soon, and I wish you well with the meds.

dreamdaisy

Firstly, don't humanise it by calling it Arthur. That is a gross dis-service to a noble name, it gives this dross far too much value, it is not worthy of such dignification. (Is that a word? If not it flaming well should be.)

Secondly, this group of diseases rarely improves, or gets better. There are a very fortunate few who are not that badly affected and for whom even small amounts of medication are beneficial, but for the rest of us it is a slow and steady decline. That in itself is the cause of a huge amount of frustration and we all understand that.

Thirdly, this is exactly the place to let rip 'cos we all been there, on a number of occasions, and we get it. I hope you are feeling better/brighter today. Take care. DD

Ankyspond

       
Morning all,

It still amazes me how much support I get from here and how kind you all are.  Today is another day, the pain is still there but have taken my first dose of methotrexate again, so trying to be more positive today.  I had a huge cry with my husband this morning and got it all out so I am feeling better in my 'head'  this morning

Juliepf thanks for hugs, I too have my fingers crossed the combination work this time.  Xx

suzygirl, I am normally pretty good with keeping my emotions and frustration under control but there is the odd time (last night) when it gets too much and I feel like it's so overwhelming, I know I am not on my own feeling like this and I don't mean to be selfish. Xx

Barbara, you are right I do feel so much better for 'letting it all out' although it dose make me feel like a bit if a failure too and I then think it has beaten me and taken control. As you can guess I am hard on myself, but I am aware we are all in the same situation. Thanks again. Xx

DD, you speak so many wise words, I had never thought of naming it before.  I think this is the thing I find hard to accept I know it's not gonna be cured, but keep being told they can ease it but just taking so long and get go one thing then it seems another! But I do feel bit better today, thanks.

Anyway all I am feeling brighter today and am trying to be more positive, we going to a friends for a nice BBQ tonight so that will be nice.  Thanks again for all your support. Xxx

mig

have a great time at the barbie,let your hair down but not too much meds and drink dont mix too well.Mig

suzygirl

Anky, hope your bbq went well last night. The last thing you are is selfish! It is a hard thing to come to terms with. I have had a few years practice and still find it tricky. Who wants to have all the pain, fear and limitations, not to mention the yucky meds.

However, I have learned a lot along the way and do think it has made me a better and stronger person. Some of the changes have definitely been for the better.

I think you are doing amazingly well, keep talking to hubby, they need to understand how we are feeling.

Have a nice gentle day today.

julie47

Morning anky

Hope you enjoyed the bbq with your friends.

(I first read it as you were going to B&Q probably cause thats where I need to go for some wall paper for our bedroom It is obviously playing on my mind )

More Hugs (((((((((())))))))))
Juliepf x

Ankyspond

Hi all,

Had a lovely time at BBQ last night with only one glass of wine (didn't want to drink too much with going back on meth). We had a lot of laughs which was much needed for me and also my friend who is losing her mum to terminal cancer at the minute so it was a great tonic all around!

We ended up discussing religion and being very silly about it and although we were like children it was very funny.

You are all wonderful people so caring and supportive. I think it has just shocked me that I have gorgon so bad the last few weeks with no real reason to point at, suppose that's what happens with this disease. After your posts am feeling positive the meth and Enbrel will work.

On a brighter note our eldest son is due home next week from uni, can't wait to see him and then hoping to go to France on holiday with my lovely husband and three children.

Love and hugs to all. Xxxx

skezier

Hi Anky,

I kinda delayed answering this....

It goes in flares and remission periods and the remission can last a long time but each bit of damage doesn't repair.

However......

Keep doping the exercises that help with the suppleness and with luck you will be fine and not have the problems your worried about.

They tell me I don't have as but I do have oa thats gone into hyper drive and gone after my back big time. Its quietly fusing its self up with all the extra bone its grown but it actually has made it more stable to some degree so the fusing bit isn't always as bad as you think it will be.

hang in there flower cus its never as bad as you fear.

Hey hope your son gets back ok and you really enjoy your holiday in France. A ((( ))) and a bucket of hopes Cris x

weejean

Hi Anky

I am so glad you enjoyed your evening. Laughter really is the best medicine. You have loads to look forward to with your son coming home and your holiday, enjoy every minute xx

Ankyspond

skezier wrote:

Hi Anky,

I kinda delayed answering this....

It goes in flares and remission periods and the remission can last a long time but each bit of damage doesn't repair.

However......

Keep doping the exercises that help with the suppleness and with luck you will be fine and not have the problems your worried about.

They tell me I don't have as but I do have oa thats gone into hyper drive and gone after my back big time. Its quietly fusing its self up with all the extra bone its grown but it actually has made it more stable to some degree so the fusing bit isn't always as bad as you think it will be.

hang in there flower cus its never as bad as you fear.

Hey hope your son gets back ok and you really enjoy your holiday in France. A ((( ))) and a bucket of hopes Cris x

Cris thanks so much that brought a tear to my eye. Xx I hope you keep well too. Xx

stickywicket

It goes at its own pace but you will cope. I think you're doing great.

Ankyspond

stickywicket wrote:

It goes at its own pace but you will cope. I think you're doing great.

Thank you sticky that means a lot. Xx

bubbadog

Hi Anky, It does take a long time to get the best medication to ease the pain as best as it can. I still get bad flare ups and have to take extra morphine to ease pain. I have good days where I try and make the most of it! drink gallons of wine! only joking!! I too had to stop wearing heels and go to flats, well at least they are trendy at the moment! It's all about making the most of the good days. And making it through the bad days. And knowing you have friends around you at this site that you can rant and cry with. I don't know what I do without this site. Hope the holiday to France is going ahead so you can have a great time with your family. And remember we are always here for you. Amanda/bubbadog.

Ankyspond

bubbadog wrote:

Hi Anky, It does take a long time to get the best medication to ease the pain as best as it can. I still get bad flare ups and have to take extra morphine to ease pain. I have good days where I try and make the most of it! drink gallons of wine! only joking!! I too had to stop wearing heels and go to flats, well at least they are trendy at the moment! It's all about making the most of the good days. And making it through the bad days. And knowing you have friends around you at this site that you can rant and cry with. I don't know what I do without this site. Hope the holiday to France is going ahead so you can have a great time with your family. And remember we are always here for you. Amanda/bubbadog.

Thanks Amanda, your words ate very welcomed and make me feel better. I like you do enjoy the good days, maybe a bit too much! If passports come back in time will be off to France if not somewhere in england. Xx

skezier

Hi Anky,

Just dropping in to agree wholeheartedly with Sticky... it does go at its own pace and you really will cope.

The exercises are important and I promise you my spine has actually got stronger since it began to fuse its self up, be it in a slightly different way to as.

Hang in there and enjoy your hols... and bring back the sun..... ((( ))) and another bucket of hopes. Cris xx