bad day

salamander

I've had a flare up today, everything hurts and can hardly move. I went swimming last night and that might have made things worse. The rheum nurse has told me to increase the steroids for a couple of weeks - not great news as I thought I was doing well on a low dose. Also am getting a lot of pain from the fatty liver and am waiting for the gp to phone. Prob is the fatty liver is caused by the stds so one reason I don't want to go up.


I'm fed up. I thought I had got off lightly but today is a nightmare and has reminded me how bad this disease can be and how much it affects your day to day life. Supposed to be getting my hair cut tonight but don't think I can get there. Also got Christmas stuff to do but don't think I can do that either. It's too slippery outside to risk it. Am worried too about picking up my Dad from the station tomorrow. I don't know if I can drive as my shoulder is bad. I'll have to go on the tube and that's not easy when my joints are like this. Have to see what I can work out.
And to think I wasn't going to take the mtx, what was I thinking? Can't wait to start it in January now.

gickygawky

Hi Sally,

I'm sorry to hear you are having such a rough day. It must be going around because I have been feeling really well lately, and all last night and today I have felt like I have been hit by a steam roller :shock:
It is a stark reminder not to under estimate our disease isn' it. I tried to do some yoga last night and although I was very careful I wonder if I have stirred up a hornet's nest, hmm..
I hope you manage to sort out all the things you need to do for Christmas. I am lucky, I have managed to get myself organised early for once!

Take care and keep warm, I hope tomorrow will be better for you.

Arna x

salamander

gickygawky wrote:

Hi Sally,

I'm sorry to hear you are having such a rough day. It must be going around because I have been feeling really well lately, and all last night and today I have felt like I have been hit by a steam roller :shock:
It is a stark reminder not to under estimate our disease isn' it. I tried to do some yoga last night and although I was very careful I wonder if I have stirred up a hornet's nest, hmm..
I hope you manage to sort out all the things you need to do for Christmas. I am lucky, I have managed to get myself organised early for once!

Take care and keep warm, I hope tomorrow will be better for you.

Arna x

Hi Arna, sorry to hear you're feeling rough too. It could be a combination of the cold and exercise, though they keep telling me it's good for me Had a chat with the dr about liver pain who said I've got to really restrict my diet, low fat and no sugar. What great advice three days before xmas! Though I know he is right and will make an effort, might lose the stone I've put on since starting on stds!
How long have you been suffering with arthritis? I've only recently been diagnosed and am having difficulty believing I've actually got anything. Though that's ususally on good days of course!
xx

gickygawky

Hi Sally,

It's funny you say that sometimes you refuse to believe that there is anything wrong. I do the same - when I am feeling a bit better I always think I have hit the home stretch and this time will be different and it won't get worse ever again. And then something like today happens and I get a massive reality check! Ho hum!

I have been feeling really well for about 3/4 weeks and I have cut down the pain killers I have been on to about half which is great.
I was diagnosed with AS about 3 years ago but have always known something was amiss since about 7/8 years old. When I was 29/30 I had a massive flare and that's when the doctors started piecing it all together. Now I am on Enbrel and Methotrexate which has been a good combo so far.

Is the fatty liver problem something that will get better with a change in diet while still using steroids? That must be so hard for you to deal with on top of arthur. Have they ever offered you an alternative to the steroids or are they what works best for you? I have found the steroids I was offered to be ineffective so I opt out of them now but for alot of people they are a god sent.

I hope like me you are able to have a sofa day today and that you will be feeling better tomorrow!

A x

sally36 wrote:

gickygawky wrote:

Hi Sally,

I'm sorry to hear you are having such a rough day. It must be going around because I have been feeling really well lately, and all last night and today I have felt like I have been hit by a steam roller :shock:
It is a stark reminder not to under estimate our disease isn' it. I tried to do some yoga last night and although I was very careful I wonder if I have stirred up a hornet's nest, hmm..
I hope you manage to sort out all the things you need to do for Christmas. I am lucky, I have managed to get myself organised early for once!

Take care and keep warm, I hope tomorrow will be better for you.

Arna x

Hi Arna, sorry to hear you're feeling rough too. It could be a combination of the cold and exercise, though they keep telling me it's good for me Had a chat with the dr about liver pain who said I've got to really restrict my diet, low fat and no sugar. What great advice three days before xmas! Though I know he is right and will make an effort, might lose the stone I've put on since starting on stds!
How long have you been suffering with arthritis? I've only recently been diagnosed and am having difficulty believing I've actually got anything. Though that's ususally on good days of course!
xx

salamander

gickygawky wrote:

Hi Sally,

It's funny you say that sometimes you refuse to believe that there is anything wrong. I do the same - when I am feeling a bit better I always think I have hit the home stretch and this time will be different and it won't get worse ever again. And then something like today happens and I get a massive reality check! Ho hum!

I have been feeling really well for about 3/4 weeks and I have cut down the pain killers I have been on to about half which is great.
I was diagnosed with AS about 3 years ago but have always known something was amiss since about 7/8 years old. When I was 29/30 I had a massive flare and that's when the doctors started piecing it all together. Now I am on Enbrel and Methotrexate which has been a good combo so far.

Is the fatty liver problem something that will get better with a change in diet while still using steroids? That must be so hard for you to deal with on top of arthur. Have they ever offered you an alternative to the steroids or are they what works best for you? I have found the steroids I was offered to be ineffective so I opt out of them now but for alot of people they are a god sent.

I hope like me you are able to have a sofa day today and that you will be feeling better tomorrow!

A x

sally36 wrote:

gickygawky wrote:

Hi Sally,

I'm sorry to hear you are having such a rough day. It must be going around because I have been feeling really well lately, and all last night and today I have felt like I have been hit by a steam roller :shock:
It is a stark reminder not to under estimate our disease isn' it. I tried to do some yoga last night and although I was very careful I wonder if I have stirred up a hornet's nest, hmm..
I hope you manage to sort out all the things you need to do for Christmas. I am lucky, I have managed to get myself organised early for once!

Take care and keep warm, I hope tomorrow will be better for you.

Arna x

Hi Arna, sorry to hear you're feeling rough too. It could be a combination of the cold and exercise, though they keep telling me it's good for me Had a chat with the dr about liver pain who said I've got to really restrict my diet, low fat and no sugar. What great advice three days before xmas! Though I know he is right and will make an effort, might lose the stone I've put on since starting on stds!
How long have you been suffering with arthritis? I've only recently been diagnosed and am having difficulty believing I've actually got anything. Though that's ususally on good days of course!
xx

Hi Arna, I'm due to start methotrexate in Jan then I can cut the steroids down. Although I may still have a fatty liver from them it prob would be good to watch my diet, no point in adding to the problem.

You seem to have had AS for a while now and at least you are settled with your meds. I am slightly dreading the mtx but days like today make me think I really need it. It's thawed outside a bit now and, equally, I've loosened up a bit so am going to attempt the hairdresser later - will make me feel a whole lot better for a start!
Thanks for your support!
Sally

joyful164

Hello Sally.

Bad luck having a flare up just before Christmas. If you have a couple of duvet days get plenty of rest and keep warm. Obviously your swim has not helped and you could be just got chilled from that.

People keep telling me that swimming is good for you and I should go at least once a week, but I have hesitated because for a start, my neck doesn't take much to set that off, because I can't swim with my head down. You don't have room to swim on your back.
Coupled with having Polymyalgeria Rheumatica which affects the strength in your arms, I am reluctant to trigger any flare up. And also, there is always the risk to picking up an infection.
Do hope you feel lots better soon and be careful with the steroids.
joy

salamander

joyful164 wrote:

Hello Sally.

Bad luck having a flare up just before Christmas. If you have a couple of duvet days get plenty of rest and keep warm. Obviously your swim has not helped and you could be just got chilled from that.

People keep telling me that swimming is good for you and I should go at least once a week, but I have hesitated because for a start, my neck doesn't take much to set that off, because I can't swim with my head down. You don't have room to swim on your back.
Coupled with having Polymyalgeria Rheumatica which affects the strength in your arms, I am reluctant to trigger any flare up. And also, there is always the risk to picking up an infection.
Do hope you feel lots better soon and be careful with the steroids.
joy

Thanks Joy, I'm not sure about the swimming either! The pool was cold and it was snowing when I went, probably not a great idea! I feel a bit better this evening, always am of course, but I didn't do anything at all today which obviously helps.

I know what you mean about the steroids but if it is the difference between being able to use one's arms and legs or not then I'm afraid the steroids win! I am starting on mtx soon so will be able to ween myself off. Thanks for your post and support. Sally

skezier

Hi Sally,

Sorry you have had a bad day. I think the hardest thing is to learn what your bones will and wont do happily and then adjust to them...... I never get the adjustment right but now and then I get away with it so I think for as long as you can go swimming maybe its good you do? Its akin to walking through a mine field eh?

I hope the mtx will really help you and when do you start it. Luv Cris x

salamander

skezier wrote:

Hi Sally,

Sorry you have had a bad day. I think the hardest thing is to learn what your bones will and wont do happily and then adjust to them...... I never get the adjustment right but now and then I get away with it so I think for as long as you can go swimming maybe its good you do? Its akin to walking through a mine field eh?

I hope the mtx will really help you and when do you start it. Luv Cris x

Thanks Cris, yep, it is a steep learning curve. Though I am learning to give into things a bit more and take it easy. No mean feat I can tell you! Speaking of feet glad yours are better tonight. Seems you got a bit of support from the nurse today. Glad you are feeling better. What would we do without this forum eh?
Sally x

salamander

pixyandfaries wrote:

hi hun how you feelingnow ? i do that, im doing it now, i dont have arther, im on no meds and very little twinges , should i be in here on this site at all???? :shock: ive evan forgotten all the pain during the summer when i was on such heavy meds i was not on this planet for 6 weeks, hubby helping me up the stairs as i was stuck ect, its like it wasent me :shock: well at the mo im glad im a non arther arther girl!
ive thought about swimming, but i dont like it best of times, kids making niose and splashing ,whats relaxing about that ! and i hate to feel cold 8)

Hi Pixy, thanks for asking, am a bit more supple today but still can't walk very far and my wrists hurt. I was walking on the ice very slowly and when I got off the ice realised couldn't walk any faster. That shocked me a bit. I meant to go swimming today but forgot as had my Dad visiting. He's staying with my sister over xmas but I met him from the station. He can walk faster than me! I quite like swimming but I agree with you completely about kids and noise and splashing. I go in the lane session but then you get very aggressive swimmers who think they have more rights than you to the pool. I like to annoy them by doing exercises right by the bar at the edge like bicycling etc. really winds them up! then I get a float and slowly, v. slowly swim up and down, equally annoying methinks!
Good you can detach yourself from arthritis, I do that too. Determined to be normal so have been doing even more than usual, even if it hurts.
love S