Not sure if I am having a flare!!! Advice needed Please

[sciqueen]

Hi

I went to bed yesterday evening as I was exhausted at 9, with all that entertaining and on N Y eve it was 1.20 before I finally got to bed, so N Y day I was extremely tired and had to leave my guest.

I felt out of sorts and I began to experience pain in my wrists/hand especially right hand, right ankle and eventually my knee. I took 2 cocodomols and I eventually fell asleep thinking I was at the start of a flare.

Woke up this morning no pain as such but I had morning stiffness more intense that I normally have it, hands are so friggin hot, it made my husband jump when I touched him to confirm my hands are hot and swelling in them. i cannot make a fist without feeling discomfort. It took over 4 hrs before I could get out of bed as the feeling of unwell and flu like symptoms subsided enough as I had to straighten up the house and take down chrimbo decs etc., and I did 2 loads of washing - mainly the guest bedrooms sheets and towels. I might add the kids and hubby did decs - so I did not do all of it, but I did do more than I should.

I felt that if I did not get up it would not of got done, as I had been asking for it to be done all morning. Once I was up and I was able to organise everyone in an effort to get all the work done!

I eventually returned back to bed and took more cocodomols as I still had the swelling and felt unwell. The heat and the continued swelling has stayed all day, fingers feel fat and stiff.

Should I ring rheumy? I am on steroids 10mg, is that why I don't feel the actaul pain of a flare? Is it a flare? I also have a doc appt wednesday and was going to hang on till then.

I've also tried to look up at past blogs and found a useful blog about flares from someone called lynw. But all flares have pain, I don't have pain as such only an awareness of pain and of course if I move the affected joints mainly wrists then I have pain.

I am sorry to ask for help so early in 2012.

Just feel down as I know the rheumy wanted to start to reduce my steroids. I think if I ring, they might up the dose again and I don't seem to be keeping to the agreed plan, plus I think its in my head ( phsycosomatic).

Need to finish as fingers are stiffening even more now.

Thanks for reading my thoughtsds

Sci xx

[sylvi]

Sci it sounds like you have overdone it mate. Ring the rheumy by all means as they know your case better than i. It sounds like a flare to me. Put your hands in a sink full of cold water,thats what i do when my hands get hot, it doesn't cure it but it will cool the hands down. Also speak to your doctor when you see them.

take care and your must now rest.

Sylvi.xx

[sciqueen in reply to sylvi]

Hi

I will ring them tonite before I go to bed (I am making preparations to go now) - thanks so much.

Sci xx

[Gina_K in reply to sylvi]

I totally agree. You seem to have overdone it. That happened me over Xmas too and I am ok now.

Gina.

[Hidden]

Hi Sci - like you I'm not quite sure whether i'm flaring or not as just had continual trouble with hands and wrists that sometimes extends to knees, feet and shoulders but hasn't for a while. I did read that if you feel especially stiff in the morning that could be the start of a flare. I have a really heavy cold just now and when I woke up everything felt horrible and stiff but it's panned out okay. I haven't been able to grip my hands for months so that wouldn't be a test for me. Just a thought - are you able to take any anti-inflammatories while on steroids because for me ibuprofen t works as well as steroids if I take it systemically - ie three a day max dose at meal times. When I weaned off steroids my GP told me to take them max dose with stomach protector and this may help you to get off the steroids. GP told me to keep on the ibuprofen regularly until the MTX starts to work and I keep wondering if I can come off them now but get too worried in case it all kicks off again - especially now when I've got a heavy cold. Hope you don't flare and it's all in your head but if not suggest you rest up as much as you can. Tilda x

[Hidden in reply to Hidden]

Ps i know Sylvi is right but I am completely freaked out by icy cold on my joints at the moment even if it is the sensible way take the swelling down - it doesn't feel right to me somehow?! Maybe a wheatbag or a wax bath or if you don't have one my physio suggested rubbing hands in olive oil and putting rubbber gloves over them and then wriggling them in hot water to oil them - it works for me anyway!

[sciqueen in reply to Hidden]

Hi

I got a wax bath for chrimbo from hubby, so busy or in bed I forgot about it. Hubby says he will set it up for me tomorrow.

Hoping that the swelling and heat will go tomorrow as I really don't want to ring rheumy, but if it continues, then I think it must be a flare and I will have to ring (I know I am chicken, will face tomorrow as I am now in bed with a coffee and have taken another lot of cocodomols, so it won't be long before I drift of again).

As they say with ra, a day can make a difference!

Thanks for the advice T

Sci xx

[Hidden]

That's funny I got a wax bath on Xmas day from hubby too and still haven't set it up although he's off on a nightshift now so guess it might be a day or two to go still. Sylvi will be right about ice cold for swelling and heat though - it's just that I can't bear anything cold to touch me these days - maybe the weather here has some bearing on it! Good luck and ask about anti-inflam/ NSAIDs as they might suit you better until the MTX works? TTx

[sciqueen]

Hi T

Can't take anti inflams whilst on steroids. Like you its heat that helps, not the cold. I think they will up my mtx this wk by injection. I dont really want them to up steroids, but we'll have to see. I'm suppose to return back to work next wk.

This is all very inconvenient at moment. Can't think at mo, getting to that nice palce that cocodomols bring you before you fall asleep - will keep you updated.

Sci x

[Gina_K in reply to sciqueen]

Just to say Sci, I was prescribed Diclac twice a day when I was on steroids?? What makes you think you can't I am sure thats not so?

I now take no pred or anti inflamms, as on Humira, but have been thru all that you describe, although I never could take codeine. I only was ever prescriberd a max of 7.5 mg pred per day and had to take calcium & vit D while on steroid.

Take Care, Gina.

[Hidden]

Oh dont - fed up as found I've run out of co-codimol tonight so had to have 2 paracetamols instead. Hope you sleep well - I've got splints on for first time in weeks cos knuckles down a bit at last - but wrists are evil! Hope we both sleep well and wake up fully cured - well you've got to keep hoping eh?! TTx

[Hidden]

Ps and I meant NSAIDs instead of, not as well as steroids. Step down replace a steroid with an ibuprofen is what my GP prescribed? TTx

[Hidden]

Hi Sci,

It's the not knowing that drags me down, I know I can deal with it when/if it comes but it the waiting and worrying if a flare is coming..

My occupational nurse gave me a 'nice' but firm telling off for not putting ice on hands daily, her words were 'we're trying everything we can to get the swelling down but you need to help us' yikes I made sure I iced 3 time a day after that, but she also said that this helps as much as taking an NSAID but from the outside..

yes, I would ring them (but I see that you have) hope it passes with some much needed rest though.

Take care x

[Hidden]

Sci, I'm sure it is not in your head. Sounds like you have just overused some already over-used body parts. Been there, unfortunatley, do it all the time! Especially lately.

My rt hand and arm are presently in the splint, only leaves 3 fingers sort of free. Any little movement of my wrist is very painful. So had to immobilize it.

Really need to immobilize your whole body for a couple days. It just isn't sensible to keep increasing doses to compensate, so don't let them do that!

I know we all get told to rest, to pace activities, etc. Maybe we should, take a day or two off, rather than have to take many more later. Take your meds on regular schedule, don't let the time go over, and rest as much as p[ossible.

I think you will see a big difference from one day to the next if you can be careful for a day or so. Take good care, of YOU! Love, Loret

[Hidden]

Hello Sciqueen just wanted to agree with all the others - You have probably overdone it and hopefully a few days resting will stop it getting any worse. I wonder why you can't take antiimflammatories with steroids, I have been taking both though coming off the steroids now.

It is only when i am on the higher dose of steroid that the swelling lessens. Like you i never know whether i am in a flare up or not, it appears to me that i am in a continual one. I can't stand ice either and always go for the hotwater bottle despite the big red hands.

It is so hard trying to get things done and manage a household when you feel below par - i hope you feel a lot better today.

[sciqueen]

Update

I did ring them last nite and they have gotten back to me.

I will have to have a depo injection on friday, when I go and start mtx injection training and the nurse week will give me my first increased dose of mtx via injection. The following two wks after, I will inject myself in front of nurse and all being well I will be "signed of" and will be able to do injections at home by myself.

It appears that the activity over christmas, has meant that I have over done it and not enough of pacing. All I was doing was trying to live life!

Both knees are now throbbing, wrist and hands and lower fingers are sore and the heat from them is even worse. Right wrist is so swollen now I cannot turn bracelet, as it fits tight, so had to remove it last nite. Cannot bend right elbow as its so sore. Cocodomols have helped with the pain, as it's less intense. Forced now to take bed rest.

Husband has set up wax bath and I am waiting for all the wax to melt and obtain right temperature. So I should be able to have bath later this afternoon at least, can't wait as the heat from the bath helps me alot.

Going back to work next week is now in jeopardy, as gp won't sign me of until I am stable again, I am getting really upset because it seems that I always get sick and can't stay well for longer than a few wks. I really thought I would not flare again for months!

Really don't know what else to say other than thanks for you support and I feel so friggin low, I mean what's the point in trying, you always get knocked back, it's so unfair, I hate it.

Sci xx

[sciqueen in reply to sciqueen]

Just had a home wax bath and I am pleased to say, it worked just as well as the industrial one used at the phsyio. It's taken alot of the heat out of my hands and for the first time in days they feel normal.

It's had the effect of lifting my mood, so I am a little happier now - I am not good with pain!!!

Thanks for all your help and I will keep you posted about friday.

Cheers Sci x

[Hidden]

Pleased the wax bath .. helped hope you are feeling a little better x

Please dont give up x

[Hidden]

There is no medical reason why people cant take anti inflammatories with steroids xx

[julieporter]

Hi Sci

Sorry to have missed your original post but glad to hear you've spoken to your rhuemy.

I do sympathise about work but you must look after yourself - i was off for 6 mths after diagnosis but once i started on MTX injections things improved and although i only work 24 hrs i don't have much time off sick.I really hope the injections work well for you and keep your chin up -things will get better.

Best of luck for Friday

Love Julie xx

[Hidden]

Hi Sci - poor you - sorry been so under myself that I haven't been keeping up. I'm really glad the wax bath has worked for you. Mine is still sitting in the box and I don't think I can face setting it up quite yet as hands are really dry today but your need sounds much greater. My pain is all in my head and wrists today. Not as bad in head as yesterday and I'm just in bed as the weather's evil and no incentive to get up and out really. Got a piece of work that needs completing soon for a deadline but guess if i rest up this morning then I might be up to stitching again later on. I really hope the MTX jabs work for you - sounds very promising and if I'd had the side effects you've had I would definitely have gone down that route. You'll find the right med combi soon and be much better I feel sure. TTx

[sciqueen in reply to Hidden]

Thanks T,

My son has just left to start his journey back to uni (birmingham). He helped me strip the bed and I will wash the bed things & towel tomorrow as I already have a wash on. Had a quick tidy round and checked bathrooms, now too tired to do any more! Miss him already and he's only been gone half an hour.

Hands are not so warm today, but still swollen and I have only taken 1 lot of cocodomols this morning - early. I plan to do another wax bath later. The effects lasted all evening plus my hand skin is so soft. Get hubby or one of the boys to set it up for you. It takes about 3-4 hrs to heat the wax and then get it to cool down enough for you to use it initially.

Gonna rest up for the rest of the day, not even gonna walk the dog as I have to walk to the doctors later this afternoon and I don't want to be over tired. - trying to pace myself a little better, so I can recover.

Hope you get over you infection soon, wrap up warm and don't over do it. Will keep you posted.

Take care Sci x