Think I must have been in a boxing match last night ......

[Anteater]

Have woken up and every bit of my body hurts including my inner organs - feel like I have been punched from pillar to post .......

[zenabb]

First impression is to ask you what have been up to? The second response is to ask you, are you better now? What pain is left?

[Anteater]

Ha Ha ......Had a nice hot bath soaked most of the aches and pains left with lower back pain, legs ache and want to go back to bed to try again !!!! x

[Anteater in reply to Anteater]

I mean I want to go back to bed to a peaceful sleep !!

[NJOS in reply to Anteater]

I hope you are feeling a bit better. I have been feeling the same since yesterday and have had to give and spent most of yesterday and today in bed. It just seems to happen every now and then and sometimes you just have to go with it. x

[Emma2]

I hope you've managed to get some rest and wake up pain free!!

[JaneP]

Hope that you are feeling better now. I've had exactly the same. I woke up Monday morning feeling like i'd been in a boxing match and didn't want to go to the doctor's again, as I always seem to be there for one thing or another. However, today, Wednesday, had to concede and went to see GP. Had heart and lungs checked out - everything ok, so they suspect it's a viral infection and told to get plenty of rest.

[Anteater in reply to JaneP]

Hi JaneP, I have conceded... I have booked to see my GP earliest appt next Tuesday...

[JaneP in reply to Anteater]

Hi Anteater, are you no better? I'm not feeling too bad in myself apart from the tiredness I always seem to have. Have been taking the pain killers and basically doing nothing all day to try and get myself well enough for work again on Monday - as I daren't have any more time off! Let me know how it goes on Tuesday and I hope that you begin to feel better over the weekend.

[NJOS]

Hi anteater , it could be that you have picked up a bit of a virus which will be making you feel grim. I have times like this usually 2-3 times a year and they last for up to a couple of weeks. When they get really bad I go to my rheumatologist at my local hospital and he gives me a shot of steroids and I find that that really helps. I have been seeing him now for over 10 years so he knows me really welll. Are you feeling any better? hope that appointment goes well. x

[Anteater in reply to NJOS]

I just cant seem to get enough rest.. I struggle to get up in the mornings and by the time I have had a shower or bath I would love to get back into bed. I retired from work in 2007 after being off for a year with chronic fatique (they gave me Ill Health Retirement), and I have never ever fully recovered from it... My Consultant tells me that it is all connected with the Scleroderma. I also have other auto immune conditions which does not help. Maybe I will ask about Steroid Injections in September when I go in for Iloprost. Thanks NJOS xx

[NJOS in reply to Anteater]

hi again Anteater. I am afraid that that is all part of the scleroderma. The fatigue is really debilatating. The way that I have had to deal with it is organising my day so I do an activity and then rest. I can only do about 2-3 activities a day which would include having shower and making supper (as 2 separate tasks)

I know it sounds difficult but you do find your pattern.

I found it enormously difficult at first so I put together a speadsheet of the hours in the day and what I wanted to get done that day. It sounds really anal but it helps you to sort out your day so that you are not trying to do too much and to get your life into a pattern. Also when you are having a good day try not to go overboard as you will then pay for it.

I have found that if I organize myself like this I get less really bad days like you are having at the moment.

I still get what I call flare ups as there are times when I do do too much. When I have a flare up I really can't do anything at all and find I am spending most of my time asleep. I need to give into this for a couple of days and if after resting for 2-3 days and pretty much not doing anything I don't feel any better that is when I go to the rheumatologist for a steroid injection.

It sounds really depressing at first, especially if you are used to an active lfe, but you really will find the pattern that suits you so that you have less days when you feel like you do at the moment.

I hope that this helps a bit.

Nicky x

[NJOS in reply to NJOS]

Hi again anteater. I have just been looking at some of your other blogs and have noticed that you have had scleroderma for a long time. I really hope you don't think that with my message I was trying to teach you too suck eggs. take care and hope you are feeling better soon.

njos x

[Anteater in reply to NJOS]

No not at all - I like the idea of the spreadseet and like to hear how other people cope. xx

[bookworm]

Hi anteater, hope your feeling better, i often get up in the morning shattered and aching. hope gp's app. goes well.

[Anteater]

Dont really think I will get much from my GP - they are not that up Scleroderma - Ive only been with hem 6 months but I want to look for another GP but I just cant be bothered at he moment x By the way I am feeling a bit better

[overcomer]

Hi my name is jay, I've just been diagnosed with sclerodema a year ago. I had been feeling alright, until about two months ago I started to get short of breath, went in to the emergency room and I was admitted to the hospital. the doctors found out that I have pah has anyone out there been diagnoised with this and please let me know how you are doing. If I go up and down stairs i get out of breath .

[Anteater in reply to overcomer]

I have just been diagnosed with PAH - I do have a lot of problems walking up and down stairs and gradients. I am still tired but after my last treatment of Iloprost my consultant has now put me on plaquenil which helps with the tirednes by taking the inflammation away from the joints and muscles. I am managing to get through the day but by the evening I just feel like curling up and going to bed xx what a life.... By the way, you may get more replies if you post on you blog xxx