Morning all,well as the title says i am in agony. Where do i start, my hands are swollen,sore,stiff, so painful to touch and the pain goes up into my shoulders. My knees are swollen and sore as well. My ankles and feet hurt and swollen as well. It is hard to walk, i have done some walking as i refuse to give into it. Boy it is hard though. I sluch my way round the village like a little old lady. My eyes are affected as well, they are very tender and dark and swollen and the cheek bone round the eyes are as bad as the rest of me. I am feeling very sorry for myself at the moment and i've had a stinkng cold to throw into the mix doesn't help either.
I am sorry this is such a miserable blog,but it is how i am feeling at the moment. xxx
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sylvi
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Oh poor Sylvie wish we could all make it go away for you .... This disease is to say the least very testing ...I'm off work too been signed off til injections take effect ..wish I could pop in and make u a cuppa but here I am in Essex watching day time tv !! Sending u a big hug and hoping that better tomorrow will be a better day Claire xxx
Thanks claire,i try not to watch too much tv,mind you i am on here a bit more than i should be.Hubby has made me a cuppa before he goes out to a legion meeting. o i am home alone and i will try and get some more sleep as the last two nights haven't been very good.xxxz
And just so not fair having a cold as well as the rest. hope you manage to get a doze, and feel a bit brighter afterwards. Polly x
ahhh sylvi so sorry to hear you are really poorly, i can fully relate that is how i was last week when i first came on here and it really drags you down i too had a cold on top and i think this makes it flare worse . i hope you get some much needed rest and you start to feel better soon plenty of hot lemon drinks helps and stay warm . Lots of soft hugs to you sylvi hope you start to feel better soon :)) lena xxxx
Sounds really awful Sylvie!! I'm sorry you're having a cr*p time!! I hope you'll feel better soon. Christine xx
When are you likely to get your anti-tnfs? I think it helps to have something to look forward to when you're in a lot of pain. It would help if the weather perks up wouldnt it. Here its freezing cold. We're off to Paris for a few days (P is working there) but I understand they had snow etc But it'll be lovely to be there and look at some art galleries.
|I go back in april and then i'll know more. AT the moment i'm so much in pain. You might as well know i am sat here crying my eyes out. Hubby is on his way home from a meeting,so i won't be on my own in a little while. I have a blanket round my legs and heat pad on my shoulders.
You have a lovely time in paris and take lots of photos for us all to see.xxx
Poor you I wish I could send you something to relieve the suffering - I think these colds hit those of us with suppressed immunity doubly hard. Hugs - try and pretend you are Cathie arriving in Paris and seeing all the sites perhaps. Tilda x
Its a conbination of cold and the ra flaring. Tilda i have never felt this bad with ra.xxx
I had a lousy cold a few weeks ago and it completely stupified me - I could barely prize my eyes open but equally couldn't sleep as couldn't breathe properly so the combination must be absolutely horrible I can just about imagine. Take care and keep up your liquid intake please. Tilda xxxx
Colds and other infections do make you feel worse dont they. I hope you can find somewhere comfortable and warm. I will send you photos from Paris if you're sure they won't make you feel fed up.
I am so sorry to hear you are having such a hard time. Wish I could find the words to bring comfort & live closer to pop in to make you a cuppa. Lots of love Alison x
Thank you all for your kind wishes, i have just spoken to one of the rheumy nurses and she has told me to go back on steroids. I have only just got of them this last week and now i'm back on them. I can't win can i. I had come off them slowly and did as i was told and it took me three months to come off them. I am to take 5mg for two weeks and see if that helps. What i am going to do after that heavens only knows the answer to that. I don't know whether to take them tonight or wait until tomorrow. Any advice would be helpful.xxx
Take them now!!!! I would take them tonight seeing as you have been given the ok to restart them. take care. xxx
PS - look at your email in box!!!
if your not sure sylvi ring them back and ask i'm sure they wont mind, hope it helps you also ask the question about having been weened off them will you have to keep on taking them or is this just a temporary measure until you get over the cold. Hope you are feeling some relief soon sylvi you are really going through it at the moment bless. take care i'll check in on you tomoz. :)) lena xx
Sylvi i'm sorry to hear your in such a state. Your so lovely your always helping all of us on this site with kind words of support. Just wish i could pop round and make you a cuppa and a hug xx
Oh dear Sylvie, this has gone on long enough! I haven't taken time tonight to read the other's comments, but I sure hope you can get back to your Rheumy and get started on that anti-tnf immediately It just sounds like you have not had adequate drugs to cover these symptoms! Get pushy, much as you can! Loretxxxx
Morning Loretta,i am seeing the rheumy in april and hopefully they will be there ready for me. How are you and your frenchman i hope you both are well.xxx
Yes, we are well, though he hasn't gotten back from London yet. He has a son in University in Scotland to see first. I'm hoping for Easter together, unless his son wants him to stay there till after Easter. As he points out, we have our whole life ahead of us You sit down and stop running the Hoover! The steroids are meant to work on your bones, not allow you to wear them out!!!
Good words Lovely Loretta,trouble is when i feel wellish i tend to do things and i forget. This morning while hubby was at the drs I emptied the inside recycling bin outside and i out i put the hoover over the downstairs floor. Then i sat down when he came home and we had a cup of tea ad the i did some potting on with bulbs i had ordered and which came yesterday. I didn't do it all as there are a few more to do and i didn't want to push my luck. Hope you are well and the weather is being kd to you.Love sylvia.xxxxx
hi sylvi how are you feeling today ? did you get any rest hope you did xx did you go back on your steroids. . lena xxxx
Sadly lena i am back on the dreaded steroids. Only 5mg for two weeks,but i don't know whether i will take them for the whole two weeks. I did sleep last night thank you for asking.xxxx
Hi Sylvi so sorry but if its only for the two weeks thats good yes? glad you got some rest last night how are you feeling today . xxxxx
Well hubby had to go to the drs so i wiped up the dishes and emptied the recycle bin and hoovered up and now i ache,so hubby is home and made me sit down.xxx
lol sounds like mine . good that you got up tho but take it easy hun dont go over doing it keep your chin up xxxxx. :))
Oh Sylvi, hugs to you. I feel for you and know what you are going through as all my joints are absolutely gaga swelling, especially my hands. (Just the knee they last injected seems to be behaving! At least there's one good bit of me!!!) I wonder if the incessant rain has made yours worse? Does that to me all the time but then so does the common cold. Gets my joints jumping. Hope you can get on a biologic very soon. Is it meeting the DAS score that is the decider now for you? I think I recall you saying you were very close.
I have had my screening (blood tests, Mantoux, xray) now and just to tell them which med. However, another thing to sort as I have to have a root canal first before I can start a biologic, because I will need antibiotics from the dentist. That will delay a couple of weeks.
I hope your cry got it it of your system and now you feel better for doing it if that makes sense. Sometimes it is just a relief to have a blubber on your own. Love to you,
Julie,a good cry always eases the tension for me.I got up this morning feeling quite bright. So hubby went to the drs early so i emptied the recycling bin from inside and put it in the big bin outside. Then i hoovered up down here and felt pretty pleased with myselfat down and after hubby came home we had a cup of tea and spoke about how he got on at the drs. Then i went outside and potted some plants i had delivered yesterday and did some more potting. Then i sat down and rested. Daughter came down and we drove up the village and while they unloaded everything i had a look in the charity shops. We had a cuppa with them and then we came home and had lunch. Rested after lunchhubby went down the allotment and i went with him. I didn't do anything down there just walked up and down. Boy am i paying for it tonight. My hands hurt as the rest of me.
We will have to organise a club for us achy breaky bodies.!!!!!!!
I am just exhausted Sylvi thinking of all you have done today! I think a more restful day tomorrow might be in order! Hope you are having a very calm evening and an early night. When we start our anti TNFs we can start the Biologic Women Club .... Forget about Wonderwoman or Bionic Woman ... Here comes Sylvi ... Biologic Woman! LOL. I am hoping realistically the biologic will get rid of all that soft tissue pain and inflammation which stops the joints moving freely. That's got to be something hasn't it? Love to you,
Julie,i quite agree with you about the biologics. I can't spend each and every day sitting in my chair stagnating and waiting to die. Like you i am pinning so mch on these new drugs,1,if we get them,2,when will we get them. I had a new knee put in last year after having the first one taken out due to the fact i am knock kneed. It was a long operation and i have been doing real well. So well in fact last week the psychio discharged me. Now all the soft tissue round that knee is causing me a lot of concern at the moment. We are doing the weekly shop in the morning and i think i will be doing in a scooter. You take care.xxx
Hi Sylvi, I am hoping you get your go ahead for a biologic on your next Rheumy visit. Will that be your second DAS? I hope you get fast approval and can move through the screening as I have done these past few weeks. (Just the darn root canal/antibiotics to sort.) Once I decide which biologic from Enbrel, Humira or Simponi I can be registered with the Trust and then I can start. I was told in my area it takes about a month to register you with the Trust etc for the drug. The request and the approval part is all done I am told for an anti TNF. It is just me that has to tell my rheumatology team which med, and I will be doing so this week. I am fairly sure I will choose Enbrel.
Sounds like you have done very very well with your knee and physio and it is a good idea to have rests, such as going shopping on your scooter. It is hard to get that balance between rest and activity. I think soft tissue and muscle takes a loooong time to recover from ops and I hope a biologic will give us more mobility and strength in all our joints. Help us to re join the human race! Happy shopping!
so sorry you don't feel too well. try to get plenty of rest and keep yourself warm - we're going to have some awful weather these next few days so i'm staying inside where it's nice and toasty!
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..wish I could pop in and make u a cuppa but here I am in Essex watching day time tv !! Sending u a big hug and hoping that better tomorrow will be a better day Claire xxx
You sit down and stop running the Hoover! The steroids are meant to work on your bones, not allow you to wear them out!!!
LOL. I am hoping realistically the biologic will get rid of all that soft tissue pain and inflammation which stops the joints moving freely. That's got to be something hasn't it? Love to you,
Well here I am!
