I am downstairs again and have been since 5am. I have been up and down all night with it. I would go to the loo and have a drink and then try to back to sleep which i did for a little while. I gave up at 5am and came down here. The only good thing about this is that i have a OT appointment this morning and she will see how my hands are hurting. God they hurt this morning. I thought that the injection should have lasted longer than this.
I am struggling what to put down here as i don't want to sound soo down and depress every one else. The drs wasn't a lt of good yesterday,he gave me my drugs including mtx and when i asked him about how i was feeling he went on to tell me that there were a lot of viruses around as well as hayfever and he thought i way i was feeling was down to that. He included my breathing in that as well. I have never had hayfever in my life,i have asthma though.
After the drs we came home and picked our Grace up and went to lunch. THis lunch was paid for by Grace and it was the standard bearers summer lunch. It was a nice meal,i had a ham salad and chips and lemon meranque pie.
Well i will go before i start crying again and i think i will go and take some pills and see if i can get some relief from this pain.........
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sylvi
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Good morning Sylvi, I am sorry you are in such pain again. I read the blogs & get at times so frustrated for all of us as we struggle to gain the most out of our lives despite the various health issues we suffer from. The variety of care from good to a battle to be heard is astounding to me.
I hope you get some positive help at your OT appointment this morning. Lots of love & a gentle hug. Alison xx
I just can't get my head round this damn disease. Since xmas it has been one thing after another with my body. I came off hrt and i think that was the catalyst with everything else.
It is amazing that there is no standard of care for ra/fibro it differs from dr to dr. Also no one speaks to one another. Different depts. won't talk to each other,there is no care for the whole person, and surely if you treated the whole person things would be a lot easier.
Morning Sylvi, you're quite right regarding the different hospital departments don't seem to speak to each other nor do they seem to use the same files. Maybe nowadays as things are on computer they pick up info from there but I don't suppose they have that much time. Perhaps treating the whole person maybe a thing of the future, lets live in hope.
Regarding pain in your hands - I have found that the lemon in lemon merange pie affects my hands - not always, which I guess is down to how much 'natural' lemon has been used. Doesn't help your pain unfortunately but maybe something for the future. Also, was there a lot of vinegar in any dressings for the salad or loads of tomatoe? These again affect my hands. I'm OK sometimes with small amounts but too many acidic things in one day can play havoc with me, especially my hands.
When my GP advised me to stop using the HRT patches she prescribed Clonidine tablets which have helped me - especially with the 'mediterranean moments'. As you seem to be having more problems since coming off of the HRT I wonder if they could suggest something else.
Thank you judi, i never gave the lemon much thought to be honest and i was a greedy girl as i had 2 portions. There was no dressing with the salad we had thank goodness. I like good old salad cream on my salads.
My hands were also very painful over the week end. So my very caring daughter on reading one of my holistic books. Decided a massage would do me good. She made a holistic massage oil mixed with turmeric, a spice(brightyellow) should have been cumin spice for its heat properties, but we had none in the cupboard.
Alas, the gentle massage did me good, but...... the yellow gloves I was left wearing.... clashed with my outfit.!!!!!!
Maybe that's what had effect of me winning my staged meeting yesterday.
I will have to look into that Carole, I'm glad something worked for you. It was good news on your meeting wasn't it. I don't have a problem with clashing colours as long as it helps.
hope the day gets better for you love. a lot of us on here understand your predicament.
no two days are alike.
you get up in a morning and say to yourself its not a bad day then after an hr or so exuse my french (shit happens)
its this dam weather sylvi a bit of heat would not go a miss i got up at six and my hands where hurting on the nuckles then whent for as strole well a bit of one then ankle started hurting and walking over. i am not looking forward to the winter months.
had pins and neadles at the bewiching hour 9pm last night in me legs bet thats what you get sometimes. nowt wants to hold me up today must have been me swim last night.
be nice to know how many people get the same symptoms on the weather chang woldnt it
that was interesting on the benifits last night what is this england comming to one handed man i wheel chair can work on a check out. this country is going to the dogs.
why cant we have a weather rumi forcast
goes
and the weather today for people with rum is bad hands for those in the south east
and possible knee pain followed by feet in the afternoon
That did John, Last nights programme was an eye opener wasn't it. It really worried me as i am on both dla and esa. Without that money i would not be able to have my car.
I could any employer takng us on with what we have wrong with us. Cameron wants us of these benefits, BUT where are the jobs that we are supposed to be able to do!!!!
yes ive sent for the forms im 62 nearly and wish i was back at work not much of a retirment.
i wonder if i will get it or how i go about it is it hard to get at theis age i have a disability car pass for 6 years now will this be of help to me as i worked throught the knee problem when i retired.
having to change the car cos its a bit knakered
do they send for you to have a medical or what happens any info appreciated
DLA, John you will have a form to fill in and it is like a little book the amount of questions they ask you. Put everything down that is wrong and evrything that you have had to buy, etc; stairlift,cutlery,litter picker,get my drift. Also put down how it has impeded on your life eg; not being able to walk far,not being able to do everyday tasks that is expected of you.
Over state things so that they get where your coming. You will find that you will be repeating yourself more than once,don't worry. I don't see you having a problem with the form. It will be the waiting that will get to you more than anything.
Now if you get turned down don't let that worry you,all ypu have to do is appeal. Now i don't know if you will have to have a medical or not,after the tv last night. If you do you will have to go. As i said before if they turn you down appealo. I think they will know that your really siffering just by looking at you.
Put down that you have a blue badge,that will help you John.
oh sylvi big gentle hugs so unfair you are suffering like this and this weather does not help,i felt much better when it was sunny, hope you get some pain free hours later today xxx
Hugs to you Sylvi. I am wondering if the change of weather has something to do with things as for the last couple of days I too have had throbbing all over my body.
I agree with you about us not being treated as a whole. I feel I need somebody to sit down and go through all my bloods etc and then come up with an answer-lol. Off to see a kinesiologist today, see what she comes up with. Hope you get on ok with OT
Afternoon everyone. I had a blood test this morning while i was at the hospital. I am still in a flare as my inflamation markers have gone up to 26. Great just what i need. Steroids been up to 15mg for 3-4 days to see if that helps. I also have to take sulphasaazine three times a days now as well.
My motto with this disease has always been that i won't give in to this b""""r,but this has floored me. Mind you i haven't been as bad as this since i got diagnosed 9yrs ago so i suppose i am lucky, don't feel like it though.
o here i am having a pity party if anyone wants to join me feel free. xxxxx
Dear Sylvi. so sorry to hear this keep on fighting x. hopefully the meds increase will kick in soon xx
I suffered just like you when first diagnosed with RA. My days and nights were topsy turvy... up in the night on my computer, sleep off and on day and night, constant unrielieved pain. Then put on Etanercept and life transformed. Please ask for an appt with your consultant and don't hold back on how bad you feel. You must have better medication. You should not be suffering like this. Make a fuss! Lots of love xx
Morning all, I am pleased to say i slept fairly well last night and i didn't get up until well after seven,so that is good. I have always said if i can sleep i can cope and that is my mantra all the way along. I have also said that i won't give in to this disease and i have managed as hard as i can not too. This dose has knocked me about a bit,but i have taken my pills and increase in steroids so heres hoping i might have an easier day. I am at my best in the morning so i have to go and get some things from town so i will get my scooter out hopefully thats if hubby doesn't take me over. Since he has retired i have hardly been out on my own much at all. Mustn't moan as he is such a good man. My hands are still sore and i'm sure by the end of the day i will ache in more places but hey girls i slept,i can't have everything now can i.
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