First day in months Ifeel human ish.: Hi all , how are... - NRAS


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First day in months Ifeel human ish.

pottypam profile image
12 Replies

Hi all , how are we on this lovely Autumn day . well here anyway . ;)

Have been very very tired , my hands swollen and extremely painfull so unable to type . my neck and back hurt sitting at my laptop so just not bothered . It went on for so long , my back hurting and the burning and feeling am wearing a lead weighted belt that just got heavier as I walk ,leg got heavier and then numb and swollen and pain shooting trough me hips ,knees ,back feet . Lost my balance a few times which is a bit scary when trying to get across a road ,or on a busy place with lots of people. or in a shop where lots of breakable objects .But luckily have had someone with me to catch me and hold me til my balance returned . Pins and needles in my hands and arms and feet is really weird . And it all got me down ,not like me at all. My doctor is worried am getting into a deep depression as opposed to the mild one we all get when in pain . Gave me pills that made me feel not of this world , even more tired and sleepy and so only take a lower dose to sleep if I can . But still get up at least 3 times a night for the loo due to bladder probs from my radiotherapy. Waiting for the meds for that to start working .

And have been hoping to hear about my treatment of Toxciimb but no news yet and was told would have it 3 months ago .

So have had a rather rubbish few weeks But today for some reason I feel good , oh still in pain and aching and took me nearly an hour to get dressed cos of fingers and hands . But it is a lovely day ,not raining ,no wind and sun shining .

These days it the little things that make me happy , And today at this moment it is the day outside . So am going out to potter in the market , sit a people watch and not even THINK about how I will feel later . Good day to all and hope your pain not too bad ...

Pam xx

12 Replies
sylvi profile image

Pam, have you tried b6 and b12, i am finding these two vitamins have made a big difference to my depression. You can get them from asda and other stores or savers type shop. They are not to expensive either.

Yes the weather has been very nice and i have been out and about in my go faster scooter. LAst week we were in devon on one of the sun holidays which was lovely. The weather held out for us too. We had a better time in four days than when we had 2weeks in cornwall back in june/july. It was very wet while we were there.

I might go up the village later to pay my papers depending on how i feel, as i have had a bad night last night.

It is nice to hear from you again and that life is treating you

allanah profile image
allanah in reply to sylvi

hope you get a better rest tonight Sylvie

sylvi profile image
sylvi in reply to allanah

Thank you Allanah,i've just had an hours sleep.xx

cinders profile image

Dear Pottypam

Thank you for your honesty and the raw reality of what RA means for you. Ita a lonely disease I find. You suffer and struggle alone. This website has openeed my eyes.thanks for posting

allanah profile image

Hi pp

You are one lovely brave lady. I'm so glad you accepted your doctors help rather than try to struggle on alone. I think depression is one of those illnesses , quite like RA, that is sort of hidden, and it takes a while for you and your family to notice. I got a little down when I was first diagnosed but luckily didn't get into full depression. I felt bad enough with that never mind all the problems and illness you get, so hats off to you for managing so well.

Hope your pain settles quickly and you get good news sooner rather than later on your therapy. love Axx

pottypam profile image
pottypam in reply to allanah

Thank you for that , I try not to let my family what little i have ,see me when I am down even though seeing them cheers me up, silly really . Have had a few mild panic attacks and have to make myself go out alone , but dont do it very often as I just dont feel "right" . But will have to make myself do it now as my daughter who is really my carer has got herself a lovely new boyfriend so have told her spend her time with him when not at work , So with gritted teeth will go out and do what I can ... we have too you know or go mad lol

allanah profile image
allanah in reply to pottypam

Lucky girl for having a lovely boyfriend and an even lovelier mum for letting her get out and about. My mother in law would NEVER have done that!!!! xx

pottypam profile image

Hi Sylvi,

I have to be careful with whatr other things I take as like my medication it ahs to be ok with my GP as I am Warfrin for life an it can be affected by the silliest things and make my INR level go to high or to low . I have to try and keep it a level that ok for me but makes a lot of things impossible to have . Would you believe cant have too much Broccoli, an some vitamins can alter my levels , But will ask my GP. It is because of the Warfrin that can not have acupuncture and not even my pain injections anymore as my required level is just above the level that they say is safe .

What part of Devon did you go to I lived in Devon for several years. I was in Great Torrington , well in a hamlet about 7 miles outside ,was a loverly place but it being one of the wettest counties in the country made my arthritis worse . But did love living there . As we could get to Cornwall in 15 mins .

sylvi profile image
sylvi in reply to pottypam

Pam we went to dawlish warren. I found my joints were better there for some strange reason. It was a really lovely break.

See your dr about those b6-12 as they have made a difference to me. I hope you can take them as i find i am worrying less when i have a bad night and i am a bit civilised if you know what i mean. I know you are having a having a harder time of it because of the warfarin and i send you gentle hugs.xxxx

I used to live in Cornwall as an art student and then stayed on there for another year and got married there too. I found my eczema used to go nuts though - fine in the summer but hellish in the winter because of the damp. Even though Orkney is much colder and windier and far more remote from the major centres etc - it isn't damp so doesn't seem to adversely affect my health in the way that Cornwall did weird as that may sound?

Well done for having an upbeat day and enjoying the sunshine - I'm so like that too - if the sun is out and the world is glowing I usually just feel better despite everything else. I hope the weather and the positive frame of mind continue for you. I had a three week bout of all over pins and needles last month and after doing my research I concluded that it was because of high inflammation levels in my soft tissue. Not everything is down to our mental state - sometimes it's physical. Tilda xx

oldtimer profile image

pottypam - reading your post made me nod my head all the way through - it sounded just like I've been feeling - and although sometimes I feel it's not worth struggling on, most of the time I just put up with it just like everything else. I don't think I'm "depressed", but realistically feeling down about how little I can do and having to concentrate on thinking positively about the "I can do" statements. I found myself the other day saying to someone else "Don't say what you can't do, say what you can do" - which is what I say to myself.

One of the things I found was that the pins and needles were worse sometimes when I was anxious and I worked out that the tenseness and breathing too fast and shallowly were making them worse. Doing my deep slow breathing for calmness helped to reduce the pins and needles back to a background level.

helixhelix profile image

I don't have that degree of pain anymore, thankfully! But you have my huge admiration for battling through it. I really struggled to cope though those times, and your post brought back how truly awful it was to have to try to keep going, and how it slowly dragged me further and further down. I really hope that your good days continue. And that you find the energy to start nagging about getting started on Toczilumbab, three months is just too long to wait! Polly

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