Prednisolone - 2 weeks on 20mgs - fearful and depressed.

Mat48

Oh yes that was you who recorded it Tracy - I will try but a bit apprehensive as new phone and tends to set off chimes and ringtones for things even on vibrate only .. am a terrible liar or cheat but will do it as such a good idea! I have three teens so should have patience also but i don't! Thanks for telling me your story. Trouble is no bone scans available up here and don't think they like sending people to the mainland unless they have to!
Mat x

traluvie

Mat48 wrote:

Oh yes that was you who recorded it Tracy - I will try but a bit apprehensive as new phone and tends to set off chimes and ringtones for things even on vibrate only .. am a terrible liar or cheat but will do it as such a good idea! I have three teens so should have patience also but i don't! Thanks for telling me your story. Trouble is no bone scans available up here and don't think they like sending people to the mainland unless they have to!
Mat x

If i can help with anything i will.. am always willing to lend an ear..Hope you feel better soon..xx

frogmorton

Hi Mat

l think you will likely be happier like me once you start treatment.

I was pretty lucky myself because my negative bloods did not go against me. the swelling stiffness etc was all too visible to my GP. I had one or two other unusual symptoms which helped with the diagnosis.

How long have you to wait now lass before you see someone??

BUT l DO remember that 'being unable to think about anything else' time before actually seeing anyone.

You take care

Love and hugs

Toni xx

Mat48

Thanks you are all very understanding and lovely and I really don't know what I'd do without you? I am feeling much better tonight actually so the pred must be really kicking in at last. Just had artist friends round asking us to get involved in a collaborative public art project and I thought of all of you and this obsession that is taking over my life and ended up saying "no thanks - I just can't get my head round that kind of project (having done quite a few!) at the moment sorry".

I tried to explain to these friends that this whole arther thing has thrown my life upside down and it feels as though it has to be the starting point for new work and i need to be introspective just now. But I don't think they bought it for a minute. Probably just thought to themselves "Hey ho this woman looks perfectly well - in fact she's lost loads of weight (stress, pain and loss of appetite actually!) and everything about her looks well and normal - what a hypochondriac she's becoming!".

It's always the invisibility that makes it so hard to be convincing that it is real I guess? And as now that the steroids are kicking in I find it hard to believe that I could hardly function for pain and stiffness a few days ago even so can't really blame them! I've had very little visible swelling but I do actually think that both rheumy and GP believe that there is inflammatory arthritis going on because both said so but I just want some action soon so that I don't have another six months of untreated hell. I agree Toni I need a name and I'll settle down and be able to engage with people again I'm sure. :roll:

PS should see rheumy for a second time in about 3 weeks. Not had a date but next clinic is 24th/25th November I was told and I'm hopefully on the list.

traluvie

It can be very hard and annoying when people say " you look well".. i have had it said to me a few times, especially when i am not using my crutches..
Some people do understand and others don't.. i do get fed up of explaining i have good and bad days and just because i look well today doesn't mean i am not in pain.. As long as the ones closest to me understand, i think that is important..
So happy to hear the pred is working for you mat, it makes the world of difference to your everyday living and also lifts your spirits if not in as much pain..
Hope it continues for you..x

Mat48

Thanks Tracy. Pred effects seem to wear off sometime around midnight and by morning things are much the same as before in terms of stiffness, swelling and pain so perhaps a slightly higher dose next time for me. Otherwise I'm taking DD's line of not expecting too much of it so any time off or lessening of pain is a bonus! Nice one people thank-you! Mat x

traluvie

As you say any lessening of the pain is a brucey bonus..
DD gave me some good advice regarding my stiff fingers, she said to move your fingers as if you were playing a piano, every morning this is now part of my ritual to get my fingers moving slowly..
Hope you have an ok day..x

Mat48

Thanks yes DD's advice taken by me too. Trouble is fingers usually kick off in middle of the night when im moving about with pillows etc so I end up waking with them all locked and start playing scales with them in early hours because I can't bear thought of starting the day without them?!
You have a good day too. Mat x

julie47

Hi Mat

Just been reading your post and I am pleased that the pred is starting to help you. I hope you are on that list and that you get a diagnosis so that you can start the treatment to suit.
Take care
Juliepf x........(who has ra and always looks well too )

Mat48

Thanks JuliePF. I did something quite inspired today and it has made me feel a lot better.

Basically the Pred failed me last night and this morning - it seems to kick in about midday and last until nighttime just dulling the pain and reducing stiffness and swelling - but then overnight I find I get it all worse than ever and last night it landed in my fingers again and also my shoulder and woke unable to move fingers in a fair bit of pain in all the usual places which carried on most of the morning.

And suddenly, as things started to subside and pred kicked in I decided to email the head physio and tell her what had been happening to me since she's been away for a few months. The radio announced that she's won an award for tele-consultations for rheumatology here. And she was in my last consultation and the rheumy said she's the one to contact if I ever have swelling stuff to show her or need to get through to him via her. So I sent her an email and she wrote back straight away saying she would contact him today and tell him what was happening to me and get back to me hopefully tomorrow. So if nothing else I feel as though I've got a ball rolling and got them thinking about me again. She's quite astute and I hope will be there to keep me coherent and focused at next consultation in a few weeks time? Feel so much better for taking the helm in this way! Mat x

ironic

Good for you Mat, there is nothing more uplifting than to feel you have taken control. As you say it is the first step, which you wouldn’t have done a few weeks ago so well done you. I hope you get a reply and at least your file will be updated and ready for when your appointment comes, fingers crossed that they bring it forward for you.

I x

traluvie

How are you feeling today? X

Mat48

Thanks I. Yes I think it's great to take the helm in these situations because otherwise we are just left feeling like lumps of meat at the mercy of the medical profession - who will inevitably push us about and make decisions that will have a huge impact on our lives but very little on theirs. This is not to say that they are morally bankrupt people - far from it - but just busy professionals who need things pointing out to them from time to time so that they don't lose the human perspective.

Incidentally this was my worry about steroids - that they would mask the pain making me less focused when I do finally get to see the consultant. But now I've remembered that it was back in June when I had a shot of Kenalog that I became far more focused and tackled my GP about the amount of time it was taking to get to see specialist. Goes to show that when we are in a lot of pain we can't actually see the wood for the trees!

Thanks Tracy I'm feeling a bit weird today to be honest. I had the most spectacular sore/ painful throat last night - coudn't swallow - and it is still lingering on although not quite as mind blowing. OH wanted me to phone the GP this morning and inquire re connection with pred - but he takes forever to get back to me and I don't want to miss my Tai Chi class so I thought I'd wait and see how it goes tomorrow.

Re joint pain it's weird - again I'm remembering the Kenalog and finding that in some ways the pain levels are actually enhanced as the swelling lessens - it feels like all the padding is being taken away, exposing raw aching knuckles and fingers with all the nerve endings jangling on edge. Does this make sense to anyone?! It's not so bad really but the throat and the rest seem to feel like part of same thing and dread using hands same as dread swallowing today!
Mat x

traluvie

Hi Mat,

I feel weird everyday lol..
The throat thing sounds similar to what i get occasionally..A sore throat can suddenly appear sometimes just on one side and it feels as if it is swollen from my ear to jaw, hard to swallow and talk?? it can dissapear after a day or a few days..it is quite bizarre i have mentioned it to GP i was told to mention to my specialist who just seemed to write it down lol.. so i none the wiser..
I find my pain in my hands and wrists feel like something is scurrying and attacking me as it feels like it is moving, sometimes it makes me feel like i just want to rip my hands/wrists off, but i am lucky my pain has not been so severe since hydroxychloroquine has kicked in..
The sooner you start the correct treatment i believe the better and hopefully the pain will be less severe, .. You are doing a marvelous job of keeping yourself together and carrying on...
Hope you have a better day today..x