Me again but I badly need your help?

Mat48

Hi Again. Sorry it's not been long since my last post and I feel I'm becoming a total pest but I'm off down to the big smoke on Tuesday - flying with a large suitcase full of artwork and a large rucksack of 3 glazed box frames that i hope will be allowed on as hand luggage because they are too fragile to put in the hold.

My big anxiety is that since the other day's embarassing revelation re the thyroxine I have been feeling a little better in my legs and feet and fingers but my wrists, left shoulder are worse than ever and i have a lurking ache in my lower back the whole time as well. If I was just staying home I'd just carry on taking the pain meds and forget about work until the wrists ease up but I have been stitching away to complete an artwork - almost done - while OH packs up the remainder of our exhibition and I find myself absolutely on the brink of despair about how I'm going to manage with my wrists in this state? I will have to get from baggage to taxi rank with heavy suitcase and rucksack with cumbersome bits in but hopefully I'll find a trolly and manage that part if I smile exceptionally hard at the Gods

But it's the next bit of getting to the gallery that is phasing me so and also installing the embroidery work. I don't know the artist lass (chair of the artists collective gallery) who is meant to be helping me but she's coming to my hotel and we are walking together with the artwork to the gallery as I've only been once before at night time in a car. I have tried to explain that I am going to need some serious help because of arthritis but she's not really picking up on it and just keeps emailing me back to say that she's incredibly busy after 14 hour shifts waitressing, working at the uni blah blah but she's sure I'll manage with her around in the background etc.

Thinking I'm going to have to ask GP up my pain meds tomorrow or go on oral steroids for the week - an option he's suggested before. I'm beyond the point now where I can rely on wrists being better by Tuesday. They are permanently in splints just now both look slightly swollen (hard to tell because the splints might be making that worse I guess? Even writing this is painful but I need advice. What does everyone here suggest I do to get through the coming days?

If I take steroids for a few weeks (is that possible?) what impact will it have on me re masking symptoms again when I see the rheumy late November. I've plenty of pain but little enough swelling as it is? My GP said I could just phone and get a steroid prescription via reception tomorrow - does this sound best option under the circs does anyone think? Mat :?: :???:

Ps I should also say that despite the full quota of my pain meds - extreme pains in shoulder and wrists had me waking up crying and wimpering several times last night my hubby said - he had to decant to spare room next door in the end - so all is not better from return to normal thyroxine dose although I seem to have more mental energy and have a bit more spring/ less lethargy now!

valval

not having taken steroids not sure what affect they might have on you but she does not sound like she is going to be any help is there no one else where exhibision is going to take place who can help try emailing them with your worries they might have other helpers who may do a better job for you good luck hope it all goes smooth has your suit case got wheels on use no other type now lol val

Mat48

Thanks Val - not sure if others in the artists collective will be around to help. I only have the one email contact.

The committee has changed recently so I don't know what awaits me at all. Just know that without my wrists being better somehow I'm in trouble! Steroids are not my favourite option because I've had them several times for other things and back in May had an injection of Kenalog. Seemed to make my pain more intense but swelling and stiffness disappeared for a while. Not keen as they interfere with sleep and make me starving and I'm trying desperately to lose 2 more stone and sleep pattern is bad enough so that's not helpful.

But if it gets me through the week i feel it might be my only option at this late stage? Mat

stickywicket

Mats, the first thing I would suggest is that you talk to your GP tomorrow. He’s the one who could advise you how long to take the steroids for and, at this late stage, I can’t see anything other than steroids working.

With steroids you may well be able to manage in the gallery and en route with or without help (They are incredible, instant ‘miracle workers’ – until you want to come off them). If not, all I can suggest is that you take someone with you.

Also, unless you’ve been told otherwise, wrist splints usually come with the instruction only to use them for shortish periods. That’s because, with prolonged use, the muscles decide they’re no longer needed and fall asleep.

I hope it goes well for you.

Mat48

That is really helpful! My wrist splints are really old now - until recently reserved for night times only and I have been living in them for past few days but only because I've been completing artwork, walking dog etc so I'll make sure I don't wear them for such long periods after this advice thanks!

Re steroids - yes that's just what i needed to know thanks so much. Think they are my only option and after - well I can hopefully rest up and give these poor wrists a break. OH is collecting all the work after the show - phew!

My hands and eyes (and brain - what's left?!) are really essential to me as an artist so this arther been big worry to me on that front most of all.
Mat x

traluvie

Hi Mat

I would speak to GP and talk to him about the options of steroids, most people have good experiences with them and say that they help..They helped me both with swelling and reducing the pain, i have gone a few weeks without my next jab at the moment as i do not want to be reliant on them, but if i was having a bad flare then i would not hesitate to take them obviously on the advice of my GP..
Have you thought about getting a taxi to the expedition..?
you can buy luggage trolley's too..

http://www.gooutdoors.co.uk/royal-luggage-trolley-camping-storage-solution-p132087

Mat48

Sorry to moan and fret when others have many more heavy duty mobility issues but I took slints off and we went for a cold wi dy beach walk and I'm now back in studio feeling really weepy because of the intense pain in both wrists.

Other parts aren't fab either - my neck is still a problem although I can turn it a bit and knees and ankles are a bit jippy still but all is as nothing compared to these wrists. Feel nauseous sick with it. I have a pulley on my suitcase and an old back pack for the glass boxes. No option great for wrists though as even back pack tortures wrists when I put it on or take it off?!

Never sure what constitutes a flare? Swelling not very visible ever for me I can only talk about stiffness and pain and that's around most of the time somewhere inmy body these days. I hate the thought that things could get much worse but I know from reading other's posts that it could and may
well do so. Wrists and neck are quite enough sickening pain for me today!

That's why I've resolutely avoided steroids think they should be held in reserve for emergencies only but this is starting to feel like an emergency to me of course! thanks for confirming that they should work fast. I wondered about getting jabs in each wrist but that sounds hellish - but if it works better I would do it. Will phone GP first thing tomorrow and see what he suggests. Thank-you! Mat

dreamdaisy

An injected joint should be rested for at least 24 hours after the injection - that itself brings a unique pain and soreness and they are not necessarily that effective - do I need to say that we all react differently to them? Thought not.

Arthritics are nothing if not inventive and creative in the way they solve problems. One of the greatest assets in leading a successful arthritic life is not to doubt your own abilities, I have found over the years that things that I approach with trepidation go better than expected due to my involvement in the task so I hope the same will apply for you. DD

Mat48

Thank-you DD - confess I'm relieved as the thought of additional pain of needles going into wrists is very bad and if it's not got so much chance of working then that's a good reason to reject the idea. I think it must be carpal tunnel from what i've read. The wrists are where this all started last winter - shortly followed by feet and knees so obviously my weakest spots - but I was told probably carpal tunnel when I first went to a doctor last Spring. A lot of the pain seems to be spreading up in my knuckles which is new for me - used to it be just the wrists and finger and thumb joints. All is a little swollen now and am finding it hard to function properly today. Meant to be attaching safety velcro to a lot of items but felt sick as soon as I started so have abandoned this plan. Left hubby to take photos of it all.

Yes I know we all pull through and persevere I'm just being overly anxious. If it were New York my adrenalin would pumping to compensate for arther but don't like the relevant city where exhibition is being held (it shall go unnamed for that reason!).

Renoir had RA I believe and in those days this kind of pain would have gone untreated. I don't know how he coped - i can't even write these days - but that's probably accounts for chocolate box blurr round the edges of images in his paintings as his stylistic trademark!

I shall try and do what my son's always say to each other and their friends when they are being wimps and "man up a bit" - Mat x

skezier

Hi Mat,

the pain doc told me thursday that the jabs into the wrists are fairly ineffective.... i had thought that cus i had them once and they didn't do anything....

i do sale mat, hard work and a lot of lugging and if i can i 'borrow' a shopping trolley and well maybe thats something that would help if you could get one near by?

its hell sometimes and when you need your body to work best it seems to just give up the ghost and let you down but maybe yours will be ok for a min.

the wrist thing... keep those muscles very strong cus the better the muscle tone the less the pain. that one i do know.

steroids would be preds and they are sometimes a mixed bag..... was on them for sometime and they took out the muscles so they are not always the best way to go.

mat what tablets are you on cus maybe the gp can add in or change them to something else

you hang in there and it does get easier. Cris x

Mat48

Thanks Cris - pain meds are ibuprofen, codeine, paracetamol, amitriptyline all on prescription. I'm taking the anti inflam 3 a day as told to.

Woken up this morning with wrists feeling a bit better -wonderful - but my quandry increases in a way. I think I'll see GP if I can this morning and ask for an oral steroid that I can take with me tomorrow and then play it by ear if things worsen again. I think he'll buy that. I know last night it became so epic that I felt like my wrist and knuckles had been hit by a sledgehammer many times and I couldn't shift the duvet or shift a pillow let alone head off with a large suitcase and back pack or stick artwork onto walls!

Perhaps now I've completed all the making of artwork my wrists and hands will get a break and settle down again?

Will let you know how it all goes. Thank-you! Mat x

Mat48

Update: I went and saw GP and told him what had been going on since the Thyroxine debacle. He was really nice but re the exhibition advised that I should really try not to have these intense bursts of repetitive activity under the circs.

I looked him in the eye and said that until I had a definitive diagnosis - made on the basis of my symptoms - not just what they can see re blood results and visible swelling but on what I am describing, how can I take it seriously enough to alter my current lifestyle? If they won't then I can't - it's as simple as that. Once I know what kind of lemons I've got I'll make the lemonade accordingly, but until I know that these are lemons as opposed to beetroots or turnips, I can't get on and make the blasted lemonade! Feel better for having explained the way I feel it to him and to all of you and to myself now :shock:

He gave me a prescription for Prednisolone and Omeprazole to counteract the effects of all the anti inflams on my tummy - but said I should just keep the prescription on me as an emergency fall back only because I may need them more urgently one day soon so only go for it if pain worsens again. He said wear splints when I pull cases and ask for help installing artwork where possible and good luck. He will continue to document my joint pain and swelling (my knuckles he noticed this time) so that the brief, brisk and dismissive seeming rheumy can't dump me too readily from his list. Mat xx

stickywicket

Mat48 wrote:

I looked him in the eye and said that until I had a definitive diagnosis - made on the basis of my symptoms - not just what they can see re blood results and visible swelling but on what I am describing, how can I take it seriously enough to alter my current lifestyle?

I see where you're coming from, Mat, but this thing can be notoriously tricky to diagnose and sometimes all any of us can do, diagnosed or undiagnosed, is treat the current symptoms.

I hope you'll feel abit more reassured about your trip now that you have the pred. You also sound to have a good GP which is a huge asset. Good luck for tomorrow.

Mat48

I suppose it's all about feeling believed. But perhaps I'm projecting onto doctors because I struggle to believe the pain isn't really a figment of my imagination. I won't believe it or adapt properly I fear until I am told categorically that it isn't.

I did have a positive rheumatoid factor (not a high positive - 24) and a significantly raised ESR they know it's something but I hate the feeling that I am not being taken seriously. I understand that it's really hard to diagnose but I also know from a GP friend that in these parts rheumatologists are in such short supply that they are like Gods and we are very lucky even to be on their list. I know they get irritated with local GPs for referring patients too readily thus extending their already over full lists. There seems to be a lot of pressure on arthritic patients and GPs to be able to demonstrate our conditions to these people once every six months in a very short consultation.

It's really hard to know when to push and how and my only window is the GP because even following diagnosis there is no rheumatoid team or specialist for people in our small island community. That's why I get so frustrated!

Yes I will go forth tomorrow armed with exhibition and the necessary meds and prescription - hobbling all the way because I now find that the pad under the toe joints is really sore when I put any pressure on it at all! :P Mat x