Hi. Trulyfedup here. It's 2am but pain so bad don't know what to do...can't take anymore pain killers had too many already. Really fed up.

[Trulyfedup]

What do I do with the next few hours. Really fed up. My left foot looks like an elephants and my left had looks like it's got fat sausages for fingers. Where is my knight in shining armor looking like Robert Redford used to look? Sorry really down at the moment. Run out of zoplicon's as well...shouldn't take two one night instead of one. Thought of going on line to buy them but you never know what you are getting it can be quite dangerous I guess anyway far too expensive. Going to turn out the light night and try to dream of Eddie Izzard.......Yes really! Thanks for reading my night moans. Mary x

[Hidden]

Hope you managed to get back to sleep by now?

I've been awake since 2amas well. Pain in feet and legs and chest rib cage too. Haven't taken anything for it because I'm on strike - want to see a rheumatologist or a specialist nurse before I start any more drugs - even painkillers. The only way that will happen is for me to be sent to Aberdeen and so I'm striking until I am! That's my thinking anyway but whether I will keep my resolve while lying here struggling with heavy tight chest and ribs hurting as well as everything else is not certain! X

[Trulyfedup in reply to Hidden]

Hello TildaT, it was good to hear from you. I read that you had seen a wonderful podiatrist that you were given great help and I thought "at last" for you. You are very brave going without pain killers, i should try more really. Reading your emails I take it you are up in Scotland my father and family are from there...my maiden name was McIntyre..I still have my kilt in our own tartan. I am very proud of Scottish roots I think that's where I get my sense of humour from. Apparantly, I am realated to Robbie Burns!!!! I fell asleep about six in the end it was awful. Everything always seems a lot worse at night. We should start a 2am club it appears quite a few of us are awake at that time. I really hope you hear soon I was very happy when I read your email - when you were in hotel you sounded so upbeat, like something had been lifted, I will keep my fingers crossed for you....oh just remembered can't do that with the fat sausages I've got for fingers at the moment....so I.ll mentally cross them. Mary x

[allanah]

Well I hope you managed to get some sleep, I remember you said the doctors are taking you off your tablets is that right? You seem to be going through the mill now with all your blisters and cold and pain. When do you see the doctor again to get you back on rheumatoid medicine? It is best if you can take painkillers because really I was thinking, when I don't want to take mine, I am just cutting off my nose to spite my face! So what if you still have some of your morphine maybe it's a good idea to get some and it we should get some relief until you are a dmards kick in.

And I thought I was the only one who had an Eddie Izzard fetish LOL

[Trulyfedup in reply to allanah]

Oh yes Eddie Izzard...I'm very sorry but he's mine! I'm off MTZ injections 25mg, I don't for how long..I'm still on infliximub, I am scared about coming off as you yourself in aware the pain is another thing but side effects were causing more harm that good, or so my GP thought. I do have a good GP, he is very understanding and I go each week...blisters still with me but improving, I just feel so run down...I know that it will pass and I.ll have a good day soon but isn't it sad that we all say "good days" rather than weeks. If you like Eddie you must have a sense of humour does that help you. I wrote a poem about him once..if I get brave enough one day I may put it on here for you to read!! Thanks you for replying, it's good to chat about all things not only the R/A. Take care. Mary

[Ronnie63 in reply to allanah]

Join the eddie izzard queue, so excited he's running for London Mayor in 2916:-)))))

[allanah in reply to Ronnie63]

Really, will have to move but how funny is that, Boris re Eddie , who next ?

[Ronnie63 in reply to allanah]

Think boris will be in Westminster by then so Eddie should have a clear run, he'll make a great mayor, whether he does it in French or German I don't care, he's a true European, very intelligent and truly entertaining, I love him

[allanah in reply to Ronnie63]

Oui moi aussie xx

[Ronnie63 in reply to allanah]

I confess (in a good catholic way!) to having a soft spot for Paul Merton too, his humour is also random which I like xx

[Trulyfedup in reply to Ronnie63]

I'm with you there too!!!!!!! Good job we do t live in same town we'd be fighting over the same men lol. Ve just taken co-coda mol and tramadol on the hope I sleep better tonight. So I shall be onmy way to a date withEddie soon. I shall tell you about it tomorrow! Mary x

[Trulyfedup in reply to Trulyfedup]

I'm just watching channel 5 about a little Indian boy who when born had his twin half growing out of his chest. It is humbling and makes my problems seem so small. Turn it on and watch it will inspire you believe me.

[Ronnie63 in reply to Trulyfedup]

And the poem, don't forget!! Sweet dreams

[Trulyfedup in reply to Ronnie63]

Ok...I'm sobbing at the programme. I,ll tell you about my date tomorrow. Goodnight and good sleeping for everyone. Mary x

[Ronnie63 in reply to allanah]

I thought you were scottish originally?

[allanah in reply to Ronnie63]

Em yeah? Was and weirdly still am ? Oh is it the French? Lol

[Ronnie63 in reply to allanah]

Turu!!

[allanah in reply to allanah]

Ha ha ha , get the barbie on s'il vous plait

[Ronnie63 in reply to allanah]

Merci por le tasse de Fosters Gold por mon friend!!

[Trulyfedup in reply to Ronnie63]

So do I ! I fancy him as well. I could listen to him speak constantly in French or Englidh and I only have school French so that shows you how much I love him! As you say he is very intelligent, articulate and approachable. I might if I get brave enough put poem I wrote about him on site ...in horrendous pain at the moment can hardly walk so can't wait to see my GP TOMORROW. MARY x

[Ronnie63 in reply to Trulyfedup]

Please do Mary, you can't tease us any longer I have pre-ordered his latest DvD, Force Majeure on Amazon, it's released on 21 Nov, can't wait!! I love when he lapses into James Mason, my husband does a very good impression LoL

[Trulyfedup in reply to Ronnie63]

He could lapse into me anytime lol.

[Ronnie63 in reply to Trulyfedup]

Mmmmmm xx

[allanah in reply to Ronnie63]

U lot all on steroids or oestrogen lol

[Ronnie63 in reply to allanah]

No, just feeling better and in a mischievous mood:-)) speaking of steroids, your limerick was truly beautiful you know? Xx

[allanah in reply to Ronnie63]

Glad ur r feeling mischievous! And awwww xx

[Ronnie63 in reply to allanah]

Still never realised you australian (see spelling above !) re boris v Eddie

[Trulyfedup in reply to Ronnie63]

I've only been on this site a couple of weeks and have reached the decision you're all wonderfully bonkers!!!! Codeine and tramadol giving a little respite...YES !!!!

[Trulyfedup in reply to Ronnie63]

Here it is Ronnie63. It isn't very good but it might make you smile.

John Edward Izzard, I wish you' marry me -

We could wear the same frocks in the garden

When having tea.

A pot of Early Grey

With tiny china cups,

And I.d try.very hard

Not to slurp. I.d sup.

You could wear The basque

On me they look hideous

And so e afternoons we could go-

From the sublime to the Ridiculas

I'd listen to your soliloquy

And cheer at your articulate narration,

And even all the animals in the garden

Would be on their feet - with a standing ovation.

And when the evening fell upon us

With shadows behind lightly,

We go indoors

And both put on a nighty.

P.S.

I'd write you a sonnet

With lots of words on it.

Mary.

[Ronnie63 in reply to Trulyfedup]

That is brilliant Mary, very funny. I'm imagining the scene is set in the 19th century

Has mr Merton got one?

[Trulyfedup in reply to Ronnie63]

I'm trying to write one for Paull Merton. Feel so much beetter today after the morphine and the steroid injection. My dream about Eddie is going to be fun!!!!!!! I,ll let you know in the morning. I may have to remove certain thins as it will probably be rated as a PG.!!!!!! Good night I hope you have a good one...I've got infusion of fliximub tomorrow mary.x

[Ronnie63 in reply to Trulyfedup]

Look forward to it!! and hope your infusion goes well xx

[Trulyfedup in reply to Ronnie63]

Went to the hospital they wouldn't do infusion, apparently my body isn't coping. So I'm off that and methatrexate. The staff nurse old me to phone doc and get more morphine. I'm very worried as I know what pain is coming also whilst not on anything complaint progresses. It's because of the blisters etc. bugger! Hope you are ok...still working on Paul Merton.mary.x

[Ronnie63 in reply to Trulyfedup]

Oh Mary, so sorry to hear that, very frustrating for you. Hope they find a solution soon, as you don't want to be on nothing at all for too long. Is this the first Biologic you've tried? I wonder why they've stopped methotrexate as well? Did you have issues with MTX before? Now these are strong grounds for being truly fed up!! Am glad you are still,smiling

Do you ever listen to Paul Merton on just a minute on radio 4, he's so sharp

Take care

Xx

[Trulyfedup in reply to Ronnie63]

When I went to see the consultant 2 months ago he took me off everything as I was vomiting and had blisters everywhere...he did a lot of test...a few weeks after I rang clinical nurse to see if I could go back on MTX and influx, she said yes. Apparantly she shouldn't have said that!! The staff nurse today looked quite angry when I told her....my body isn't coping at the moment. (I think she's in trouble. I don't go back until 20th November, so they are going to try and get me in sooner.....what a nuisance eh? I feel shitty now what's it going to be in a couple of weeks but I'm sure I.ll cope...we always do don't we and it will give me time to write a Paul poem. I hope you are doing ok. Thank you for your concern..this site has really helped me. Mary x

[Trulyfedup in reply to Ronnie63]

Hello Ronnie63 just calling in to see how you are...I'm working on Paul Merton...shouldn't be long.... I hope you are not too bad I'm not going to mention how I am people must be getting fed up with me. Mary x

[Ronnie63 in reply to Trulyfedup]

Hi Mary

How spooky, was just replying to your other post when you were writing this. I'm. N a lot of pain today, week four of back issues and headache issues Fell unsure as to what's causing it, have a call out to my rheum my team, back at the osteopath this ending and GP again on Monday. I might borrow your name today as that's how I feel about it. Am trying t work rom home but very uncomfortable, maybe I'll have t stick Eddie in the DVD player this PM, what one are you going to watch?

Ronnie xx

[Trulyfedup in reply to Ronnie63]

I've got three from different stages of his life...sometimes I just go on my iPad and put in his name and Wow there he is!! A friend of mine went toa red carpet thingie and he cae over to talk to her...she took a photo on her mobile and gave it to me..so I cut her off!!! And put him on my kitchen wall. I'm sorry you are not too good at the moment it's awful isn't it? I wish you well...and I.ll share him with you this afternoon!!!! X

[gilox in reply to Trulyfedup]

Love it!!! Gllianx

[Trulyfedup in reply to Ronnie63]

When I'm sitting with my line in....I.ll probably be on here a lot!!!!!! The steroid injection really seems to have helped! I normal today...haven't taken the morphine - it's not needed. I shall work on Paul Merton. Hope you are feeling ok today I really do. I forget how lovely it is when these drugs work the first few days....even my legs are warm, it's wonderful Ronnie63 . I.ll email from the in-line room x

[gilox]

What's with the 2am? I had to get up as shingles pain was rampant,Connor dog decided that if I was up he needed a pee,so theres me at 2am, wandering round the garden freezing cold,(but cold seemed to help the pain) took yet more paracetamol,back to bed, Hope you both managed to get some sleep,& you are feeling better this morning. G. X

[Trulyfedup in reply to gilox]

Someone has said on site about a shingles vac. Do you recommend it? My son, has just got over shingles (he stayed away) he said it was so painful. I hope you start to feel better soon and Connor dog behaves himself tonight! Xmary.

[Trulyfedup]

Perhaps we should start a 2am club as it appears quite a few of us are up and around at that time! I went off about six in the end. I used to have a black Lab called Oliver. He WOULDNT go out in the dark!! Bless him, he was my best friend for eleven years . I hope you were able to get back to sleep. A dark, cold garden at night is not the place for someone in pain.!!!! Hope you had some respite. Thank you for replying.x mary

[gilox in reply to Trulyfedup]

Amber refuses to go out in the least little bit of rain,then spends ages looking at me as if I can stop the rain,she will never deviate from a foot path,go anywhere near a thistle or stinging nettle,as for mud forget it! But she is a 10 year old Llasa X yorkie so guess she will always be a bit of a diva!

[Trulyfedup in reply to gilox]

I really miss my animals. I used to work for animal welfare, it broke my heart many times and tears just flowed but there were lots of lovely people out there who took many of the rescued pets on...I miss not been able to do that now...I feel a pretty useless person these days..not allowed to drive anymore as I was having fits and even though they have stopped myGP doesn't want me driving also my feet and knees are not to good these days. Oliver, my lovely black lab was terrified of parks after being attacked and chased by two ducks!!!! He wasn't very brave was my Ollie but if ever I was sad and up at night he would come and sit with me and put his head on my lap...OMG I'm making myself cry???better stop talking about him. I'm glad you have pets they give so much any Amber is ten so she is now wise to the horrible weather and I don't blame her for not wanting to get cold, wet or muddy! Mary x

[gilox in reply to Trulyfedup]

Mary I love my husband,but I'm afraid my doglets come first,I had no thoughts of getting another dog when Connor found us, he's a jack russel x chihuahua, he was a "handbag" dog belonging to an american woman,she'd asked her neighbour to look after him as she had to go to London,the neighbour agreed but said she was not allowed pets in the flat.6 hours later she had a text saying she was on a flight to the states & do deal with the dog!! It took us 6 months to convince him he was a dog & that shopping bags were nothing to be afraid of!!But he sure as hell knows he's a dog now,lost count of the number of rabbit holes I've rescued him from! Its such a shame you are not able to have a doggie friend they ask so little & give so much, Gillian X

[Trulyfedup in reply to gilox]

How funny. He sounds such a character. I rescued a springer spaniel my lovely Sam. He was once a gun dog but when he became frightened of the bang he was left on a train...my friend phoned me and said "Mary I've got this dog called Sam who has been left on a train...come and see him". I said NO I don't want a dog...well I went to see him took my young kiddies and Sam came home with us! The first year he was so well behaved due to his training after that it all went pear shape. I.d call him in the park and he would just give me a look that said..."Yea right!" We had him for a wonderful six years. I loath this handbag dog fad it's appalling but sounds like he has a good home now. Enjoy his little tricks I envy you...maybe one day. Mary x

[allanah]

Lol there is a two am club usually led by Sylvie, loads of us are awake as you can't settle in bed when u r sore . Infliximab is meant to be good stuff so I hope it kicks in very soon.

Well I like a joke but others on here might not agree , yes I mean u scouser! But love Eddie and the fact he is fluent in French held too o0 la la! Ye get that poem out .

Have u seen the crazy strictly stuff here it's made me laugh !

So rest up be good to yourself , u are worth it in the words of Loreal xxx

[Trulyfedup in reply to allanah]

Yes I have been reading it and I have laughed too. It's good that we can talk about other things isn't it? I thank you for replying its so kind to know others care..it is a great thing. I pass a smile to you...pass it on to someone else. A smile travels so well and it's free.x mary

[allanah in reply to Trulyfedup]

[Trulyfedup]

May I join your 2am club please? Mary

[allanah in reply to Trulyfedup]

Of course but now I have mr morphine on my bad nites and yes he's good!

[Trulyfedup in reply to allanah]

Oh yes he is!!!!x

[allanah in reply to Trulyfedup]

What he's cheating on me lol!

[Trulyfedup in reply to allanah]

Yes he was but only now and then but I do love having him around so be warned!! Mary

[allanah in reply to Trulyfedup]

xx

[Hidden]

My recipe for as good a night as I can get:

1. Firm mattress but with a duvet in lieu of a topper (just as good and a fraction of the price)

2. Malleable pillow (feather is best) that I can beat into shape to support my neck in a straight line

3. Big pillow to support trunk and left arm, to stop pain in my left arm and shoulder

4. Slim pillow for between my calves

5. Anticipate the pain; take 2 x paracetamol and 2 x Codeine as I retire to bed.

6. Oramorphine on standby on bedside table, just in case

And even then I can occasionally join the 2 AM club. But, fortunately, that time also coincides with the pemitted interval for another dose of paracetamol and codeine

[Trulyfedup in reply to Hidden]

My God thTs what I try and do with pillows here and there, especially my neck and left leg and left arm. Thank you so much, the slim pillow between my calves, never tried that but will tonight as knees become so painful laying on my side...never been able to sleep on my back. If I don't get the neck pillow just right I wake with bad pain over ears and down my neck plus headache. It is wonderful to find out all these different ways you all try to get yourself in a better place. I have learned so much since joining this site (only two weeks ago) I wish I.d joined earlier. I have a great approachable GP, who is very understanding and gives me the odd morphine tabs to help me but I always run out a few days before the end of the week (I see him every Saturday) I think I am so wretched by the time I get there on Sat that I take one the moment I get home so always gave a wonderful sleep sat afternoon when really I should hang on until I'm crying with pain...it is just a wonderful release that I can't wait for it!! I will def try your steps to a good night and thank you so much for bothering for replying. I hope you have respite some nights - they are always so long . Mary

[allanah in reply to Trulyfedup]

Well i get three boxes at a time and they can last me months but it's the only painkiller that truly helps me, my friend swears By Tramadol and I also use 600 mg Brufen tabs, your doc will know what suits you though xx

[Hidden]

Personally, I do not subscribe to the view that you should wait until you are screaming with pain before you take the appropriate medication. I'll bet that you, like most of us, understand your pain well and can predict when a particular onset of pain is going to be a bad one.

My GP tells me that I should take paracetamol six hourly everyday regardless of pain because it's inevitable that within that period I am going to have multiple episodes of pain to actually deal with. By anticipating and medicating in advance you can often prevent it getting out of hand.

You might also want to talk to your doctor about a medication called MST Continuus. This is a slow-release form of morphine which is available in five, 10, 15 mg tablets. It works on a 12 hourly cycle so two doses a day get you 24 hour coverage. I include one in my cocktail of night-time drugs that I use when I retire.

The benefit of ora morphine is that it is a liquid. It tastes horrendous so need washing down with water, but its effect is almost instant (or at least no more than 10 minutes). You have to be careful with measuring it out to avoid under or overdosing and the pharmacy will probably provide you with a five mil syringe for that purpose, if you ask.

There is actually no reason why you should have to have the morphine tablets rationed. So long as you observe the dosage instructions you can't do yourself any harm and why should you be in pain?

[Trulyfedup in reply to Hidden]

Thank you for reply. My GP is quite happy to give them to me, the hospital are the ones who don't like me having too much. I also take tramadol but have been taking it for so long I'm not sure if you build up a resistance to it. I'm trying to be so sensible with the morphine but it is such a release....my GP also prescribed zoplicon 7.25mg but again I've been on them a long while, they still help they are my life line - I.d hate to be taken off them but I make the mistake that when I've run out of morphine jake two of the Zops to get me away from pain and I'm not a baby...I did wonder if I was but joining this site has shown me that I'm not a baby...I've got R/A in most joints and do find it hard to cope some days. I'm on MTX (actually just been taken off as side effects were becoming a bit naughty) and infliximub every eight weeks...I reacted to it at first so I have a cover now before infusion. Blimey I seem to have gone on and on, I am so sorry but it's so good to at last talk to others who understand. Yours sounds pretty full on how do you cope? Once again I thank you so much for reply it's very kind of you. Mary

[Hidden in reply to Trulyfedup]

The hospital docs sometimes don't understand the real world we live in. They tell me that the opiates (codeine, morphine etc) are not good for rheumatic pain. And it's generally true that if you can take NSAID's then they should be your first resort, but for those of us who cannot take NSAID's the opiates are the only choice. Yes they can be addictive, but if you are in constant pain then what does that matter?

[allanah in reply to Trulyfedup]

I think GPS are better and more experienced at pain relief than hospitals, but my consultant Rheumy agrees the the six hourly Panadol is one of the best solutions to keeping

Ng pain controlled. I use continuous mst which is marvellous but if I say didn't have a dose on those misleading times when I convince myself I don't have RA then I resort to ora morph. And no , it's so difficult to explain to people how bad the pain and the fatigue are, I didn't really know till I got it! My family all have RA and though I helped and felt sorry actually having it is a different matter isnt it!?

[allanah in reply to Hidden]

Great reply, that's what I meant , but had ten seconds to jot it down lol, kids off college today xx

[gilox]

Oh my, I feel so guilty,I have been so lucky up to now, the pain I have is nowhere near what you all seem to be suffering,the shingles is quite the worst I have ever had,so I really Must stop whinging! Hope you all have a better night tonight, hugs to all. x

[Trulyfedup]

Oh please don't think that...all pain is relative and I have found out since joining this site that there are a lot of people far worse than I. Shingles , I have been told is extremely painful so don't feel guilty...you sound like you have a kind heart so I send you a smile and pass it on to someone else..it's free. Talk to me anytime you want, today I'm on my bed so really enjoy learning about all of you and never diminish your pain. Mary x

[allanah in reply to Trulyfedup]

That's the thing I think about RA, it's different to everyone, so don't worry that u might get bad pain or indeed feel bad about having good days, it's such an unpredictable disease and I have seen people here go from wheelchair to medical remission, so we are all different but all have some form of inflammatory arthritis I had shingles after my spine op in December on the wound! Now that blooming hurt!

[Trulyfedup in reply to allanah]

Oh God I bet...shringles seems to be quite rife at the moment my son has just got over it. He said the pain was something else and I couldn't help with his little family because I couldn't go near him

[allanah in reply to Trulyfedup]

Apparently there's a new vaccine for over 70 s , wonder if it running out to those on immune dropping drugs xx

[gilox in reply to allanah]

really really hope so,I'm fairly sure I can get it as I will reach 70 next week,but having got the thing would hate to hear of anyone going through this sort of pain just because they are not old enough is sick!!!

[Trulyfedup in reply to gilox]

Im 58 so won't get it but as I've said before I do have a wonderfulGP SO WHO KNOWS. I hope you find yourself in a better place soon I really do. Mary x

[gilox in reply to allanah]

omg!! Really cannot get my head round that sort of pain!!

[Trulyfedup in reply to gilox]

It isn't every hour or everyday honey....but when it does come its horrendous.....but there are times when I have a laugh with family and friends I am very blessed. Also Mr Morphine is becoming a real great companion!!!! Hope you are ok and thank you so much for your reply. Mary x

[earthwitch]

Did you take photos of those sausage fingers and fat foot? Good idea to, because you can just about guarantee it won't be like that when you see the rheumatologist next. I've had a few friends finally diagnosed when photographs were just what was needed to clinch a "suspected" diagnosis.

Hope you are feeling better now and get a better sleep tonight

[Trulyfedup in reply to earthwitch]

Thank you very much, I think I will because you are right..it never plays fare when at the clinic! It makes you feel such a fraud but I ,know I'm not. I'm at the hospital Middle November so this is when they ate going to decide the next moves. Let's hope we all get to a better place soon. This site has really helped me, it is such a release to talk to others and get good advise. Thank you....keeping fingers (if I could) for all to have a good night but I've run out of Zoplicon and morphine ( I'm only given 2/3 each week). Mary x

[allanah in reply to Trulyfedup]

Call GP and ask for more! Before the weekend, they will chat with you on the phone! Xxx

[Trulyfedup in reply to allanah]

I'm going tomorrow I see my GP every week. I've just taken everyone's advise and taken photos of my hands knees and feet ready for the hospital. Once again thank you . Mary

[allanah]

Ur GP works Saturday, pick me up off the floor! Have a look on the green bar at the top of he page telling you there is a message too!

[Trulyfedup in reply to allanah]

I don't understand .

[allanah]

Lol I mean our docs never work Saturdays! I am surprised xx

[Hidden]

Nor do ours - but we have a 111 service that works!