What a total pickle to be in!!

As a lot of you know I have just spent 3 weeks in LA and SanFran (did you know that the inhabitants of that city detest us calling their city by this abbreviated name? I intend to use it frequently from now on) I was amazed that I lasted as long as I did and my devoted and much loved partner was a saint taking great care of me. On our very last day I woke up feeling a lot more stiffer than I usually do and within half an hour it felt like my joints were sticking together. The pain is off of the scale. We had a good flight home on a 747 and I managed to sleep for the first time, it was really bad getting onto the plane and when we landed I could hardly walk. I have this sticky stuck pain in my shoulder blades, knees, ankles and toes. I can just about walk taking the smallest painful steps and I just don't know what to do. Have any of you had this sort of experience and what did you do to help yourself get through it?

Thanks again for allof you replies.


26 Replies

  • Paul,didn't you get them to give you a wheelchair? I did the last time i flew. They took me and hubby straight through customs.

    You need to contact your rheumy asap as i don't know what to say to help you.xxx

  • Ouch Paul! Not good. Agree with Sylvi, get thee to the rheumy my lovely. Hugs Janet xxx

  • I only wish that I could get my thee to the rheumy but it doesn't work that way here. It's appointments only and there is only one RA Consultant and as you can imagine she is over worked, poor thing. My GP is a great man but he doesn't know that much about RA. I will have to send an email to my Consultant and then hope that she replies.

    Thanks for the reply.


  • can you get yourself into a hot shower or bath to help ease joints?..try to keep mobile xx

  • Hi Paul,

    It's more than likely, that all your leg joints are more swollen and tender than usual, and that can cause loads of pain. When i have taken a long haul flight, it takes about two weeks both ways!!, to start to go down especially the ankles, my legs feel unbelievably tender, can't bear anything to touch them, and the swelling on my ankles is huge. The shoulders are probably sore, because you have been either pulling yourself out of things you don't usually use, or your partner has had to yank you more than usual, (take it from one who knows!!) I got back from Norfolk on Mon, and my right elbow is killing me and my ankles are still swollen, and thats just a car ride.

    Try to get your Consultant to see you, have you thought of trying another hospital with more doctors.

    Hope you start to settle , and that being home helps.


  • well jenny aka chubby you look much younger than 61bx

  • Thanx Summer, My late consultant used to tell me, one, and perhaps the only, good thing about having juvenile ra, is that you often look much younger than you are, unfortunately, how one feels, is slightly different!!

    62 this year, can't believe it!


  • Hi Jenny, I just looked at your profile and can see how much you have gone through and you've got to this stage in life, how do you do it? So pleased, well not pleased, that others have had a similar reaction to travelling as you have. I was quite anxious about the flight home as it was a night flight and I normally stay awake praying for the sun to rise but I managed to sleep. The pain started on our last day and I think a part of me said to myself 'Well you've done it, you don't need to do anymore here comes the pain' I am totally wheelchair bound now and I was nervous about every pavement, every curb, every road and my much beloved says' You're alright sat in that chair' I am not alright in the chair, I am so much nearer the pavement etc than he is. I also think we were away too long. The boys have come back a lot worse for it which makes me feel guilty and now when I do stand I can just about move my feet 6 inches or so and it's agony. There is no walk in RA clinic here, in fact there is no walk in anyting bar A&E so I have written an email to my Consultant but I have no idea when she will reply to me. I am sorry to put all of this on to you but without you and the rest of this wonderful forum I don't know where I would be. I have to go as Monty is giving me big bad miows so better go and see what's going on...


  • Paul,

    One has to keep going, and believe it or not I had quite a few years of almost normality, before my legs joints started to go. I have periods of deep depression, last year being one, but it's usually because of constant nagging pain, and frustration of not being able to do things i want to, much like most of us here. I now give in to wheelchairs, quite often, when needs must, otherwise I try to walk with either crutches or sticks, but they're so exhausting. At least you got to the west coast, and that's something pretty great, and to be proud of. Once you have been home for a while, you will only remember the good bits, and be saying what a great hop that was! Try to get your gp to give your something strong for pain, do you have oramorph, I was almost drinking it on the plane when I travelled. Take care, give the boys a stroke for me (if they will let u)!!!


  • I do know that I have to keep going, my partner keeps saying to me 'If you don't use it, you'll lose it' and I want to scream at him. I know that you know where I am coming from when the pain you have is all encompassing. I have never had so much pain when trying to stand, he has to pull me to stand me, he has to pass my walking sticks to me and trying to take a step feels as though my kneecaps have burst there is so much pain. I want to be able to get up out of a chair, walk to the kitchen, do something but this pain hasn't stopped for 3 days now. i do have oramorph but like all things it's rationed so I can't go too mad so I have to be aware of how much I take. Like you I could drink the stuff like a cup of tea and as I write that I realise I can't even do that. I'm trapped by my own body. My shoulders are going through the mill along side my ankles and toes and my body isn't mine anymore.

    I'm sorry I've got to go

  • Monty, the gorgeous ginger cat has walked in and I have stroked him telling him it's from Jenny. He seemed to smile at me in thanks to you for the stroke.

  • Purrrrrr to Monty, its a real coincidence but my sister had a lovely ginger puss called Monty. Paul, you really sound as though you need to get on an anti tnf or something, what do you take now. It is so miserable to be in such constant pain, what do you take at the mo.


  • I take MST, Oramorph, Gabapentin, Nortriptyline (I can never remember how to speall some of drug names) My body has no reaction to steroid injections. A lot of hope, some prayers, healing hands and distance healing....

  • all spelt correctly dandy xx

  • OMG Paul, your are a walking! painkiller. Seriously, though have you tried Dmards yet, as it sounds as though, you ought to be trying them, if you haven't already.


  • Yes this happens to me after travelling. I do my physio and move the joints through the discomfort. I also increase my painkillers to the maximum dose allowed.,GP's are often the best at seeing to your pain relief and in any case if you have swollen legs you are best to see the GP, there's always that small risk of DVT!!

    Mine did settle after a few days resting then moving but get checked and email the Rheumy. Do you not have a helpline at the Rheumy department of your hospital.? But GP first line of help then for your situation xxxxxx

  • good point allanah re dvt xx

  • Danny I'm curious about whether you've tried dmards or anti-tnf yet? It seems strange that you are on all these powerful pain meds but not anything that might help with the disease itself? Hope things improve for you very soon - sounds like you are paying a high price for the long distance flights and all the trekking around in wheelchair etc - I think Allanah is right and you need to get checked out for DVT. A&E might be your best bet. Tilda x

  • paul i will say this lad 3 weeks in la in your condition i take my hat off to you

    you must be a man with TRUE GRIT.

    good on you lad top man

  • I don't know what to say but Thank You


  • Hiya, have u managed to get seen by anyone yet mate xx

  • Mate! My name is Paul - and no I have not seen anyone yet.

    Thanks for asking

  • Hi Paul,

    Can you believe it, it's snowing again, boy, am I sick of this weather, anyway i digress, hope you are feeling a bit less painful today, has your RA consultant ever discussed Arthritis drugs with you, why i ask, is for about 40 years, I managed on painkillers and non-steroidal drugs, when all of a sudden I was told I must be on one of the Disease modifying drugs, and Boy, have I tried some. However there is an awful lot to be said for some of their results. I know it takes ages to get appointments, but it's worth a polite and gentle rant.


  • In answer, no I am still in a lot of pain and then yes my RA Cons. has discussed this and I have been on steroids, methotrexate and some weekly injection thing, none had any effect. I am waiting to start tocsilimulab (not sure of spelling)

  • Paul,

    Reading between the lines, you sound a bit off today, I think your hols, have probably taken it right out of you. I have tried Tocilizumab, but had to come off it because of raised liver bloods, something to do with age!! but when I go to my hospital for Ritumimab, there's a young chap, who is doing brilliantly on it. So fingers crossed for you. Take care.


    ps any news of your trip advisor appraisal.

  • Hi I just want to say, have you tried putting ice packs on your knees etc.

    I suffer aswell and after going to a chiropractor with sciatica, I was told to put ice packs on painful joints for 20 minutes and it really works! And can be repeated every hour if needed.

    If your joints are still painful when they have warmed up again then use pain relief cream if you have any, as it will work better as the ice pack has taken all the swelling down and the cream can get to work on the joint!

    I thought it wouldn't work as have tried other things and physio couldn't help, chiropractor was my last hope and I was so amazed at how much ease I got from the pain I cried.

    I have a ginger cat named max and a tabby named Minnie moo stroking them does help ease pain as all cats have healing powers. If you are in need they will lay with you and purr while you stroke them, the vibration of their purr brings your bodies natural vibration in line with their purr and your precious furry angel then pulls the pain from you.

    If your precious furry angel ever god forbid becomes unwell he will lay with you for you to stroke them and your bodies vibration matching up will give him the strength and love he needs in effect you will heal him!

    I have strong brief in angels and have asked them to watch over you all and give strength and guidance.

    Angel blessings and strength to you and tickles for your furry angel

    Take care

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