I'm being pulled about like a puppet

I'm being pulled about like a puppet

Hi Pepes

do you ever feel like your tendons/ligaments are being pulled through your body and being knotted above your head.

Thats the closest I can describe whats happening to me, then my legs and arms cramp, even my fingers lock then the pain starts.

It's a week today since I had my carpal tunnel op, whats happened to that week, I didn't notice the days were going past and so quickly this must be a form of memory loss. pain wise it's getting worse the joints are getting hot and swollen, The Humira and MTX have definitely gone from my body so I only have pain killers and steroids to help.

The wound from the carpal tunnel op a week ago today has started to heal, but I will only be able to have a steroid injection when the wound is very nearly healed over.

These cramps started a couple of weeks a go I suppose when the humira was stopped, then a week later as my liver function was not so hot I came off the MTX. That is now a month, and its telling on me.

I can have a depo injection but I'm trying to hang on as long as possible to give the wound chance to heal properly. So I'm between the devil and a handcart. Thats another oldies saying. Gosh I really sound miserable sorry, I'll try and cheer up.

Tricia

x

18 Replies

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  • think you will have to have something...steroid injection.. or talk to gp bout increasing oral steroids...., take some magnesium good for cramps and drink gallons of tonic water... quinine lol.... disclaimer.. this is not medical advice lol.....!!

  • Oh dear!! disclaimer tut tut !!

    Ahhh never mind!

    mand xx

  • think the ac=dive advice may help?

  • Especially a gin with the tonic! lol!!

    mand xx

  • Hi Tricia, you have my utmost sympathy as you are now in the place I visited last summer after knee surgery, having stopped mtx due to neutropenia and Enbrel for the op. It is truly not a good place to be and I really feel for you.

    The good news, current rheumatology advice is that anti-tnf can be restarted two weeks after surgery providing the wound is healing well (someone omitted to tell me this!). I think perhaps a word with rheumatology might be in order because if the RA gets a grip it may be difficult to get back under control with the Humira (after 4 weeks off, it's almost out of your system and it's like restarting.). Depo might be the way forward to avoid future problems.

    Hope you start to pick up again soon,

    Lyn x

    PS Love the oldies saying :)

  • Hi Lyn and Ali

    I phoned the Rheumy nurses after putting the blog on, They are lovely and so sympathetic but the've said must try and wait another week as the steroids will interfere with the healing process, I must also have the wound double checked cos if theres any sign of redness etc I can't have the injection.(:

    We begin to sound like drug crazy addicts that are fixed on heroin or something,lol

    I remember writing on the forum last year, October when my CRP for no reason hit the roof, it turned out that Humira had started to last less than the 14 days between injections, in fact down to 8 or 9 days then 7 days by then every time I opened the fridge the Humira devil would shout at me come and take me, rather like the cool polar bear in the birds eye adverts.

    I'm sure after all this time Lyn you have been up and down the RA ladder, to me at this moment in time it feels like i'm just starting out on the first rung and I'm remembering all over again like Groundhog Day what a BLEEP Rheumatoid BLEEPING Arthritis feels like. What on earth was I questioning my consultant about 3 weeks ago when I asked him are you sure its RA. Silly me.

    Tricia x

  • Not puppet Tricia. Cold Turkey by the sound of it. It never ceases to amaze me, makes me angry and my flabber gasted, with all this modern technology that we still have to suffer so much agony.

    Whilst they sit back and say oh hold on a few more days.... you get your strings pulled by an invisible puppeteer! Perhaps intravenous Gin, Or Vodka as you are not taking any drugs? Lord above.

    Phew. I do hope you get sorted sooner rather than later and you get your fix!

    Go careful and good to hear the hand is healing but I expect you haven''t noticed much difference with all the other problems you are having.

    Good Luck x Julie

  • Oh Tricia, I feel for you too having had many ops myself I know exactly where your coming from. You just want to shout "Give me something,anything"

    It's such a difficult situation like Lyn said, but hang on in there you've got this far you need to heal that wound properly.

    Take care luv

    mand xx

  • hmm.. i went cold turkey for endoscopy two weeks ago.. consultsant said no food.. no meds..( gastro consulitant.). my methotrex.. had left my system....it was no food or pills.. from midnight day before op... got there at bout 10am by midday.. was virtually shaking.. with pain... i had pushed dose of steroids down low before prcocedure... but was still not at zero.. in a flare....,I then had the endo without sedation..( got bumped up the list.. so i cld have water food and tablets...(was at the end.. when consultant heard was in pain got moved up list). so two weeks on.. back on the steroids.

    . diff consultant. (different disscipline). bioopsy under general aneatheic... this type my and gp and i increased steroids before procedure all meds still taken.. admitted 12 15 lunch time....

    consultant and anaethetist took full med history re drugs.. anaeth said she would top my steroids.. whilst unconcious.. different outcome....

  • I'm sorry that you're in this horrible place today - I too know this place and it's horrid. Recognise the junkie/withdrawal from drugs/ desperation - 'just give me the damn drugs' scenario too:-)

    I used to wait too long before asking for help and flares got out of control so trying to be more sensible now. I have to have steroid cover for anything i have done including dental surgery cos my body can't cope (make it's own) after so many years of steroids.

    Sending beams of sunshine to give you strength and a cyber hug so you know that you're not alone:-)

    Cece x

  • Can you get some morphine for a short term to get you through or something like that? These clinicians have got no idea what the pain is like. I honestly couldnt bear it last time I had a flare. I was nearly crazy and i think I all most lost a grip on reality trying to handle the pain of it. I would have taken ANYTHING almost, and possibly risked o/d to just make it go way.....Pehaps Im a wimp when it comes to pain threasholds etc. I mean Ive had two kids( im 46 ) coped with childbirth and i think RA flare pain is the absolute pits at times. Hope you get sorted soon really do.

    Could you go to A and E if it gets intolerable. Sorry I shouldnt be so bossy its just that I cant bear to think of anyone going through painlevels like my last do. Im totally terrified of it happening again, If it does I will be down at the DOcs/Hosp banging at the door saying give me pain relief! Dont care a fig what they think of me. The worst they can do is label me in my care notes.

    xxx

  • I agree with Julie55, going cold turkey on the pain meds, knocks you for six for weeks!

    I had one day the other week were Id had a week previous of no sleep! So I slept for 18 hours solid without waking at all! When I woke I was in loads more pain and it took me a week to get back to normal and get the pain meds back into my system.

    So you must feel 10 times worse.

    Hugs take care xx

  • the morphine idea is a good one.. yes drs are threre to see patients.. my gp practice is execellent

  • Hi Ladies and gents

    I have the morphine and the fentynl patches wearing 250mcg 10mls oramorph, it's like a junkies shopping list. I've had email from rheumy nurses to say go Tuesday to get wound looked at and if good steroids hooray. Gina I loved the sunshine thanks and i know all of us have gone through one of these times from when we were first hit with RA till the times like now. Our bodies are so complicated why we have stop the medication so the WBC's can form, which are the culprits for bringing on this nasty RA. We should have a spray like ant spray to squirt the little beeps. That will sort them out.

    I stayed in bed till 11:00 today just laying still as everytime I moved I hurt somewhere. I must get better we are at a wedding Easter Monday hubs is the bestman, and he's my bestest man at the moment we complain about them but love them just the same. I've given him a warning hair washed tomorrow and shower so I'll get plastic bag to put over my hand.

    Tricia x

  • Hi Tricia

    Good news about the Tuesday appointment. Will be thinking of you :) Hope the wound is healing well and steroids will be the order of the day. Most people would ask for a nice box of chocolates and a bottle of wine. what do we look forward to getting? Steroids and morphine .... must be going wrong somewhere!

    Lyn x

  • get well for wedding lol... might try go back to work next wed or thur???!!

  • Are you sure Alison? Isn't it too soon?

    Do be careful :)

    Lyn x

  • yep too soon.. had two average/bad days.. its on going.. im going for the drug induced coma to sleep and take couple of hours to come round properly;; couldnt do this to go work..

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