In pain, fed up and dont really know what to do now

magicdragon

Oh this is abit of a moan and im so sorry but I feel like complete poop to put it mildly.

My hands have been so swollen the last few days you could barely see my knuckles. Really stiff all over feet, knees,hips, hands and wrists and more unusually my shoulders.

Ive only had two humira injections and a quiet a few infections. On top I seem to have a ganglion cyst that just seems to be getting bigger on my finger and now im running hot and cold and my crp is high.

Sorry for the moan just so tired

CJHunter

Its ok to moan hun, tommorrow is another day and I realy hope things ease for you. If they dont do you think it would be worth talking to the reummy nurse or yr GP about how you are feeling?

sending you positive vibes and a big (((())))

Colin1

Hello Magic, its so hard to cope with all this stuff i wish i had a magic spell for you. the lack of sleep doesent help either. I think the best thing you can do is as CJ says and Contact the nurse or GP. There is an injection called a (depot medrone) its a cocktail of steroids but works well at easing the pain for weeks at a time you could ask about it. It will give you time to rest and perhaps rethink your treatment. Take care i hope your feeling better soon
Colin

ritwren

Magic Dragon I'm sorry to hear you're having such a rough time of it. I totally agree with the others, you could ask your GP to give you a Depo Medrone Injection or something else to help you through it. I had an injection about 10 days ago and it really has helped.
Try to rest as much as you can too, it's very difficult when you can't get a decent sleep. Do have a chat with your GP or the Arthritis nurse specialist at the hospital.
Best of luck and gentle hugs. Rita.

bubbadog

Hi Magic, I feel exactly the same as you! I even have some of same pain area's effected! Back, both hips, boths hands fingers and wrists, both knees and both ankles and feet!
I'm taking Oromorph as a top up of my M.S.T to ease the pain. But I wanted to let you know your not alone, and you have every right to feel feed up as I do I've been like it for over 3 weeks now! I feel like poop as you put it and I'm exhausted. We can be knackered buddies together if you like!

elishapearcex

i feel the same and being young it doesnt seem right, your not alone and there are people you can talk to

elisha xx

tillytop

I am so sorry you are struggling so much.

Thinking of you.

Tillyxxx

barbara12

Oh MD I am sorry you are feeling so poorly,I could honestly swear when I read post like yours.
I do wish I could help more but at least you know we are here if and when you need us, and please don't apologise if it helps a little to get things off your chest then I for one are happy to listen.
You take care of yourself xx

magicdragon

I ended up havin the out of hrs gp come 2 see me not that I would think that he would do anythin but in a vain hope as i was goin hot/clammy etc.
He ended up rudely talking 2 my bfriend about me gettin nearly everything wrong. Went on to tell me 2 keep takin paracetamol & that id b fine even thou I said I was on co-codamol 30/500/meptid but that I had morphine available & that I was still in alot more pain than usual. He also went on to say how comfortable I looked even thou I wasn't & that I was on so many painkillers.
There where so many things that he got wrong but i would b here forever
.

So after an uncomfortable night I rang the rheumy I asked 2 speak 2 my nurse but instead had 2 talk 2 another one that ive been talking 2 recently instead. She came out with if your chest is clear & sputum sample is when its tested then I should go bk on the medication even if im bringing up green, they said that I cant have steroids when I hav the possibility of an active infection and that my arthritis is active now ( no kidding! )

So I feel like im going round in circles & no one is helping me & as a result I feel really unwell & alot of pain stuck at home.

I rang the gp as a last ditch attempt as I hav a gd relationship with them & they put me on tomrrows list early 2 see a gp who I know in the past has rung up the rheumy team demanding I get seen.

Really feel like im running out of hope and options but thank you everyone soo much. Also I hope u all start 2 feel better

tjt6768

I'm really sorry that you're suffering so much.. Hope things settle soon..
Best wishes

cheekygirl

magicdragon wrote:

I ended up havin the out of hrs gp come 2 see me not that I would think that he would do anythin but in a vain hope as i was goin hot/clammy etc.
He ended up rudely talking 2 my bfriend about me gettin nearly everything wrong. Went on to tell me 2 keep takin paracetamol & that id b fine even thou I said I was on co-codamol 30/500/meptid but that I had morphine available & that I was still in alot more pain than usual. He also went on to say how comfortable I looked even thou I wasn't & that I was on so many painkillers.
There where so many things that he got wrong but i would b here forever
.hi oh i am so sorry you feel so bad some dr just have no idea how hard it can be . i think they just dont listen to us enough. please take care and hope things settle very soon . lots gentle hugs xx

So after an uncomfortable night I rang the rheumy I asked 2 speak 2 my nurse but instead had 2 talk 2 another one that ive been talking 2 recently instead. She came out with if your chest is clear & sputum sample is when its tested then I should go bk on the medication even if im bringing up green, they said that I cant have steroids when I hav the possibility of an active infection and that my arthritis is active now ( no kidding! )

So I feel like im going round in circles & no one is helping me & as a result I feel really unwell & alot of pain stuck at home.

I rang the gp as a last ditch attempt as I hav a gd relationship with them & they put me on tomrrows list early 2 see a gp who I know in the past has rung up the rheumy team demanding I get seen.

Really feel like im running out of hope and options but thank you everyone soo much. Also I hope u all start 2 feel better

tkachev

Good luck with your GP appointment. All this conflicting advice is awful so hope your regular GP (who knows you well) can clear everything up and make sense. As you have had such an increase in pain I think you are wise to ask for more/better meds.

Much love
Elizabeth x

ritwren

You really have been through the mill. How did the appointment with the gp go I wonder?
Rita

magicdragon

Update.

Managed 2 talk 2 the dr & shes sent me 4 a xray (havn't heard anythin yet) & she said she would call the hospital.

The next day I talked my nurse & she came 2 the conclusion that I should go bk on my Humira & leflu & that they would monitor me closely & deal with anything that may happen. Also that I couldn't hav steroid injections cos of the possibility of me possibly having a infection.

Then my gp rang after talkin 2 1 of the rheumys (not mine) & he said the complete opp, I should take steroids & not my meds untill i see them @ hospital. Obviously I told her that I was told different which she was surprised about! called him bk & agreed 4 me 2 hav the steroid injections & they would deal with any consequences & monitor me.

Ive had a increased dose of steroids and regarding the active 'flare' inflammation it seems to hav helped but im still in a hell of alot of pain.

Im worried as well my finger has been coming out of place and i think more damage has occured

So still dont no what 2 do but thank u so much

bubbadog

Hey Magic, Sorry your still in limbo with not knowing what's going on and that even though you've increased the steriods your still in pain. Hope the x-rays shed some light for you. You should mention your finger to your doctor because I never mentioned my little finger when I knew it had dislocated and left it and after 7 months I showed her and there's no way in getting it back in now so it looks like the leaning tower of Pisa built by some cowboy builders!! Keep in touch and let me know what happens hun.

valval

can not help you much but wanted to leave ((())) to help you through we have sun shine here hope you have some to brighten your day val

magicdragon

Crying in desperation & pains gone of the chart

Rang rheumy they said ring pain clinic other than that they where happy 2 leave me till tuesday. Pain clinic we cant do anything ring rheumy so they said go to hospital.

So off i go

mig

This doesnt sound too good,hope the hospital can help you.(((()))) Mig

resusjan

Really hope you get some help at the hospital. Keep us posted

magicdragon

So went to the hospital & 2 conclude they where puzzled as 2 why the rheumy team had not dealt with me, the guy was nice explained he couldn't do much but gave me a big dose of morphine & sent me home.

Don't really no what im going 2 do 2. I should be seeing my gp tomorrow & im seeing the nurse on tues but not my nurse so I dont no what they will do if anything but I dont no how long I can stay like this.

Colin1

Hey Magic its ok to have a little moan its hard to cope at times and there are times when you just dont know what to do for the better. Coping with long term pain is so hard and when its been going 24/7 even harder. Take care and keep your chin up hope things get better soon.
Colin

magicdragon

So a complete waste of time as i thought. It was an app with a dr that i havnt seen in yrs & she made me feel like i was in there tryin 2 score drugs!!!!!!

Shes just came bk 2 me sayin she spoke with the rheumy nurse & as im only takin 1 meptid a day (actually taking the full dose) that I can suffice on that. To which I voiced my anoyance & that I dont want drugs I just wants somethin that will help & she put the phone down.

Im sick to the back teeth of this the hospital saying that the drs should b dealing with me and the drs saying that its the rheumys problem. And all the time they waste " consulting" im in pain.

mig

I want to scream and shout for you,hang in there sweetheart we are all with you (((()))) Mig

magicdragon

Sorry for my late reply

Thank u 4 ur support, it means alot when u can feel so much that arthur can be one never ending battle! :x

Basic summary was I went 2 my appointment & spoke only the nurse was there (not my one). She basically said that yes there seems to be some kind of communication problems (understatement) but by the sound it they still expect me to go to A & E in an emergency.

They did my joint check for the Humira, gave me another steroid injection, usual blood tests & X-rays of my feet, hand, hips and spine. They also told me to start back on my humira and leflu.

They said they will def see me in 3 months but i swear im not going to be impressed if they leave me to suffer again.