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Date: 15.09.2012
From: kylee

Subject: little info please do any of you get arthritis flares but dont get the swelling with it

hi all i have just be discharged from hospital. i had a major flare wednedsay which started in my left knee the pain went off the scale couldnt move the knee joint but there was no swelling or redness this pain spread to my right knee right hip left ankle and left sholder all joints were to painful to touch or move but again no swelling or redness. I spent 3 days on morphine injections along with my normal pain medicines. my rhummy came to the ward to see me and said it isnt caused by my inflammatory arthritis as my bloods were fine and there was no swelling or redness, he basicaly said the pain was in my head. i was furious as i have had arthritis for 6yrs aand i no when i am in alot of pain and it felt like the same pain i have with the arthritis flares. so i was woundering if anybody else experiences chronic pain in there joints but look fine on inspection.
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Date: 15.09.2012
From: Colin W

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

hi Kylee

those rhummy docs know every thing so all your pain must be made up , they obviously know what RA pain feels like

my CRP been settled around 10 for long time but RA cause myself eye problems which need high dose of steriods , my CRP went down to 2.5 but did not make my RA any better & after coming off them its up to 45 now & got best flare for years .
just about every joint been playing up + got skin infection Cellulitis , + they put me back on bloody steriods ,

some of my joints been hot with rash but not all them so what they told you is wrong , the blood tests that detect inflammation are a good guide but dont allways make sence to what we are suffering , they used to do Plasma viscosity instead of CRP / ESR & was better so dont know why they stopped it

dont know why they did not drain your knee & inject it , not fan of pain killers myself so dont take many , prefer to use tens or put gel to get joint to settle but know its not for everyone

hope you feel better soon
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Date: 16.09.2012
From: rhona

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

Hi Kylee, when my arthritis is bad i do get a high ESR and CRP but i have been told that not everyone does. Sounds like he is needing to learn a bit more about R/A. Hope you are feeling a bit better now.

Sorry to hear you are having a bad time Colin. Are you on antibiotics? It's a pity you couldn't have got onto a biologic before now but i guess you will need to wait until everything clears up. I don't like taking steroids either but sometimes it's the only thing that helps. Hope you soon feel better. x
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Date: 16.09.2012
From: kylee

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

hi thankyou both for your replys im seriously considering aa second opinion i have been with my rhummy for the last 6 yrs and so far we have never gotten my condition under control untill last year when i was put on anti tnf enbrel. unfortunatly i was experiencing some eye sight problems and baalance problems so i had an mri done on the brain. 3 lesions were found in a typical place MS suffers would get them. so i have now been taken off the tnf drugs as this drug can make the symptoms worse and progress alot quicker. i was taken off the drug 6 weeks ago and during the last 4 weeks im experiencing chronic pain in my joints to the point where the joint is useless as any slight movement causes chronic pain. i had the ambulance out wednesday as i couldnt even get off the sofa to go to the loo. the paramedics addmitted me straight away I spend the first 10 hours on morphine and gas and air once i got on to a ward i waas given morphine through the iv and oramph to control the pain. my rhummy came to see me on the thursday he took one look at my joints and said theres no swelling or heat on the effect joints so he thinks its all pchological. i was devestated as he discharged me with a letter to see pyscology people. im still in chronic pain i have spent the last 24 hrs throwing up in my mop bucket due to the chronic pain im in. how am i suppose to live with this pain the onlyway i can get some relief is to addmit myself again and have iv morphine and oramorph and gas and air. my neuro team r saying i dnt have ms and the symptoms are isolated and my rhummy is saying i do have ms and he cannot treat my arthritis till the neuro team get my ms under control. i feel like im stuck on a fence and my 2 specialists are just throwing the ball to one another. Im now at the point where im not even measuring my pain medication im just taking what i can till the pain eases off. why dnt they believe me that im in sooo much pain and it isnt in my mind. they wouldnt even run mris on my effected joints to see if there was something else going off. when i was in hospital last which was 5 weeks ago i went in with chronic knee pain my rhummy saw me and again said it was all in my head. after spending 2wks in hospital aand the docs seeing me not get up out of bed withput the aid of crutchs or wheem chair they decided to do an mri which showed i had torn the cruit ligaament in my knee and that is why i was in so much pain. surly my rhummy would of learnt from the first mistake of saying its all in my head but apparently not
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Date: 16.09.2012
From: rhona

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

Hi Kylee, That is just awful, how can he possibly think it's imagined when you couldn't even get off the couch, what an a...... I think you should ask for a second opinion. That's not fair having the worry of MS hanging over you. You would think the neuro team would be the experts on MS and if they say you haven't got it then that's reassuring. I hope you get something sorted out for the pain soon. take care x
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Date: 16.09.2012
From: marlene

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

Hi Kylee, i'm with Rhona get a second opinion it is your right. I had a surgeon tell me oh now you have had an operation i'm sure you will feel much better (exploratory). I went back to my gp at the time and he sent me to another hospital and I had a cyst on my ovary and had it removed. In my mind I don't think so.Who do these ;people think they are. I believe what goes around comes around.
I hope you get sorted soon best of luck xxx
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Date: 16.09.2012
From: Colin W

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

Kylee

do feel sorry for you , in England the nhs can be a postcode lottery , some things here in Cornwall can be good but other treatment can be realy bad compared to Devon a few miles away , so if you can get a second opinion I would because your not being treated fairly , and they claim you can pick hospitals to go to

hope u feel better soon
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Date: 16.09.2012
From: Colin W

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

hi rhona , I am on penicillin for cellulitis , its clearing up so hope only on penicillin for short time & dont stop any anti-tnf drugs

Kylee , there is other bio drugs , ask if you could take them instead
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Date: 16.09.2012
From: bsk

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

Sometimes it is not obvious when your joints are bad Kylee.

I had an ultrasound scan once where the consultant doing it said there was no inflammation so I was 'in remission.' This in spite of visible swelling. Also had low esr and crp with obvious swelling and have had pain in some joints with no obvious swelling.

It's so important to have confidence in your rheumatologist so agree with the others to ask for a second opinion. A good one will listen to what you say as well as blood results and scans etc.
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Date: 18.09.2012
From: Kylee

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

Hi all thanks for you input I have just been discharged again from hospital was admitted on Saturday with chronic pain in knee hip shoulder wristband ankle they treated me with morphine into the vein. My rummy came up to see me and we had a good chat he says he believes my arthritis is in remission he also said he's 110% sure I have ms and when I go for a scan in jan he says he sure it will show activity of ms. So I guess I will wait and see. He says he believes. I'm suffering from fibromyalgia and the pains I'm feeling in the joints aren't actually there. He says my brain is misfiring the signals telling my joints I have pain. Don't no if I believe this or not as it makes me sound mad. I have loads of different out patient appointments over next few months so I will wait and see what happens in the mean time I have been given morphine tablets for when the pain is at it worst so hopefully no more trips to the hospital.
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Date: 18.09.2012
From: bsk

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

hi Kylee,

it doesn't make you sound mad at all. I think it is well known that the brain can do that. It's something to do with pain signals not being 'switched off' as they should after a while when injury or inflammation in the body has healed.

Glad to hear you've got some decent pain killers.Hope they do keep you out of hospital!
take care xx
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Date: 22.09.2012
From: maz.au

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

Perhaps you could mention Palindromic Syndrome; sometimes known as Palindromic Rheumatism or Palindromic Arthritis --

Pain off the scale, nothing helps & most often no swelling then disappears when it wants to without any trace of having been active, oh & it is transient and not normally bi-lateral.
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Date: 19.02.2014
From: kazz

Subject: Re: little info please do any of you get arthritis flares but dont get the swelling with it

ive been diagnosed with palindromic arthritis after 8 years very painful travels around yrbody like a alien one day in fingers next knees etc its not nice at all
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