hello Im new here: Hello Im horseygirl Ive had... - NRAS

NRAS

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hello Im new here

horseygirl_0103 profile image
37 Replies

Hello

Im horseygirl

Ive had rheumatoid arthritis for a while now -i cant remember when i first started with it but I remember thinking how painful it was

My doctor referred me for an xray .Showing your bones & joints in a terrible way shook me up at first then I just got on with it

there are restrictions on what I can & cant do -I cant open tins with ring pulls because of my fingers & simply dont have the strenth-so any tinned food is out of the question

Gripping tends to hurt.I get Volterol for joints on my repeat prescription so glad about that as its expensive to buy

Im looking forward to getting to know you all & hearing of your stories on here

Much love to you all

37 Replies
Bootoo profile image
Bootoo

Hello, welcome to the club nobody wants to join 🙄 you will get endless excellent information from lots of lovely people and even sympathy when you are feeling down. I think one of the things that keeps us going is a sense of humour so some of us will come across as a bit wacky 🙃😂

horseygirl_0103 profile image
horseygirl_0103 in reply to Bootoo

im a member of quite a few of the HU forums so i get a lot out of reading peoples stories -sympathising , positivity etc

Madmusiclover profile image
Madmusiclover

You need a ring puller! Great device. I lift the pull with a knife blade and slide the puller in! I got mine from Lakeland. You can also use an electric can opener on any tin.

lakeland.co.uk/4418/magipul...

Anyhow welcome to our world. You are very welcome.

horseygirl_0103 profile image
horseygirl_0103 in reply to Madmusiclover

oooo please do be careful thats quite dangerous

Madmusiclover profile image
Madmusiclover in reply to horseygirl_0103

Blunt knife! Or handle of a teaspoon; anything that gets under it!

horseygirl_0103 profile image
horseygirl_0103 in reply to Madmusiclover

ok but be careful taake good care

nomoreheels profile image
nomoreheels in reply to Madmusiclover

Maybe change to the ring pull thingy I have (pic below) MML. No need to use a knife or anything else to lift the ring, the gadget does it all.

springcross profile image
springcross in reply to Madmusiclover

Hi Mml. I've had one of these Lakeland ring pullers for years and I use the other end to lever the ring up with, it's much safer. x

nomoreheels profile image
nomoreheels in reply to springcross

Seems that as MML uses a knife she's not aware the other end works well levering the ring pull up, as you say it would be much safer? The one I use there's just the one end that does the lot. Either way they're a big help. 🙂

horseygirl_0103 profile image
horseygirl_0103 in reply to springcross

ok super good luck with that

helixhelix profile image
helixhelix

Hope your doctors have given you more treatment than just Voltarol!

horseygirl_0103 profile image
horseygirl_0103 in reply to helixhelix

they dont really give me any medication i think really volterol gives me some sort of relief im taking medication for my lungs & he seems to think other medication for this condiiton might clash

nomoreheels profile image
nomoreheels

Hiya, welcome horseygirl. I hope you find it helpful. We've lots of info to share so ask anything. I'm sure you'll have some to share mtoo so look forward to seeing you around.

I do hope you're on other meds than Voltarol for your RD? I also use it, 2.32%, it eases my OA bone on bone finger pain. Like you I have reduced strength so have other helpful aids to make things easier & allow more independence than I’d have without them!

When my dogs are on canned food I swear by this ring pull opener (pic below). I think it was gifted to me but I’ve seen them on Amazon for £3 or thereabouts.

Ring pull opener
horseygirl_0103 profile image
horseygirl_0103 in reply to nomoreheels

yes 2.32 is the highest strenth Im on meds for my lungs & it seems to me my GP isnt too intersted in giving me medication for this in case theres a clash

Boxerlady profile image
Boxerlady in reply to horseygirl_0103

You need the GP to refer you to a rheumatologist to get a definitive diagnosis as if you have got RA you need to be on specific medication - DMARDS - to stop future damage. It's a systemic disease so can affect organs as well as joints and there are many different medication options so a specialist would be able to find something which isn't a problem with your other conditions/medications. Lots of information on nras.org.uk

I use a ring pull opener and also have an electric tin opener and a handy device for opening jars; I bought them years ago for my elderly Mum and stuck them in the kitchen drawer when she died, little imaging that I'd need them so soon but they've been a boon since I developed RA 3 years ago 😊

horseygirl_0103 profile image
horseygirl_0103 in reply to Boxerlady

thanks very much for the info much obliged

nomoreheels profile image
nomoreheels in reply to horseygirl_0103

I'm afraid your GP can't diagnose, he/she can suspect it & refer you to a Rheumatologist to do so though. He/she can't prescribe the meds needed to attempt to bring RD under control either, with them being specialist meds only a Rheumatologist can. That would explain an alternative reason for your GP being unwilling to prescribe for you, he/she's unable to diagnose & can only take over prescribing the meds once they are initiated by a Rheumy, in the same way he/she has for your lung condition. That brings me to wonder why your GP referred you for X-rays, I take it this was initially, when you first had symptoms? It's just this is something normally your Rheumy would arrange at your initial diagnostic appointment, along with blood tests & performing a full examination of your joints, to determine your prognosis & best treatment. GP's usually only have your blood tested if he/she suspects after you explaining symptoms & him/her examining you to determine possible RD. Are you under Rheumatology at all, or maybe you were discharged? They will be able to advise on the best options for you, taking into consideration your lung condition as well, even consulting with your pulmonary/respiratory team. There are meds which could be available to you, some people here have both lung disease (COPD/ILD etc) & RD & on treatment for both.

Sorry if this is unnecessary info & you do have something other than Voltarol gel. Lung disease whilst thankfully not common can be linked to RD itself & so can be successfully co-medicated. I hope I'm assuming here & you are on DMARDs or biological treatment but if not please request your GP refers you for an official diagnosis.

Wishing you well.

horseygirl_0103 profile image
horseygirl_0103 in reply to nomoreheels

Yes Im due to see my GP soon for an appointment but Ive got covid at the moment so isolating so when ive tested negative I ll defintelly have a good conversation with her

And yes I go to the combined clinic of Rheumatology/chest medicine in my local hospital

much appreciated

helenlw7 profile image
helenlw7

Welcome to the RA club, one that no one really wants to be in but here we are and we have to make the best of it. I was diagnosed with RA in 2004, but in hindsight had it since I was a teenager.

I’ve tried every kitchen aid around, some gimmicks that don’t work, some genuinely good. You need a ring puller for cans with pulls.I have an electric can opener for cans without ring pulls, and theses are the sort of cans I choose if possible. The are many implements you can buy to open jars and bottles that help to grip the tops.

Finally my wrists are fairly useless so cutting and peeling veg isn’t an option so I cook carrots and potatoes in their skins, and buy prepared chilled veg, and frozen chopped onions and peppers. I hope this helps.

horseygirl_0103 profile image
horseygirl_0103 in reply to helenlw7

thanks for your good advice

Sheila_G profile image
Sheila_G

Hi and welcome. You don't mention being under a Rheumatologist. I presume you have had a confirmed diagnosis but it seems strange that you are not on any medication. If you don't mind me asking, is that through choice? You will get lots of help on this site but we can't give medical advice. We can share our own stories of course and you will find them helpful. We can also sympathise and help with recommending things that can make life more comfortable. I have a gadget by Culinare that is brilliant for ringpulls and removes bottle tops too. It is a chunky white 'thing.' I don't know how to put photos on here but hope that is enough information. All the best.

horseygirl_0103 profile image
horseygirl_0103 in reply to Sheila_G

no i dont mind you asking at all - its not through choice Its because Im on medication for ILD (interstitial Lung Disease) & she has set up an appointment in sough manchester to see a special clinic that specifically deals with ILD patients to be assessed for a new exprimental tablet - & if I am elligible for it I htink initially she want s to get me on that first

Sheila_G profile image
Sheila_G in reply to horseygirl_0103

Thank you for that. Your reply shows that you are under a rheumatologist so he/she is obviously dealing with it. I have had RD for 20 years and have never had an xray. My bloods showed clearly that I had it so I suppose there was no need. All the best with your drugs and assessments and I hope you can get on mxt asap.

barbieg profile image
barbieg

I’m wondering how RA can be diagnosed from an X-ray? I had to have blood tests and scans . I don’t understand why you haven’t been referred to a Rheumatologist. It sounds like you have other medical conditions as well but there are many medications for RA to choose from. I hope I don’t upset you but I’m wondering if you realise this forum is for Rheumatoid Arthritis, not Osteoarthritis. Two very different disease’s. As I understand it, an X-ray can show Osteoarthritis but not Rheumatoid Arthritis as this is an Autoimmune disease.

DelicateInput profile image
DelicateInput in reply to barbieg

Hi - An x-ray will confirm rheumatoid arthritis if it is advanced - the hand knuckles and joints twist in a certain way which with RA. Some people on this forum have that severe stage or form of RA. I have had it eight years, almost without conventional medication, but I do not have that and it had to be diagnosed by MRI and ultrasound. If you go on line, you will see dreadful deformities in years gone by which thankfully are rare nowadays.

horseygirl_0103 profile image
horseygirl_0103 in reply to DelicateInput

yes I will defo look at them online thank you

madme1 profile image
madme1 in reply to barbieg

Yes I had osteo arthritis confirmed in both knees via an xray as well as ra throughout my body. Osteo joined the party a couple of years ago.

Chockyuk profile image
Chockyuk in reply to barbieg

I had the usual blood tests, but I was also sent for an X-ray of my feet and hands. While my hands and fingers were swollen like big fat sausages, my GP said the X-ray showed no sign of inflammation, although my RF was positive, also my ESR sky high, but CRP not that bad. 🤷‍♀️

I was diagnosed with RA though once I actually saw a Rheumatologist.

Mmrr profile image
Mmrr

Hello and welcome to the forum.I have the same questions as others , have you been referred to a rheumatologist, been investigated for RA and are you prescribed DMARDs ?

A GP cannot diagnose RA, only a specialist rheumatologist.

I do hope you are receiving appropriate care.

horseygirl_0103 profile image
horseygirl_0103 in reply to Mmrr

I've spoken to my rheumatologist - I might do her an email & see if she will refer me for an xray

Green230461 profile image
Green230461

Welcome to the club that no one wants to join! I have found the people on here kind and generous with their help. Best wishes

horseygirl_0103 profile image
horseygirl_0103 in reply to Green230461

Yes they are very kind indeed I absolutely agree & indeed very generous with their help -absolutely

Maureengibson profile image
Maureengibson

I too have complex lung issues, but am still able to take dmards and biologics. I was also on nsaids till I had a stroke. As others say your GP can’t diagnose rheumatoid arthritis, and should have referred you to a rheumatologist for proper testing and treatment. Has your gp done bloods for inflammatory markers and rheumatoid factor? Please push for referral as RA affects more than just joints, so it’s important to get it under control

horseygirl_0103 profile image
horseygirl_0103 in reply to Maureengibson

I have a rheumatolgist I go to my local hospital combined clinic of chest medicine & rheumatology When I see ehr next I ll do just that

thanks for the good advice

madme1 profile image
madme1

Welcome horseygirl, we are all a friendly bunch here. On hear you can have a laugh, a b****y good cry empathise and sound off!

horseygirl_0103 profile image
horseygirl_0103 in reply to madme1

thanks you are defintely all very friendly indeed & its a pleasure to be part of this fantastic forum

springcross profile image
springcross

Hi horseygirl and welcome. I've been using this ring pull for years and it really is very good and so easy to use. You just lift the ring slightly with the end and with the rounded end, you hook it under the ring and lever it back. I've left the link below.

lakeland.co.uk/4418/magipul...

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