What is the worst type of Arthritis ?: i am so fed up... - NRAS

NRAS

36,425 members45,073 posts

What is the worst type of Arthritis ?

creekybones profile image
30 Replies

i am so fed up with people ,, last night i went out for a drink, the first time in along time , when out i saw somebody i have not seen for some years , when chatting to him i noticed a copper band on his wrist , so asked him what is the copper band for ?? he replied , arthritis in my knee , i told i had arthritis too , i asked what type he were suffering from , he didnt know , but knew it was arthritis , he told me to get a copper band it will get you sorted , i noticed you seem abit stiff , get one of these he said .. since i started wearing this i dont get any problems with my knee anymore , at this point i did try to explain that some aches and pains are put down to arthritis , an some kinds of arthritis are more severe then others , i also explained how im on in total around 60 odd tablets a week to control my pain .. when he peplied by saying get what of these you wont need to take all that S##T , i did think iam just wasting my time here .. i was not looking for self pity , but still got very angry and upset when he didnt see arthritis as a big deal , just a simple pain that a copper band can sort out , so i thought i will give this one last go , an went into more detail about how arthritis can cause disability an be very painful illness , at this point his mate joined in on the conversation , his view was it can be a disability for them that want it to be , he knew someone who claims benefits for his arthritis an they isnt anything wrong with him . it was at this piont i couldnt take part in this conversation anylonger , i felt very upset and made a polite good bye and walked away ..

to many people spread the wrong word about arthritis . its not a little pain in the knee that a copper band will sort out , if someone is on benefits with arthritis , i am sure he/she would give anything to be back working again and be painfree ..

by question is.. IS RA , JUST A FEW ACHES AND PAINS ?? What is the worst type of Arthritis ??

STEVE

Written by
creekybones profile image
creekybones
To view profiles and participate in discussions please or .
Read more about...
30 Replies

Hi Steve. I think everyone who suffers from RA or any other type of inflammatory arthritis knows that it's nothing to make light of and most friends and relatives of sufferers do too. But I don't think it's fair to assume that Osteoarthritis sufferers have things easier either - some have very severe genetic OA and are in a huge amount of pain - and then there are those that suffer from Spondylarthritis too. If you look up RA online you will probably see that the prognosis is much better for many than it was before drugs such as Methotrexate and the Biologices were introduced. I think personally I would be more upset at the age of 49 to be told that this was Osteoarthritis because there seems to be nothing that doctors can do for this disease.

I think the question is not about what is the worst type of arthritis because pain is pain and whether it's mechanical or systemic it's all lousy. The important question seems to me to be why do people have the idea that a copper band will make it all go away? And why don't arthritis charities get taken as seriously as the ones representing other diseases such as cancer? All the money and focus seems to me to go on other conditions and it's hard to explain to people what it means to have a disease such as RA if most of the groups in an area are made up of older people with Osteoarthritis. It seems important to me that inflammatory arthritis gets much more coverage and that the drugs we are put on are seen for what they are and the reasons many of us take them are better understood.

It's also bad for young ones with these inflammatory arthritis diseases to be labelled with a condition that many people associate only with ageing too - so ignorance frustrates me a lot also. But I think the thing to do is to push the media to do more to promote understanding about RA and the other types of arthritis. This is the way to get around having to explain it to people endlessly I think. I'm starting to feel less inclined to bother explaining it now because it just spoils a good night out I find - so if someone says something stupid as you've described the best thing is to politely turn your back on them and give up while the going is relatively good! Tilda

creekybones profile image
creekybones

hi tilda

i agre with alot you say tilda , the things i am not sure about is , i dont agree that all people with arthritis understand how severe it can be , for example , the lad i was speaking to the last night .

he claims to have arthritis in his knee , yet still thinks a copper band will solve any arthritis . i just know when i see him again , hoping this will not be for a long time , he will ask if i bought a copper band . when i told him , i did try one many years ago and it didnt work it only made my wrist go green ,, he said you got a cheap one buy a better one .

i wasnt going to win with this conversation , so like you say it is better to walk away .

i am also unsure about the better prognosis now , i do look uo RA on the web from time to time .

i found that Methotrexate has being around for 50 years . yet still the number one drug for RA . things are not that much better now to 50 years ago . i do feel that other drugs and treatments move on alot faster . this could be backing from charities or like you said other conditions are taken more seriously .

i agree more and more should be done , to stop this ignorance that people have . i would like that stuart just to spend a day in my shoes , he can wear his copper band , he can wear half a dozen if he likes , then lets see his views on a bloody copper bands .

many thanks for your reply

steve

shirlthegirl profile image
shirlthegirl

I have to agree With Tilda, I'm new to RA, when people ask why I am of work and I tell them I have RA, they just look at me as to say its only a bit of arthris, or it would be something like yer my husband has that in his knee, I have tried to explain the difference, but i don't think they really understand. They just think you are complaining about nothing, even when I speak to old friends of mine, because they havent seen me for a long time i just say it is what my brother has, and because they no what he has been though, it gives them a better idea, I normal ask people to look it up on the site, so they can get a better idea, but anyone I don't really know I don't bother explaining, so don't worry about people like that that believe a band will get rid of RA,

Take care xx

creekybones profile image
creekybones in reply to shirlthegirl

i agree with tida also shirl the girl . just when it comes to MTX being a new drug . its 50 years old , still the number one RA drug is MTX . should be something else now a days . everything else is moving on

Nuerotyka69 profile image
Nuerotyka69 in reply to creekybones

Steve,

Sometimes, the "new" drugs they come up with have 2000 worse side effects than the one that's worked for 50 years. I'm all for newer drugs with better results but MTX might be the best we can get.

Hang in there and ignore those too ignorant to bother learning the reality of this 'hidden' illness.

earthwitch profile image
earthwitch

Arthritis has such bad press and such misunderstandings. It also has such a huge range of possible symptoms. All of which makes it incredibly difficult to get the message across to folk. In some ways, its just not worth arguing with folk - especially those who will insist on trying to get you to do the home remedy that either they or their grandmother swears by. In some ways I'm kind of lucky with spondyloarthritis because most folk haven't heard of it. If I need to impress the severity of it, I talk about an serious autoimmune inflammatory disorder that is causing havoc with my bones and causes severe pain where bone gets inflammed. Or talk about it as a disease that is desperately trying to fuse my bones and joints together. But, RA is much more well known, and it seems that everyone knows someone with RA but wouldn't often recognise how bad it could get.

You could try thinking of a few throw-away comments for situations like that - something like "well, if I only had problems with my knee, I'd probably go straight for the copper bracelet, but actually I'm dealing with trying to control serious inflammation right through my whole body and a copper bracelet is going to do (bleep) for that".

creekybones profile image
creekybones in reply to earthwitch

i will never remember all that . do you mind if i copy it an just hand it to him on a piece of paper ?

earthwitch profile image
earthwitch in reply to creekybones

Thats fine by me!

creekybones profile image
creekybones

what is the worst form of arthritis ??????? . its hard to find an answer

Kathyfitz12 profile image
Kathyfitz12 in reply to creekybones

Let's face it - the worst kind of arthritis is the one you have !! A Professor of Rheumatology told me there are 400+ types of RA - don't know about Osteo.

Methotrexate may be 50 years old but how many people still get great relief from taking it.

Bottom line RA is an auto immune disease and affects different people in different ways, osteo is wear & tear!!! Look at old sports stars - most of them have severe OA!!!

myIBSmk profile image
myIBSmk in reply to Kathyfitz12

Yes, the one I have is the worst. LOL

I have a rare one called Reactive Arthritis, ReA is treated with RH drugs. It effects the tendons and connective tissue which then causes wearing of the joints. However, after 12 years I am no joining the osteo community. I hurt all the time, live in the NE and winter is not my friend. I have an outdoor hot tub, that is my liifesavor during my worst times. I take lots of mds, including Enbrel, Mtx, and cortizone shots. Plus pain, and anti-depressants.

I have learned to live around my pain, doing things I love and resting a week. I have lost touch with so many friends that I am lonely, but have 4 groen children, 2 grandsons who all live close and we get together a lot for fun or occasions.

Good luck to everyone, yours is the worst, too.

td09 profile image
td09

Hi Steve,

I honestly can't answer that question but I agree with Tilda that with all the different kinds of arthritis, (not that I know very much about them) that everyone suffers to different degrees - as you can see on this site! So I think it would be extremely difficult to amswer!

I do think that very few people know exactly what RA is, and awareness is really important! I once worked with someone who thought I was lying about it, just to get out of doing work! He refused to believe me, saying I was too young to have arthritis! (was 22 at the time) It was so frustrating at the time, but now I've just given up trying to explain - I think there will always be people who wont listen, just focus on the people who care about you and want to learn about it!

Tracy x

helixhelix profile image
helixhelix

Yes, I've lost a few friends since being diagnosed as they couldn't/wouldn't take the time to understand RA and I ended up feeling uncomfortable with them. But it's a hard question to answer as it's not just what type of arthritis, but also how severe. I certainly wouldn't swop my (at the moment) relatively well controlled RA for an aggressive form of osteoarthritis, since there seems to be no treatment for OA except NSAIDS and joint replacements. But oh for a little twinge in my knee again! The normal bits of wear and tear that just about everyone seems to get as they age, with an occasional ache here and there sound like bliss!

And as for treatments now, well I recently watched a film about a painter who had RA way back when, and what we now have available is fantastic in comparison. I'm really hoping that I'll have a near normal life span, able to do near normal things, and not end up the way people used to. So unless you're unlucky enough to have an RA that doesn't respond well to the meds then things are a lot better. And old things are often as good as new ones! Aspirin is still the best for some things and it's been around for ever.... Polly

cris1728 profile image
cris1728

Hi Steve

I completely agree that the knowledge about the different kinds of arthritis needs to be promoted. I have probable RA and some OA and have good and bad days. The steroid I was given 3 weeks ago has really helped but I don't think a copper bracelet would have done the same. Whilst arthritis has been around for years I don't think there has been the education around it and the different forms. I am a nurse and until I became ill myself with this problem I did not really understand the impact it had on sufferers. It seems that recent advances in treatments have improved the outlook for the majority of us unfortunates however the next focus should certainly be the education of the general population. Conditions which are visible or high profile get much more in the way of promotion than do more debilitating diseases. If you look at stroke it was generally percieved as a disabling condition which would not benefit from investment as it would not improve outcomes for the victims/survivors. The recent improvements in the care of these victims since the introduction of the national service framework have been revolutionary and te publicity and advertising of the FAST test in the media have greatly raised the public knowledge and attitude towards this disease.

Perhaps we need something like this to promote knowledge and treatment of arthritis and autoimmune diseases

Good luck in dealing with your (friend) and instead of trying to explain to him perhaps give him the address of relevant websites and tell him that as he does not seem to understand the differences in arthritis perhaps these may help him.

crsixx

Beth58 profile image
Beth58

Steve, pain is so personal it's impossible to distinguish one form from another however some do have more serious implications for soft tissue damage within the body...

I have AS with Enthesitis, my sister has RA (diagnosed at 17), we both have days where we're absolutely shite and struggle to get out of bed. I take meds however my sister cannot take many of the various types of drugs available. She's just had her second knee replacement, had various small joints replaced, has hands which are curled in and useless yet, she wears her copper bracelet religiously.

I can't understand the benefit she gets from this little piece of magnetised metal yet she swears by it and has done for over 20yrs!

If I have a discussion about what's wrong with me I tell them I have a type of arthritis which is an autoimmune disease and affects the joints and soft tissues, If people say; 'Oh I have arthritis', I always ask what type and how was it diagnosed blood test, xray or mri it' it soon shuts them up!

Beth x

earthwitch profile image
earthwitch in reply to Beth58

Thats a great question Beth

creekybones profile image
creekybones in reply to earthwitch

earthwitch what is the question ? i cant see one to answer ..

Beth58 profile image
Beth58 in reply to creekybones

If talking to someone and they say they have Arthritis as well, I always ask;

"What type of arthritis they have and how was it diagnosed 'blood test, xray or MRI'. It shuts them up because usually they're self diagnosed or the doctor told them that's what the pain is.

oldtimer profile image
oldtimer

I find that it is important to emphasise that what you have is an auto-immune disease and that means that any part of your body can be attacked - it can affect the heart, lungs, and other tissues not just the joints.

But I know just what you mean about people who think that "arthritis" can be cured with a copper or magnetic bracelet, drinking cider vinegar, or whatever happens to have co-incided with an improvement in their own single joint arthritis.

trianon profile image
trianon

I think there are an awful lot of people out there who are self diagnosing - surely if you are ill you should go the doctor, that's what they are there for? (No I would never wear a copper bracelet!)

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi Steve

This comes up so commonly. As others have said, hopefully your close friends and family will take the time to understand, but there will always be some acquaintances that just don't understand.

I think everyone's answered your question pretty well, in saying that there is no 'worst type' when it comes to arthritis, as you can have for example mild RA or severe OA. I have spoken to people with OA who called us because they'd read about a new arthritis drug and were devastated to find it was an RA drug as they are in so much pain.

From speaking to people on the helpline, here are a few tips that people have shared over the years about getting the message across to people about how severe this can be and how different it is to OA (some of which you'd tried):

- It can affect people at any age, and there is a form that children get

- You tend to be treated by a rheumatologist rather than GP

- It can affect the whole body, rather than specific joints

- In RA it is the immune-system that is attacking the joints, so the treatments used in OA don't tend to work, as the cause is different and that's why the treatments are different.

- The reason both conditions have the word 'arthritis' in the name is that this means inflammation of the joints, but that inflammation is there for completely different reasons.

I think that some people will just never get it though, and sometimes you just have to accept that they will remain ignorant about these differences.

One further point is that you mentioned that treatments haven't moved on much, as MTX is still the most common drug. This is something that people often say to us, but you have to bear in mind that although the drug is the same, the way in which it's used has changed a LOT over the years. They used to wait until the RA got to a certain level of severity before they treated it with MTX, so the early use of this drug is making it more effective. It is also often given now alongside other mediations, and can complement these other drugs and make them more effective. Also, it used to be one of very few drugs available, so the greater choice has been a big improvement. Lastly, there is a better understanding of the optimal doses for this drug.

Anyway, I hope some of this will be useful to you, but completely appreciate your frustration about the conversation you had. I don't have RA myself, but because I work on the helpline, when people ask me what I do I have to explain the differences between the different types of arthritis, and some people seem almost to refuse to understand!

Kind regards

Victoria

(NRAS Helpline)

creekybones profile image
creekybones in reply to Victoria-NRAS

thhank you victoria .

sheenerweener profile image
sheenerweener

it is all a bit confusing,i have oa in knees and hips and live with pain every day,today i get told i may have inflammtory athritis,but before my appointment today,my surgeon (who is dealing with my oa said if i am given DMARDs this may help my oa in hips and knees so he will delay futher treatment until he knows what todays outcome is so hows does all this work i totally confused xxx

earthwitch profile image
earthwitch

Sheener, that sounds like a typical fence-sitting doctor to me. Doesn't want to admit to the likelihood of the OA being secondary to inflammatory arthritis, but underneath it all thinks there is enough possibility of it being inflammatory that they are willing to try treatment for it.

Secondary OA is when it has been caused by long term inflammation. Primary OA is the wear and tear arthritis, that is usually caused by aging or injury. So sounds like he things it might be secondary rather than primary.

I can't see how advanced OA as Sheener describes would be sorted out by taking a DMARD now - surely you should have to opp whatever has caused the OA - primary or secondary what difference does it make? I'm with Earthwitch in that I think your surgeon is just sitting on the fence and you should be treated the same way whatever today's outcome would have been. As Victoria says aggressive OA can be terribly painful and you should be treated as soon as possible whether it's been caused by an autoimmune problem or is just mechanical. Pain and suffering are pain and suffering no matter what. Tilda

binlid profile image
binlid

hi i am new on here i have been diagnosed with ra and have not started treatment yet.

i also have oa in knees and have had one op and now need a new knee i agree that both are painfull very but they are two different types iused to moan about my oa but i would give anything to just have that and not both hopefully sorted with pain soon x

clair-chan profile image
clair-chan

hi

i am also new on here tho not new to RA.. i had JRA at 16 , it has destroyed my life,

i think if a 'friend' came up to me and said a copper band would fix everything i would prolly punch them

a copper band would not have stopped my hip disintegrating .. i am 39 and just 3 months ago had my second hip replacement

i get disgusted looks on the bus when i don't stand up for 'old ppl' to sit down, i hate that most ppl think it is nothing.. i had runin's with lovely ATOS and ofc they in thier infinate wisdom said i was fit for work... yeah ok tell me how i can work if whe i take pain killers i fall asleep and if i don't take them i am crying from pain.. ya ok like i will get employed!

ok i think i went off on one there, lol

but ya know what i mean i am sure to ppl if they can's see your pain there its not there.. in your head etc

my RA now goes down my entire right side ... gods if only a copper band could fix it... wouldn't that be nice.....

pip12 profile image
pip12

Totally agree with all thats been said. If only a copper band would fix it, not only would it be nice, it would be miraculous. lol.

Does the idiot think the NHS would be spending millions on Staff and medication if a copper band would do the trick.

It really annoys me when people say, "oh you got a bit of arthritis". They have absolutely no idea of the pain and suffering this horrendous disease causes, not to mention the fatigue and the feeling of being useless when you carn't live your life as you want to.

Some days you just don't feel like getting out of bed because you know what your in for, and that idiot thinks a copper band would fix it - if it wasn't so tragic it would be laughable.

JacquelinesRA profile image
JacquelinesRA

I got dis 2 years ago. And i been gettin worse n worse. Been on so many pills and shots n im so exhausted and fatigued n i was a party girl before out going and all.im 40 and feel like 90. Im not supposed to be working doctor said.but i gotta whos gona takecare of my bills and household stuff. Im gona try to get a copper band for my finge5s my ankle my back my elbow ... Hope it works.

Oh yea been there .. I no longer say arthritis I say rheumatoid disease. It’s stops the I’ve got arthritis and use a copper band . Generally I say it an autoimmune disease. If they are interested I can explain but mostly I say there is no cure . I’m fed up going round in circles with people who think they know better.

You may also like...

Now both types of Arthritis

my hands have become very painful knuckles very swollen finger joint painful my Rheumy then told me...

Husband with Arthritis

make his life so difficult when they don't even know what it is. I want to try to help him get the...

Rheumatoid arthritis

I have cut out a lot of foods .eating healthy . I take paracetamol when the pain get really...

On top of psoriatic arthritis & Chrons, now diagnosed with type 2 diabetes

I could but my other drugs don't cut the mustard when it comes to the joints although they do...

Rheumatoid Arthritis and pain across shoulders

about some sort of pillow that supports his head better? Even touching it, when I give him a hug...