I hope all is well and if it’s not, it can only get better, well this is what I keep telling myself every day, when I open my eyes, feeling stiff as board and roll out of bed onto feet that I can barely stand on. Just keep on smiling Nicole.
My apologies I have already digressed (as per usual). I just wanted to have a bit of a rant really. I went to have my nails done yesterday. I have been having acrylic nails done for the past few months now as my nail beds have become absolutely horrible courtesy of my good friend PsA. I could barely move my fingers as she was applying the polish as they were extremely stiff, even though it was over 21 degrees outside. I apologised to the young lady doing my nails and mentioned that my stiff fingers is due to my arthritis. She immediately piped up and began telling me that she too had arthritis and sometimes she has painful fingers. I said (bitting my tongue), I was sorry to hear this and that she should get it checked out should it get worse. What I really wanted to say was, do you really want to know what having painful joints is really like? It’s hell on earth when you’re crying yourself to sleep at nights, when every single joint in your body aches, you have to survive on pills and injections and you know that your life is about coping with the pain and the side effects of drugs and there is no cure or ever getting better. But alas, I didn’t, I am to polite. But this isn’t the first time this has happened to me. I often find that in many situations when you mention arthritis, everyone has it and has a painful joint in some part of there body and sometimes if they have pain in their hands, I get that having there hands in water makes it worse. But let’s be honest, we all know that painful aching, stiff hands in warm to nearly hot water is bliss especially first thing in the mornings as without doing this most of us couldn’t even hold our toothbrush.
Don’t get me wrong I am not dismissing that people can have joint pain, but an aching wrist or knee or toe is not the same as having an autoimmune condition like rheumatoid, psoriatic... arthritis. I wish sometimes people would just listen and not assume they know what it really feels like to have our condition. I know someone who has leukaemia, their is no way I would presume to know how her body feels when she’s in pain or having treatment. Let us true arthritic individuals have our say. Having this disease is no fun and I’d like to be able to say this without everyone assuming they know how I feel.
Rant over, thanks for reading and I genuinely hope you have a great day. Weather forecast is over 22 degrees. Stay in the shade, drink lots (limited alcohol) and enjoy the sunshine ☀️.
Nicole x
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One never gets used to people's ignorance about the condition. Most think that it is just stiff joints and do not know that it is a systemic illness making people poorly. They do not understand that osteoarthritis , being what many or most get through wear and tear due to age is rather different! Good luck in educating them!
Hey Nicole, it’s a sad fact, but most people when they hear Arthritis assume Osteo, which, to be fair, is common. I kind of wait for a break in the convo, and explain that RA is an autoimmune disease and nothing like OA. Lack of publicity about the true nature of RA, means that it’s reasonable to assume that people have limited knowledge. Tedious, I know, but like a lot of the rubbish that comes with this disease, you just have to grin and bear it. As long as those close to you understand, then maybe consider convos with varied strangers as an opportunity to educate, otherwise you end up bonkers lol. All the best, cheers Deb
I have to admit I have been guilty of this. When my sister was diagnosed two years ago I didn't have a clue what rheumatoid arthritis was. Partly her fault, because she didnt want to worry me she told me it was just a pain in her toe! It was only when I started with it seven months ago I found out the truth.
I would imagine we have all experienced what you explain to some degree. I now say I have RD and then sometimes people say is that like RA and my answer is, its a disease that has arthritis as part of it. I dont know if im correct but I think it affects us more when people are like that when we are struggling, well it does me anyway. What is getting me at the moment is I get compared with people in their 80s and 90s, im 60. I know ive been caterpolted into old age, but im struggling with that and it does upset me behind the smile. As you say we smile, as that is what we do. ☺☺
Give up trying Nicole .......every Tom,Dick & Harry think they know more about RD than my rheumatologist. According to them...copper in my shoes would be better than Methotrexate & taking Glucosomine cures all arthritis.
After 20 years I just smile benignly ....now I'm on Biologic infusions, a few have decided I have cancer again!
Hi Nicole , I agree it can be maddening and upsetting. Especially when you are given the full spiritual bombardment...i.e. nothing happens to us that we do not invite. Be calm and without fear and accept life is giving you exactly what you need on your journey. I had this 2 days ago and am still fuming. It's a difficult one and probably takes a few years to achieve indifference to insensitive reactions. I am a long way off from it anyway.
Oh!!!I I hope it was not said by anyone you have to see again. Invite indeed! i cant image anyone 'needs' RA or any autoimmune disorder. The individual needs Psych referral as definitely out of touch with reality! I'm fuming on your behalf.
Some people who are involved in the more evangelical areas of being a Christian are often like this and have some very dodgy theories for every problem in your life not just health issues but I have been told that if I accepted god and the holy spirit who resides in the centre of my body read the bible and prayed I could be cured if only I were a true believer
I was a regular church going for many years and took part in many of their activities as did my son. However, I had such a lot of rubbish said to me since I have been so ill that I have completely stopped going now. I have had people tell me that if I was a true Christian I would not be ill, that if I walked 5 miles a day, it would cure me (regardless of the fact that I sometimes can't walk as far as my front door to my gate (about five yards) and many other stupid remarks. Another woman constantly said "Well you look well to me." I told her many times that she didn't see me on the frequent occasions when I couldn't get to church and in any case, looks meant nothing.
Another lady at the church has PsA, and yet she tears about and is into everything there, so I got compared to her and told that she still does all these things because she has a positive attitude. It makes no difference that I have said that there are many varying levels of PsA and RA and the fact that I have both as well as OA and fibromyalgia makes it worse for me.
Since I have stopped going there I have felt more at ease as every week, the things people were saying made me so wound up. The ignorance of people is at times unbelievable.
can u imagine my rage in1999 when a friend took me out to coffee and that stranger 'laid hands' on me - unasked for by an unbeliever !! PMR then, RA now, aaaargh
yep I was ...then... but it was a long long time ago ... and things did improve ... till 2015 when RA appeared on the scene. But by then I was 73 ... [certainly older, and perhaps wiser] and saw all these poor youngsters floored by it!
Hi all .i have texted before about the attitude of people when you mention arthritis .everyone and thier dog has it and wants to tell you .not many people understand even in your own families after watching you struggle don.t understand .but when you have a government that doesn.t care about us and makes us beg for everything that is rightly due to us. They make us all feel as if its not as bad as it looks. What do you expect. More info should be out there .and we shiuldn.t have to constantly explain ourselves.
Made me laugh this tbh .... I bite my tongue loads at peoples ignorance . Unless you are in our situation u can never imagine what we go through on a daily basis . Besides the pain, stiffness and swelling as though that isn’t enough ! Can’t go in the sun , limited to alcohol so can’t socialise or people think your boring cos ur not drinking . Feeling shattered all the time is awful ...thank god for this site though we’re we can all have a rant and share a happy story 😀
It's not just RD you know. A friend is insulin dependant and a relative of their's said "I think I've got a bit of that diabetes in my toe". Gah! The ignorance of the healthy is mind-boggling and they don't even know enough to be grateful. I haven't the time, energy or patience to try to educate them all so a sweet smile and an internal fume is order of the day.
If you didn't I reckon you'd cry. By the way. That was the person who called out the AA when his car key didn't work. AA man asked why he was trying to open his Ford with a Toyota key.
Gnarli, on reading your post, I just bursted out laughing in the queue at ASDA. The woman in front of the queue is now looking at me very strangely. You have some good ones. Ever thought of stand up comedy or writing a book 😂
Sorry for woman's funny looks but having a laugh is so good for you. Like an internal jog. It'd have to be sit down 'cos I'm too idle to stand. I just report what I hear and see and this world is full of funniness if you look at it a certain way. Oooh you guessed. My book is at the draft stage provisionally titled "My life in 13 houses and a caravan".
How l wish one of these people would tell me l invited this on myself and life is giving me what’ll need to get on, well l would like to watch my sons play sport more l would like to have a few beers doing it, l want to go to the new spurs ground when it opens, these are a few things that were not given to me when l invited this on myself for this l would like to put my RA on eBay with no reserve and top bid walks away (well limps away) to everyone who has got this deserved illness because we invited it in please put it up for sale only let me be the first in line as the football season starts soon
You are so right love.i picked up on that aswell.no we don.t ask for it .don.t deserve it. But we quietly get on with it and look for support in each other when the going gets tough. Which is often. And as Gnarli says we smile sweetly and carry on.
Maybe thats why people don.t understand .because we deal with everything and it becomes the norm day in day out.and say i.m ok. Because if you say how you feel no.one wants to know sometimes even your doctors. You are all special people. Who don.t deserve what we get .and i agree the person who said this deserves a battering and shiuld except what shiuld come to them .gentle hugs you lovely people .kathy xx
Hello Nicole I so agree with you I have the dreaded ra. We are lucky to spend a lot of our time 'in the sun:" people all say you must be better in the warm. How wrong can they be doesn't make any difference I say except helps with the mood. You just give up trying to explain. Still good to chat to others who do understand. My rant over have the best day you can everybody.
All I would say that those of you who have had judgement and told your faith is not strong enough, ignore it. They dont know their bible. Im a church goer and have never heard that in my church, however I am aware some types say that, but its a lie. There is only one person that can judge and its not them. No wonder people dont go, I wouldnt. Anyway I hope you may go to a church which is true church, but I understand why people are put off, but I would just say not all Christians are like that. Difficult subject that I would normally stay well clear of, it just makes me sad to hear such things. Hope you are all having the best day possible. ☺
thanks for saying it Ruth - such attitudes are totally unChristian in the sense that I know, but I can understand people being put off by such judgemental and holier than thou comments
So true. My best one was being told I was lucky it was only rheumatoid A. because osteo arthritis is soooooo much more painful, and at least I wouldn't need surgery!
And only yesterday someone said I really shouldn't even look at a tomato, then I would be fine. They'd read it in the Daily Mail !!!-- so why rheumatologists need all that training is a mystery isn't it??????
Next we should stop eating fruit and veg all together. Why wait for out patients appointments to see Rheumatologist, just read the Daily Mail. We’ll soon all be cured 😂Honestly if some folks had half a brain they would be dangerous.
Ignorance is bliss? or so it is said, mine stared before most of you were born I expect, I am 80. years old and mine started in 1969. when the men first walked on the moon. My question why dose pain related problem do not get? the advertising priority that all the other in your face on a daily basis get, well deserved because of their campaigning they bring with it results and advancements. Good on them I say! But why does not any of our research get the recognition it deserves. One reason is when it comes to NHS. funding, we are at the bottom of the heap, because the bodies representing us are not lobbying parliament loud enough.
After some 45/50. years of basics pain management and all the other trail and error treatments, it took in my case two wonderful Physiotherapist to recognise the pain I was in and could understand after going though records decided I needed to see a chronic pain clinic, where you are analysed for the courses of my pain and whether adjustment in medical life style can help to reduce the pain and hopefully give me a better quality of life.
One of the small things that niggle! is when one is ask out of one to ten what would you say your pain is today, to me the daftest question ever to ask, no two people have the same pain threshold, one might say three another might say seven, if one could measure the electrical currant, it might read the same for both people, not a very good way of getting a pain measurement.When I am in so much pain I am off any scale I mean that, not one to ten you might have painful fingers but what is to come? or will you be one of the lucky ones. Hermes
What you have just written is so true, I got a friend that just says just go for a long walk, join a dance class, forget about your pain , I would so love to do that , it takes me like you half an hour toget out of bed most day , the bad days out way the good now, some nights I just rest in my chair , so I can just get up and down when the pain gets to bad and I can cry in private, sorry to go on I just pray there will be a wonder drug, so we and every one else on this group can have permanent relief, thinking of you x
Haha,, know this all too well, People say,your looking really well though, well yeah because I’ve lost some weight, due to being unwell, I did not try, however it was needed. loads of people really do not understand at all, I’ve spent many a night not being able to sleep more than 45 mins at a time due to pain in nearly every joint, actually crying as I thought I must be dying, as I could surely not feel this much pain from RD. I am not ungrateful or anything, but people say “your doing so well,you look great”,,, well yeah I’m on morphine ‘ D Mards & diclafenac & amitriptilene,paracetamol & other drugs for other issues. People only mean well, they just don’t understand the struggle or the illness unless they have it or a family member has it. Such a hard fight eh? It sometimes makes me feel like they ask or say something, but they don’t really want to know the detail as it is almost as if they are bored of the fact that you are ill. The saying “ you know who your friends are” is so very true. Good luck to you with your every day/ life struggle, I completely understand how you feel Nicole x
Hi Nicole, I don’t say anything to anyone anymore, sick of hearing the words “oh my Granny had arthritis” the majority of people have no idea what an auto immune disease is, let alone Rheumatoid Arthritis, ie weekly injections of Methotrexate having to put up with the side effects, stiffness, joint pain, and lots of tablets, there you are that’s my rant over, a least we have something in common. So that’s the reSin I don’t say anything anymore.
Hi Nicole, I agree its really annoying when this happens. But until more people are educated as to what RA really is your wasting your energy. People hear arthritis they don't hear any more. Either we need to change the name of our condition of people need to be educated to realise it's not osteo or any other odd pain but a serious condition and the treatment of it is hit and miss and can cause more harm to us than than the condition. It's bad enough living in constant pain but people just don't understand. Even if you try to explain it they don't get it. But it's not mentioned enough as a serious condition i had a questionnaire asking if I had various illnesses diabetes, thyroid, lupus no mention of RA even though they were near it with lupus. It's like we are just ignored by everyone. And that really is how it feels.
Sorry think I joined you in the rant but no one understands our condition even people who should, dont. Good luck hope you are feeling better soon.
LOL I have had all this as well. The best one is do you really need to take all those drugs (11 a day and 21 on Monday) I have RA and I do it naturally. Wish I could stop taking all the meds but if I did I feel I would have given up on life by now and its only been a couple of years. I think my mum finally realized how bad things were when she saw me taking my daily meds "Oh crikey you take more the Vince and he has parkinsons" Yep and its not gonna get any less. Luckily I have a friend who also has RA so we can winge together
Let it go, Nicole ... many don't have a clue and assume OA. I had to smile at your blss tho' - my bliss is warm sun on overused muscles but COLD water for me fingers n wrists. or if u r feeling 'really really' cross refer to yr 'systemic arthritis' ... that gets them asking what it is. sorry 4 yr pains xx
I always took arthritis lightly. The occassional knee pains were bad,but the real butt kicker has been arthritis in my feet and ankle. Every day I get up and no matter what , I keep moving, thats all you can do. Hope you feel better.
I think people will never understand what RA or any auto immune disease is until they have it. It is just how it is. I very seldom talk about the RA because this is what I hear.
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seronegative inflammatory arthritis, symptoms have diminished - should I still start methotrexate? 
Did you have trouble being diagnosed?
Good morning, I'm your body, I can hurt you. Have a nice day.
Do you have flushes with RA
