New and scared

migrembe

Hi, My name is Beverley, too many beverley's to have it as a username. I'm 48 and have just found out i have severe arthritis in my knees. I had a slip down my house stairs back in march and it's never really got better since then. The docs thought i had done lots of other damage, but that's not the case, that could of been repaired, but i think this is worse.
I've been off work 3 months and it doesn't look like i'm going back either, i'm a staff nurse and i walk all day, even though i only work three days a week. I'm in pain all the time, which ranges from a quiet hum to a raging furnace and people really don't get it and i need to walk with at least one crutch over short distances and two over any distance longer then an average street. I read someone else's post about how their boss thinks its like flu, take a few pills and it will get better. I know that pain can be controlled but i also know it pain relief not cure.
I'm seeing the consultant on tue and then next week occy health and then they want to come up with a do or dont solution to work so i could end up losing my job.
A question, well several; does any of the following work or help, taking suppliments, exercise, diet? Or anything else?

stickywicket

Hi Beverley and welcome to the forum though I’m sorry you needed to find us. Arthritis is a scarey place when you first come to it but you will learn coping strategies and be given meds that will help at least to some degree though, as you so perceptively say, it’s pain relief not cure.

You are so right that people don’t get it. Have you tried googling ‘Spoon Theory’ which one of our forum members put me on to. It’s a good method of trying to get others to understand.

As for supplements, diets, exercise etc – as I see it, exercise and a sensible diet yes: supplements, no. However, you’ll get much better and more comprehensive advice by looking at Arthritis Care’s own booklets. Click on the ‘Publications’ button on the right of the top toolbar, scroll down to ‘booklets’ & there’s a whole load of useful stuff.

If you’ve any specific stuff you want to talk about just head for the relevant forum. LWA and Chit Chat are the most used ones.

I hope things go well for you next Tuesday and with the Occy Health.

elnafinn

Hi Beverley

I am so sorry to read your story. People just do not get it, you are right and I am really surprised that you being a staff nurse and still they do not comprehend. It really is so frustrating. :roll: Do join us on the other forums, you are amongst friends here who DO understand and it is a good place to have a rant as it does not fall on deaf ears so to speak. Also a good place for advice.

Look after yourself and hope to see you posting more.

Elna x

migrembe

I'm still in the OMG stage and i'm grateful for any advice although i'm still running away from it all a little but i gather that's normal. When i tell people that the MRI showed marked arthiritis but nothing torn they seem to react like it's a good thing but i know because of the job i do, or is that, did?, that's not the case. I can't seem to get on top of the pain and although my physio is kind she really doesn't understand either. Sometimes the simplest of things can be the hardest to explain, i was trying to explain to a friend the fact that shaving my leg and putting my socks on feels like an impossibilty.

dfawke

hiya beverly, im a hca on a surgical ward and have oa in 1 of my knees.
I do know wot u mean that people dont understand. They seem to think a tablet just makes the pain and all your worrys and upset go away and it doesnt.
Its hard to explain the feelings you go through when pain is constant.
Im shore mine isnt as bad as most people on this site, but iv just done a 13 hour shift and limped my way through most of the morning, strangly the stiffness eased mid afternoon and is not bad at all now. Not shore if its the paracetomol and ibuprofen i take regular thats doing the trick or just how oa works??? who knows???
good luck and keep your chin up as we all understand on this site x
love donna x

weejean

Hi Beverley

Welcome !! Its so hard to get people to understand what arthritis is and how it affects you. You feel as if your whole life is turned upside down and you also feel so alone. Well the good thing is that you are not alone This place is full of great people who will give you advice, support and also make you smile. Take everyday as it comes and you will, in time, learn to cope with the changes you have to make and you will adapt as you go along.

I find that diet and exercise help and of course the pain dullers take the edge off.

Keep your chin up and feel free to ask as many questions as you like, theres always someone here who will have some good advice for you. We are also here if you just want to get things off your chest and have a good moan. We all do it from time to time. Sending you huge hugs xx

migrembe

Thanks for your reply. I have told a couple of people that it's arthritis and all i got back is 'well at least its not that bad'. My reply was 'i wish it had been broken and then they could of fixed it' Then you get all the mumble grumble. Someone on here pointed out the spoon theory and yep that's what its like so im telling my children to find it and read it. I cant even get my best friend to realise that even walking half a street to the nearest shop as to be thought out before i can set off. I have another good friend doing my food shopping cos i'm not able to walk round the supermarket as for the farmer's market on a good day yes and on a bad no, but people don't get it. Yesterday i was busy today my knee feels like a football and i can only shuffle on it for the pain. Pain killers help but if i take too many or too strong i feel like i have vertigo and cant do anything. As for my children one daughter and my son dont live at home, one is going back to uni in sept and the other is starting uni in sep so i will be on my own and they are going if i have to carry them and then there will be me and the cat. who is nearly blind and i nearly fell over yesterday because i couldn't lift my leg far enough. As for work i cant see myself back there, ever, certainly not doing the job i was doing. I sleep fairly well with lots of pillows but wake with a pill induced hangover and pain and low mood mostly so that's not good. Going to see my consultant today see what joy he may bring, i think he's about 12 or maybe 16 , bev

weejean

Hey Bev

I totally sympathise with you, I have had the "its only arthritis" from family and friends. They have no idea how I struggle every day and how soul destroying it is. I also read The Spoon Theory last night and it is such a good way to describe how it is, I am printing it off and handing it out for my friends/family to read, I am tired of them saying that I am a Party Pooper etc because I dont want to go out in the evening or go on long shopping trips, I would love to do all those things. I only have one son who is 18 and starts Uni next month as well, he is reluctant to leave as he is scared I wont manage without him but I want him to have a normal life and get out into the world and have a ball. My husband is a good help to me when he is well enough and we struggle along (my hubby has spina bifida and heart problems). When I wake up in the morning I usually cry as I try to manouvre my stiff and aching body out of the bed but I always give myself a good talking to and get on with my day and try to enjoy it the best I can. I know everything looks so bleak for you at the moment but its not all bad, you will learn to cope and remember you are still the same person on the inside and that will never change. Good luck with your appointment, make sure you ask all the questions that are going through your mind, take your time and try to explain how you feel both physically and emotionally. I am sending you strength and huge hugs for today and I will be in your pocket for your appointment with your consultant xx

migrembe

weejean wrote:

Hey Bev

I totally sympathise with you, I have had the "its only arthritis" from family and friends. They have no idea how I struggle every day and how soul destroying it is. I also read The Spoon Theory last night and it is such a good way to describe how it is, I am printing it off and handing it out for my friends/family to read, I am tired of them saying that I am a Party Pooper etc because I dont want to go out in the evening or go on long shopping trips, I would love to do all those things. I only have one son who is 18 and starts Uni next month as well, he is reluctant to leave as he is scared I wont manage without him but I want him to have a normal life and get out into the world and have a ball. My husband is a good help to me when he is well enough and we struggle along (my hubby has spina bifida and heart problems). When I wake up in the morning I usually cry as I try to manouvre my stiff and aching body out of the bed but I always give myself a good talking to and get on with my day and try to enjoy it the best I can. I know everything looks so bleak for you at the moment but its not all bad, you will learn to cope and remember you are still the same person on the inside and that will never change. Good luck with your appointment, make sure you ask all the questions that are going through your mind, take your time and try to explain how you feel both physically and emotionally. I am sending you strength and huge hugs for today and I will be in your pocket for your appointment with your consultant xx

Hi Jean,

I had a preview of my scan from the physio on thurs so it wasn't as big a shock as i was expecting. There is marked arthiritis on the inside of my knee joint, which i weird because i thought it was the whole joint or no joint but whatever, the doc showed me the scan and i didn't need him to point out the defective part. Plan physio, pain relief, exercise, review 3 months maybe arthroscopy, maybe new knee or partial new knee, didn't know they could do that either. No work until i can walk on it and he's still shaking his head at me going back to clinical practice, im a staff nurse. So im sat on my bed hoping that i wont have to tackle the stairs again tonight and tomorrow will be a new day. Thank you for being with me today, no one else came and i did have the docs laughing with me, something about my boss moaning at me and me working for the caring nhs??? I hope you have had a good day and that you will have a peaceful night x

traluvie

Hi Beverly..

Welcome to the forum..
I have OA in knees and inflammatory elsewhere..
I am 31 with 2 children aged 9 and 13.. My Oh had to leave work to help me, but has a new job he couldn't refuse.. he was worried about leaving me too but i said to him i would have to do it if he wasn't there and i would learn to manage .. now he has seen that i can do that he is more happy, hopefully your son may be able to do that too so he can go to uni..
My close friends and family are aware and quite understanding and help alot.. my other so called friends are long gone and carrying on.. those mates are now aquantencies and i will only bother if they bother.. i have learnt to realise the important people and i am sure in time you will too, the ones that understand will still be bothered to do the things you used to but in small doses, my close friend and i still go out, but we go for a meal when i feel ok, or pop to the supermarket, park etc, she picks me up and takes me places too..
It can be very daunting at first but with the support from others you are able to carry on(although it can be an uphill struggle at times), learn new ways and listen to your body and kind of learn to accept things too..
Work you think would be more understanding as they are the NHS.. unfortunately i worked for them too and although occy health were brilliant my bosses were less supportive, so was dismissed on health grounds.. the good thing though is i can concentrate on my health without the added stress from work.. I also had my union rep too.. Do you have one? you can also self refer to occy health too, so they can assess you and put appropiate methods in place for you to help in the workplace..
Am thinking of you and feel free to ask any questions..

migrembe

Thanks tracey. I have other health problems which all started when i turned 40 oh joy. I used to have chronic migraines that would occur every week or so and of cause i would be off sick each time. I reduced my hours which only meant i was off sick less didnt do anything for the migraines. Then 2 years ago i had my very first silent asthma attack, I couldn't breath but i didn't have a wheeze but it responded to treatment fairly well after they had found an inhaler that i wasnt allergic too. Until Christmas just gone when i caught a chest infection and i was off work for two months just got back into things when this happened in march. And inbetween all that my niece died in a car accident, she was 21 and i ended up taking a bit of time off for grief. So this just feels like one more thing to add to the list. But the migraines have gone so work doesn't need to worry about them any more :???:
I don't have a dear anyone to do anything for me, if i cant order it and get it delivered or if i cant go and do it myself then it wont get done and that includes sock haha Sounds like im moaning but im not really just saying it how it is

dreamdaisy

This is a big adjustment for you, migrembe, as it is for all of us. No matter how many jonts are affected or how few it is a big change to anyone's life. I thought that my PA was bad enough but the OA is worse: the pain is more intense, longer-lasting, a very different hurt to the other and it is unrelenting. I am fortunate in that I am fifteen years further down the road than you so the adjustment has been done, but even so it does take one all by surprise every now and again and throws one into the dumps.

People do tend to say 'Oh, only arthritis?' and why shouldn't they? It is so common yet so little understood. People associate it with age (they don't know they shouldn't) and obviously don't understand the impact it can have, not only on the person who has it but the people around them: it has an impact on one's friends and family. We do understand on here, so come and talk to us, we know what it is like. DD

migrembe

I went to the consultant yesterday and he was talking about knee replacements and partial knee replacements and you say that to someone and you think you are telling them you are having your toenails cut. I got my friend to drive me to the park today. It took me a while to work out where the flat entrance was but we found somewhere and we ate lunch. He's trying but he doesn't really get it, i used to walk round the park every day and i've managed to get there in the last three months. It's 5 minutes away at normal pace takes 3x that and then what i cant walk round it and yet i cant walk back either. Its crazy :roll:

dreamdaisy

This is life with arthritis: no matter how positive one's outlook and how strong one's determination, it takes an age sometimes to do even the basics. Our curry house is a five minute amble for Mr DD, but when he has his fat, crippled wife in tow it takes up to 20 minutes. We have learned to drive down, park up, have fun then totter home - well I totter, he keeps me company! There are frequent rest-stops on garden walls and at bus stops. He rescues the car in the morning.

migrembe, this is not easy and I do feel for you. The adjustments that we have to make are not only huge, they are hugely unfair. I now sit to cook, wash up, iron - all stuff I could do standing this time last year. There was a very good thread on LWA called 'Acceptance', I think it was started by collywobble and it makes for thought-provoking and good reading. I have had a half-hearted hunt for it :oops: : only half-hearted as I am under the arthritis cosh at the moment, but I will PM the details to you when I dig it up, and will bump it back to the top of the LWA forum. Take care, I am thinking of you. DD

lisa23

Hi ive just been told that ive got arthritus and I'm only 42. I've got OA of the right hip, both knees and right hand. I'm on the sick from work at the mo! as I work as a kitchen assistant, the work as become to painful for me to carry on. I had to see two occ-health doctors, the first didn't believe that I had anything wrong and said that i was fit to work without any adapptions to the work place at all. Just because i said i tried to do some shopping with aid of my son, she said i was fit to work!!! well i said i wanted a second appointment with a occ-health doctor. He was realy nice he said i wasn't fit to work in a kitchen at all. I'ts been a very scarey time for me as this is all new to me too. All i say is try to be persistant with any doctor or anyone who says you are putting it on or says "just take another pill you'll be ok"......
talk agen soon luv lisa23 x :P

resusjan

Hi Beverley,

Welcome to the forum. I'm new on here too and everyone on here is really helpful and supportive. I am also a staff nurse and was diagnosed with RA a few months ago.

I'm glad youre going to see Occupational Health - they were brilliant with me, they did a full work assessment and discussed methods for helping me manage at work with my manager. I was really nervous about going to see them and was initially trying to hide my RA from work - I thought I would be seen as an unreliable staff member who was going to be taking lots of time off sick. I've found quite the opposite - my manager has been really supportive, she spoke to all my colleagues and explained to them what was wrong with me and how they could all support me. The Rheumatology nurse and OH gave me information leaflets to give to my manager explaining that any time off sick due to the RA would not be used in any form of sickness monitoring etc.

Make the most of your OH department and be honest with them about your work capabilities - they really are there to help you.

Take care, good luck

Jan xx

janie68

Hello Beverley

I am yes a staff nurse, but I have found complete the opposite as to Jan. My trust count any sickness with my RA and I am now on my final review. My managers have tried to help, but are limited with trust policies and I am about to apply for ill health retirement. I have had RA for nearly 17 years so I have OA as well now and to honest, all this fighting on is making me worse.

But I hope that you do get the support that you have a right to have, contact the union if needed and most of all good luck!

Janie

migrembe

Hi everyone, Went to occi health the doc i saw was really nice and very funny, although she thought i didn't get it and kept apologising. She didn't need any proof, she asked me what was going on, took a very quick look at my knee, her pronouncement was that i was unfit for work whilst walking with two crutches but if i manage to get it to one she would then be happy with recommending some type of office work. Her reasoning - im just too unsafe. I can walk with one crutch, well hobble painfully, but then at night im in so much pain i cant sleep. I think my nursing career is over unless they come up with a miracle cure. I try not to think ahead or get too down about everything. So this week its a trip to the gp's to try and sort out pain meds and physio. With such excitement i dont know how im going to cope hahaha

resusjan

Janie,

I don't think they can do that (but I may be wrong)- as soon as you have official diagnosis of RA or any other form I thought you were protected by the disability discrimination act. My rheumatologist gave me the info to give to my manager - I think its one you can download somewhere on here. I'd better check it out myself in case I've got it all wrong.

migrembe

Oh yes, in the end if i cant return to clinical nursing they will have to provide me with an alternative. Yes it comes under the DDA.

janie68

Yes youre right, I am protected but if they show that they have done everything possible to help me, then its curtains. I will speak to my manager about redeployment, but as you know, where are the jobs? Office work, great but they would downgrade my band straight away, I mean is it worth it financially?

You sound upbeat, and you have very supportive manager and occy health doc so I'm glad for you, RA should not put us at an advantage. I wish you lots of luck

Janie