Rheamatoid arthritis : Hi everyone, I'm new... - Arthritis Action

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Rheamatoid arthritis

Cat-2 profile image
21 Replies

Hi everyone, I'm new to this page. I'm 34 yrs old and was diagnosed with Rheumatoid Arthritis in August 2010. The arthritis is in my hands/wrists and both my knees. When I first was told I had arthritis I was scared about going out with just my walking stick as being 'young' I was worried what people would think. I then went on a 6 week course for arthritis & met some lovely people, my confidence grew and I then I thought who cares what people think so I'm going to go out and use my walking stick for more support. Up until 6 months ago I was on Methotrexate but it got to the stage where I was getting alot of mouth ulcers like once a month so it was stopped and changed to Hydroxychloroquine which I started in August 2016. For two weeks now I've had severe knee pain, meaning that if I walk the pain is unbearable. My GP has put me on Tramadol, Paracetamol which I take anyway & I had to be signed off work on 16th December 2016 as I work as a cook. On 30th December I had to ring my GP as the pain in my left knee was so severe I could hardly walk on it & kept getting crampy twinges in that leg. I then had to go to see my GP and was given some Morphine, fenbid forte gel (ibuprofen) & another medical note for two weeks. He wants me to see a phsiotherapist too. I am now starting to get worried about my job as I don't want to leave my current work place as its a homely atmosphere. Any advice anyone ? Thanks

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21 Replies
Beaches2 profile image
Beaches2

Hi

Sorry to hear you have this condition so young. To me it sounds like your arthritis is not being controlled well enough with the hydroxy alone. Perhaps you need another Dmard added to your meds to work with it? Painkillers and anti inflammatories just deal with the symptoms and not the disease itself.

I would be talking to my rheumy about this .....there is more that can be tried to help you. Tell your rheumy that you are worried about your job/ ability to work, and ask what can be done to improve things for you.

Cat-2 profile image
Cat-2 in reply to Beaches2

Hi, thanks for your reply. I spoke to my rheamy nurse on Wednesday and she requested for a blood test to check for inflammation levels which I had done on Thursday. I will be speaking to my rheamy nurse on Tuesday about the results although my GP says the blood test came back fine. I've definite noticed a difference to my arthritis since being this new tablet but because me & hubby want to try and conceive there's different medication which my rheamy nurse can't give me

Beaches2 profile image
Beaches2 in reply to Cat-2

Ah I see. Yes I've heard that many of the drugs can't be taken if trying to conceive or pregnant. I have read that RA frequently goes in to remission when pregnant so that could help 😄. I expect you have tried ice, heat, gentle stretches. If your blood tests are fine and there is no swelling, could be muscle and tendon pain in which case physio may well be able to help and advise.

Have you spoken to management at work about your condition? They need to know that RA comes under disability laws and as such they need to make reasonable adjustments for you when you do return.......perhaps you could look into that and have a think about what might make your working life a bit easier.

I am mostly over on the NRAS site on here. You may like to have a look, it's a great site for people with RA.

Cat-2 profile image
Cat-2 in reply to Beaches2

Yes I have tried ice, heat. I didn't know that RA comes under disability for work. My GP has referred me for physio so just waiting for an appointment now. My work place is really lovely the manager & deputy manager are really understanding about my RA. I work as a cook in an elderly day centre. I will definitely have a look at the NRAS site

Cat-2 profile image
Cat-2 in reply to Beaches2

Hi, do you know anything about the disability laws as you mentioned in your earlier comment ? As when I spoke to my manager at work she basically said was I still fit enough to do the job which I never thought I'd hear her say.

Thanks, Karen

helixhelix profile image
helixhelix in reply to Cat-2

It's the Equality Act that I think Beaches was referring to. Basically it says that you can't be discriminated against for having a disability. So if you have a disease like RA and it affects you so severely that you have disabilities then they must make reasonable adjustments so you can continue working.

Beaches2 profile image
Beaches2 in reply to helixhelix

Thanks for answering helix. Yes I was referring to the equalities act.. When I first went back to work after diagnosis I had to go to occy health who wrote to my manager to inform them of my diagnosis and explain that I was covered by the equalities act and they should make reasonable adjustments as agreed with me. He mentioned the fatigue as being part of the condition. I have some adjustments to try and help with fatigue. So I would not say it's just for what people consider severe disability, in fact my condition is now well controlled but I still have the adjustments in place and I feel they help me stay reasonably well.

Karen, I would have a look at the equalities act and have a think about what might help you in work. I think things like having a rest more often, using electric food processors and vege peelers, sitting at a stool to do some of the work, making sure pots and pans are within easy reach for you,those sort of things that cost very little but make your life easier. There is also access to work....think that's what it's called.....they will send someone in to look at your workplace and advise/ buy any extra equipment that might help......again you will have to look up as I haven't needed them.

Cat-2 profile image
Cat-2 in reply to Beaches2

Thanks Beaches2, you have been very, very helpful

Karen x

lizaw profile image
lizaw

Hi I am 33 and recently found out i have OA in the hip. I don't have any answers but would love to keep in touch with people who are going through similar things to myself to see if we can help each other. Best of luck. Lisa.

neilpne10 profile image
neilpne10 in reply to lizaw

Hi I also got diagnosed with OA in both hips at 34. I also got diagnosed with RA when i was 32 also. I would like tpo keep in touch with people going through similar as I havent told alot of people as I find they just dont understand

Rednoseday_01 profile image
Rednoseday_01

Hi there sorry to hear you are going through that pain I take 1 hydroxychloroquine a day and 6th let's of methotrexate zombie meds and to be honest it's bearable hope you get sorted

Cat-2 profile image
Cat-2 in reply to Rednoseday_01

Hi Rednoseday_01

I was on methotrexate until 6-7 months ago as was getting alot of mouth ulcers( a side effect) like once a month & always in the same places. I'm now on Hydroxychloroquine which I take 1 in morning & 1 in evening. For pain relief I take Paracetamol & for the last 2 weeks since this pain started I've been on Tramadol. Last Friday afternoon I had the worst pain so I had to ring my GP who's really lovely & wanted to see me straight away. He then increased my Amytriptyline from 50mg to 60mg, prescribed some Fenbid Forte gel (ibuprofen) & some morphine. Also a referral to a physiotherapist. Also he wanted me to have 2 weeks off work too as he's concerned that if I put too much weight on my knee/leg I would have severe pain. I work as a cook in an elderly day centre so can be on my feet for up to 5 hrs, although I do try & sit down when I can.

susieanna profile image
susieanna

You have been given good advice here re your rights re disability; you manager sounds a bit nasty talking to you like that; you would think she would want to help you manage things better at work; it shouldn't be a major problem for her to make small changes to assist you and help you keep working somewhere which you enjoy! You do have this very young and even using a walking stick already; you have my empathy. x

Cat-2 profile image
Cat-2

Hi Susieanna, thankyou for comment. My manager is really lovely but I never expected her to say what she did last night when I told her. I was literally shocked as she have been very understanding about my RA.

lizaw profile image
lizaw

Hi Cat-2.

I know how you feel about work etc. Are you full time? I was thinking about asking about going part time soon. I'm not sure about pain killers as most disagree with me or have the adverse affect. I have however tried more herbal and natural remedies. I currently have copper heels & bracelet & Comfy innersoles etc. Going to try compression gloves. Try a decent knee support also.

Cat-2 profile image
Cat-2 in reply to lizaw

Hi lisawatts

I work 25 hrs a week. Have you looked on the NRAS website ? As I've found loads of info on there. I phoned the helpline on Wednesday 4th Jan and spoke to a lovely lady who sent me an handbook to give my employer & one for myself with useful info inside them. I do have some good knee supports too.

webar4780 profile image
webar4780

Hi Cat-2, thoughts are with you. I hope your pain is under control now. I was diagnosed with sjogrens syndrome 2ndry to hypothyroidism. I started hydroxychloriquine September 16. Do not like taking meds at all. So now have anxiety because worry about side effects. I have a few better days but still a lot of frightening symptoms. I came to this site in the hope of coming to terms with my increasing health problems. I am so grateful that people share. I was so isolated a year ago. I got my worst flare after I retired. Looking back I struggled for so long going to work andmy rheumatologist tells me sjogrens was in my bloods 10 years ago! If I could turn back time, I would have left work as soon as those dr notes came about. I cannot believe how much I pushed myself. I wanted to be lije everyone at work. The reality was I couldnt keep up. How I wish I had been kinder to myself... this is not advice for you at all. I did it my way .... my way was not right for me on reflection... but who is to say what your way will become? I wish you much luck but whatever you decide please dontvpush yourself. Listen to your body. Im listening now!!

Cat-2 profile image
Cat-2 in reply to webar4780

Hi webar4780

Thankyou so much for you reply. Yes my pain is under control now, much better since my GP increased my Amytriptyline to 60mg from 50mg. My only worry now is my job as I feel as if my manager is trying to push me out due to my knee. But I feel fine & providing I sit down as much as possible to work I'll be OK. Where I work as a cook in a elderly day centre we don't have the same amount of people in daily, so there's day's where I can sit down more. I am seeing my rheamy nurse next week so will ask for there advice too & I have a really lovely GP too so can speak to him too if needed.

webar4780 profile image
webar4780 in reply to Cat-2

Cat-2, I am very pleased to hear your pain under control. I worked in NHS and our new manager showed no compassion toward my ailing health and got really angry that occupational health doctor sent her a letter saying I was too unwell to work. long story but she harrassed me at home so badly via telephone calls that my gp and my husband had to ask her to stop. it took me awhile, but I got back to work and worked another 8 years. ridiculous but her managerial approach actually had me believe that I should not be ill. I felt I had committed a crime being off sick. I finally complained and had a verbal apology from the director of the hospital. lack of compassion is a trait that I experienced and witnessed by numerous managers within the NHS. it often suggests that they feel under pressure themselves or perhaps it is part of management training? who knows? you have enough to cope with getting and staying well. in hindsight I wouldve shouted from the rooftops how I was being treated; after putting the phone down on that manager. take good care of yourself. im glad you have great support elsewhere.

Cat-2 profile image
Cat-2 in reply to webar4780

webar4780, I'm glad too my pain is under control as when the pain was bad in my knee I could hardly walk through pain. I really wanted to return to work last week but when I saw my GP on Friday 30th December when my pain was so bad he asked when I was due to return to work. So I said Tuesday 3rd January he said ' how do you feel being off for 2 more weeks, I don't want your knee to play silly buggers' that's exactly how he put it. I really do value your opinion & understand what your saying as my best friend from childhood even said to me don't push yourself too far. I'm sure I'll know when my working time is up. You take care of yourself too xx

andyswarbs profile image
andyswarbs

Research diet and arthritis. Heal your gut and many of your symptoms can go away. Top dietary tip - remove dairy, all dairy incl milk cheese yoghurt and processed foods that contain dairy incl cakes and biscuits. It can be hard work to remove dairy entirely but from what I have seen it is a very common trigger, even a little bit like whey in an ingredients list.

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