Can anyone help newly diagnosed with RA

treees

Hi

Have never used a forum before, but am getting to the end of my tether! Diaganosed with RA back in January, on loads of medication but it is not reaching all parts of RA, finding work a nightmare to keep up with, hate having time off, can't do what I used to do and can see no light at the end of the tunnel, all things I guess you have all heard before.

Can anyone let me know if life will ever be the same again, do I continue to trust doctors or do I make myslef a nuisance to try and get them to do more.

Getting pretty depsperate! :-(

tillytop

Hi Treees and welcome to the forum from a fellow RA-er.
I hadn’t ever joined a forum before either but they are a great bunch on here and I wouldn’t be without them.
So sorry about your RA diagnosis and that you are struggling to cope with everything at the moment. First, please be reassured that you are not alone – most, if not all of us on this forum have felt like you do.
I have found that one of the hardest things about dealing with RA is its unpredictability and trying to come to terms with the fact that there is no one miracle pill which will make it go away. RA meds are a bit of roller-coaster ride and it can take some time to find a combination which suits you. In terms of docs, my experience tells me that you have to stay on top of things and push them if you are not getting the help that you need. You don’t say what meds you are taking, but if you started them back in January and you are not getting relief, it sounds to me as if you need some additional help, in terms of a meds review from the rheumatologist and perhaps referral to a physio and or Occupational Therapist.
In terms of work, do you have an understanding employer who you can talk to about your concerns? Because whilst you are so unwell, worrying about your work and worry about having to take time off, just adds more pressure for you. Have you found the “working matters” forum yet?
There is no doubt that an RA diagnosis IS life-changing Treees, but we are all here to listen and support you as much as we can. And the AC helpline people are there to listen and advise if you find you want to talk to someone on the phone.
Thinking of you.
Love Tilly x

ironic

Hi there,
I so sorry that you have RA. It is a bitter blow there is no doubt.
If you have no up and coming appointment with you rhumy can you talk to your rhumy nurse and explain things to her? If the medication is not working then may be an alternative can be offered.
I do not know how long you have been on medication but I know that it can take a few months for it to work.
Work can be very tiring. Can you manage a sleep after tea?
Things will improve I promise. As for you getting your life back. Well yes you will be the same person but with compromises. Things will get better when your meds are sorted.
Hope you have got some support at home.
Best of all you are now not on your own, so ask your questions and keep posting.

catlady

Hi treees. I'm newly diagnosed as well, so know how you are feeling if your meds aren't working properly, you have the right to make a nuisance of yourself. I understand you can have more than one drug, and if one or all of these arent working there are others to try. Speak to your rheumy nurses at the hospital, go back to your GP and dont give up! and keep coming to the forum, there are loads of peeps on here who know all there is to know about arther (naming makes it more personal, easier to get angry at a 'person').

Finally, find out if there are any Self Management courses in your area, Arthritis Care run them. You can find your nearest area tel no under the 'In your Area' tab on this site Jenny

skezier

Hi Trees,

Like you and Tilly I had never used a forum before and well this has now become a huge great comfort rag for me and I hope you will find the same.

Life may change a little but once your on meds that wok you will be ok! You will have to make some adjustments of course but it does easier I promise you. I don't have ra but I do have oa and pa and a couple of other things and know it is possible to fight back.

As has been said if you haven't got a rumo appointment then you maybe should see if you can get one and may I ask if they have stated you on any meds to help? Nice to meet you. Cris x

ailsarobby

same as me im new to the forum but i have found great advice and dont feel so isolated as i did before its good to share your probs with understanding like hearted people which there seem to be alot on ere...keep posting your news and problems and you are sure to hear lots of good advice as I have .....chin up.....x x x Ailsa

marion1952

Hi Trees

Welcome to the forum - you will find lots of support here.

You've been given some good advice already, so I don't have much to add.. but I'm interested to know what medication are you on and how did your RA start? (I've had RA for 2 years now and I am still learning about it!)

Take care.

Marion

agslegs

Hello Trees

I am sorry to hear you have RA. It is so hard coming to terms with having a chronic illness.

Like you I am new to RA as I was diagnosed in March this year. I am also new to this forum but though I have been reading the posts over the last few months.

What drugs are you taking? I am on methotrexate and etanercept. My drugs initially gave me great relief for the first 4 weeks but now I am suffering some discomfort. As the others said I guess these drugs take a while to kick.

I am sorry I cannot add any words of comfort for you but I can tell you I know exactly what you are going through as I am going through it now. Perhaps we can share experiences. I hate having to make adjustments to my life style but know I have to start to make changes otherwise the only one to suffer is myself.

Just wanted to add - make a nuisance of yourself. If you don't then no one will do it for you. I do all the time. I think no one knows my body better than myself so if something ain't right then you really need to make a fuss about it. It does work.

Keep with it. There are plenty of us out there who will be here to support you.

Ags x

frogmorton

Hi trees

This was my first forum too

Best one to start with I reckon and great for support They helped me adjust to the diagnoses and were brilliant and contuinue to be brilliant Take a look around and see....

Sorry about teh diagnosis, but yes there is life after RA for sure.

Tell us more about the meds you are on/have tried and we will share our meds stories with you too.

Might be able to help

Love

Toni xx

treees

Hi Marion

Thank you so much for your kind reply.

It started a year ago, I all of a sudden had trouble lifting my arms above shoulder height, then woke up one morning and couldn't move right shoulder, pain was unbearable. Went to see chiropractor as thought I had pulled a joint or something. She tried everything she could, even acupuncture, but this made thins worse. Saw my GP and he gave me a steroid injection into shoulder, woke up the next day shoulder amazingly fine again, but the following day my left shoulder went. Went back to GP and he gave an other steroid injection and said he thought I may have RA starting as this is what happens and it can go from one side to the ther overnight. Everything seemed to settle down until January and both shoulder went, getting in and out of the car was getting difficult and my hands were puffy and and hurt first thing in the morning. GP did a blood test which showed RA factor and sent me to Consultant who then did further blood tests and ultrasound and said yes it was RA. I am on 20mg of Methotrexate wkly, Plaquenil daily, along with folic acid and ranitidine and topped up with paracetomol, co-codomol and tramadol for pain relief. Have blood tests once a fornight.

I have always been reasnably healthy and work full time as a PA and am a housewife and have been trying to keep things together as best I can, but now feel that from once being known as a very positive happy bunny type person, I just can't be anymore and although work have been great as I have had a fair amount of time off with flare ups etc, I feel I am letting them down as well as my husband at home as I hate keep saying I feel unwell all the time.

Going by the replies I have had from everyone it seems that perhaps it is time for me to speak to my GP again and ask if there is anything else can be done as my next consultant appt is not until January and the last time I saw him was March. He was very understanding etc at appt, but so difficult to speak to since then, my last flare up in June I had to see his registrar who gave me steroid injections and just said that was all they could do really.

Ho hum as they say, I am back at GP's on Monday next week, so shall talk things through with him.

I do hope that your RA is beginning to settle down after two years and whatever drugs you take are working for you. x

marion1952 wrote:

Hi Trees

Welcome to the forum - you will find lots of support here.

You've been given some good advice already, so I don't have much to add.. but I'm interested to know what medication are you on and how did your RA start? (I've had RA for 2 years now and I am still learning about it!)

Take care.

Marion

valval

it does take a while for them to find the right meds for you as we all differ in how we react to them and it does take months to have an affect but talk to your gp i never told her how exhausted it made ma how very stiff i was lol but we got there in the end just thought it was because i was over weight and less fit now though know that not the case as half way through the day i can seeze up and find i can hardly move . but life is good again mostly under control you have to work out what you can and can not do ask for help when you need it do not hoover every day no one but you will know be kind to your self if you need to put feet up do it do not feel guilty learn to listen to what your body saying good luck things will get better but talk to gp they can give lots of hep and advice but only if they know what going on other wise they think all ok

dreamdaisy

Hello trees, this was my first forum too - and it's a great place to be. I went undiagnosed for nine years but they eventually settled on PA (psoriatic arthritis) as being my problem. It's similar to RA but with the added benefit of psoriasis (which I rarely have). I am currently taking humira, meth, oral steroids and naproxen, topped up with co-codamol, tramadol and oromorph (the latter only when it's truly unbearable) and pills to help me poo (thanks co-codamol!) and a weekly alendronic acid (to try to prevent steroid-induced osteoporosis). Mine started in my left knee, I now have 31 affected joints.

The meds are not cures, just palliatives. They are designed to block the immune system so that your body doesn't attack itself. This in turn leaves you open to infection so start carrying around little bottles of hand gel (a good quality one) in order to keep yourself as germ-free as possible. I tutor dyslexics at my house and as soon as each person sits down they are squirted with gel, and I do myself too. So far so good - I haven't caught any bugs. Ill ones stay away!

Despite the meds flares do happen - I'm emerging from an absolute **** of a one that's lasted nine days. I'm hoping it's gone but I shall be cautious over the next couple of days or so! Arthritis (whether active or not) saps one's energy to an astonishing degree, and that is the part that those without it don't appreciate. I am TATT (tired all the time) and I suspect the majority of forum members fall into that category too. We can all drop off at the drop of a non-existant hat! It takes time but you need to learn to manage your energy - ask for help when doing things, rest often, try not to over-do it. You will find your limits and tolerances in due course. It's a steep learning curve for you, and your family. There may well be some tough times ahead for you all - come and tell us about them. We're very good at listening, as we've all been there, done that and aquired numerous Tshirts along the way. Don't vent too much to your OH - mine struggles with the fact he cannot cure me, he feels useless - if I keep going on about how rough I feel it makes it worse for him. Neither of us needs that, so I tell people here. I feel better, he thinks all is OK so he feels good, it's a win-win!

I'm gaspinmg for a coffee and I've just remembered I haven't done my meds. Ho-hum. Chat later. DD

agslegs

dreamdaisy wrote:

Don't vent too much to your OH - mine struggles with the fact he cannot cure me, he feels useless - if I keep going on about how rough I feel it makes it worse for him. Neither of us needs that, so I tell people here. I feel better, he thinks all is OK so he feels good, it's a win-win!
DD

Hi DD

I'm new here too. I like your tip about not venting to your OH because it is hard for them to understand. I do not have an OH but I do have friends who ask me how I am and when I tell them they immediately switch off. It's a shame because it does hurt me when I then have to listen in detail as to how their pet is very ill at the mo. I guess I need to find a way to survive this and perhaps coming onto a forum to vent is a better use of my time.

Ags

julie47

Hi trees

and Welcome
I have never used a forum before either but I am glad that I have started. I have had RA 22 years and been subscribing to the mag for years too but never dared come onto the web page. They are lovely people on here with loads of advice and support.
I hope you soon feel better and learn how to try to control your pain.
Love Julie PF xxxxx

tkachev

Hi Treees,
Welcome from me too. It will get better eventually but its a case of which combination of meds work and this can take time. I have had R.A 10 and a half years and it can come on suddenly and in different joints. My knees were truly awful at the start but now I hardly feel any pain. Where as my hips slowly deteriorated and I didnt realise what was happening until I could barely stagger a few steps.
Monitoring is the key. through blood tests and visits to GP, rheumatologist and rheummy nurse.
I am doing very well now and they tend to catch it and treat you much quicker nowadays.And you have a very good G.P who was spot on.
Good luck
Elizabeth

dreamdaisy

Hello trees, I hope your week-end is going OK. Just posting to wish you well with your doctor tomorrow. Take a note with you of all the things you wish to cover and I hope he/she can help. Let us know how it goes. DD

treees

Hello DD

Yes weekend not so bad, had a friend come round yesterday and felt well enough to go for a walk later on in the day, which was good. Am finding if I just sit down for half an hour or so and do nothing it helps and have realised that housework is not that important and that hoovering doesn't have to be done everyday! Am still quite teary this weekend and shall be glad to get to GP tomorrow and have written stuff down this time to go through with him, so that should help. I realise that RA affects so many people and I am lucky that they have caught it so early on, but this weekend I just don't want it to be happenning to me, I guess in time I will get used to it as this is the first blip I have had since January time when diagnosed, so not doing too bad.

Thanks for your message, it is appreciated :-)







quote="dreamdaisy"]Hello trees, I hope your week-end is going OK. Just posting to wish you well with your doctor tomorrow. Take a note with you of all the things you wish to cover and I hope he/she can help. Let us know how it goes. DD[/quote]

marion1952

Hi Trees

I was interested to read how your RA started.. mine was a bit similar. It started with a severe pain my right hand/wrist on Christmas Day 2007 and I thought it was tendonitis caused by walking my dogs, so tried to rest it, but then on Boxing Day I had pains in my left hand/wrist - I still didn't twig there was something seriously wrong for 3-4 months - I just kept resting one hand then the other and I spent £40 seeing a private physiotherapist - all to no avail. Around 4 months later it very, very quickly spread to most of my joints and I became like a block on concrete and unable to walk. Fortunately, I responded well to methotrexate and I'm still on it (15 mg by injection now) as well as Plaquenil.

Unfortunately I've started to have some flare ups in my hands this year, so my rheumatologist is thinking about anti-tnf drugs for me later on this year. (I've just had a hip replacement because of osteoarthritis in the hip so don't want to mess around with my RA drugs just yet).

You're on a good dose of methotrexate at 20 mgs so it's a shame you're having flare ups.. Do you have a Rheumy Nurse? If I have any problems I call the Nurse and she will always see me within a few days if necessary and discuss my case with the consultant.

It's a big shock emotionally to be diagnosed, so I can really understand how you feel. In the early months I used to dream that I had a repeat blood test, and the rheumatoid factor came back negative, and it all cleared up.. I used to worry that I'd have to move from my lovely little house into a flat, and re-home my dogs, and be unable to work - but none of that has happened and, in fact, I've just been walkign the dogs, now Im going to vacuum my very steep stairs, and tomorrow I'm going back to work, 13 weeks after my hip replacement..

I hope the GP can give you some help and the flare-up passes off soon..

Best wishes

Marion

speedalong

Hi Treees, you have been given lots of advice and info, so I'll just say hi and welcome.

Speedy

treees

Hi DD

Appt with GP was great, am having an x-ray this afternoon to see what is going on with my shoulders/neck area as the Methorexate and other things don't seem to be reaching that part, then having an ultra sound scan when appt comes through. Went through all medication and they are going to find out about other anti-inflamatories I can take along with what I am on already. He said I was perfectly right to go and chat to him as consultants are so busy and he will sort things out, which for me is much better as since being diagnosed with this he has been the one who has listened and helped. So I am now back at work until later this afternoon when I have x-ray, and feel a huge relief having got everything out of my system and knowing it is being sorted.

Can't thank everyone enough on this forum for messages of support etc, has helped no end.

xx

dreamdaisy wrote:

Hello trees, I hope your week-end is going OK. Just posting to wish you well with your doctor tomorrow. Take a note with you of all the things you wish to cover and I hope he/she can help. Let us know how it goes. DD

dreamdaisy

Well, that sounds positive and thanks for getting back - it's always good to get the follow-up news! I think you sound more positive too - it is a steep learning curve for you and any family you have, but we've all been there and done that. Talk to us, about whatever and whenever, and we'll listen. Rest is the key to coping with all of it - a little and often, much like me and white wine! DD

tarasmygirl

Hello Trees

Just logged on and read your posts - glad things went well with the GP.
I was diagnosed in early May this year with RA - similar symtoms to yourself, at first I thought it was my pillow so chopped & changed types.
I'm on Methotrexate just started taking 15mg for 4 weeks then onto 20mg. I'm also working full time - I'm a bookkeeper with a charted accountancy firm. Boss has been great.
I can appreciate how you feel, when suddenly you no longer have full control of your life - arfer has taken over. It is difficult having to ask family to help all the time, but they have to adjust as well.
The tiredness is the worst but I've found that a nap after dinner helps get me through to bedtime.
The forums here have been great. I'm not on every day as it depends on how tired I am when I get in. Using lunch hour just now to catch up.
So welcome from me and take care
Cath

carola

Hi Treees and welcome.

You ask should you be a nuisance? ..... definately!

I kept pestering the consultants when they diagnosed me with RA as I was convinced it was something else. They have now rediagnosed me with PolyArthritis and SLE (a form of Lupus) and I am much 'happier' as my symptoms perfectly match these.

I always keep a notebook handy and jot something down to tell or ask the consultants when I next see them. Make friends with the Rheumy Nurse as they can help you get an earlier appointment. I have even taken photos on my moble phone and shown my consultants them as I always seem to be healthy when I see them! I know I am a real pest to them however I know my body and know things are not right. If I hadn't pestered then I'd still be incorrectly diagnosed and way behind on meds.
Keep positive as things will get better.
All the best, Carol x

treees

Hi Cath

After my appointment yesterday in the morning, I had x-ray in the afternoon and my doctor rang me when I got home to say he is organising an ultrasound and giving me some more additional NSAID
to help with the pain I am getting at the moment. I really couldn't have asked for more yesterday, made me feel so much better just knowing he was doing something. That was so funny reading about your pillow as I did exactly the same, used to literally wedge one pillow under my neck to try and sleep and same here with the tiredness, I have a pillow in the car now and at lunchtimes I have a litl nap for twenty mins and that way I can keep going with work in the afternoon as otherwise by 2pm I am no use to anyone. I am a PA and work for two directors who have been really good too. It is a relief to get home some evenings mind, do you find the same.
I do hope the Methotrexate works well for you. Am off for my twenty mins now, ha.

Take care too, Trees x

tarasmygirl wrote:

Hello Trees

Just logged on and read your posts - glad things went well with the GP.
I was diagnosed in early May this year with RA - similar symtoms to yourself, at first I thought it was my pillow so chopped & changed types.
I'm on Methotrexate just started taking 15mg for 4 weeks then onto 20mg. I'm also working full time - I'm a bookkeeper with a charted accountancy firm. Boss has been great.
I can appreciate how you feel, when suddenly you no longer have full control of your life - arfer has taken over. It is difficult having to ask family to help all the time, but they have to adjust as well.
The tiredness is the worst but I've found that a nap after dinner helps get me through to bedtime.
The forums here have been great. I'm not on every day as it depends on how tired I am when I get in. Using lunch hour just now to catch up.
So welcome from me and take care
Cath

woodbon

Hello, Just popped in to say welcome to the forum, I'm glad you've found us! I'm sorry about the diagnosis, but at least you can start treatment now and hopefully that will make life easier for you.

Good luck and let us know how things are going.

Love Sue