Bonjour from a newby in France

merilly

Hi everyone
I am a 64 year, old expat living in France. Diagnosed with RA by the local GP in April, have to wait till October for my first consultants appointment. I know that the treatment will be first rate but it is still a long time to wait. Meantime I am feeling a bit alone - husband is useless!! - I dont know what to expect. How can I help myself till I see the consultant, RA is affecting my hands, feet, knees and I think my shoulders but that might just be muscular strain!
Has anyone any tips about exercise, diet etc? This is my first major illness, I feel as if I have aged ten years in the last month and it is taking a bit of getting used to!! Do I have to say goodbye to my hobbies of gardening, walking, knitting and quilting?
I have been reading some of the posts and it sounds as if the forum is a great help to many people. I just need to talk to and hear from others in the same situation.
Thank you and best wishes

dorcas

Hi Merrily and welcome

I am just recuperating after an op so can't stay long ... just wanted to say a quick hello

Iris x

dippydoodah

Hi Merrily, welcome to the forum.
Im sorry I can't help you as I have OA but I'm sure someone will be along to offer any help, support or advice.

You couldn't be in a better place.
Caroline x

dreamdaisy

Bon jour merily, ca va? Not too good by the sound of it, you have my sympathy. I don't have RA, just PA (psoriatic arthritis) but they are very similar. I don't sugar-coat, or give false hope, but I am essentially a kind person!

Your life is going to change, indeed it is already. My PA started in my left knee in 1997, but no-one knew what was wrong. By 2002 I was having surgery, walking on crutches (which I have not put down since) and by 2003 my right knee had joined in. Now it's my toes, ankles, knees, sacro-iliac joints, fingers, wrists (just beginning) shoulders and neck. My jaw is affected when I have a flare, the rest is constant pain. I am now 51.

Drug wise I take sulphasalazine, (one of the DMARDs), naproxen, (an anti-inflammatory), omeprazole (a stomach protector, the nap can cause ulcers), co-codamol 30/500 painkillers, tramadol painkillers (for when things are really rough), docusate (to help me poo) and I am also on injected methotrexate (weekly) and injected humira (an anti-TNF, fortnightly). My consultant has also put me back on steroid tablets, big doses 'cos life has been rubbish lately.

The things I miss are walking without pain, cycling, swimming, dancing, walking hand-in-hand with my husband and a good night's sleep. I am finding holding a book tricky now, so am on the hunt for a good book support.

Arthritis of any sort does not get better. It does not go away: you have it for life. The rate of degeneration varies from person to person, but degenerate you will. The drugs are designed to slow its progress and alleviate symptoms. They are not a cure.

It is an isolating condition. Your energy levels will vary widely - when the disease is at rest one can manage quite well, but when it goes into flare chronic tiredness is the most common side-effect. My friends now know that I am likely to pull out of dinners etc at the last moment, because I do not know from day-to-day how things will be (apart from painful!). I am lucky in that I am self-employed so I can arrange my timetable to suit myself - and my clients are understanding because most of them have had a granny or two with arthritis - that makes me feel old!

Family support is important, but family members do not necessarily understand the impact of the disease. Pain isn't visible, until you've had months of it and are nicely grey and drawn in the face. I am very fortunate in that my husband's father was crippled with arthritis for many years (I don't mean that quite how it sounds!) so he has had first-hand experience of it. He is very supportive and indeed I could not deal with this without him. It is not only a difficult thing for you to face, it is difficult for family members too, usually because they feel so helpless.

I found this site in April and I love it here. You can moan and vent and wail and shout and storm and rage and whinge and whine AND NO-ONE GIVES A DAMN because they know what it's like. You will only receive messages of support and encouragement. No-one will tell you to shut up and b****r off, I promise you that! Please take the time to check through all the topics that are the most recent - you'll see what I mean. LWA is the 'technical' one, Chit-Chat is the more casual, fun one.

I have no idea how they go about treating this in France. We do have a Belgian lady somewhere but she hasn't posted for a while and I cannot remember her name.

Arthritis has taken nearly everything from me, but it has, in turn, developed a strength I didn't know I had. My resilience levels are usually pretty high - one sort-of adjusts to the ups and downs - but I am not going to let this beat me. I don't have the life I want, but then how many people do? I don't ask 'Why me?' because the only answer is 'Why not?' In one way my life ended in 1997, but I'm still here. I will carry on plodding thro it, it's the only thing to do.

I am glad you found us - we are a good source of support, advice and encouragement. Stick with us girl, we'll see you right! Dreamdaisy

lindalegs

Hi Merrily,

After reading DD's post I hope you're not ready to slit your throat yet :shock: :roll: We all have a different take on arthrits and I think that you can still hope and live a life where your existence doesn't revolve totally around your disease.

RA and me are bedfellows as I've had it since I was 27 - 24 years all in all. Mine is an aggresive strain and has left me disabled and with many deformities but my life has been good .....albeit with some bad, painful spells which you have to learn to manage. I have two adult sons and been married for 31 years and my hubby is wonderful.

Life will be different, I would think you'll be fine with your hobbies but you may have to approach them differently that's all. I go on an exercise bike for 20 minutes most days and do other exercises which I've learnt from physios over the years and I also walk when I can ....keeping your muscles strong helps with supporting the joints and consequently helps with the pain also.

Anything you need to ask, no matter how silly you think it may sound, there's an absolute wealth of experience here for you to tap into. Someone will usually be able to help.

Welcome to posting too.

Luv Legs

marion1952

Welcome to the forum Merilly..

Hope you are not in the South of France , which I believe has had flash floods in recent days!!

Sorry to hear about your recent shock diagnosis... It will take you quite a while to get used to this, but you WILL have a life after diagnosis, albeit you will probably have to make some adjustments..
It is important to start treatment as soon as possible, in order to prevent/delay joint damage...

Do keep posting and let us know how you get on with things.

Best wishes

Marion

skezier

Hi Merilly,

A welcome from me as well

I have oa (had it since a tanager) and pa and honestly there is a good life after diagnosis. There are reactions that the conditions impose but once fully controlled they can be pushed about a bit. You learn your own levels and you learn to live with-in the constraints I guess.

Its a hell of a shock but I honestly know you do get there and I have found it has got easier now the pain and inflammation is better controlled.

I agree it is very isolating and am glad you found the forum as it helps so much. Take care and nice to meet you. Cris x

tillytop

Hi Merilly – and welcome to the forum.
So sorry about your RA diagnosis but you are in good company here and, as you will have seen, there are lots of other “RAers” on here from those who have been newly diagnosed to those who have lived with RA for many years so you are definitely not alone.
In terms of practical advice, just wondered if there is any way that your consultant appointment can be brought forward? I know that early treatment is really important in RA to prevent longer term joint damage and I read an article in the Daily Mail only yesterday in which a rheumatologist stated that treatment within the first three months is key to preventing uncontrolled inflammation and joint damage.
Hopefully your GP has prescribed some anti-inflammatories and/or painkillers to give you some relief for the time being and my other advice is to keep your stiff joints moving if you can, to try to stay mobile. When I was dealing with severe morning stiffness early on, I found that trying to bend and straighten my joints a few times whilst lying in bed, helped me to ease up enough to get moving properly (even though it was painful to do so).
And make sure you rest plenty as well. I have found that even a couple of hours of complete physical rest can make a noticeable difference to fatigue levels.
As for your hobbies – please don’t despair. Once you have seen the consultant and have started on some proper medication, things will hopefully become easier for you. I know everyone has a different story to tell but you might take heart from knowing that, although I was diagnosed 14 years ago (aged twenty eight) with “aggressive, erosive RA” I am still able to garden (albeit more gently sometimes!), cross stitch and sew (I never could knit!). Yes, there are some things I have had to give up (for example learning the clarinet because my fingers won’t now go the right way) but I have started to learn to play the piano instead which is good finger exercise anyway!
Please do keep posting – we’re here to listen and to help where we can.
Love Tillyx

speedalong

Hi Merrily - I love your name. Have I spelled it right? Welcome to the forum. I don't have RA - I have OA and it is managed differently.

You have had some very detailed answers here especially from the wise DD and some great advice from Tilly ...

So I shall say a bit about living with arther - as many of us have come to call arthritis. It does change the way you live your life - but this happens gradually over time. You have to prioritise what you want to do and conserve energy for the activities that are most important to you. Ensure you have enough rest and this is the hardest bit to get right - don't over do it on the good days (easier said than done!!) Enjoy the good days and don't let the bad days spoil the good ones.

Speedy

tkachev

Just wanted to welcome you to the forum.I too have R.A but with the help of lots of medication I am getting back to life.It would help if you could see a consultant much sooner as they will get you onto meds and monitor you with blood tests. In the meantime try to combine rest and moving about, a little bit of light exersise as the stiffness from too much sitting in one position can be so debilitating.
But try to get seen sooner if you can. Pick up the phone and ask for the next available appointment or cancellation because you are hurting so much. As a new patient the sooner you get medication the better.
In the meantime if you have any queries just come on here and ask.
Elizabeth

twinney

Hello Merilly.
Just wanted to welcome you to this site, they are a fabulous bunch of peeps and will help you with anything if they can.
Am waiting to have more tests now to see if I have R/A
Best Wishes
Lynda

valval

hi merrily it all a matter of positive attitude you will already changed the way you do things and how much and when but the right meds do help it takes time to find the right ones for you but when you do the exhaustion will lesson and the stiffness still going through the getting diagnosis bit got oa and for some reason inflimation lol but the meds working great and life so much better this time last year was thinking would have to give up work but life going well there are good and bad days and you have to plann things a little more but life is not over good luck val

merilly

speedalong wrote:

Hi Merrily - I love your name. Have I spelled it right? Welcome to the forum. I don't have RA - I have OA and it is managed differently.

You have had some very detailed answers here especially from the wise DD and some great advice from Tilly ...

So I shall say a bit about living with arther - as many of us have come to call arthritis. It does change the way you live your life - but this happens gradually over time. You have to prioritise what you want to do and conserve energy for the activities that are most important to you. Ensure you have enough rest and this is the hardest bit to get right - don't over do it on the good days (easier said than done!!) Enjoy the good days and don't let the bad days spoil the good ones.

Speedy

Hi there
Just wanted to say a big thank you to everyone who has welcomed me and offered encouragement and advice. I am overwhelmed by the kind responses. Just to let you all know that Merilly is the name of our little hamlet in France and does not necessarily reflect my present mood, although after my first visit to the forum I already feel a whole lot merrier!! :

Thank you all
Margaret

dreamdaisy

You've seen a good cross-section of us all today - we're all different, feel different and react differently! It does sound a lovely place to live - somehow I doubt there's an English equivalent! DD

annie_mial

Hi Merilly, it sounds as if you live in a beautiful place!

Yes, you will find that there are as many 'takes' on arther as there are people who have it..........the hardest part for me was realising that I would never dance again.

Having said that, I can garden (gently) do tapestry work, crochet, knit (slowly), read (voraciously), go out (little and often), look at the stars and sky and clouds and simply enjoy what I have.

To our delight we have just 'downsized' as they say and moved to a much smaller garden flat in Sussex..........we are so enjoying licking it into shape especially the badly neglected garden.

My hubby was very dismissive at first, but has now realized how things are - it does take time with the men, somehow!

Annie

ironic

Hi there Merilly,

Welcome to the forum. It's only natural that you are feeling frightened and confused. You will start to feel better when you get the medication that you need. Pace yourself as the medication can take a little while to start to work. Make a record of your daily symptoms as this can help the Dr's when you go to see them. Make a list of questions you have.
I had alot of pain in my hands, fingers, wrists back and feet. But I can tell you now I am able to go to work part time 4 days aweek, drive, pace myself with garden and housework. I do get tired so I have learned to say" no". I have adapted to what I can and cannot do, so be kind to yourself.
YES there is life after RA.
Good luck with the appt. and I hope to see you posting soon.
Lv, Ix

carola

Hi Merrily

Welcome to this site.

Sorry to hear about your RA. As everyone says, there is no cure however medication can help and you can do alot for yourself to help. Sometimes it is a case of trial and error to get on the right meds - try not to get too disheartened and keep positive whilst you go through this.
I was initially diagnosed with RA however recently been rediagnosed with SLE. I read a book about the Lupus REcovery Diet and in it people with RA, Fibro, SLE etc have vastly improved their symptoms and some off their meds now. It is a low fat, vegan and wholefood diet and further into it you start reintroducing fish etc. I have just started it as thinking as it is a healthy eating way anyway I may as well try it!
You say you are waiting until October for Rheumy appointment? Could you try to grab an appointment earlier that someone else has cancelled - worth a try?
Keep us updated, keep posting here as initially you may feel that your life is changing and need support.

Keep smiling Carol x

biddybeth

Hi Merrily, I have RA, and like many of us here, I still manage to garden. I have long-handle tools and I find my garden a great comfort. Don't worry, it is all very scary when first diagnosed, but there is a lot of help and with the right medication and advice, you will be fine. We are a great lot on here, lots of laughs and sympathetic ears on bad days. Family and friends don't always understand, but we do, being in the same boat. Don't feel alone. Love, Beth

hileena111

Hi Merrily....sorry I cnt help much either.....I've got OA
Just to say welcome to the forum and dont feel alone.....just type and someone will answer your questions

Love
Hileena