Trying not to let this affect my life!

YellowFish

Hi. I am 29 and this time last year started to notice stiffness and swelling in my hands. Went to the GP around October and got referred to the consultant. Have had MRI scan which shows swelling in knuckle joints but no damage as yet. Although it's not shown up in blood tests, the consultant seems to think its RA. He gave me a choice about whether to go on meds immeadiately or to wait. The pain was under control at that point simply with paracetemol and neurofen, and I decided to wait til next appointment to decide about other drugs.

A few weeks later my boyfriend proposed (yey!) and I was really excited - for about three months my pain went down and even the permanent odd-looking swelling seemed to go down. I also noticed than when I was under a period of intense stress around Christmas that my symptoms lessened. I wondered if when I'm excited/stressed and have adrenaline pumping round my body that it is acting like a steroid? Does anyone else find their symptoms improve when they are stressed!?! By far my worst days have been when I am relaxed and unwound - after a good nights sleep my hands are far more swollen/stiff/sore.

The last three months the pain has been getting much worse. I am an avid cyclist. I cycle everywhere - including a 6 mile commute to work each day. There have been days when I have just cried throughout the ride from the pain - and then the feeling of despair of imagining that this is going to force me to give up my bike. It's hard to explain but the thought of not being able to bike hurts more than the pain in my hands! The pain is spreading to my wrists, toes, and sometimes knees. I am a teacher and the first hour I'm in school setting up the classroom has been agony - I teach 5 year olds so I lift equipment, toys, books etc to set the room up ready for the day. Even dressing myself. To begin with the pain and stiffness would be gone by about 10am, lunchtime at the latest but now it's at least 4pm before it starts to become more bearable and I've had some nights so uncomfortable I can't sleep.

I've been trying to get the appointment with the consultant brought forward with limited success - will now be seeing him middle of September instead of October. I went to the GP to get some better pain relief to help me manage in the meantime - she gave me paracetemol, naproxin and codeine and we had a long chat about how/when/decisions to take these. Paracetemol does help when it's mild, but when the pain's more severe the naproxin seems useless. The codeine helps the pain but on bad days I've ended up having to take a fairly strong dose and that is playing havoc with my digestive system! I really need to some help from someone more experienced with this at managing my pain. Also, opinions on biking?
Thank you for reading this long post - I feel like I've been on my own with this the last few months and it's great to find a forum like this.

dreamdaisy

Hi yellowfish, it's lovely to meet you but I am sorry you have had to find us. I am not having a good day so won't be on here for long, but I shall think about everything you have said and see if I can help in anyway. I am no great fan of naproxen, it's never really done anything for me compared to the first anti-inflammatory I had. I was taken off that and put on the nap plus a stomach protector called Omeprazole - are you on anything similar? If not I think you should be as these things can cause gut ulcers. The codeine can cause constipation so again the doc can give you summat to help with that, I have docusate caplets which are very easy to swallow and they help. I wish you well and I will be back when I am feeling brighter. DD

skezier

H Yellowfish,

Welcome from me as well.

Its a hard one re the cycling.. maybe on a good day do it but on a bad perhaps there is an alternative you can use?

Ace you got a teaching helper ( my brains gone blank on what they are called, sorry) who could maybe do the lifting and stiff for you on a bad day?

Its so hard to find tablets that are right for you. Its good you are on pain killers and anti inflammatories though but when you do see the rumo I think it could be a lot better for you to go on the modifiers..... I know the side effects are kinda worrying but you may not get them and it could help you so much and knock it on the head a bit for you.

The effects on the digestion is something you need to talk to the gp about really it might be your body just has to get used to it all but I think it is worth saying about it to the gp.

Its not too long till September flower and I think it would be a good idea to keep a pain diary between now and the rumo, take pics to if you can. Hang in there and nice to met you. Cris x

stickywicket

Hi Yellowfish and welcome from me too. In order in which you raise them:

First off, I’d say stress usually makes RA worse, not better. Definitely has done with mine. I have to say though that, when you mentioned excitement (Congratulations on the engagement!) triggering adrenaline and that maybe having a kind of steroid effect – well that did bring to mind a vague memory. I know I once wondered something similar. Maybe it’s endorphins rather than adrenaline.

I agree with skezier about the cycling. The thing is, exercise is good in principle but when things are rough you really need to give your joints a break and do only gentle stuff. Cycling in to work when you’re not really feeling up to it is bad enough: putting yourself in the position where you then have to cycle back however you’re feeling is definitely bad. That doesn’t mean you must give it up completely or forever – just make it a leisure activity rather than a means of transport for a while until things settle down a bit.

I think another chat with your GP about the meds is probably called for. I presume you’re taking the naproxen all the time, not just when you feel really bad. Both that and the painkillers can mess up your stomach and you do need a protector. It tends to be a bit hit and miss with anti-inflammatories, finding the one that does it best for you. Naproxen is good for many but not all. There are plenty of others!

As skezier said, a pain diary, with or without pics of swelling, would be a good idea to take to the rheumatology appointment as it’s so easy to forget the wheres and the whens. Another person is also good to take as then there are two of you to remember what can seem to be a lot of info.

I hope it goes well for you. Meanwhile, hang around here and we’ll try to help.

weejean

Hi Yellowfish

I dont have any advice for you as I have OA but I just wanted to say Hello and I hope you start to feel better soon. Take care of yourself xx

valval

hi i think it time to think of meds so you can keep on riding your bike exercise is good for you you might have to get one with a motor on for bad days val

dorcas

Hello yellowfish and welcome to the forum

You've had some great advice from sticky and skezier and I can only add a nodding agreement to everything they've said. wise peeps indeed!

I'm glad you've found this forum :!: for if there's one thing you can be sure of.. it's that you need not ever feel you are battling on your own with this condition. There are many good folks here who will listen and support you.

Remember too that the impact of RA OA or PA etc can be lessened/ managed with the right medication and advice from the docs or rheummatologists, so it's good that you will soon see your consultant. As Cris said.... go prepared and keep that diary between now and then. it really is a positive thing to do and will help your docs enormously with the diagnosis and correct treatment.

Keep posting and please let us know how you get on?

Oh and congratulations on your engagement!

Iris xxx

barbara12

Hi Yellowfish and welcome to this lovely forum
The others have said it all, but I just want to add my support, and you know were we are when you need us.
Please let us know how you get on..

frogmorton

Welcome Yellowfish

Tis very good to meet you and congratulations on your engagement

Not so good about your possible RA though. Mid september may well be as good as it'[s going to get lass l am sorry, but you have done well to move it taht far. Have you offered to(and can you?) take a cancellation at short notice?

Inflamtory arthritises are very often worse first thing with teh stiffness being at it's worst then. It is so hard to suggest anything which really will help in the abscence of 'proper' disease modifying drugs, but your GP precscribe stronger pain releif for you in the short-term.

Hope you do go and see him and he/she can help for now.

Love and hugs

toni xx

julie47

Morning yellowfish

Just wanted to pop in and welcome you to the forum.

And a big congratulations on your engagement.

You have been given lots of advice from the lovely people before me, so all I want to say is try to keep your chin up until the middle of september. (I know it is hard :sad: )

I hope when you see the rhummy they get you started on some meds straight away.

Take care
Juliepf x

dreamdaisy

Hi yellowfish, how are you feeling today? I hope you are as OK as you can be. DD

flowerpot

Hi YellowFish,

just wanted to say hello as your story sounds so similar to mine, at the grand old age of 29 we have days when our hands feel like 89! I still haven't been fully diagnosed but they are leaning towards either RA or Lupus, I have terrible pain in my hands, wrists and toes.

I would echo the advise of others with regards to medication, and would recommend acting swiftly, when I first started having symptoms I was taking a lot of Ibuprofen, and although I always took it with food ended up with terrible stomach pains to the point of debating calling the ambulance. A trip back to my GP and I now take Omezprole to protect my stomach, and after a few months moved over to naproxen. Have you tried varying when you take it? I started taking it 4 times a day, but found it never really took the edge off the pain, so now take a "double dose" in the morning and late afternoon and it seems to suit me better.

I find that I am in most pain after resting, it was 3 days off work camping that really brought the pain on, and then had to try and drive home after packing up my tent that was when I accepted something wasn't right. Prior to that I thought it was just a bit of rsi. My GP thinks it was the complete change in workload which caused my joints to cease as I work at a computer all day, and was doing 60 hr weeks so that's a lot of typing. So under the advice of my GP and rheumatologist I was told to try and keep my hands active, but not strained. My solution, I have taught myself to knit and crochet, so even over the course of the weekend I have something to gently get my hands moving. Yes I do feel like a granny with my aching hands and my knitting, but it makes Monday mornings a lot easier :-)

Good luck with your appointment, say everything you want to say, ask everything you want to ask, no matter how daft it may sound to you!

dotty123

Hi and welcome , I don't have RA as I have OA so can't really advise. But I do understand the pain and discomfort. I can't quite accept yet having OA and feeling like oap and not a 43 yr old.. I feel 20 yrs in my head lol..

You have to learn to listen to your body.. rest when needed and exercise when needed.

xx

YellowFish

Thank you everybody! I never expected so many people to be out there and to respond!! I am touched.

My plan is to go on the modifiers when I see the consultant - when I saw him last he gave me leaflets for two different types - I can't remember what they're called but basically one meant getting my eyes tested regularly and the other meant getting my blood tested! As the symptoms had improved for a month or so then, we decided to just hang on - there was still a possibility at that stage that the symptoms were being caused by a virus that was mimicking RA. If things flared up again he said I could take the leaflet to my GP and ask them to prescribe the modifiers, and come back for the routine appointment in October. By June things had flared up and so I went to GP - she prescribed them but said for me to phone the consultant before starting the drugs. He left me a message saying he wanted to see me in clinic before I started the drugs. That seems sensible, but back in June the best they could offer me was 12th September - consultant holidays maybe causing a backlog? I hadn't realised I could try getting a cancellation appointment - I shall give that a go tomorrow.

On your advice about taking two people to the appointment - my husband-to-be is going to come with me now.

Stickywicket, does naproxen have a cumulative effect then? I am taking paracetemol continuously, but I'm using the naproxen/codeine according to the pain level - that was how the GP explained to use it. I'm really hoping that the consultant will be able to prescribe something better and that there'll be enough time to discuss managing the pain properly.

Val - I like the idea of a motorbike! The thing is, my legs are fine! They can pedal no problemo, it's my wrists and hands which give me grief - especially gripping the brakes downhill/changing gear. I've never ridden a motorbike but I was thinking today about driving - I haven't driven in a while but I imagine the steering wheel, seat belt, handbrake, gearstick etc would cause me grief in the morning! How do other people manage?

The pain diary - good idea. Thanks.

If you were in my shoes, what questions would you ask the consultant?

Thanks again for all your advice. I really appreciate it.

lindalegs

Hi Yellowfish, I'm Legs, welcome to posting.

You're engaged that's brill news .....we can all come to your wedding if you're short of guests

There's a saying 'Knowing that somebody loves you is the loveliest thing you can know' so true isn't it?

As regards cycling. Don't despair because even if you had to give it up short term you won't lose the ability. I'm a veteran of RA (25 years :shock: ) used to be a keen cyclist and though that isn't possible for me now I go on an exercise bike instead, not the same, I know, but at least I haven't lost the action.

When you see your consultant he'll probably prescribe Dmards for you (Disease Modifying drugs) like Methotrexate, Sulphasalazine etc and these will help push your disease into remission and therefore prevent damage to your joints.

I suggest as well as a pain dairy that you take a list of questions too and that you start that now also.

I find that stress and when I used to have periods can make my RA worse.

Hope this helps.

stickywicket

You ask if naproxen has a cumulative effect. The honest answer is I’m not sure. All I do know is that, in the years when I was on them it was every day not just as and when. Mr SW, who has the odd twinge of ‘wear & tear’ in his hip, takes one before swanning off to do 18 holes of golf but, for us who have this pain day in/day out that’s how we have to take the meds too. However, always check with your GP before changing your med routine.

As for driving – I was at least 10 years into arthritis before I learned to drive. There are quite a lot of adaptions that make life much easier or, in my case, possible. I used an automatic with the pedals swapped over to my ‘better’ foot and a pull on/push off handbrake.