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Suspected RA diagnoses, talk to me what life is like with arthritis

(103 Posts)
2fedup Thu 02-May-13 21:14:01

After having issues with my hands and knees for some time and no RA markers in blood tests, they have decided I do, on balance, have RA. It's a bit scary and I've stopped looking at doctor google as that really doesn't help.shock
Off to see the consultant next week and want to know how life goes on. I'm hoping medication will help, but bad flare ups are currently quite a scary thought.

MoreLegsThanMe Thu 02-May-13 21:36:49

It does go on!

Am in a bit of a rush but didn't want you to go unanswered. I have had RA for about eight years now. The more aggressively it's treated at first the slower it progresses. You will probably find your consultant starts you on one drug, then if it doesn't work s/he will add another, take one away etc.

What you must do is look after number one. That is my worst trait, I cannot put myself first. Your body will tell you what it can/cannot do and please don't fight it or try and get through it. If you need to go to bed at 8pm, go (DC and work permitting of course).

I have to go for a bit but will be back later.

twintwo Thu 02-May-13 22:00:18

Will be watching this with interest. I suspect I have RA too, have had problems with the joints in my hands and feet over last few months. A blood test last week showed positive for rheumatoid factor so they are referring me to consultant plus some more blood tests. I'm really scared too, am hoping I can start on treatment soon and try and get it under control..

BreastmilkCrucifiesAFabLatte Thu 02-May-13 23:05:04

Lurking with interest. I also suspect I might have RA..

crashdoll Fri 03-May-13 08:47:03

Life goes on, it goes on differently to the way you might expect it but it can still be good. I have quite severe RA and despite an early diagnosis, we couldn't get it under control and I have joint damage but I've finally found the right combination of medications and after 4 long years, it's settled down a lot.

I didn't want to read and run but I have to go, so I'll be back to ramble reply later.

2fedup Fri 03-May-13 20:42:42

Pleased to see you are both up and rushing around smile
Good advice to rest when needed, I'm very much of the mindset that I'm going to carry on as normal and not let it slow me down, but TBH at times I'm just shattered. I'm not very good at sitting down and resting.

bigfatfeet Fri 03-May-13 20:50:16

Please don't panic, and PLEASE don't Google!

I was diagnosed just under a year ago, am taking all the drugs they give me and am now pretty much pain free and back to normal. I realise I have a long road ahead, and there will be blips along the way, but when I look back to how I was feeling this time last year, I can see how far I've come.

Good luck with your appointment next week.

vole3 Sat 04-May-13 06:10:47

I'm 6 years down the line and a single parent working a minimum 45 hour week in health care. I do have some joint damage due to time taken getting the meds right, but there is nothing I now cannot do that I did before (and probably an awful lot more that I do now that I didn't before, but that's another story).

In the early days listen to your body, rest if you need to, pace yourself, but keep moving if you can. Don't sweat what you cannot manage- who cares if stuff isn't ironed as long as it is clean.

Get OT input for adaptions that make life easier - getting stuck on the loo in the middle of the night is never a good look and some can openers are impossible even without RA. I hasten to add I don't need the loo seat raise now, but it was a godsend for the first 4 months until the flare subsided.

Don't minimise your symptoms to your rheumatology team, state them how they are as they will use that to calculate your DAS (disease activity score) and work out if your meds need changing or upping.

Don't minimise your symptoms to friends and family either. Just because your arms aren't hanging by a thread doesn't mean you have full movement, dexterity or power in them, but people don't appreciate what they can't see.

Fatigue is normal, not just 'I'm a bit tired and could do with a sit down at the end of the day' but that bone aching cannot lift your head off the pillow in the morning pre-flu type tiredness, but it does get better.

Life goes on, even if you do rattle and creak at times smile

Pandsbear Sat 04-May-13 13:58:53

And I am 14 years or so down the line and my RA is now well managed - by that I mean well medication-managed and has been for over 5 years. There are more medications available now than there were back in 1998 and (if it is RA) the Rheumy team will want to get it under control asap. It is the not-under-control RA that causes the joint damage long term.

vole3 has really good points. Best wishes.

OHforDUCKScake Sun 29-Sep-13 19:13:28

Im bumping this thread but cant write much because Im im so much pain, its flared up badly the last week or two and getting worse.

Was supposed to have a blood test 4 years ago but googled, panicked cancelled the appointment and subsequently buried my head in the sand.

Its so bad now its agony to type, it hurts to pick my son up or pat his back, and I couldnt undo his water. My wrists are worse, but also thumbs and knuckles, my elbows and knees.

Making an appointment tomorrlw to get the ball rolling.

Can anyone suggest anything for the pain and cracking in the mean time? Ive tied on a heat pad with a sock on the worst wrist, its helped a lot. Baths help. Im taking regularly neurofen but it isnt touching the sides.

Im ver glad t read this thread. Google has really frightened me.

OHforDUCKScake Sun 29-Sep-13 19:13:44

And Google Image? DONT DO IT.

bigfatfeet Sun 29-Sep-13 20:14:22

Have you tried Voltarol gel? It probably won't completely get rid of the pain but should help you to function - I used it to treat random hurts before I realised what was going on. Hope you get on OK with the doctor - I know how scary it is but if it is RA it will be better to know and start treating it; you don't need to live with this level of pain.

OHforDUCKScake Sun 29-Sep-13 20:17:07

Thank you, yes I have some of that and Ive used it twice it doesnt really do much.

What drugs have they given you bigfatfeet? I noticed above you were diagnosed a year ago which is quite recent.

Im finding it much easier to type right now this second because Ive had my wrist in a wheat bag formthe last hour which helps enormously (does anyone know why heat helps?) but my fingers are cracking.

bigfatfeet Sun 29-Sep-13 20:26:09

I'm on methotrexate and hydroxychloroquine - have had to fiddle with the dosage a bit but they're working really well for me at the moment and I no longer need any painkillers. I also had a couple of steroid injections when I was first diagnosed which helped to relieve the pain and swelling while waiting for the drugs to work.

Apparently the best thing to do is to apply heat followed by cold, but I always found that a bit confusing!

OHforDUCKScake Sun 29-Sep-13 20:31:25

I googled methotrexate and I found this very frightening information Im guessing they dont give that out willy nilly shock.

Im also guessing it wouldnt be good if you breast feed?

LostInWales Sun 29-Sep-13 20:32:45

Hey 2fed, I am waiting on blood test results but due to extent of active arthritis in all my joints I started on Sulfasalazine last week. It's one of the disease modifying drugs and I'm really excited at the prospect of slowing/stopping the progression of the joint damage. Having had osteo-arthritis since my late teens can I say to anyone with pain that taking paracetamol at the correct dose regularly (ie the 8 tablets in 24 hours as stated on the pack) can be beneficial as does taking ibuprofen better than paracetamol because it reduces inflammation BUT if you take ibuprofen regularly always make sure you take it with food and talk to your doctor about protecting your stomach. <Looks ruefully at ulcer blighted tummy> For work and other days when I have bad hands I have some ace neoprene gloves that support, warm and improve grip, plus they look like something bad spiderman would wear grin.

Ducks, GO make an appointment with your doctor as soon as possible, there are medications that, whilst scary, can stop the disease progressing and damaging your joints permanently. Make the most of this!

Hello everyone else too, nice to be somewhere where people understand that the crappy flu type symptoms and 'I cannot function anymore must sleep' body shutdowns. Everyone I know just thinks I've got a 'bad back' which hardly begins to cover it smile.

LostInWales Sun 29-Sep-13 20:34:52

These gloves they make my hands and wrists feel so much happier.

OHforDUCKScake Sun 29-Sep-13 20:41:47

Ive just bought some of those gloves, thanks for the link. LostImWales

bigfatfeet Sun 29-Sep-13 20:44:34

Methotrexate is a serious drug (it's used in much higher doses as chemotherapy) but it's considered the best first line treatment for RA and has worked very well for me, with few side effects. I don't think you can take it if you're breast feeding, and I was warned in very strong terms not to get pregnant (not that there's much danger of that), but there are plenty of others you can try if it doesn't suit you. As LostInWales says, the aim is to stop joint damage, so early, aggressive treatment is the approach they take.

OHforDUCKScake Sun 29-Sep-13 20:48:39

Ironically, when Im pregnant my joints are practically perfect. And for the first year of their life too.

My very first flare up was when my first born was 2.5.

My second son is that age now. I wonder if thats coincedence?

Also, is there anything else that it could be if it isnt RA?

And my last question - do your joints crack a lot during a flare up? I just got up then and every joint in my body cracked when I rose and walked the first few steps.

Thanks for your help.

LostInWales Sun 29-Sep-13 20:50:29

I have a friend who has Lupus and she was treated with Methotrexate last year, whilst it is a scary sounding drug she found she was tired as she got used to the increasing doses but is now so healthy it was worth the 6 months of tiredness.

Ducks I think I might order and extra pair so I am always covered now the cold weather is coming. They are like pulling on a hug for your hand!

I was diagnosed with RA five years ago, and life indeed can and does go on. I think, perhaps, I've been quite lucky in managing to get it under control quickly, and it hasn't affected me very much so far.

DUCKS - I've been on sulfasalazine since I was diagnosed (whilst pregnant) and managed another 2 pregnancies and breast-fed both my DCs (on sulfasalazine), hoping to BF this one too when it pops out in a few weeks time.

I was really upset when first diagnosed, and stupidly googled, and got myself into a right state about it but there are a lot of treatment options available now. Get that appointment ASAP. Try paracetamol and ibuprofen together, and stop typing if it hurts and get to bed if you can. Go to your GP to get some stronger painkillers too. I was given naloxone which helped much more than ibuprofen.

Vole has good advice, I have also found the RA nurses to be really helpful so try to get to see them too if possible.
The other thing I found is that there are certain foods that trigger a flare-up, I think they're different for everyone, and some people might not be affected by food at all, but worth keeping a food diary and seeing if there are any correalations between flare-ups and food groups. Unfortunately it's chocolate and red wine :-( that set it off for me but it's helped a lot to know this now.

x-posts. No coincidence at all with the pregnancies and BF, as it is fairly common that RA gets much better during pregnancy. Your immune system is dampened down (for want of a better expression) during pregnancy and so RA tends to get much better too since it's an auto-immune disease.

OHforDUCKScake Sun 29-Sep-13 21:01:09

Right this has been incredibly helpful and reasurring Im going to save this thread as I may well be back in the near future especially if it is RA once they do a blood test (presumably they will since thats what they wanted to do before).

Thank you!

OHforDUCKScake Sun 29-Sep-13 21:02:32

Ah right!! Not a coincidence!

Hmm... Not sure Im up for another baby although 9 months of drug free pain free joints would be lovely. wink

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