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Rheumatoid Arthritis anyone?

(70 Posts)
LostInWales Sun 08-Sep-13 09:33:58

Not that I want any of you lovely lot to have this but I could do with a bit of company and advice. Not a lot of people (luckily) understand what living with chronic pain is like and sometimes it would be nice to go AAAAAAARRGGGGHHH with someone who understands.

So, I have had arthritis in my thoracic spine since my teens but the pain has spread to the point now where on a recent bone scan the report gave up naming specific areas and basically went 'and everywhere else too'. I have my first rheumatology appointment in about two weeks and I am torn between hoping this is what it is and worrying that it is a crappy label to be stuck with. Either way everything will still hurt the same. I am basically kept going with tramadol which at least keeps me chilled and philosophical if it doesn't take the pain away wink

This week I have been blessed with one of my lovely moments where the pain ramps up and up over a week until I am pretty much crippled and fluey feeling. It is such a joy to be me sometimes grin. Does anyone else get these moments?

sonlypuppyfat Sun 08-Sep-13 09:38:40

You poor thing. I've got arthritis in my feet and ankles which is bad enough you must feel awful. I have a friend who's 12 yr old has it in every joint in her body .

LostInWales Sun 08-Sep-13 09:44:09

Ooh uck, feet and ankles are very annoying. I miss heels and flip flops a lot! You don't realise how useful pain free walking can be until it goes do you? Poor teen, I hope they can help that must be so frustrating when everyone else is running about and jumping and being silly.

drinkyourmilk Sun 08-Sep-13 09:50:08

I'm going through the diagnostic stage atm.
Really nervous about what it means in terms of work, ttc, etc. However general movement is becoming so painful (its in my spine) that anything they can do to help would be appreciated.
I keep having flare ups in different joints, and then it goes after about 3/4 months and moves somewhere else. In my ankle and thumbs atm.
Is this normal?

MildlyMiserable Sun 08-Sep-13 09:50:52

Started off with R.A. diagnoses, ramped up to Stills Disease, like R.A. but effects muscles and organs as well as joints. I feel your pain, it does slow me down and is very painful but I try to ignore it as much as possible. I know that probably sounds stupid as I am on a load of meds but I don't want it to win!

MildlyMiserable Sun 08-Sep-13 10:01:00

I started with just not being right, fluky symptoms all the time and swollen digits, took a while to convince my doc I wasnt well, quite a few blood tests later Rhuematoid factors raised, Rhuemy appointment with instant diagnoses of R.A. Unfortunately for me that was the start of a very long flare, three years later I am now on anti TNF's which stop your body creating the immune system that attacks you, unfortunately suppressed immune system leaves me more susceptible to bacteria and viruses - am making this sound so attractive!
Only been on the new meds for 2 months, they are working, a bit, the swelling and pain are reduced for about 8-10 days of the 14 day cycle, so much better than before, almost normal for ne out of every two weeks, if that makes sense, so a 50% improvement for me.
Dreading the winter though as that's when the Reynaud's kicks in - no circulation to fingers and toes! This is not normal for all R.A. sufferes though!

LostInWales Sun 08-Sep-13 10:03:48

Utterly understand not giving in! I refuse to limp or bend. I'm a coach for an under 8's football team and even though everything was screaming at me I just thought 'it's only an hour to get through if I quit everything now where will I be in 10 years'. Although next week I think I'll take my top up tramadol before not after wink

Yes to the travelling round joints. This weeks 'flare up' started in my right shoulder but has since been fairly equal opportunity for the rest if my joints. At least now I know that these bad periods will be balanced by less painful ones. I am nervous but excited about a diagnosis, I know they aren't pretty treatments but there is a chance to slow the progression down which would be ace.

wonkylegs Sun 08-Sep-13 10:08:42

Hi, another one here.
RA for 16 yrs, since I was 19. In most places but not my spine. Mines not too badly controlled on a mix of MTX & anti- TNF but currently on a break from the MTX aspect so suffering more especially in the mornings & evenings.
It's a miserable depressing disease but I refuse to let it get to me. It's taken many years but I love my drugs for giving me my life back.

LostInWales Sun 08-Sep-13 10:08:53

drink I have had three children in the time I have had arthritis. You have to be more organised to help yourself with moving about and get your other half to do the carrying in a sling stuff. Make sure you ask for help and you'll be fine.

LostInWales Sun 08-Sep-13 10:13:16

Mornings are bastards aren't they wonky? I'm in my 30's and every day I wake up the first thing I do is a bit of a pain/mobility survey, this is the part that lur friends won't ever understand. The children know not to bother me until the tramadol/strong coffee have evened me out. I'm hopefully getting morphine patches so I don't have such ups and downs with my pain levels when the tramadol wears off too early.

Great news that you can control things relatively well with medicine though.

LostInWales Sun 08-Sep-13 10:14:37

Lur friends? Interesting, I'm blaming my immobile fingers for that one wink I meant 'our'.

wonkylegs Sun 08-Sep-13 13:43:47

Drink - I've also had a DS since diagnosis, it requires a bit more planning but it's doable. When you get to the stage of TTC there is a fab book here which helps you get your head round it all.

lilypad21 Sun 08-Sep-13 14:23:53

Hiya I've had R.A for 8 years (since I was 14). Affecting pretty much everywhere. Flare up at the moment too

LuisSuarezTeeth Sun 08-Sep-13 14:42:42

Not RA myself but my DF had it for many years.

Thankfully the drug treatments seem much improved now, but having observed the misery it caused him, I have much sympathy for you.

2 things maybe worth looking at. DF discovered that dairy products caused/exacerbated his flare ups. Piece of cheese =raging pain the next day.

Also, he had uric acid levels monitored. The symptoms of gout can be very similar apparently. He didn't have it though.

Hugs to you x

LostInWales Sun 08-Sep-13 14:55:03

lilypad can I ask you what a 'flare up' feels like? I am having to do pretty much everything for myself as the access to health services are hopeless here, so far I am just going on the fact that I have active arthritis in all my joints, large and small, and hoping that the referral to rheumatology I fought for finally works out what is properly wrong. Right so my current symptoms; about 7 days ago my joint pain starts getting much, much worse, starting in my right shoulder but spreading everywhere, by friday I felt like I was coming down with flu, cold and achey, so so achey in all my joints. Now it isn't so bad but I have almost a nettle rash sensation on parts of my body and sciatica in my legs. No one seems to have a clue why, the rheumatology referral is mainly because I am very stiff in the morning and have bilateral joints affected. Does this sound like the sort of flare up that affects you?

LostInWales Sun 08-Sep-13 14:59:13

I have cut out wheat Luis, on the advice of my GP, I don't think it has made a difference to my joints but I have lots more energy generally and I've lost weight grin. I don't like to cut dairy because I worry about getting enough calcium through my diet. I actually have cut all 'fake' food products out, so only real sugars and full fat foods, home cooked food not microwave meals, so far I have lost three stone. Whether the diet helps joints or not less weight certainly makes my ankles happier smile.

lilypad21 Sun 08-Sep-13 15:21:54

Lostinwales all those symptoms sound exactly like mine, I actually get about 5 really bad migraines a month and the rheumatologist has said it could be linked. Swimming is a life saver! It helps so much as it doesn't put pressure on any part of your body but helps you to exercise you just need to make sure you're gentle. Also have heard some stuff about red meat etc being bad for arthritis sufferers. The arthritis centre at my local hospital actually dismissed me angry so I am about to get a re referral but I was having remicade infusions along with methotrexate which both really help. Is there any way you can go back to your GP? What is the actual situation with your access to health services?

LostInWales Sun 08-Sep-13 16:28:10

I have persuaded my GP to send me to the rheumatology (?sp) clinic and my appointment is in about a fourtnight, we are very rural though so the hospital is a twisty turny road about an hour away or two hours if you need anything out of the ordinary. I also have a referral to pain clinic but that won't be for ages as the list is waaaay long. I had to go private to be referred for a bone scan and then literally take my report to the GP and almost read it out to her as she was trying to dismiss me. Fair play once she had seen it on paper she immediately gave me a stronger dose of painkillers but I had to really push for the referral. I hate to say it but I am so pleased my symptoms match yours (although I am so sorry you are living with it too, so awful for you). I was worried I would get there after pushing so hard and they would laugh at me and send me away. I love swimming thank goodness, I used to love going to the gym too and long walks but there you are at least I can still swim. I hadn't heard about red meat, I am trying to eat a really balanced 'pure' diet IYSWIM, no massive long ingredient lists or fillers and preservatives (other than sugar and vinegar).

Sorry there are so many of us stuffed up like this but it is just amazing to have other people to talk to who know what it is like. Everyone round here is so into their running and keep fit and I feel so left out. (sob grin)

flow4 Sun 08-Sep-13 16:38:38

It's rubbish, isn't it Lost? I have pain in every joint except my left elbow, and in some non-joint places like across the bridge of my nose. First thoughts were RA, but my rheumatoid factor was normal, and hypermobility plus early onset osteo was tentatively diagnosed... When I finally got to see the rheumatologist, he confirmed this diagnosis...

LostInWales Sun 08-Sep-13 16:45:41

Yes, uttlerly rubbish flow. Although I hadn't thought of my nose, yay, I have somewhere that doesn't hurt grin. Reading around the subject there isn't a cast iron blood test, you can have a 1 in 20 chance of a positive test if you are fine and something like 1 in 3 chance of it being negative even if you have RA.

<goes off to contemplate her pain free nose grin>

candycoatedwaterdrops Sun 08-Sep-13 19:00:36

I was diagnosed with RA in 2009 aged 21. I've had short periods of getting the disease somewhat under control but overall, I've just got progressively worse. I started anti-TNF therapy a few weeks ago but have puked on and off since then. I'm not feeling very hopeful to be honest. But for what it's worth, plenty of people get their disease under control quite quickly and rheumatologists are starting to faff around less with DMARDs and get people started on anti-TNFs ASAP.

LostInWales Sun 08-Sep-13 19:24:26

Wow, hadn't realised how 'lucky' I am to only really be affected in my 30's, at least I got to have a bit space to walk up mountains and dance until 6am just with a bit of added back ache. We need to make a cool quiche of something so everyone is a tiny bit jealous of us wink.

Lovely piece in the Times today about prescription drug addiction with a huge photo of a packet of tramadol on the page. Please God no one show it to my mother or that will be one more thing to worry at me about. Does anyone take any nice strong painkillers? I know there are horrible drug effects out there for half the things we take but I do really enjoy how unbothered my lovely tramadol makes me feel (I would kill to not have to take it and we all know nothing actually takes away the pain obviously but there might as well be an upside to something.)

lilypad21 Sun 08-Sep-13 19:32:15

I have been prescribed diazepam which although is a muscle relaxant seems to really help when one of my joints has 'locked' so that's good. I also have codydramol and morphine patches.
Anti-tnf (which is what remicade is) works so well and for me the sickness lasted about 2 months and then I got over it. It does make me so drowsy though.
I was told I'd been in a wheelchair by the time I was 18 so I feel pretty lucky!

flow4 Sun 08-Sep-13 19:37:48

Hooray for your pain-free nose, Lost! wine
Joint hypermobility syndrome - which is what I have - can cause osteo-arthritis because your joints are too bendy and wear out quicker... But it's primarily a connective tissue disorder, so ligaments, collagen and cartilidge are affected... As well as pain, you can get lovely bonuses like hernia and incontinence and problems with your heart valves... It is also a common feature of the disease that local anaesthetic and pain killers don't work well, or at all. As the consultant cheerily said to me: "You just have to get used to a certain level of pain". sad So I don't want RA too!

LostInWales Sun 08-Sep-13 19:47:07

Way to go lilypad, you've got to celebrate everything you can wink. Tramadol made me very drowsy at first, plus the hallucinations were interesting whilst they lasted but I could be rational and understand that's what they were. I'm hoping for morphine patches though because the tramadol doesn't last until the next dose, plus I had an ulcer about 5 years ago because of my 15 year dependence on NASID's so I worry what I'm doing to my insides.

'get used to a certain level of pain' oh wonderful, you must have happily wanted to punch him on the nose (only that would probably give you pain in your wrist, elbow and shoulder for a couple of days so not really worth it). I've wondered about hyper-mobility too because I'm very bendy but I think it goes a bit further than that doesn't it grin. How did they diagnose that for you then?

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