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Rheumatoid Arthritis anyone?

69 replies

LostInWales · 08/09/2013 09:33

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?

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LostInWales · 08/09/2013 20:10

I was useless on co-codamol, something about it makes me slur! Tramadol a much better fit but I did have a few weeks at the start where I didn't drive and had a fairly trippy afternoon nap everyday, I hardly notice it now. The article in the Times was terrible. The one bad tramadol story was a young woman who used to stock pile them and take a load in the evening for a high, the other people were on much older drugs that they were utterly enslaved to after their pain had stopped (ie from pancreatitis). We on the other hand will never have that problem, the gift of pain will always keep on giving Wink Grin. Sorry, I am in a silly mood. My back is utterly wrecked it's entire length and always will be, if I don't laugh I think I would never stop crying.

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LuisSuarezTeeth · 08/09/2013 20:49

LIW sorry, that was DF's particular trigger, didn't mean cut dairy out for YOU. But you have looked at diet, that's all I meant. I shall catch up with your thread shortly! Smile

LostInWales · 08/09/2013 20:56

No, it's really interesting that dairy was his trigger. My heart would break if I had to stop milk products. Lots of people recommend cutting citrus as well. I could manage that more easily than cheese! Grin

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LuisSuarezTeeth · 08/09/2013 21:07

Right, now had a chance to read whole thread!

One thing that strikes me is that 'Arthritis' is lumped in as a general condition. Osteo-arthritis and rheumatoid arthritis are so different.

RA is an autoimmune disease (as I am sure you know) but it is easily confused with OA.

LuisSuarezTeeth · 08/09/2013 21:09

Oh pants, lost rest of post!

But, are you taking Omeprazole? To protect stomach from NSAIDS?

LostInWales · 08/09/2013 21:18

Yes, my whole 'diagnosis' is coloured by the fact that I have had severe osteo arthritis of my thoracic spine since I was in my teens, I have a mild scoliosis and this has led to bridging spurs between the vertebra. Osteo being the typical 'wear and tear' injury whilst rheumatoid is your lovely body attacking your joints instead. My sad confession is that I am actually a radiographer, work is really hard for me but I love my job, old people who complain that their knee starting to ache when they are 80 years old is inconvenient on the other hand, I have no idea how I don't give them a day to day run down on what hurts for me Grin.

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LostInWales · 08/09/2013 21:19

Oh no, I hate losing a post. I take omeprazole every day now although I have lowered my dose thank goodness. I want to take as few drugs as I can.

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MrsStarwars · 08/09/2013 21:29

Interesting reading through people's experiences on here. I was diagnosed with RA about 2 months ago and have been taking methetrexate and another dmard for 6 weeks now. I agree with everyone who says mornings are difficult my poor children are well used to helping me down the stairs now. The flare ups seem to move round from hands, feet and shoulders. I have a week or two where everything is manageable then suddenly I am almost unable to walk in the morning, this happened last week on first day of term, how I walked children to school I'm still not sure. Off to see rheumy nurse next week so will see what she suggests next.

LuisSuarezTeeth · 08/09/2013 21:39

Oh LIW, sorry I am preaching to the converted Blush

LostInWales · 08/09/2013 21:39

Diagnosed recently then. How do they come by the diagnosis, did it all rely on blood tests or was your physical state taken into consideration? I take my children to school in the car most days now and get snotty looks from all the fuckers runners and keep fit peeps. I want to snarl at them and ask them if the bones in their feet are trying to escape.

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LostInWales · 08/09/2013 21:41

No, I know very little about RA Luis, otherwise I wouldn't have posted on here. It's not something that gets x-rayed a lot anymore.

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LostInWales · 08/09/2013 21:43

Plus can you imagine how unprofessional I would look if I started corralling patients in the room and quizzing them about their pain levels and what medicines they took not that I haven't been sorely tempted Grin.

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candycoatedwaterdrops · 08/09/2013 21:46

MrsStarwars It's really early days for you. As hard as it is, you need to give the methotrexate and other drug time to work. Most of them can take up to 6 months to feel the full effects. Steroid depo injections give me a few weeks relief which is always nice. I prefer steroid tablets but I had trouble coming off them a year ago and my rheumy won't let me try again. I do miss the little buggers. Blush

mineofuselessinformation · 08/09/2013 21:48

Can I crash the thread and ask you ladies a question?
I have had problems with joints for many years - torticollis in neck, loss of movement in thumb joints, bad back, needing to sleep with wrists straight, etc. (I also have mild scoliosis in the upper spine which can leave me in a lot of pain if I'm very tired). I have what appears to be bunions on my feet which have been described as 'arthritic changes'. I have had bouts of gout-like symptoms in one big toe joint and now have sore finger joints with loss of movement. Knocking on a door or banging my left elbow are painful enough to bring tears to my eyes. My joints seem to take it in turns to be sore. All blood tests are negative - rheumatoid factor and ccp. I'm waiting to see a rheumatologist but wondered if anyone has any wise words? As background, my mum has severe arthritis in hands, feet, neck and spine, and as much as I love her I don't want to end up like her. Hmm

LuisSuarezTeeth · 08/09/2013 22:04

The blood test is only an indicator and only definitively diagnoses approximately 60% of cases of RA (at my last research and blood test 6 months ago)

MrsStarwars · 08/09/2013 22:06

Thanks candy I am only just getting to grips with all this medication, it's a lot to take on when youre only used to a paracetamol, I also agree the steroids are great! Diagnosis was made by examination of joints, X-rays which showed up inflammation, positive rheumatoid factor and crp levels. I had pretty much self diagnosed it before going to GP, all the tests just helped to make it definite. I was lucky in not having to wait too long for appointments at the clinic.

LostInWales · 08/09/2013 22:16

Going to bed now but I wanted to say how lovely it's been to 'meet' you all, glad people want to crash the thread and ask stuff, it's horrible and alienating living with so much pain so having allies can only help us all. Luis you seem to be really well researched, I hope you hang around although I really hope you don't develop RA yourself. Must be very frightening when you have seen someone you love live with it. Mmm, must be the only person who is glad the weather has broken so I can get my trusty electric blanket on again Grin, night.

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LuisSuarezTeeth · 08/09/2013 22:26

LIW sleep well, sleep is your friend.

You will always have support here and if I can help at all please do PM.

Good wishes x

LostInWales · 09/09/2013 08:56

Morning all, hope everyone had a good nights sleep (we will ignore the restless legs that kept me awake last night because it is just too unfair to have legs that want to do Riverdance at 3am as a side effect of medicine). Anyway, wishing everyone a great, low pain lovely and mobile week not been listening to a positive thinking CD at all Grin

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MildlyMiserable · 09/09/2013 18:22

After having a really up day yesterday (it was my Bday so forced it upon myself) today I am the opposite, holy moly I wish I could cut my own arms off the pain is s severe. Did school run came home took codydramol with a view to sleeping it off - forgot they were relaying our road today! The noise of the roadworks almost tipped me over the edge!
Thankfully my DN came to distract me and we did a wardrobe clearance (not much fits as have put on over 2 stone in the last year due to steroids and lack of energy to excercise!), some for charity and some to EBay. The poor I had to put up with me talking nonsense, unfortunately one of the side effects of my painkillers, can't feel the pain but can't string a sentence together either.
My DN went away happy with a vintage (to her) leather bomber jacket, which is apparently is what young ladies are wearing these days, she laughed when I told her I bought it the year her parents were married, they celebrated their silver wedding anniversary this year!
Thankfully she kept my mind off the pain, meds have worn off but will save anymore until bedtime or there'll be no dinner for DS!
Here's to a better day tomorrow!

LostInWales · 09/09/2013 21:25

I always like to think of the fun I had making myself painful and then realise I could be having a lower pain day but wouldn't have the happy memories. Life is for living, we just have to balance the scales more than most. Having said that I would probably have necked an extra tramadol to give me the strength to throw the roadworks equipment at it's user Wink. I bet DN was well chuffed. I was a teenager 25 years ago . Now I'm already arthritic and deaf, what a catch Wink.

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LuisSuarezTeeth · 09/09/2013 22:25

LIW I get the restless legs! Fucking annoying and stressful.

Cold water on my feet helps, have you tried it?

Mildly so sorry about your pain Sad

LostInWales · 09/09/2013 22:49

I have taken to trying to stuff my legs in the sink. Only realised today that sitting on the edge of a bath may be a safer method Blush. Does work though you are right. I am loading up on the iron incase it is anaemia causing it, spatone have a new apple flavour that isn't actually grim to take. My happy finding for today Smile.

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flow4 · 10/09/2013 08:09

Sorry I didn't answer you yesterday Lost; I was at work then physio, then collapsing and sleeping...!

You asked about joint hypermobility syndrome (JHS)... It is badly diagnosed: apparently 50% of people with it have it for ten years or more before diagnosis. That probably includes me, but to be fair my symptoms have only been really bad for 2 years or so.

It is diagnosed with something called the Brighton criteria. The major dx factors are bendiness in 4+ of 9 key joints, plus pain. There are minor dx factors too, including presence of varicose veins and hernia.

There's more info here in a DWP doc written by the UK's JHS 'expert'.

I am only just coming to terms with it, and haven't yet got on top of managing it... But I definitely think stress exacerbated my symptoms. Then trying to avoid pain made me exercise less, and I have put on about 15-20kg, which also puts much more stress on my lower joints. I haven't noticed any food effects, but I have been veggie since 1987 anyway. I suspect hydration also plays a role: I am constantly thirsty (and diabetes has been ruled out) and I think my pain is worse if I don't drink enough water. I need to exercise too - I know it helps and the muscles around my joints need to be stronger to compensate for the loose connective tissues - but the right balance is hard to achieve because it hurts.

I self-referred to a health trainer via our local social care system, before formal diagnosis. She had RA and was helpful and inspiring. She emphasised being kind to yourself, eating well/whole foods, exercise and 'mindfulness' techniques. (Our local pain clinic uses mindfulness too, but I can't get a referral). She has had RA for 20 years and had had visible surgery on her fingers, but has pain free days following her own recommendations. :)

BTW Lost, my dad had a dx of RA, but the rheumy said it was prob actually JHS misdiagnosed... So it's def worth exploring.

LuisSuarezTeeth · 10/09/2013 10:16

Hi LIW how are you today? Was thinking about the RLS and found these

You could use a stretchy Velcro strap to hold them in place so you can stay in bed. I actually used those bottle cooler things around my calves or feet Grin

Are you on anti TNF?