Rheumatoid Arthritis anyone?

[LostInWales]

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

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 . Does anyone else get these moments?

[drinkyourmilk]

Hope no one minds me rekindling this thread.
Had my first rheumatology appointment yesterday, and she bandied around practically every itis I can think of! She said I definitely have osteoarthritis, and is fairly sure I have fibromyalgia too. She thinks I may also have ankylosing spondy something or other.
This is based on a physical exam and history, pain scales etc
I now need blood tests (looks like feckin loads! Not sure I have that much to give!) And xrays and a soft tissue xray.
It all seems a bit overwhelming.

[LostInWales]

I've just finished coaching an under 8's football squad in the drizzle, all I can say is thank goodness for tramadol . I'm not letting pain get in the way of the fun stuff.

[LuisSuarezTeeth]

Bless you LIW. The system sucks

How you feeling now?

[LostInWales]

I work in the NHS, it makes me weep! I had to chase down my own scan results and take them physically to the GP because all she had on file was a letter from my consultant saying there was nothing else he could do for me and my back was fine. It could be a great institution if we could just get rid of the people who CBA and kept all the ones who go above and beyond to help me of course.

Had a v painful walk on the beach today but at least I went, now doing my OU coursework as I have discovered really hard maths is a great way of distracting me from the pain Hope everyone is having a good day and that candy yours us a vast improvement on yesterday!

[MrsStarwars]

Lost, it is so frustrating telling people how to do their job, I used to work in the NHS so have good idea of how things are supposed to be done. However I am naturally a shy person and find all this unnecessary questioning and endless conversations hard work. Luis, I wish one person could coordinate the care properly, at the moment I trust my GP more than the rheumy clinic as they are very unorganised and have no communication. The GP's would rather the clinic sorts everything out as they are the 'experts'. It is early days for me so will keep close eye in things until RA is more stable. (If that ever happens) Candy, I am sorry you are having such a rough time,

[LostInWales]

Great idea about downloading the NICE guidelines. I hate the fact that I have to 'manage' my condition too, I wish the doctors or a specialist nurse would watch over me somehow, it's been years and years of me pushing to even get this far. How do people who aren't so forward and questioning cope? It's not fair really.

candycoatedwaterdrops it IS, it is shit and unfair and hideous, come here and rant and rant and rant. This is space for people who understand and feel exactly the same way. Sometimes I hate that I have to say again that I am sore but people don't 'get it' and you feel like a whinger going on about it. Here I can say, fuck you bastard RA, you are evil and I kick you in the shins on candy's behalf (because I don't want her to have a sore foot tomorrow from doing it herself ).

Hullo beyond, I wonder if I have psoriatic arthritis because I have some really attractive 'plaques' on my legs. We are just so sexy! Sorry if that seems to oversimplify things for you, I'm sure there is more to it than that.

Luis, in the side effects bit of my AD's it mentions RLS in the middle of the range section. They are rather old school AD's because of the seizure risk combined with tramadol for the modern SSRI's. I'm nearly off them anyway, somehow taking control of life, however crappy it is, is making me feel a lot happier.

Bedtime for me already, we have a new puppy and I have been very busy giving snuggles instead of MNing, she is a joy and more importantly with my older dog, forces me out of the house every morning to get fresh air and exercise whether I want to or not. Sleep tight every one.

[LuisSuarezTeeth]

Sorry, co-ordinating, your care?
(Fat fingers, I-phone, want lap top back)

[LuisSuarezTeeth]

MrsSW that is what drives me nuts.

Who do you feel should be co-ordinat

[MrsStarwars]

I agree with you Luis on keeping records of conversations and test results from different places. I went to see rheumy nurse at the hospital today for routine check up, she had no idea I was having trouble getting repeat prescriptions from my GP even though many phone calls have taken place over the last few weeks. It is frustrating as I feel I have to manage this condition as best as I can and the people who are supposed to coordinate the care have no idea. I've found reading the NICE guidelines for RA and other articles helpfull so at least I know what treatment I should be getting. Rant over.

[LuisSuarezTeeth]

Flow

[LuisSuarezTeeth]

To achieve, sorry, not yo achieve

[LuisSuarezTeeth]

Glad you mentioned magnesium LIW, it's a possible factor in rls.

You think the AD's caused the RLS?

The principle with ice packs, when I suffered badly, is to essentially sleep with them on. I found I kicked them off in my sleep. Others find heat packs work.

The key thing with RA I have found is that it is never simple. You see the GP, different consultants etc. ultimately someone needs to 'manage' you and that is difficult yo achieve.

I advise keeping records of conversations, test results and so on with RA. It really helps. Hope that's not too bossy

[LuisSuarezTeeth]

Candy, I wish it would fuck off too, I'm so angry. I don't have it and I can't be in your shoes.

I have only seen it with DF and seen the misery. Am so sorry x

[candycoatedwaterdrops]

Fuck RA, just fuck it. I wish it would just fuck off. Sorry.

[flow4]

I'm 48, Lost. I have had joint problems and pain for about 20 years, but GPs blamed my weight, child birth, stress and then my age, before I finally got an 'official' diagnosis 3 weeks ago. :(

[BeyondTheLimitsOfAcceptability]

Hello! I have psoriatic arthritis, which is basically the same as RA, and am in Wales too so waving at you! :)
Am also speaking to GP about hypermobility in the morning too

I'm 27 now and went from fine in pregnancy to ridiculous amounts of pain after having ds2 last year.

[LostInWales]

Don't lose heart flow4, I did exactly that, 22 to 14-16 when I was in my gym bunny phase (taking stupid amounts of ibuprofen and paracetamol to exercise through the pain, I wish I'd listened to the pain instead!) and thought now I was much more sedentary I would never manage it again and I was doomed (hyperbole much?) to a life in plus size clothes but it's actually gone really well. Do you mind me asking how old you are? I am 39. I've had pain in my spine since I was in my teens but debilitating since I was about 27.

[flow4]

Yes, I know losing weight will help. I did it before - losing about 15-20kg and dropping from size 22 to 14-16 about 5 years ago... But that was mostly through exercise, and I just don't know how to do it when I can barely move. My metabolism has slowed right down too, which is part of the syndrome and obv doesn't help.

I didn't have varicose veins til a couple of years ago... That's when I started developing symptoms other than simple 'bendiness'...

[LostInWales]

That is genius Luis, what a great idea. I was really good last night and instead of trying to fight the odd sensation and ignore, which you know we can't in the long run, I got straight up and had a quick paddle in the bath then jumped back into bed with soggy feet and left them out from under the duvet. It worked a treat, I might have woken up a few times but instead of spending an age getting frustrated and wound up I sorted it and got back to bed, I've been on an anti-depressant (it's been a pretty crappy year all round, RA isn't even at the top on my list of 'things which are really shit' at the moment ) but I noticed a side effect was restless legs so I am slowly weaning myself off them. Hopefully between that and the iron and checking my magnesium levels at clinic in 2 weeks I should be able to get rid.

I'm not on anti TNF, I'm only on pain killers at the moment because my thoracic spine looks like someones with ankylosing spondylitis so that's been a bit of a red herring trying to find out what is causing that and how to stop the pain. It was only the bone scan (for my SI joints which are nuclear painful) that threw up the arthritis everywhere else. I wanted to run into the GP's with the report going 'SEE, see, I told you everywhere hurt' .

That's really interesting Flow, I will mention it when I see them. DS1 is very hyper mobile so I do wonder. I have never had a varicose vein in my life though and that's through three pregnancies (with giant babies) or anything like a hernia. I don't think I've even twisted an ankle or anything that would lead me to worry about ligaments. It must be so horrible for you. Start doing gentle exercise though, if you can lose a few kilos it will make a huge difference to how you feel about yourself which is a great painkiller! (I'm a bit evangelical as I've lost 3 stone this year and I get such a buzz from looking a bit nicer and my ankles are just so much happier too.)

[LuisSuarezTeeth]

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

Are you on anti TNF?

[flow4]

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.

[LostInWales]

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 . 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 .

[LuisSuarezTeeth]

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

[LostInWales]

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 . I bet DN was well chuffed. I was a teenager 25 years ago . Now I'm already arthritic and deaf, what a catch .

[MildlyMiserable]

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!