I posted a question a few days back extolling the virtues of Naproxen & asking about its downside. I'm still feeling relatively perky though not nearly as energetic as I did that one fine day. I've kind of settled down with it now & am realising that the main thing it provides is pain relief.
Thing is, I didn't really think that I was in too much pain until the Naproxen took it away. I was probably acting as if I was in chronic pain - feeling low, retreating into my shell at times - but I told myself it wasn't too bad. The degree of relief I'm feeling now suggests that it was, if that makes any sense. I'm not surprised I had a manically energetic day because for the first time in weeks my energy wasn't sapped by pain and I'd had uninterrupted sleep, too.
You'd think it would be an easy thing to know how much pain you are in but I find it quite difficult to know when enough is enough & what to do about it. I've been so lucky, never had any other long-term illnesses & very rarely taken anything stronger than a single Ibuprofen tablet. So pain relief is a new area to learn about. I think I've also had the idea lurking at the back of my mind that anything strong enough to take away chronic pain would also make me woozy, fuzzy & incapable of operating that essential heavy machinery.
Hi Christina glad to hear that you are feeling better on the Naproxen, I find that the chronic pain we have been living with for some time is a great factor in contributing towards the fatigue and lack of sleep it sort of creeps up on you surreptitiously and causes a gradual increase in problems which you dont realise until they all seem to come together and wham you are floored. It is really good when you have a day when you feel you have got all your energy back isnt it? the hard thing is not to overdo it and suffer the fall from this exalted state and end up back in limbo again. It must feel good to have some continued relief from the problems of RA. Long may it continue
Yep, the pain is insidious. I find it easy to hold my head high when I'm limping, stumbling, struggling to sit down or get out of a chair in public places but fatigue & pain make me feel shamefaced somehow. Makes no sense! (I've got PsA, incidentally, but this site is so good). But yes, it is SO nice to be almost completely pain free at the moment. Hope that's soon the case for you too.
I think we must be twins - same age, same kind of thinking.
For years I put up with pain and only took minimal amounts of pain killers, and wouldn't take anti-inflammatories regularly. Pain makes me grumpy, depressed, irritable, short-tempered and all that, but I never used to notice that I was actually in bad pain. Then I had two not so bad years where I took diclofenac at full dose regularly and it hit my inflammation so well, that I was a different person and could even go back to work (after several years off sick).
Then I stopped being able to take NSAIDs at all (stomach issues) and went back into the chronic pain, irritable, grumpy person. Not that long ago I decided to bite the bullet and just start taking strong pain meds regularly. I hate that I'm dependent on them and at the moment can't get given anything that deals with the underlying inflammation problem, but actually I'm a lot better person, and a lot more productive if I hit the pain meds hard and regularly. Yep, I love my codeine right now, and really wish I was still able to take the NSAIDs.
Now to find a rheumatologist who will actually offer me an anti-inflammatory treatment that works so I'm not in so much pain, and don't have to take so much codeine.
I wonder how many other people find the word 'pain' more difficult to define than they think it should be? I'm glad I'm not the only one!
I put it down partly to having being a very isolated (quite happily so, in some ways) only child for the first 7 years of my life - some concepts seemed to pass me by. I can remember twigging that the disgruntled feeling I'd being having on a long car journey was actually a stomach ache once an adult carefully described what one felt like to me.
But that's probably a load of baloney - there must be so many reasons for not recognising pain including denial, fear, pride & all sorts.
How are you going to find this Rheumatologist? That sounds to me as if it is very, very important. I'm under no illusions about Naproxen - hopefully I'll be fine with it for ages, but I imagine that the more drugs you take, the more the stomach especially becomes sensitive. And I have some reservations about MTX & PsA so the quest continues for me too. Glad that you have some answers to pain at the moment, though and are productive - (what's that like??!)
As with many strong meds like Naproxen they all have their side effects, are you also taking something like Omeprazole which protects the stomach, usually they are prescribed together.I have had pain probs for years took Diclifenic etc, Had to stop that, owing to Heart prob, Doc said I had to come off HRT,which then caused the pain in my hands and feet to become alot worse after stopping taking them. After about three months i asked to go back on them and my doctor reluctantly agreed. They really do take my pain down Been on them now for years and I really think they are marvellous.Started with these during my menopause and am still on them. Pat
Thanks for checking Pat, I am on Omeprazole though I had to ask for it. So HRT can help with pain? That kind of suggests that the menopause might make any kind of pain worse, doesn't it? After 3 days without pain I've just been yelping again with the odd stab & twinge - damn! But I'm not going to put up with it unless I absolutely have to & if it carries on I'll be pushing for something else to help me when I see my Rheumy next week.
I find that pain isn't just one thing...some types of pain have me whimpering in a corner and others I can deal with. Often it seems to come down to where it is as I find pain in feet and hands much more bearable than headaches. Recently I was asked how I was, and automatically said "fine", but then when I thought about it I realised that I had all sorts of aches and twinges, and throbbing feet etc. And it's not that I'm stoical, as proven by my inability to stick sharp objects into myself... Think you do sort of get used to it?
The hormones in HRT are very similar chemicals to steroids, don't do the same thing of course, but are closely related so it does make sense to me that there could be some link. After all, why do so many more women get RA than men, and often around menopausal age?? I know that the medical world doesn't really sign 'up to this as a theory, but it makes sense to me. And lots of women get aches and pains around menopause, which are generally dismissed by doctors but who knows how many cases of mild RA are undiagnosed? Polly
I find pain in my bones and at the edges, kind of thing, easier to take than pain in my torso or head. Pain in soft tissues and organs is more frightening somehow, which makes it worse.
The menopause connection is so interesting. My Rheumy thinks I've had PsA most of my life - I've had a few, brief episodes of swelling & stiffness starting at 16 - and if that's true then my body managed to keep it to a minimum until the menopause when it hit me like a steam train.
The symptoms I thought were due to the menopause now do seem to belong to inflammatory arthritis so for me, in a sense, inflammatory arthritis is the menopause in that it is the only menopause symptom I've ever had.
I really agree polly. About how some pains worse than others I think pain in heads worse than in extremities. And you get used to pain too if it can be dismissed to background
I like the thought of 'dismissed'! Will work on that!
Hi All - sitting on my host's patio in 20 degrees and suddenly find I have wifi in this exact spot only so am siezing the moment while listening to the church bells of many limitless mountain villages and hamlets - what a treat! I got rather burnt yesterday despite suncream factor 30 and a wide brimmed hat. Also seem to have picked up a horrible sore throat of the type leads to hefty cold and remembering my uncle streaming last weekend in Edinburgh with some bitterness!
I too find Naproxen always hits the spot to the point where a full 2 or 3 dose can bring down a flare - but heck it blocks me up so I only take it on an as and when basis.
I am really fascinated by this discussion re pain and how we perceive it. I think I've got an extremely high pain threshold until I get toothache or a bad headache and then I decide that its actually extremely low. As Polly says - some pain I can really muster while other stuff, close to my brain, floors me.
I'd better go and swamp myself with sun cream, hat and scarf while the day is still young - it reached 28 yesterday and is set for 30 today my host tells me. We have old art school friends staying from Bologna for one night only and we had a very late night with much alcholol and danced to naff 70s music to my son and their daughter's great amusement. Our visiting Italian friend did full John Travalta moves across our resident friend and host's little living room floor! I have no pain at all but finding it hard to remember to take all my drugs. Everytime I recall one and stealthily bring it out someone in assembled company asks me to take a look at their hand, knee or toes and tell them what this is?! Hey if I've unwittingly become a quack rheumy I feel I should qualify for rheumy rates? Or perhaps offer them some ant malarial hair bleach (hydroxy) or a nice little jag in their belly to make them feel all better?
Maybe its getting a sore throat on holiday that's twisting me in this way but looking at the view beyond us dispelling all self pity totally!
Booze - yeah I've had a bit - maybe 4 units since we arrived so that is that - no more now for me its a promise. Take care all I'm soaking up a year's worth of sunshine and Vit D fir now
Ps and I've been eating like a horse - dreading those scales!
Tilda x
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Magic! Sounds wonderful Tilda! Hope sore throat gets better but sounds as if it hardly matters.
Ive loved this post, its strikes home apart from the HRT bit. I did once ask a doctor, "HOW do I know if Im worse or not" (because he said come back if it gets worse) The guide he gave me was If I get woken at night by pain, then its bad. I thought this was normal because I had been like that for ages. But when things calmed down, nighttimes became better and I can now use ths as a guide.
I kind of get this and anything that acts as a guide with such a slippery subject is a good thing. But my sleep is sometimes so shallow that anything wakes me. I get an ache in my hip that is so low-level that I'm barely aware of it in the day time but it has sometimes woken me at night even though it's still nothing much. Maybe I'm being a bit literal-minded ..... I suppose if you wake suddenly, groggy with sleep & gripped by pain then that is a definite indication that the pain's too much.
This is a fascinating subject. I guess that the fact that the perception of pain varies so much from person to person is an indication that we can find ways to adapt to and alter our experience of our own pain.
As you commented earlier Christina, pain related to RA seems to creep up on us and we subsequently incorporate it into our schema of how our bodies should work. I feel sure that if we were to suddenly wake up from being pain free to the amount of pain we have absorbed and taken as 'normal' over the years, our perceptions would be very different and we'd be phoning for an ambulance.
I agree totally that our awareness of pain is often highlighted by the absence of it. A couple of days pain free is like having the shackles removed.
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Generally speaking I know I've not experienced the levels of pain that so many people here have to cope with. I think perceptions do change once you know what is wrong with you, though. When I first got ill back in April my OH did want to phone an ambulance but we didn't know what was going on then. If I had the same sort of pain again I suppose we wouldn't think like that because this is known to be a painful disease.
That could mean, however, that we are sometimes more stoical than we need to be?? Like I say, I'm more interested in drugs than I used to be - what else is out there? (Preferably something that doesn't have the same effect as eating cement!)
I am lucky enough to be almost entirely pain free these days but sometimes there is ache and soreness and often stiffness - especially in the mornings. This is certainly not what I would describe as pain though.
When you say this about being woken in the night - this was how my RA started and continued for over a year. And there was nothing slow or creeping about it - I would wake up screaming in agony or cry out because a joint had locked and the process of unlocking it was excruciating - a few times I retched or was actually sick with the pain. it felt as if a joint or multiple joints were fractured suddenly out of the blue or even as if I was being tortured.
I assumed this was how RA was for everyone until someone posted on here saying ouch my toes have these sudden spasms of pain that last a few seconds. I commented to him "but isn't this just normal RA - how it is?" And someone replied "oh Tilda?!" And I got all worried that I'd appeared dismissive but I was absolutely genuine. The slow burning stuff didn't start bothering me until after I had been diagnosed and put on MTX. Now I find its a bit like post traumatic stress sometimes and I wake in a sweat thinking its back and my knees or shoulders or a wrist have locked again but the haven't - a fact for which I'm oh so thankful and relieved.
I know how lucky I am now because of experiencing pain in this way. Everything else in between becomes very confusing though - you might think one day "I wish someone could try this on like a shirt"(especially my doctors!)"and tell me where it rates out of zero to ten" but then I suppose they would also have to borrow my brain and my life experience of pain to date wouldn't they?
Great blog subject Christina! I must go inside now - son down in the bar with my friend playing Boche so hubby and I are snatching a rare moment alone and here I am witering while he lights our log fire! Xxx
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Hi Tilda,
I definitely recall the kind of pain you described now, especially during my early stages pre diagnosis and during a flare-up. I can remember not being able to pull my bedcovers up because my hands and wrists hurt so much and my daughter lining up dining chairs between the bedroom and bathroom so that I could bottom shuffle my way to the toilet as I was unable to stand. How did I forget that?
It is good to remember that the meds I take control that kind of shocking flare-up pain and how much I benefit from them.
I do have to say though that it is the constant pulling and silently debilitating pain that seems to exhaust me most.
I'm jealous of the idea of you and your OH sitting around the log fire though - enjoy!
Judy xxx
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I have experienced the 'locking' you describe but over 20 years ago. (I really am coming round to the idea the Rheumy planted in my head that I've had PsA for yonks - not that it makes any difference).
A friend who was staying heard me yelling in the middle of the night & tried easing my knee straight. That was definitely Spanish Inquisition stuff - I saw stars & hoped I would pass out but didn't, waves of nausea & just stuck with my knee bent for ages. Although that was the worst pain wise, the same thing was happening a lot at the time but never since then.
But I could walk, I had energy & could do stuff, I didn't feel like I was constantly sickening for something - and I think that 'systemic' yukkiness, stiffness and low-level pain etc. are also torture in their way, it just takes longer to get a confession.
Thanks Judy. That's reminded me to read your blog I spotted! Might have to be tomorrow though - have just swallowed loads of meds to try and sort out sore throat - eczema on back and sun induced itchy rash on face with combi of antihistamine and paracetamol! Thankful for my med packed luggage now - everyone has consumed all my paracetamol in my handbag for their hangovers! The log fire is lovely but having no hot water is not as cold showers aren't much fun - hope the plumber arrives tomorrow. I agree reminding myself of the inability to lift the duvet or sleep the night through without screaming into pillow with pain is quite sobering and makes me stare at my metject with ever increasing respect. I do hope the slow grinding stuff continues to pass me by. TTx
hazard sorry! And also hope your slow grinders give you a break very soon and that naproxen continues to work well for you Christina. Xxx
Holiday sounds amazing tilda. Hope your sore throat vanishes and you can really enjoy the rest. X. Really good blog Christina....I have just started Naproxen and it does help but like you was worried I would be sleepy all day. I take omeperazole for tummy. Very interesting subject of menopause and RA. Two years ago I was pre menopausal and could hardly move ,all came at once. I am 50 ,bathed in hot sweats,over weight and all the joys that go with both things......really makes you wonder!!_ take care all x
So, so, so many of us here are women at that stage of life. You know I used to have a few little prejudices about 'middle-aged' women & did not want to be one. Stupid I know, but I bet I'm not the only one! But now I have real respect for other women of my age - that sounds so corny! - we really put up with so much and are still some of the funniest, cleverest, nicest people going, at least if this site is anything to go by.
Yes menopause and RA rolled in together for me too. On the plus side I've had no classic meno symptoms and a lifetime of horrible eczema has disappeared.
Only one really annoying thing has happened since arriving(apart from broken hot water tank and a swimming pool turned off - now cleaned and filter back on after many pointed attempts at cleaning it ourselves!). I have discovered, rather too late, that I do still have a severe allergy to feather pillows and duvets etc and this rustic time warp house has only these so I had to stuff my few warm Scottish articles of clothing inside the pillow cases. I'm now tight skinned, itchy and red with little bumps and scratches and am coated in suncream, sun hat, hydrocortisone and swallowing antihistamines like there's no tomorrow.
Plus something's bitten me on the left forefinger and its turned into a cherry coloured itchy blister. Why am I so reactive in hot countries always?! And we found 3 dead hornets and a tiny mouse running round in our room last night. There are these gorgeous grapes on the verandah which we can't go near as the hornets guard them fiercely! OH was stung by a wasp on back of neck and still has a swollen lump two days later so we are both feeling very ginger about the insects!! Otherwise loving every moment. TT xx
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My envy has abated slightly!
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Erm....Where are you again? I'd like to avoid it if I can. x
Yeah too right! But our landlord who lives adjoining has just produced 2 foam pillows for me. Rather embarassing really because his young Italian boyfriend went bounding up into the loft in effort to sort out the hot water and exclaimed loudly when he saw all the feather bedding piled up everywhere. They are now both tut tutting at my failure to speak of feather allergy and somehow managing to make me appologise?!
I had posted (and lost) that I think inflam arthritis pain has strong connections with the different kinds of bereavement. Sudden death of loved ones (my own experiences to date by and large) versus protracted death full of suffering. Both have their own dreadful consequences but viewed from the perspective of the recently bereaved the alternative always seems preferable of course. I have always had chronic eczema until meno so a lot of relentless pain leading to hospital stays with blood poinsing on a few occasions and steroids etc. So personally I found the sudden onset pain of RA bewildering and traumatatic, whereas am used to slow, grinding stuff having had it T&Ps degree all my life. In fact it came as a shock to realise that the flu like stuff plus icy fingers and fatigue was actually an RA flare as GP explained it! But people are so much more sympathetic to the obvious extreme stuff as its easier for them (including doctors) to get their heads round too. So half the battle we have is to convey and educate people about the systemic nature of inflammatory arthritis I think - which I agree makes the slow burning stuff the most depressing aspect. Tilda x
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