PAIN!!!! (Warning: It's a bit long winded-sorry :-( )

Following on from my trysts with the sofa , cat and pill box the other morning….

The replies on the blog threw up (like me after a night out on the tiles) some very interesting observations and thoughts.

However, firstly, I would like to say the book “The Arthritis Help Book” gets my general approval and was loaned to me by my OT department, to run alongside my “classes” on a Wednesday afternoon, all about Arthritisii ! But this here pain mularky has got me in a tangle….

Right, firstly you have to distinguish between Acute and Chronic – not easy, because you can have recurring acute, and spasmodic chronic which are slight oxymorons, inasmuch as acute you expect to go away on treatment, whereas chronic is associated with long term conditions (which I am sure you are aware of.

Although I have my rheumy nurse and cons telling me that it is no good just using pain killers when you feel the pain because then you never get on top of it, on the other hand the pain management team are trying to tell me it is no use using pain killers with chronic pain because you will never get rid of it, and, more importantly, will only run the risk of the side effects, addiction, dependence or whatever, meaning that you will require ever more stronger painkillers etcetra !!!

SOOO through gentle exercise, relaxation, pacing and only using painkillers on acute pain (like in a flare) one should be able to manage one’s pain. I tend to believe in that to a certain degree.

He explained that if you are experiencing chronic pain, the best thing, aside from all those things above, is to carry on as if you don’t have any pain, but in a more leisurely manner! (he didn’t quite put it like that but that’s what he meant). Sensitised nerves (ones which have been involved in the initial pain signals) react far more easily than non sensitised nerves so that pain can be completely out of proportion to the stimulus, and more pain is felt than is actually necessary.

(You following this)

Right then next bit –

The brain turns messages from sensitised nerves (from the damage/stimulus) into the pain we feel. Nerves from the brain can increase and decrease sensitivity of areas in the spinal cord. This means processes in the brain (for example, thoughts, feelings, past experience, attitude) can influence pain.

The brain is therefore capable of increasing or decreasing pain by regulating the sensitivity.

The above is not fantasy it is a medical and proven fact.

Soooo managing pain means not only regulating your activity, but also your thoughts and emotional reactions to it.

So you need a baseline (which will be different for different activities). This will be the level at which you won’t flare up your pain but will be enough to feel some discomfort. I.e. PACING! – Yep that old chestnut.

My problem is – if you think about it, everything is going to take so much time to “set up” because, you are limited in your daily tasks and completely occupied with yourself. It’s going to take forever.

Soooo when my consultant came last week and spoke us about drugs, painkillers etc. He was talking about how they can treat thousands of people with RA with the front line DMARDS quite successfully, who then lead “normal” lives. I thought - aye up how normal is all that pacing and pain management. Because it will be a constant in our lives. All that has to be fitted in between the set backs we have from the days when we have flares (even months). Who the heck is normal with RA – Who is normal, what is normal. For instance are we eskimo normal or united kingdom normal?!!!

Anyways the upshot is. When I get woken up in the middle of the night with a pain, the only thing I want to do is swallow a pill and get back to sleep.

All this is a bit long winded and I am sorry if most of you know all this but sometimes it seems I take one step forward and two back.

I am nursing a frozen shoulder this morning – don’t ask me why – I am not aware of not pacing myself over the last few days, haven’t done anything to upset it. So there. Or perhaps I have overrested myself!

Parting thought from my Pain Management man – Rome wasn’t built in a day – No S””t !

He also said “having a flare up may be painful but does not usually mean there is any further damage”.

I am sure I will get there in the end – wherever that is! Be happy!!!

Julie xxx

[Hidden]

Thanks for your very good blogs on this subject Julie - I find what you are saying about pain fascinating and a good way of staying at the helm than just falling into a pit of despair about it all as I was starting to do a month ago. If only we could hand our pain over to the doctor or our partners, friends etc for an hour or two and they could tell us if they experienced it as pain, and whether it would be intolerable pain to them or hardly anything? But given that we can't I suppose my way of logging it from 1-10 within my own pain threshold (using labour pain, bad toothache, gallstone pain etc as markers too) is also a way of detaching myself from it a little - so trying to become scientific and use self as a guinea pig for research purposes. To my mind writing blogs or using the pain for some other purpose is the closest we can get to ignoring it, as your doc suggests we do, and easier than struggling to carry on "as usual" when it's only ever at 30% of 'normal' capacity for me anyway?

Last night I was listening to a rock band of one of my sons in a pub and was wriggling my hands about because the bass amp seemed to be triggering spasms of pain to run up and down them. The woman sitting beside me, a known alcoholic, but also someone with a son in the same band as mine, asked me why I kept moving my hands - was I in pain? So I briefly explained and she said that she too gets a really bad ache in her hands. She showed me her hands and her pinkies were all curled up, badly misshapen and arthritic. I asked her if she'd shown them to a doctor and she replied that she was too scared so just poured more booze down her to manage the pain.

It made me wonder if I've been exagerating my own hand pain in my head - being a hypochondriac about all this perhaps or am just hyper sensitive to pain I wonder? Because my hands certainly don't look anything like as extreme as hers? And with the possibility of all these drugs, many with horrible side effects, how would it be to just carry on trying to be brave and refuse the drugs if and when they are offered to me? Not planning to turn to booze you understand but I'm just wondering what it would be like if I decide to ignore it all and take nothing as this woman has obviously been doing for years? Mind she did say it was just her hands - she might feel differently if she couldn't walk down stairs?

[Hidden]

there is a study saying moderate!! alcohol consumption can help with athritis pain.. be careful though your meds may say no alcohol!!!

[LavendarLady]

I always find a whisky at night (single malt with a little water) is a great help. If I am in pain, I take pain killers - don't know any other way of dealing with it! If there is another way I would like to know. I have always had a very high pain thresh hold but RA really does take the biscuit when it flares up. I'd love to know Julie what a normal life is. Can you ask your consultant to define it please? I would love to be "normal" again. LavendarLady

[Hidden]

Thanks but not planning to turn to immoderate quantities of booze myself (despite feeling sorely tempted sometimes!) - it's just that everything seems up for question at the moment including whether pain is real or all to do with the way we are feeling, whether it is chronic or acute and how we manage it. I read and am told that if left untreated RA will disable and destroy joints. And during my first and only proper flare to date when the swelling and stiffness were everywhere I knew this was not something I was equipped to deal with - whereas pain without swelling and stiffness (post steroid) seem somehow more manageable through the methods Julie describes - and preferable to the over the counter pain killers I have been offered to date which make little difference anyway.

But I'm just really interested in how people manage pain - especially when I am starting to grasp that the pain itself is not the thing doing the damage with RA. And does it matter whether pain is real or imagined anyway? If it feels real to us then it is real - as is depression and many other things that are in the head. My hubby is a care worker in an old folks home and says that a woman with no legs was complaining to him last night that her feet both felt incredibly sore and she wanted pain relief - and yet she knew logically that this couldn't be the case because they were amputated years ago? But her pain was still very real to her.

[Hidden in reply to Hidden]

This is all so very interesting. I have been on pain killers all day because I have a frozen shoulder. I think it has been triggered by sitting awkwardly whilst I was doing the accounts (kept leaning on that arm to check through the bank statements) and because I have had rotar cuff impingement in this arm previously, how I have used it has reminded the pain pattern what happened before? Not such a daft idea methinks. When taken in the light of what Tilda says about the lady with no legs. Her legs cannot be hurting, she doesn't have any, it must be her brain sending messages via the spinal cord, perhaps because it was "reminded" about her legs by some thought, or other? Does that make sense?

Pain does not equal damage, the inflammation does the damage..... and so it goes....

It takes some absorbing but fascinating. Interestingly the painkillers I have been downing all day haven't touched the pain in my arm?

[Tricia-P in reply to Hidden]

I'm butting in here, Tilda, your thoughts are very true as to pain being subjective, earache springs to mind, or as you said toothache. I at the moment have 4 discs in my spine that have been trown out by synovial fluid getting in the facets. When I turn, move, or even wee, the pain screeches through my lumbar spine down my thighs round the back of my calfs and into my ankles, then it stays there trobbing until the nerve receptors have calmed down, so the theory of acute pain seems true as I can't take a pill for that nausiating screaming agony that happens, however the oramorph then acts on the chronic pain that is left behind in my lumber area and tracks down to my foot. The fact that these sudden shots of pain are more frequent, I wonder if oramorph will even be enough. I have decided though that chronic pain is easier to deal with you can block that sore buzzing note, but when it turns nasty (acute) you can only deal wih the mopping up after.

xTriciax

[Hidden in reply to Tricia-P]

Tricia - according to what you say you have a chronic acute pain. Because there is a reason for you pain, i.e. the mechanical "defect" for want of a better word - to your back, it is in fact an acute pain which can be treated. The fact that it requires surgery and won't go away until you have turns it into chronic acute pain! I told you it was confusing.

Osteo arthritis can be the same, because there is a "reason" for the pain and treatment i.e. painkillers and surgery can put it right.

Chronic pain from RA is the pain that is felt after you have had a flare and there is no longer any inflammation, but you will still get pain. I know I think there should be an o-level in this subject.

The suggestion is that the psyche can produce chronic pain (chronic as in long term) That is why you get tender joints, they are tender because nerves serving that joint are over sensitised and not becaue of the RA?

Is this making sense?

So you should be able to used mind over matter to improve your general well-being. I will send you a copy of my little lealet.

Take care me buddy (that Devonshire for my old beauty) I know how much god awful pain you are in and hopefully it won't be too long before you get it put right.

[Hidden]

Ouch I had similar pain in my shoulder a few weeks ago and then next day pain in elbow the other side and they were most painful days yet.

I'm about to down my first lot of painkillers in a few days now because although I've been holding out on pain relief because it makes so little difference and blocks me up - my hands/ fingers have bee making me feel sick with intense pain for 24 hours now. I just sat through a long night with visiting in-laws massaging them against my warm face and chest and longing to get back home to the pills - downed a few drams while I was waiting to get away too!

Hope you have a better night Julie and shoulder pain dies away very soon indeed. Tilda x

[Hidden in reply to Hidden]

Tilda you are experiencing acute pain from your flare I think? If my understanding is right? Whilst realxation might help, painkillers will be better.

My shoulder was bloody awful last night I couldn't get comfy in bed and over dosed on co-dydramols and ibuprofen. I could have murdered someone at 2 a.m. this morning. Now I have no idea what is causing my pain. I am not in a flare and as far as I know do not have any osteo in this shoulder? I asked the doc and she told me I probably over did it? Yes. So what do I do know. Rest it she says, if it's no better in a few days come back. Arggghhhh ................

[cathie]

Fascinating thanks very much for all thar! But I'm left with a question isn't pain supposed to be a warning? And isn't it dangerous to attribute every pain we get to ra?

[Hidden in reply to cathie]

Yes Cathie, this is part of the problem :-). But I think what is being said is that once your bloods are showing you are not flaring, you should not get any pain from your affected joints (except if they are damaged i suppose). Associated pain in the muslces and tendons are just the aftermath of the flare? Am I getting this right? I will clarify today at my "classes" and see if I get any gold stars!!! It is all fascinating but confusing at the moment for me -

[Tricia-P in reply to Hidden]

Confused I am, as well, I 've just had a call from my wonderful GP, we talked pain management, she has prescribed gabapentin again but in a much lower dose, as it did for me when I tried it a couple of weeks a go. This drug is used mainly for people with epelepsy so it calms the nerve receptors in the brain, so therefore calming the pain we get when a nerve is involved, such as Ulner nerves (elbow) Carpal Tunnel Cwrist) Rotator Cuff (shoulder) it won't stop the ache it will only work on the sudden ouch sensation that whips from the damage site to the brain and return, but it may not take the same route. Take the Ulnar nerve that comes from the neck through the elbow, in to the hand and ring finger and pinkie, that if bumped (funny bone) instead of continued pain in the elbow you may find the couple of fingers will get acute pain, or numbness, pins and needles andthey may start to curl up. So again its finding out that the pain you have somewhere may not be where the problem is. Now I'm very confused. And my ankle hurts.

xTx

[Hidden in reply to Tricia-P]

Hi it's me again. I know it's not very interesting for you, but it will be interesting to know how much pain and stiffness you experience after your op.

Err tell me to shut if you like :-0

[Hidden]

Tricia I too have four discs at last count out of place and there has been a lot of degeneration too so I know your pain.

It always baffles me that they say pain is in your head as I've always been someone who worked through all types of pain and if I really had too I would take paracetomal or Ibupfen. However I was told for years that my hand deformation was rsi my back pain was siatica and knee pains and other joints to be honest I never found them bad enough for long enough to go to the doctors about so maybe some of the fact I was undiagnosed for so many years is my fault.

My ra was only picked up when I was admitted to hospital December 2008 unable to stand walk I didn't even have the strength to lift my head of a pillow all my joints had swelled badly my knees had to be drained twice during my stay.

Since then after three dmards and almost five months in on anti tnfs I am still flaring badly.

I too have frozen shoulder, plantar facias, tendonits due to this flare but to be honest the pain from the costcocondritis and back pain so far outweighs all my other pains its untrue, I've finally had to give in from taking oramorph alone and had to go on the slow realease morphine too. I also take gabapentin.

steroids seen to be the only thing to stop me flaring but only at real high doses.

I have tried every method of pain relief without pills however so far although some things help nothing has eased my pain enough to allow me to stop taking the pain relief. however I won't stop searching for a pill free pain relief.

hope you are feeling better soon Julie and tricia I understand your back pain and how hard it is to cope with at times take care x X

[Hidden in reply to Hidden]

Hi Julie. You see when I read about you obvious pain and difficulties I do wonder then where all this "pain in the brain" is coming from? It is not easy to separate the chronic from the acute and the chronic acute and acute chronis...???

I'm off to lie down, I am exhausted alread today, not had much sleep.

Take care Jules from Jules x

[Hidden]

Sorry to hear about continued pain in your shoulder Julie. Forgive me as I am so new to all this that I am probably hijacking your blog a bit but I am really struggling to know at what point one knows a flare from other stuff going on. I had 80mgs of Kenalog im about 5 weeks back and the pain has appeared to be more acute but mainly in hands ever since. I thought this was manageable so quit taking pain killers apart from the odd few before bedtime to aid sleep. Now I don't know if it's because the steroid is wearing off and not sure if what I'm experiencing heralds a flare or not but my feet are both hot and invisibly swollen - by which I mean my shoes are feeling tight and uncomfortable and my right ankle is downright painful.

But in an effort to overcome my tiredness after only about 3 hours sleep I went down the steep hill on foot to the surgery to collect the print offs of my blood results to take with me for first rheumie appointment early tomorrow. But after this five minute walk downhill I needed to sit down and rest my right foot and went to a cafe for a coffee to look through the blood results. I can't make head or tail of them so wonder if you can help me. Back in April my first ESR reading was 59, then in June I had a no ESR reading but a CRP of 21 while I was on the Sulfasalazine. Then this Monday's ESR result is at 44. Is this high or low I wonder and does it indicate that I am going into a flare or is it quite a normal reading for someone with early stage RA? I will ask consultant tomorrow but have so many questions I don't want to run out of time! I then struggled to get back up the very steep hill home as the pain in ankle was like a fire.

But all this is nothing compared to all of you guys I know with all this disc degeneration and severe shoulder pain. I put on my pain log which runs from 0-10 a 7 or 8 today but think I'll lower it as if i had what you are all suffering from I wouldn't be able to stop at even 10 out of 10 I suspect. But I think it is helping me to at least try and detach and be as scientific as I can muster about pain so thanks again for writing this very interesting blog Julie!

[Hidden]

Tilda - your RA is not under control yet, so you are in a flare (this is what I am supposing from what you say - I am not a medic (I have to say that or I will be in trouble). The aim of the dmards is to reduce the inflammation it does not relieve pain per se. My authority does not "do" ESR but from what I have read on this site, your ESR is showing that the inflammation is responding to treatment and reducing as the rate at which your "sticky" blood cells are dropping (sedimenting) in your blood is slower. So good. In my authority they only use the CRP test and so long as it is below 8.00 is is described as normal. So you have a bit of a way to go on that one - if they do the same scale in your part of the world. (apparently different labs do different scales). I have assumed that the more aggressive your RA the higher your ESR CRP (or in my case PV!) is. I copy below the description of a flare, as given by our blogging friend on here

LynW -

"Each of us will be very used to the aches and pains, the hot, burning joints and the infernal fatigue that can be relentless. The waxing and waning of this disease called RA. Even with controlled disease you never know when it’s going to slap you in the face, knock you for six and stick you back in your bed, stiff and unable to move. Even when we take all our pills and potions according to the strict instructions of the ‘man’ in charge, inject ourselves and attend for regular blood sucking sessions, still we can be floored by the sudden and unexpected impact of a flare. Let’s face it, this disease is unlike any other ... it has a mind of its own!

A mind of its own that we have to learn to understand. One of the first noticeable symptoms of a flare is lethargy; tiredness and difficulty sleeping. This then moves into a phase of generally feeling unwell perhaps with a temperature and non specific aches and pains. Then arrives the acute pain in the joints, swelling, stiffness, the emotional roller coaster and fatigue. Sometimes it is only when we look back at the progression we realise we are in a ‘flare’. Occasionally a flare can hit dramatically with no build up; one day everything is apparently fine, the next it is a struggle just to function!

A flare almost always affects several joints as it is a breakdown of the immune system rather than inflammation of only specific joints. You feel ill, as though perhaps coming down with something like flu, and quite possibly unable to get out of bed! It can last anything from a week or two to months depending on how quickly the disease can be brought under control again. And that must be the aim. Intervention is the only way forward, be it rest or changed medication. Without it we run the risk of ongoing problems or at worst the possibility of joint damage.

With the current treatment methods 'flares' will undoubtedly be become less of a symptom as the disease will, for the main part, be kept under control. However stress, other illnesses, failure of medication can lead to a 'flare'. We all experience the ups and downs of life with RA and that life could never be considered easy. I was always advised to try to get to know my body, not easy when it continually wants to do its own thing, but seemingly necessary to cope with the rigors of this chronic disease."

Sorry this is long winded - but hope of some use..

take care and good luck with your appointment, get those questions asked, stand your ground.... fingers crossed

Julie xx

[Hidden]

Hey thanks Julie. Pain is definitely the order of the day but you are all very brave and inspiring and have had to contend with it all for much longer than I so I'll continue to try and see it as being an interesting area full of creative potential until I just can't stand it any more and have to resort to medication!

I find it difficult to know if the fatigue I feel is down to RA because I've always been a very light sleeper and insomnia is a recurrent problem when anything I have anything worrying or exciting on my mind - particularly hard during the holidays and weekends when 3 teenage sons are coming home very late.

My hubby works nights and can sleep through anything but last night he told me I kept him awake (following a shift heaven forbid!) by thrashing about and sighing. I explained that this was due to ankles and feet throbbing and burning but he just thinks it is the other way round and the pain and swelling is because I'm stressed about teens and the first rheumie consultation tomorrow. Of course he could well be right because, as you have pointed out, pain is often worsened or even the outcome of stress and worry. Also because I've been on a steroid for five weeks the swelling and stiffness has all been held at bay so I think I'm now paying for it by having a flare now. But it's not the overnight type that Lynn describes happening sometimes. It will be ironic if I can't even drive myself to the hospital for the consultation tomorrow won't it?!

Must snooze and rest feet now eyes closing - oh help more teens and party time in our kitchen with lots of giggling from visiting lasses and grunts and showing off from our three lads - which is in turn making our overtired dog bark and dance in circles - so maybe not!?

Tilda

[Hidden]

Hi Julie,

I had to read this through a few times so my pea sized brain could take it in!So, your bit about

''The brain turns messages from sensitised nerves (from the damage/stimulus) into the pain we feel. Nerves from the brain can increase and decrease sensitivity of areas in the spinal cord. This means processes in the brain (for example, thoughts, feelings, past experience, attitude) can influence pain.''

As I mentioned in your previous blog, I tried something called Mickle Therapy for Fybromyalgia, in a roundabout way this uses a very similiar theory, I am so glad you mention it has been proven as I was starting to think it was all in my head!

It has worked for me, not with RA pain as such, it's hard to explain but I remember being at my worst, you know, when you can't move and the pain is shooting through in spasms and realising that some of the pain experienced was similiar to that of fibomyalgia, because I suffered from this years previously I was able to tell which sort of pain belonged to either RA or fybro,

so.............(sorry) I put into practise what I had done to help me with fybro and somehow it really helped.

It is hard for me to explain how to do this and the website would prob explain it better, it's a type of Cognitive behavior therapy and it has made my life so much better. In a way I think it has really helped me come to terms with RA.

If anyones interested I would be more than happy to drone a bit more but it's such a personal subject.

I used to bottle things up so much, leading to horrid anxiety therefore causing emotional pain leading to (as you mentioned above) the brain sending sensitised messages into pain. By following simple steps recommended by my therapist I was able to deal with my emotions better resulting in being free from fybromyalgia pain for years..... then with RA hitting and the anxiety that goes with it it did creep back, but not now, just the RA to deal with!!

Gosh, if your still having sleeping problems I think I may have just managed to send you off!!!! zzzzzzzzzzzz

[Hidden in reply to Hidden]

No No, not at all. I have just been looking at the Mickel Therapy Website. Unfortunately, it looks like you have to sign up to something before you can get any gist on what it is aboutor how to do it.

However, as you say, it sounds very much like the theory being expounded by my authority's Pain Management Service. What you say seems to be correct, emotions and stress certainly affect your pain levels and one's attitude to pain too. I could have just said this in the first place, but I think that over simplifies the theory, although I believe the method is simple! I sound confusing... but I think people understand and follow what I mean.

Sounds like you have proved it works. Now all I want to know is how do you do it, and how do I know what pain is appropriate? Does that make sense? Or is it a case of practising it and it helps what it is supposed to help?

Interestingly enough. - excuse me I am waffling on again - I have just spent the night without painkillers... I think I will blog what happened because this is going on a bit....

Julie xxx