Cytokines, exciting things!

Posted on by SingleRheum

The lovely Lene Anderson (author of the amazing book Your Life with Rheumatoid Arthritis), shared a link today to an article from The Rheumatologist, entitled “EULAR 2015: The Biology of Fatigue”

EULAR 2015 is the annual congress of the European League Against Rheumatism (EULAR)

My first thought was wow, fatigue has biology? From my own experience and from speaking with other RA patients across 3 continents fatigue seems to be almost the phantom symptom.  We all as patients know it exists, we feel it’s debilitating effects, some of us daily.  But it’s not really talked about, it’s almost like it’s RA’s dirty secret, the unsavoury cousin no one invites to the party. 

Look at diagnostic criteria, posters covering symptoms, medical reports on clinical assessment.  They talk about joint damage, inflammation, morning stiffness, they mention lungs, heart, eyes and blood vessels.  And they might mention feeling ‘tired’. 

The difference between feeling tired and feeling fatigued is enormous.  In  simplistic terms, if you sleep, tiredness is cured.  Fatigue is a thief that steals, hours, days, motivation, energy, and can quite literally leave you unable to move.  It is not affected by sleep, the two have no connection. 

So, back to this article.  Fatigue has a biology! I’ve gotten used over the past few months to reading ‘medicalese’ and I’ve linked to the article in full if you’d like to read it.  But the sentence that has me excited (geek alert!) is this one…

“Roald Omdal, MD, professor of medicine at the University of Bergen in Norway, said studies have shown that there is a biological basis for fatigue, that fatigue is gene regulated and that there may be several pathways that bring about fatigue in patients.”

Oh and this one….

“In my opinion, interleukin 1 beta signaling is the fatigue cytokine,” he said. “There is convincing evidence from animal studies—and also, lately, in humans—that this plays an important role.”

Now I don’t pretend for a minute to understand the science behind this.  I know that cytokines are small proteins that affect the behaviour of cells, and are involved in RA inflammation.  The hows and whys are beyond me,  I’ve never been accused of being a scientific mind!

What I do know is this, that once the cytokine that causes fatigue can be definitively identified, research can continue to the next logical step of trying to find a ‘fix’.  Anything that brings us one step closer to being able to treat what many,  and certainly I, describe as the most debilitating symptom of Rheumatoid Disease is a reason for this girl to smile today!

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Breaking up with my Rheumy

Posted on by SingleRheum

I cannot begin to describe how angry I was yesterday.  I feel completely ignored and abandoned by my rheumy.  To cut a long and very unsettling appointment short, she basically told me my joint pain isn’t RA any more because that’s “under control”.  I must be having “phantom pain”.  Yep, those were her exact words. 

When I dared to say I wasn’t happy with that her response was “well what do you want me to do?”. 

Of course now I’m not in the moment I can think of a million things I want her to do.  I want her to listen to my symptoms instead of staring at her file.  I want her to accept that the fact the Depo-medrone shot didn’t give me any relief this time doesn’t mean I’m not suffering from joint pain and inflammation, it doesn’t work for everyone! I want her to actually make eye contact. I want her to care how I feel. 

I want to know why she’s only offered me mono-therapy when NICE guidelines dictate combination therapy.  I want her to realise that just because my hands don’t look inflamed today doesn’t mean they haven’t been and that they won’t tomorrow.  I want her to know that I cannot walk or eat or sleep without pain, and that the fatigue is constantly dragging me under.

But most of all I want her as a medical professional to show some f*cking empathy.  I ended up in floods of tears because of her manner and she took that as a chance to check her mobile phone!!! (I’m not exaggerating).

She was brusque, dismissive,  and frankly rude.  I have never met such a cold, unfeeling inhuman response from a medical practitioner in my life, and I will never set foot back in her office. 

The nurse could see how upset I was when I left and she took me to one side and admitted Dr X can be “very clinical”, and advised that my best next step was to see my GP and get a new referral. 

I have had a long think and I will be writing a letter of complaint to the hospital, detailing the full appointment and how it made me feel.  I will also be requesting a new referral from my GP. 

I feel incredibly let down.  I have tried to tell Dr X at every one of our appointments that my symptoms are not easing, but apparently they are irrelevant. 

I am just praying that my next rheumatologist is a human being.  Not much to ask huh?

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Failure is a State of Mind

Posted on by SingleRheum

I’ve just been scrolling through one of the Rheumatoid Arthritis forums,  and I stopped to very gently comment and support a fellow poster because she felt she was a failure.  Her exact words were “since I’ve failed Humira and Enbrel and methotrexate..”

Of course she isn’t a failure.  It is no more her fault that those drugs didn’t work than it would be the engines fault for not working because the wrong type of fuel was used. 

I then realised that I’d said in my last blog that I felt like I’d failed.  Hmmmm! It’s a fascinating choice of word to use, and I suspect both this lady and I did it completely subconsciously. 

I just checked the Oxford English (my go to for definitions),  and it says “Lack of success”,  “the action or state of not functioning” or “A lack or deficiency of a desirable quality”.  It is clear that none of these apply to us personally, either to her or me.  It could be said that the drugs she has been given failed, that would be fair, but in no way that she had.

In my case I used the term in my last blog, Fighting the Thief that is RA, to describe how I felt I’d failed at losing my home through/to this illness.  A follower very kindly immediately commented that I hadn’t failed, but it took me a little thought to agree.

In very brief terms I started feeling ill last September, obvious symptoms started in November, I was diagnosed in early March and haven’t been well enough to work since the end of March.  This unfortunately meant no income, without income I can’t pay rent.  So what in that makes me think I’ve failed?

I’ve given this some thought today, and, rightly or wrongly, for me I think it comes down to self worth and perception.  I’ve worked hard all my life, I enjoy nice things, I’m in my 40’s and I feel that invisible societal pressure to live a certain way.  To have the house and the job and the car etc.  I’ve certainly identified very clearly with my work persona,  and measured myself against that identity. 

I’m currently signed off sick, so that has been lost to me, albeit hopefully temporarily.  The rest is ‘vanishing’ on Monday when I leave my house for emergency accommodation (and my stuff disappears into storage), of course I feel like a failure.  But on reflection that says far more about my values, and perhaps opens a window I’m not that keen to look through.  I don’t think I’m shallow, and I would certainly never judge anyone I know by income or status symbols, so why am I so hard on myself?

Why are we all so hard on ourselves? I don’t have the answer, perhaps psychology does.  I do know that in general we prop friends up but knock ourselves down, and that’s not helpful or healthy.  So I’ve made a promise to myself as I’ve written this tonight, simply to try to be as kind to myself as I would be to others.  I sincerely hope you feel able to do the same.

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What do you need to know?

Posted on by SingleRheum

Over the course of Arthritis Awareness Month I’ve read a number of really good lists, 10 things I wish I knew about RA, 15 things you shouldn’t do with RA etc. And I got to thinking today, if I could send one out to everyone I know, what would my list contain? What would I want those who know me and love me to know about me & my RA?

I don’t pretend or claim to speak for anyone else with RA or any other chronic illness, this is very much my list based on my experience. That doesn’t mean of course it’s not shared! What would you add?

1. I didn’t choose this, it’s happening to me.  I will do everything I can in conjunction with my medical team to live as well as I can.  But living with this is my only option, there is no cure. 

2. Talking of cures… Whilst I know your intentions are really good, please keep your suggestions regarding treatments to yourself.  Believe me I have researched this to hell and back,  it’s how I deal with stuff.  I need to know it inside out and plan my attack.  And if I, my rheumatologist, my GP,  my OT and my HCA haven’t discussed it, it’s because it’s NOT beneficial.  So please keep your wheat free/organic/juice/faith healing stuff to yourself.  I ask this with love, thank you very kindly.

3. I am not lazy.  I am not ‘giving in’.  I find the fatigue the most debilitating aspect of RA.  I’m either asleep, trying to sleep and failing or wanting to sleep, it just never ends.  I can sleep for 2 hours or 20, I feel no better.  If I’m lucky I get 2 to 5 hours on a good day when I can be up and about,  but slowly.  I have at least two days a week when I cannot get up because I am simply too exhausted.  It’s a physical weight that never leaves me. 
It’s not a case of mind over matter, or giving in or pushing through, I literally cannot stand. 
All the usual bloods have been run, tests done etc.  Both my GP and my rheumy agree it a known and classic symptom of RA, and the hope is if they ever get my damned disease under control it will lessen.  Maybe. 
I feel like I’m losing a chunk of my life to this at the moment, if I want to do anything it’s planned between 1pm and 5pm which are generally my best hours. 
I’ve even had to cancel doctors appts last minute because I can wake up in a morning and know immediately my tank is empty, I’m going nowhere. 

4. I am in pain every minute of every day.  There is no let up, no respite.  Whether you see me huddled on my sofa at home or out with friends laughing, I am in pain.  Doctors like a 1 to 10 scale.  It’s not ideal but to give you an idea 1 would be a graze, maybe 3 a sprained ankle,  5 a small bone breaking, 7 a bad tooth access, 10 involves vomiting and/or passing out. We tend not to use 10. I am never below a 4. I am daily up to a 7. I hit 9 once last week for a couple of hours.  Don’t ever mistake me smiling for being pain free. 

5. I need your company! The easiest thing in the world for me to do is stay at home.  I have meds, heating pads, comfy cushions etc.  I know going out hurts.  Some days I can manage it and others I just can’t, so I’m not very reliable, but please keep asking! I want to come, I want to see you! Feel free to drop in to me unannounced.  I don’t care if you wake me, conversation and laughter make me feel far better than sleep does.  You may just have to put up with me looking like the bride of frankenstein but I’m worth it!

6. I have reached out online and found some of the best support in the world.  You have to be sensible, you have to be selective and you need to avoid groups where negativity thrives, but there are some amazing fellow patients out there, and boy do they know stuff! I’ve learnt way more from my online RA family than from any medical professional.  I am in regular contact with lovely people who are paid to advocate for RA, I’m in touch with writers who have written fabulous RA books and blogs and I love them to pieces for touching my life. The Internet is an amazing thing. 

7. Particularly at the moment as I am still coming to terms with my diagnosis I feel angry.  I have why me moments.  Hell, I have why me days.  I feel robbed of things I have always taken for granted, like energy and the ability to earn a living.  Or cutting up my own dinner.  Simple things that we think so little of, yet the impact they have on our lives is huge.  I have accepted that acceptance will take time.  It’s OK to be angry at this disease, as long as I’m not angry at me.  Back to point 1, I didn’t choose this. 

8. Depression and chronic illness pretty much go hand in hand for over 35% of patients.  It’s hardly surprising, a chronic illness diagnosis pretty much sucks.  There may be better days, but there is no cure.  I have support with this too.

9. I live daily with a bubbling fear in the background about the future.  We know RA increases morbidity.  We know RA can shorten lives.  RA, and the meds that go along with treating it all bring their own games to the party.  Baldness, moodiness, gaining weight,  nausea, dry skin and lymphoma anyone? Or shall we just not and wait for the wheelchair? These are the decisions every RA patient makes every time we start a new med.  The next one I’ve been offered increases the lymphoma risk and adds in the chance of retinal and corneal changes affecting vision.  It’s that or guaranteed continued joint damage.  I will generally err on the side of taking the med, weighing the odds and hoping for it to work and for the the side effects to be rare and small.  But they are there in the back of my mind all the same. 

10. Lastly but not least, if you ask how I’m doing make sure you mean it.  I don’t mean the usual “Hi, how are you?” if we pass in the street, I’m perfectly OK with answering “surviving thanks” and moving on.  Alternatively I don’t mind if you don’t ask, the last thing I want is to become a complete bore on cytokines and the latest biologics . 
But if we sit down together and you ask me, I will tell you, in detail.  Just be prepared 🙂

Bonus 11. Please don’t take this as a doom and gloom list, it certainly isn’t meant that way.  My rheumatologist could find the right drug combination for me at any time, there are a number of different treatments to try, and I will hopefully get my energy and mobility back to something approaching normal.  I still have my amazing family and friends, and even on my worst days I would rather be alive with all the potential that offers for joy and love and light and enjoyment in the smallest of moments. I still honestly feel am blessed. 

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The Black Dog & RA

Posted on by SingleRheum

Depression. Even the word is dark.  For me it conjours up images of rain and grey skies, stormy seas and windswept moorlands, barren landscapes with stunted trees. 

If only depression was that simple, had that Heathcliffian black and white glamour.  In reality it’s days of deliberate isolation, it’s curling up because you want the world to go away.  It’s knowing if one more person asks how you are you’re going to start screaming and never stop  so it’s better to turn off the phone. 

There are no definitive numbers available, but it’s thought that around 30% of people with RA suffer from depression.  Cause and effect? Who knows.  There is a new school of thought suggesting inflammation may be linked with depression, it’s certainly linked to RA. 

It’s pretty obvious that combining a life changing diagnosis of RA with days of fatigue and constant pain are a trigger for low mood.  Then you hit the old catch 22, studies have shown that people suffering from depression feel pain more.  And so it goes round. 

Sometimes the cause is irrelevant, the why is unimportant.  It’s the living with that we need to focus on.  ‘Why’ will drive you mad.  Those of us with chronic illness do not need an extra why. 

Writing about depression is hard.  I find writing about my RA fairly easy, it’s almost factual, it’s symptoms and pain and drugs and impacts… Whilst obviously personal it doesn’t feel revealing.

Depression feels more like I’m opening a window instead of talking about the facade of the house.

I wanted to touch on this because it’s been a difficult road for me the past few weeks, yet I’ve never been alone.  Thanks to some amazing people I’ve met online, that I now think of as my RA family, we have shared. 

We have shared in the small hours when the pain is visceral and all encompassing.

We have shared the lows of losing activities, friends, relationships and whole careers to this damned disease. 

We have shared the need to sometimes tune out of the world for a time, because one more thing that demands energy will just be too much. 

I’m taking anti depressants, my GP is very supportive.  Nearly every RA sufferer I’ve gotten to know well online is on them too.  I think they are a necessary and vital part of our support system, we have to look at our health holistically, we are in this for the long haul.  Most importantly we should not be ashamed.

I think it’s starting to be recognised by the medical profession, my rheumatologist has a direct referral link to a psychologist to help people deal with diagnosis,  I was offered this last week and accepted with open arms, I see this support as being as important as any other they offer me. 

To anyone who stumbles across this post who even thinks they may be depressed, please reach out.  GP, rheumatologist, nurse, samaritans – there is always someone there, and thankfully these days the stigma surrounding mental illness has diminished dramatically – to the extent I am not ashamed to say I suffer with depression. 

If you’ve not come across the black dog from the WHO on you tube I’ve posted a link here, it’s a useful way of explaining how depression feels. 

Ask & you will receive?!

Posted on by SingleRheum

I may have mentioned before I’m ridiculously independent, sometimes almost stubbornly so.  It would suprise those who don’t know me very well to know that I’m am introvert, because I am perfectly capable of mixing with people I know and enjoying it.

However it has to be balanced with time on my own.  Quite a lot of it.  Even as a child I would distance myself,  finding a quiet corner with a book for cover and taking time to just be.  I’m genuinely happy with my own company, and I feel sympathy for people who aren’t, I can’t imagine always feeling a need to be surrounded by others. 

However this does not mean I don’t enjoy company, and I’m lucky to have a very special and varied group of close girlfriends, and a wider but just as lovely group of social friends. 

I have found myself in the position very recently of starting to need to ask for help, and boy does that grate! But I simply cannot pretend any longer to myself that I can do stuff – I can’t!

To my immense delight and true gratitude I have found when I ask people come through.  They really do. 

A call out on Facebook this week resulted in an old friend I hadn’t seen in 7 or 8 years dropping round within 2 hours to shift a load of boxes for me.  I paid him with a hug.  Seriously, how simply amazing is that?

I have also had boxes dropped off and meals brought round, and I know when I move house in four weeks the help I need will be there.  If there’s one thing RA has done for me in the last few weeks it’s made me truly appreciate the people around me, my support network, my friends.

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Out of Sorts, Out of Spoons

Posted on by SingleRheum

I don’t know where to start this evening, I just feel a need to write. A lovely old fashioned expression comes to mind, “I’m feeling out of sorts”.  It just seems to fit.  I feel restless and fidgety and fed up and exhausted all at once.  Plus it’s 3am.  3am is always introspective time, ask anyone who doesn’t sleep well!

If I lay it out the last two months look like this – Rheumatoid Disease diagnosis, chemotherapy drugs & steroids, chronic fatigue, pain & inflammation, painsomnia,  too ill to work, no income, depression & anxiety recurring.  Add in homeless in 5 weeks and that about covers it. 

I guess if there’s a time in my life to feel out of sorts now is it.  The biggest frustration is I’m a fighter, always have been, I fix things.  And I just don’t have the energy.  I spent yesterday packing up boxes ready to move at a very slow and steady pace.  Then I lost 80% of today to sleep because I was so exhausted.  That’s what this does,  and it’s the hardest part of this illness for me to accept. 

I totally understand the spoon theory, I have a limited amount of energy per day, and once I use it it’s gone.  Period.  If I push myself I steal spoons from the next day. 

I’m just finding it really difficult to accept how low my daily ration of spoons is, and how quickly they become used.  I packed 7 boxes of books (yes I have a lot, no I can’t get rid of them!).  That would have been an hours work last time I moved, instead it took me 5 hours with breaks.  And it seems that was still too much. 

I commented as part of a discussion recently that the existing spoon theory felt right to me, but the energy used for tasks felt wrong,  for example a days work as 3 spoons and prepping a meal as 2 spoons – this doesn’t equate for me at all.  Someone suggested I write up my own spoon chart, perhaps I should make that my task for tomorrow.  Along with maybe 3 boxes of packing!

I think more importantly tomorrow I need to use some time to work out three things.  What needs doing, what I can realistically do by myself and what I will need help with.  I have to start accepting I can’t do it on my own, and that means asking for help, bit of an anathema to me!

That more than anything else is probably behind my out of sorts moment, I worry that if I ask too much I will be a nuisance and eventually a burden.  People say “if you need help call me” but do they mean shifting boxes of books from my lounge to my garage? I guess there’s only one way to find out…….

If by any chance you’ve not read the Spoon Theory, the link is below:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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The Tramadol Question

Posted on by SingleRheum

Hurt Blogger asked a question of her Facebook readers today regarding helping doctors to improve their understanding of patients experiencing chronic pain and why patients take opioid relief for chronic pain. 

It did cross my mind that only someone who’s never really needed pain relief could ask the question why!

However (and despite not being in America where things are very different) it is a very relevant question, how to explain it to those who simply don’t have the same reference points?

I have chronic pain from RA.  Because of this and what I’ve learnt over the past few months from fellow sufferers in the US I thank heaven I live in a country where I’m not treated as an addict for legitimately requiring effective pain relief to help me function.  I will state here very clearly I feel that not having access to pain medication seems to be a common reality in the US and one that to me seems totally barbaric. 

Until you’ve lived with chronic pain week  in week out you can have no concept of how physically and psychologically wearing it is. Just how damn tired it makes you. How much you begin to resent your own body, the one thing you can’t run away from. 

Pain that would send a ‘normal’ person to the ER becomes your daily baseline. Your definition of pain changes into something at once more tangible yet harder to explain. Pain becomes your constant companion, your nemesis and your whole reality.  It just is. 

Contrary to what most believe you become more careful about taking pain relief, not less, because of the constant concern that regular use means your body will build up a tolerance and at some point the meds you so desperately need will cease to function.

You wait until your pain becomes ‘really painful’ before reaching for your medication.  You ration your own tablets so only on really bad days you actually take the maximum dose.  You  set yourself mini targets to get through before taking your meds, such as “I’ll just finish the shopping before I take the tablets” in spite of the fact that you’re in bloody agony. 

I have run this past my GP, and she tells me to be kinder to myself, take the tablets, it’s what they’re there for! And part of me knows she’s right, yet still that fear of tolerance lingers, so I wait. 

I am in the wonderful position though, thanks to our NHS, that I can simply ask my GP for a prescription for Tramadol and it’s written.  I suppose if was I using too quickly or something there would be questions, but my GP knows me and knows that I need them.  And for that I am indescribably grateful. 

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I’ll get by with a little help…

Posted on by SingleRheum

I’ve been doing a lot of thinking the last few days, as I’ve reached the point where RA is forcing me to make some big decisions and changes.  I am still nowhere near well enough to be very active or proactive, or at the moment work,  and obviously that has an impact on my days, how I spend my time, my mood, and even more significantly at the moment where I live. 

So, I’ve been (on the instruction of my very wise GP) reaching out over the past few days, actually telling people this is me, I’m not well, and I may need help, both physically and emotionally. 

And Oh my! The response has been amazing.  I have been seriously touched and moved to tears by some of the messages I have had back from my beautiful, generous friends and family.  

Not one hint of censure or criticism, which has very importantly validated what I am doing to try and keep myself as well as possible.  It’s difficult to explain but I know I’m not alone as a chronic illness sufferer in feeling incredibly guilty and yes, embarrassed for not being able to just “get on with it”.  So very soon you start doubting your reasoning and assuming others will think the worst. 

So. Having reached a forced and unexpected fork in my road, I have new terrain to walk. I have downsized my expectations in the same way I’ll be downsizing my belongings, it’s not that I no longer have dreams and goals, they are just becoming different as my priorities shift.  I am starting to make some peace with this. 

But that would not have been possible without knowing my support network is out there holding me up.  I’ve warned my friends I may need to lean and without hesitation they have held out their hands.  I am blessed. 

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