The truth about living with Rheumatoid Arthritis

#alternative treatments

Rheumatoid Arthritis and Reiki

what does a rheumatoid arthritis flare feel like

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I had my first ever Reiki session today. I had no idea what Reiki was all about, but I had heard the term.  As much as I knew is that it’s an alternative healing therapy.  Nothing more.  And I purposefully didn’t research, or google, or ask anyone about Reiki and what they thought.  I wanted to approach it with a completely open mind.

I’m not a cynic, nor even a skeptic, but I am evidence driven.  I don’t just hand over my faith and my money to anyone who says they can cure me.  I almost find the promise of a cure arrogant.  Severe Rheumatoid Arthritis is not a curable condition.

But I have seen many people turned around with diet, lifestyle changes, exercise, supplements, acupuncture…I have tried all of these myself.  Can these all have been ‘mild’ cases, or misdiagnosed?  Hard to believe.

This treatment was offered to me for free, asking nothing in return.  Such is my practitioner’s belief that he can help me.  I get miracle cures offered up to me all the time.  For the very fair price of $49.95, I can be pain free forever.  Yep. Right. Thank you…Delete!  But when someone is offering to help, and asks for nothing in return, I guess the only decent thing to do is accept with gratitude.

So I just had my first session.  A basic run down on Reiki is here.  It’s hard for me to do it justice, there is so much to learn and digest.  And some of it is hard to adopt.

Angelic Reiki, the form that my practitioner practises, is based on the Law of Attraction, that I have heard of to some degree.  In its simplest form, what you put out to the universe, the universe will send back to you.  Postivity begets positivity, negativity begets negativity.  I do subscribe to that idea, to a degree.

Another basic tenet of Reiki is that we are not here to suffer. We are here to be happy, and live a life that is fulfilling and enjoyable.  Very easy to subscribe to that philosophy. In fact much of what we discussed, I agree completely with. I just have a different terminology.

Another central tenet is that the body can heal itself. That all disease is curable.

I have a road block with this.  For the first many years of my disease, I was going to beat it.  I didn’t even accept that I had rheumatoid arthritis.  From the start of this blog, I envisioned the day that I would write that I am cured. I have beaten it.  I have won.

Over the years, my goal changed, and it became to live well, to live happily, in spite of being in pain.  I don’t always achieve that, but it is a philosophy that has served me well.  Most of the time I am happy.  I am always in pain.  I had to find a way for these to co-exist, or live a life of misery.

So now the goal is to visualise myself, not just happy living with pain, but being pain free.  And disease free.  And drug free. That this reality is within my control.

Misinterpreted, this philosophy can be turned to say that it’s our own fault we are sick.  I’m sure we’ve all been told that at some time. By a doctor, by a family member, by a friend.

But this isn’t the way it came across.  It came across as your attitude shapes your reality, including your physical body.  Which I believe…but I believe there are limits.  Reiki would say there are no such limits, and if I accept that there are no limits, my body will be healed.  I’m a long way from there.  I’m very much still focussing on living my life in the best way possible in spite of living with constant pain.

That’s the philosophy.  In practice it works like this:  In Angelic Reiki, your practitioner is a conduit.  He or she will facilitate the healing that the Angels endow.  So you need to have a connection with your practitioner.  The first session is the longest, and is all about building that connection.  You need to talk openly and honestly and establish trust.  Much more quickly that I would in any other setting!  Then the actual healing session takes place.

The room is cleansed, the archangels are present. There are candles and incense and soothing music and an environment of utter peace and calm.  I challenge anyone to not feel happier and less stressed under these conditions.

I was asked to lie on the table and clear my mind.  Focus on the music and whenever my mind wandered to bring it back to the music and empty my thoughts.  My practitioner laid his hands on my upper chest for the ‘soul’ and my abdomen for the ‘self’, and remained that way for the duration of the session. This is how he transmits the healing energy to me.

And here’s the paradox.  I felt such relaxation and tranquillity it was beautiful.  Emotionally I felt lifted, and cleansed.  But in the absence of all other stimuli, my pain levels increased dramatically.  Nothing else to focus on, nothing to take my mind off it.  Not allowed to mentally block the pain.

So while it calmed my mind, and gave me peace, it increased my pain levels exponentially.  Interesting.

I no longer panic when the pain is terrible.

I used to.  Fear makes pain worse.  Telling yourself it’s going to be unbearable absolutely guarantees that it’s going to be unbearable.  This is the Law of Attraction and Reiki, just under a different banner. I’ve always just called it a self- fulfilling prophecy.

So I can ride through the pain, although I wasn’t expecting to feel physically so much worse.

Contrasted with feeling emotionally so much better, it’s an unsettling experience indeed!  Confronting.

The session did unlock many of my core beliefs, and that I do see myself as ill.  If the mind does control the body, which there is much scientific study to support, then I will remain so. I understand this idea.  But I also cannot believe, at this time, that I can heal myself completely with the power of my mind.

But the idea of being cured, being pain free (drugs or no) is too seductive.  It’s what we all desperately want above all else.  Our lives back. To NOT be controlled by pain. TO have choice returned to us. To have freedom.  I admit I went to sleep fantasizing about it last night.

So I have committed to coming weekly for the next four weeks.  And then we’ll assess the treatment, and decide where to go next.  I am very grateful for the opportunity.

Right now I feel very relaxed. The drive home was torturous and I had to take double the pain killers when I got home.  The oxycodone has taken the edge off.  But mentally I am calm.

And I feel…happy.

Rheumatoid Arthritis and Diet

This is a controversial topic.  So I will begin by saying there is no scientific evidence that diet has any effect on Rheumatoid Arthritis.

There is plenty of anecdotal evidence however, that some people find dietary changes make a huge difference to their symptoms.  There are also lots of people that say dietary changes make some difference. Then there are others that say it makes no difference at all.

I would also like to make the point that no one is saying Rheumatoid Arthritis is caused by a bad diet.  Once the disease is established eliminating various foods may help some people, it seems.

I eat a well balanced diet.  I eat very few processed foods, mostly fresh fruits and vegetables, some lean meats and the occasional chocolate bar when PMS hits.  In the past I changed my diet to being Vegan and gluten free.  It did help my symptoms for a while.  Then I re-introduced some animal products and decided that gluten was the main issue.  For two years I ate gluten free believing it was helping my symptoms.

Then one day I had a good, hard look at my pain chart.  And the truth was pretty clear.  It wasn’t helping much at all. I still flared as often, and as badly.  I was just making myself feel better by doing *something* proactive.

So I reintroduced some gluten and it made no difference.

Now that I have no other treatment options I am looking at diet again. It does help some people.  What have I got to lose?  Well, the sheer pleasure of eating something delicious.

I can deal with it.

So.  Research.

This is what I find.

There are many, many theories about what foods exacerbate Rheumatoid arthritis symptoms.  It would seem that everyone is indeed very different and it’s a matter of trial and error.  Eliminating foods and then re-introducing them to see if they cause a flare.

But how long before they cause symptoms?  Can’t be sure.  Some people say things like they eat dairy and within an hour they can feel it.  Some people say a day later.  Some say longer.

It is very hard to pin down cause and effect in these circumstances.  Which makes it very hard to give up foods you enjoy if you aren’t really sure.  A food intolerance is not like an allergy. It’s far more subtle and there is no medical test to prove or disprove it.

Anyway, from what I have been reading, these foods are the main culprits:

Gluten, Dairy, Sugar, meat, nightshade vegetables (potatoes, tomatoes, chillis, capsicum, eggplant) and lectins (beans, legumes, potatoes, peas, zucchini, asparagus, radish, mushrooms)

There are more, I’m sure.  But that’s a heck of a list of things to avoid already.  So I’ve done some more reading on specific diet plans that people state have helped their symptoms.

Most of these diets follow similar lines.  Being that I’ve already gone completely vegan and gluten free I’ve already done a diet more restrictive than most.

My acupuncturist recommends the Paleo Diet.  Looking into that, it seems there are many versions of that as well.  However, after weighing everything up, it seems like a reasonable eating plan.  It’s essentially no processed foods, lean meats, fruit and vegetables and nuts.  But it’s more restrictive than that.  When I compare it to the list of things to eliminate for RA, is not too bad a fit.  I can see why many people claim it helps.

I think a diet full of fresh fruit and vegetables sounds pretty good.  I eat mostly that, anyway.  The hard part will be cutting out sugar and my glass of red wine.  I will look into it more thoroughly in coming days, and give it a solid try.

It’s a 30 day plan.  It can’t make me feel worse, but it can substantially increase my workload and food bill, by the looks.  So I still have more reading to do to see if it’s doable.

But I think I will try it.  Properly. For 30 days.  Nothing to lose.

Rheumatoid Arthritis and life with no first line DMARDS

It has been two weeks since I last took methotrexate and life has gone steadily downhill.  The pain is worse.  I am not sleeping well.  I wake several times in the night and about three nights a week I lie awake from 2am to 5am because the pain doesn’t allow me to sleep.  And that’s after taking oxycodone.  At around 5am exhaustion takes over, until my alarm goes off at 6:30am.

So I would say that methotrexate definitely does help my symptoms, by about 30-40%.  Enough to notice…enough to make a severe pain day into a moderate pain day…a moderate pain day into a mild pain day.   Which is a shame, because I can’t take the stuff.  The side effects are too terrible.

Three days ago I could still tolerate the pain and go for a slow jog.  I could also go to the gym and do my usual workouts –  Yoga, Pump and Spin.  I wasn’t training as hard as a few weeks ago, but training is training, and it still gives me benefits even if it’s light.

Today I went to the gym and I couldn’t finish the class.  It just hurt too much.  My hands couldn’t grip the weights.  My knees and ankles screamed on the squats.  There was lots of oblique work, but I couldn’t twist my torso.  My hips felt seized, or is it my lower back?  SI Joint?  But I couldn’t twist without it feeling like knives stabbing me through the hips and lower back area.

But worse is the weakness.  My hips actually felt like they were collapsing…so I stopped.  (Duh! I hear you scream J )

It’s hard to walk out of a class half way.  But it’s worse to lie in the middle of the floor and have everyone have to step over you…

Sad attempt at humour…

Anyway  I was hoping that somehow I would be able to function without heavy duty DMARDS.  Like maybe, over time, I had improved and now I don’t need these meds anymore.  I know, ridiculous optimist.

But there’s always hope, right?

Not so much…

My rheumatoid arthritis is completely out of control.  It has been for years.  I am completely at its mercy, though I pretend that I am not.  I have a very high pain tolerance, because pushing through the pain is the only way I can have any kind of life.  I push myself in the gym because I know there are many benefits of exercise.  I push myself to try and keep working, even if I am not making any money, because I need to feel like I am still skilled and capable and worthwhile.  And I laugh and smile often, because a life of misery is no life at all.

The problem is there are no more drug options for me.  I have tried all the DMARDS I am eligible for under the Australian PBS.  There are other treatments, but they are expensive, and I don’t qualify.  One rheumatologist suggested I become independently wealthy and then come back and see him again.  He said until then, there was nothing he could do for me.

You can imagine what I wanted to say to him at that moment.  But I needed his help so I smiled and nodded.

But this is the thing.  The Australian health system has very strict rules about who ‘qualifies’ for biological DMARDs.  I don’t meet the criteria.  Not now, and I probably never will.  There are many, many other people like me.  And there are rheumatologists who bend the rules.

I need to find one of those.

I will explain the system in my next post.  Because it’s truly appalling that the Australian government is happy for people to live with excruciating pain, risk permanent joint damage and a life of disability because these drugs are too expensive.  Surely it’s more expensive to have people like me on disability support, 100% subsidising my (much cheaper admittedly) medications?  Would it not be better to try everything to get me into remission so that I can work, pay tax and contribute to the government coffers?

Apparently not…

Alternative Treatment Options for Rheumatoid Arthritis

I stopped taking methotrexate two weeks ago, and I feel no different, pain wise. I feel much more clear headed, much less nauseous and a bit less fatigued. So I’m clear about what effects the drugs were having, but unfortunately it didn’t improve my pain or inflammation levels.

So now what?

I am still taking plaquenil and naprosyn. But neither of these prevents flares. Infact, my day to day pain used to be a four or a five at best. Not hideous but a long way from pain free. Since Christmas, however, I have been living at sixes and sevens and eights. Quite a lot of eights. Infact every evening through to morning is at least an eight. 2am is often an eight and a half. Sleep is difficult and interrupted. I am still trying to exercise, but I’m finding that the exercise, is also making me feel worse, not better. I need nanna naps to get through the day and work is looking shakey. I only work 15 hours per week as it is!

So things are not good. Not good at all. And the really cool thing is that there are no more treatment options. I have tried all the standard treatments, with the exception of Arava (leflunomide), and even my rheumy doesn’t think Arava is a good choice for me. So all I can do is try sulfasalzine (salazopyrin) again, which I have taken before, and it didn’t help.

Apparently I am not eligible for biologic drugs, because my blood work is ‘too good’. My CRP is not high enough. My ESR is only barely elevated. It’s often completely normal. These are the only measures that count in Australia. Four years of pain and suffering is clearly not enough to qualify me. I have a positive anti-CCP, but negative RF. I have had a nuclear bone scan that clearly shows inflammation in my hands, feet, hips and shoulders. I have also had an MRI on my shoulder, and ultrasounds of my hips and shoulders. All show clear signs of RA. But according to ‘the rules’ someone like me should respond to one of the other agents (methotrexate, leflunomide, sulfasalazine).

I didn’t.

So where does that leave me? I don’t know! I don’t see Rheumy again until May. I can’t even call him – the gatekeepers won’t put my call through. I swear they hire reception staff based on their ability to say ‘NO’ and rudely hang up the phone!

I’ve decided to try some diet interventions…gluten free. If anyone out there has tried it, please tell me what you found. Obviously I’m staying on all my current meds. I’m pretty sure I wouldn’t be able to move at all without those! But maybe I can get some improvement on some alternative therapies, like diet. Every little bit helps. We’ll see…