My RA Odyssey

Aug. 9 2015


Gosh. I haven’t written in this portion in a long time.  So I’ll get straight to the point. I hate flares. I get so frustrated when I think I’ve gotten this disease under control and then out of nowhere it side-swipes me. This morning I awoke with uncooperative hands, so much so to the point where I couldn’t even pull the covers off me. But I had to pee. So I figured it out. But then the balls of my feet were in agony. I hadn’t had this symptom in a long time. I got scared. This symptom usually precedes a full-on flare. Of course, I am at the point in my cycle where my RA goes a bit berserk, but the feet thing was very new. So I took 10mg of prednsisone and two Aleve. Then I went and ate something so as to not completely screw up the work I’ve been doing on my gut.

Ah. The gut.

Rumour has it everything starts there. And while I had cut out grains for two entire months, I’ve been cheating. I cut out alcohol for a month also, but I’ve been cheating with that too. I need a plan. How does one keep grains out of their diet? As well as seeds, legumes, red meat, nuts, coffee (!!! NO!!!) and dairy? I know it’s possible, but I can’t have wine either? Man. That’s gonna suck. But people say it’ll help. I’m not entirely sold on it. I know probiotics help a lot, but now that I’m reading about this prevetolla bacteria that is commonly found in people with AI diseases, I’m thinking I need to kill it … again. Do I go back on the minocycline first and then try to heal my gut? Mino has always worked for me. It may be the kick-start I need.

Nov. 9, 2012

I tried an experiment over the past two weeks. I went four days straight without Aleve and then added it back for a few days at half dose. And then I’ve been taking it intermittently. Surprisingly, I haven’t felt much pain. There have been little aches here and there and slight inclinations of burning, but nothing long lived. My morning stiffness is around the same, though far more pronounced in my hands. But my hands are the worst anyway. My ankles have made me slightly concerned, especially considering I need my legs and feet to be in good working order to make it through six months of traveling. But I needed to know if I can get by without Aleve. I needed to know how much this NSAID was masking and if the minocycline has been doing anything. So far I have very promising results. Now to see what the blood work says next month.

Oct. 12, 2012

I can tell when my Aleve starts to wear off. Usually about 11 hours after I take two tablets I begin to feel the stiffness creep back into my joints. It’s not super bad. But I don’t dare go longer than 14 hours without my Aleve. I get worried about how much I take it though. I take two every 12 hours. Most of the time I do not take it with food. I know. I know. I know. It’s bad. But it’s hard to eat with it – especially since I take it as soon as i wake up – when I’m the stiffest. And I’m just glad that I keep remembering to take it and bring it with me when I go places. Which is another reason why I could never make birth control pills work – I’m terrible at remembering shit – that and they turned me into the devil. I’ve been on minocycline and Aleve for five months now and I still have to turn off the car, go back inside and grab my pill bottles when I’m going out for the night. Creature of habit I am not.

I’m pleased to say there is no more mercury in my mouth. My bite isn’t quite normal though – and I still need to call the dentist to get him to file down some of this filling so I can chew hard things without feeling like I’m chewing nails. And I haven’t had any burning in my joints for nearly two months now – apart from that minor flare two weeks ago – that lasted a week – and has miraculously disappeared. Thank. God. I got scared. I’m still juicing and being very careful about wheat, sort of careful about dairy (I still LOVE cheese dammit!) and pretty much completely have stopped eating red meat. Still no soda. Still no coffee. Wow. Never thought I’d give up that one. And still drinking like a college student. Heh.

July 16, 2012

Today I made a big leap and got the first two of my four amalgam fillings removed. I have been reading and reading about the mercury content in amalgam fillings and how mercury – the second most toxic substance on the planet (next to uranium) – is linked to causing many auto-immune diseases. One day I decided to seek out a holistic dentist and get the toxic shit in my teeth taken out and replaced with something not as toxic. In one month I’ll get the remaining two removed.

The mouth is the entry way into the tube that runs through the core of our body – our gut – where food is processed and nutrients and vitamins are made available to our system. But if we are ingesting bacteria – which can lurk underneath amalgam fillings – and mercury vapour – which is proven to leach from amalgam fillings – and I grind my teeth in my sleep a lot – then our guts will also get exposed to dangerous substances that will then be introduced to our system. I am doing what I can to keep the dangerous substances out of my body.

After my final two fillings are removed I need to start chelating. Cilantro, chlorella, DMSA if I can get it cheap enough from the doctor. Or DMSP or whatever. Maybe I will actually make a doctors appointment for this one.

July 3, 2012

Well, I have made it a whole week without prednisone and I’m quite normal. I mean, the pains are still there and the left ankle is now taking over the pain of my right ankle, but all in all I’m not experiencing any abnormal situations. Fuck yeah!

I have started eating tomatoes again. I’ve decided that the five months I stayed off them didn’t do shit. I will try and stick to only organic ones, but at least I know now that I can have salsa. I’m so excited. I’m not going to overdo it though, and I’m still staying away from the rest of the nightshades.

June 27, 2012

Well, I’m on day three of being prednisone free. I am beginning to feel the fatigue hit me at certain periods of the day, but I wonder if it’s just because I’ve been spending so much time in the sun. I know I shouldn’t spend too much time in the sun since I’m on minocycline, but I totally sunscreened up, and so far I’ve had no issues. But the prednisone thing is a biggie. What’s even more interesting, is I seemed to be in less pain today. I’m not sure why that is. About ten days ago I switched from ibuprofen to naproxen. I bought the brand name Aleve in liquid caps and I take double the recommended dose on the advice of a physician. That’s two pills in the morning an two at night. I’ve found it to work a lot better for my inflammation and consequential pain. Maybe my abating pain is a combination of many things – the dry heat of summer, my obsessive juicing, the naproxen, the removal of the steroids, the probiotics and the fact that I’ve been on the minocycline for about seven weeks now. Maybe it’s kicking in?? God, that would be nice. That would eliminate a lot of the worries from my head.

My hand pain has been shite lately though. My fingers do not bend very well anymore – my damaged fingers that is – and man do they ache when I try and make them bend. It’s making work a little difficult. Okay, a lot difficult at times. But I’m still working. I just wish I felt good enough to jump more. Maybe in a few more weeks?

June 5, 2012

Cankles! Thirty minutes into the flight.

New things keep happening. Recently my ankles swelled on a plane ride. Not only did they swell within 30 mins of the plane taking off, but they remained swollen for three days. I had to buy compression stalkings for the trip back. I couldn’t even put the stalkings on myself due to my swollen fingers. I had to get a friend to do it for me. It was mortifying, but damn, what a good friend. I also have noticed a strange swelling of what appears to be a vein near my heel and instep of my right foot. It could be a detached ligament or tendon or something, but it only swells when I’ve got my body weight on my foot. It kind of hurts a bit too. This disease sure is weird.

I’m beginning to think the weather has a HUGE impact on my aches and pains. Every time I wake up and there are clouds I am in a world of pain – my ankles burn, my toes hurt and my elbows feel like they’ve been dipped in acid. Thank God the dry hot weather is nearly here. But I have noticed that I’ve gone a week without taping my ankle, and my shoulders aren’t burning half as much as they used to. And while my fingers are still swollen and hurt, they’re not getting much worse.

My new strange bulges on the side of my foot. I think they’ve always been there, just not this HUGE!

More than a week ago I decreased my prednisone to 1.25mg. So far I haven’t felt that bad of a withdrawal from it. I still want to take a mid afternoon nap and I still want to go to bed at 8 p.m., but that’s beginning to feel quite normal. I’m not sure when I’ll stop taking it all together, but I have found that as long as I take 600mg of ibuprofen 3x a day I can manage the pain pretty well.

So three weeks in on the minocycline protocol and not too sure if it’s working or not. Guess a few more weeks and I’ll have a better idea of what’s happening.

May 24, 2012

Herxing sucks. I know it’s different for everyone, but all I want to do is sleep. This whole rheumatoid arthritis sucks – period. I hurt all the time and I’m beginning to get frustrated and annoyed by it. Why can’t I have my old body back that just got the periodic muscle strain? Why do my fingers no longer work and my elbows ache to the point of tears? Why can’t I walk properly and why is my foot in so much bloody pain? And now the other ankle is beginning to go. I really want to believe this is a herx. I really want to believe that this has all started nearly two weeks into taking this minocycline. Because I feel worse!

May 22, 2012

So one week in on the minocyline (Teva brand) and not much to report. I have had some more aches and pains, and I’ve been sleeping like a two-month old baby, but I’m not sure if it’s working or not. Some things I’ve read have said to pulse it at 100mgx2 on MWF. I’ve been doing it everyday of the week. I don’t know if this is too much or not. Some say the pulsing works best. My GP says to do it everyday to get the best effect. I suppose time will tell. But apart from the wanting to be in bed at 9 p.m. and sleep until 9 a.m. I don’t think I’m experiencing any kind of herx. I keep juicing. I have quite remarkably been staying sober – which is also a new experience. Sorry mom.

It’s been harder than I thought changing my diet. I’m doing it, but I never realized how much crap out there really isn’t pure food. It’s processed and processed and processed until who the hell knows what we got. I still love my carne asada burritos, and until I am ready I will not look into what is in that. That’s my one guilty pleasure. Other than that, I juice, buy a cooked chicken every week, and have the odd turkey wrap from the cafe. I don’t eat much else than that. Oh, and gluten-free, sugar-free, organic cookies. Oops. I do have another guilty pleasure.

May 09, 2012

I had some major set backs since going to 2.5mg. I’m not sure if it was the combination of working too hard, a flare due to something I ate or drank, or stress – but my pain returned with a vengeance and I had to up my dosage for a momentary couple of days. By up I mean to 5mg. I am since back down to 3.75mg, and I’m hoping I have a few things figured out now.

I have started taking 800mg of ibuprofen 20min before bed. The other night I woke up and noticed two things – I was grinding my teeth in my sleep, something I thought I stopped doing, and I was involuntarily contracting my muscles while I sleep. Obviously I’m a tense sleeper, or my body is doing something whilst I’m under. The ibuprofen is meant to help my muscles relax, the inflammation subside and help me get through the night in a peaceful way. It’s working. I woke up this morning with minimal pain. Now that could have something to do with me using a roller on most of my sore parts for over an hour yesterday, but I’m skeptical.

Since I discovered my sleep issues, I’m beginning to wonder if I do in fact have a rheumatoid arthritis issue or if this is a Fibromyalgia flare. I’ve had both diagnoses, but most of my pain these days, apart from my ankle and elbow joint, appear to be muscular. I know RA can attack the soft tissue, but my muscles seem to be more in a state of contraction/spasm. I need to look into this more.

My pitfall is I haven’t seen a doctor since I got back. There’s a doctor here at the dz who said he would help me out with going on the AP, but he keeps forgetting to look into it or seems non-interested. I think I need to give up on him. Plus, I’ve made an appointment with a biological dentist. Now whether there’s truth to their beliefs in following specific protocol is debatable, but what I do know is my problems became exasperated after I had my teeth cleaned and – I’m beginning to fear – they polished my amalgam fillings. Amalgams are usually up to 50 per cent mercury, if not more. Mercury is the most toxic (non-radioactive) substance on earth. And it’s in 90 per cent of people’s mouths – the entry way – the gate-keeper to the rest of the body. I remember a burning metallic taste in my mouth. I remember wanting to gag. My plan is to have these bitches removed, do a mercury detox over the next two years (chelate) and see what happens. Mercury poisoning, or toxic levels of mercury have been linked to fibromyalgia and other diseases. Some people find after getting their amalgams removed, they improve. I’m up for a little improvement. And even though I wish I wasn’t paying for something to be removed that was put there by someone else paid to do so, can you really put a price on health? Oh, stupid question. There is a price on health.

April 17, 2012

“It’s just a little arthritis.” That’s been my explanation when people keep asking me why I’m limping. My right ankle is hit or miss, but on the bad days I have to tape my foot and my lower shin to keep the pain at a minimum. Yesterday I lowered my prednisone to 2.5 mg/day, still splitting the dosage between morning and afternoon. It’s only day two though, so I don’t know how my body is going to react.

Oddly, my left elbow has felt fairly decent the past two days. I worked really hard on the weekend and I heard it crack and pop and twist and crack so many times I thought for sure I’d be in agony, but it actually feels better than it has in months. I still can’t straighten it, but I’ll take the lessened pain.

Yesterday I went to the shop and bought some new supplements as my New Zealand supplies have nearly been depleted. It was actually difficult to find a place that sold quality products. The stuff in the pharmacies here is garbage. I found a nice healthfood shop that carried reliable and tested brands and spent a whooping $80 on turmeric, Omega 3 fish oils, B-complex and glucosamine/chondrotin/MSM. It’s a bit of money, but it’s all good stuff. I haven’t had omega 3s since NZ, but I’ve been taking green-lipped muscle pills, but for some reason I’m not sure it was working the same. So now I’m back on a high dose of these things, and hopefully it’ll do some good.

In the meantime though, I have started trying swimming. Yesterday I did 30 mins in the pool. The breast stroke hurts my elbow a little, but a sense of accomplishment fills me each time I try. I also ordered a juicer. In a week or so the Omega 8003 will arrive at my doorstep and I will begin my juicing ways. I will not let RA win. No way. I’m going to keep my joints moving and keep changing my lifestyle so I will still have a quality of life ahead of me. Of course, any suggestions are appreciated.

March 21, 2012

So far so good. I have somehow managed to reduce my prednisone to 5mg/day (2.5mg x 2) and I have not caused a body-over systemic flare, and it’s been six days. I must be doing something right. Once I got to 7.5mg I knew I had to be very careful and listen to my body for any signs of withdrawal. I’ve read varying reports on how much cortisol produced by our bodies is equal to synthetic prednisone. Most reports, however, said it was 5mg or prednisone that equaled the 20mg of cortisol our adrenal glands are supposed to produce daily. Most also reported that below 10mg the taper should go quite slowly to avoid a flare or withdrawal symptoms. For the first three or four days following a dosage reduction I do feel withdrawal. I get joint and muscle pain, but luckily only minor fatigue. Yet now that I’m at the 5mg dose, these symptoms may change when I do another taper.

I have continued with acupuncture despite people telling me that it is merely maintenance. I happen to respond very well to acupuncture so I can’t be bothered to listen. It has helped with a lot of my other unexplained pain (most probably due to joint destruction) and has helped with my stress. This pain and illness has really consumed my conscious mind and I have found it difficult to concentrate on much else.

My big dilemma right now is that I leave to Fiji in three days and should probably taper again to 3.75mg while I’m there. The fact that I experience withdrawal for about four days afterwards is concerning because I don’t want to be in pain while I’m on vacation. But I also don’t want to be on this drug any longer than I have to be. And I’m worried that if I don’t maintain a tapering schedule my adrenal glands will get comfortable and stall out. I mean, if that can even happen.

My right foot is still a daily shithead. It continues to hurt more than any other thing. I find as long as I tape it it’s bearable. And while I’ve bought a strap to help my left elbow, my left shoulder is now aching again. This RA sucks. But my knee pain is still MIA. Woohoo! So it’s a small win.

March 10, 2012

It started with a sprained ankle. Well, I’m sure it started years before that. In fact, I recall many baffling aches and pains over the years that I couldn’t make sense of. I knew they weren’t right, but I theorized they were normal wear and tear from too many years of abusing my body. So when the doctor explained to me that my blood-work, which he routinely ordered due to other swollen joints besides my ankle, came back with many inflammation markers that are typical of rheumatoid arthritis, a lot of my history made sense. The swollen big toes I had a year and a half ago. The swollen knuckle that appeared with the swollen big toes. The extreme bottom of foot pain that came on then and lasted for months. Or the specialist who told me in 2006 after a battery of tests that I had Fibromyalgia. I walked out of that office and never looked back. I regret that now. I should have pushed for more tests.

I wouldn’t have gone to the doctors if it wasn’t for a bad landing. A few weeks before the landing I could feel my feet beginning to get sore again. I got scared. The burning pain in my toes last year was so intense it would wake me up in the middle of the night. And I knew it wasn’t gout because I had been tested. I knew it wasn’t a bunion because I had an x-ray. But the worst was the bottom of my feet that would inexplicably be so tight and contracted first thing in the morning that the first 20 or 40 steps were excruciating. I think I would’ve started praying to some higher power if I thought it would help. So in November I had a bad landing and rolled my ankle. No biggie. Usually. I bought an ankle brace and brushed it off. I would be fine. The foot pain was in my head.

A few weeks afterward a friend noticed I was limping a lot. I was limping so much that I could no longer skip or run or even take a decent stride. My hands were also on fire. My palms were tight and I couldn’t even pop a bottle top off any more with a lighter. It just hurt too much. It really didn’t occur to me that anything was wrong, at least not until someone made me go see the doctor.

Now something weird happened at this time too. For the first time in 10 years I got my teeth cleaned. I figured it would be a Christmas present to myself. I was so nervous that my mouth would be riddled with cavities, but I was willing to take the plunge and go through with it. I would fix the mess I had created in my mouth. I wish I had never done it. While I had no cavities, it was a week or two after that the burning in my ankles, knees and elbows really set in. I only made the connection between getting my teeth cleaned and the sudden onset of this huge RA flare after reading some articles online. Apparently there is a link between RA and periodontal disease. Go figure.

So with a tentative diagnosis of rheumatoid arthritis in front of me, I am finding the decision of how to treat it very difficult. I haven’t been fully diagnosed yet, by the way. The GP here in New Zealand read my blood work over the phone to a rheumatologist who told her in three minutes that I was a classic case of RA and to put me on 2omg of methotrexate and 5mg of folic acid, and to taper me off the prednisone I was already on. Apparently if you treat RA aggressively when symptoms first appear it has a better chance of going into remission. But I know it’s been coming on for years, so I have not started this toxic toxic drug. Plus, I drink, though no where near as much as I used to.

Initially I was put on a short burst of prednisone with 3 days at 40mg and 4 days at 20mg. My pains came back even more severe after that burst. So then I went back on 20mg near the end of January and have now weaned myself down to 6.25mg. My pains are beginning to come back, albeit quite mildly, but I know my adrenal glands just need time to adjust. I am praying that what I experienced for most of December and January was a flare and once I’m weaned off I will be ok. February was a pain free month thanks to the prednisone. I am scared of the pain coming back.

I go home in 25 days. My objective is to see a specialist then and hopefully rule out all the other bad viruses and curses I have read about in my past three months of online study of RA: diseases that mimic RA and any other nutritional deficiencies that can cause these problems. If I do in fact have RA, I am strongly leaning towards antibiotic therapy and better nutrition (which I have already started.) It seems less toxic then methotrexate. So, while this is not the beginning of my fight, it is definitely my fight. I’m in my mid 30s and I’m not ready to give up. Not yet. More to come.


2 Responses to My RA Odyssey

  1. Shelley Reimer says:

    TIp for joint pain & inflammation. It’s Natural and it’s a natural anti-inflammatory. Concentrated Cherry Juice. Takes about 2 weeks to really work but a tablespoon 2x a day in hot or cold water or juice (makes a nice tea) and saved my career in 2007. It’s worth a try. The health food store here sells it for $25 a bottle and you keep it refrigerated and it lasts forever.
    It took 4 days for me to notice a great improvement.

  2. Pingback: my limp « Humanbeen's Blog

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