Quitting Opioids: Stormy Seas and Taking On Water

It's been stormy sailing... Image: Pirate In The Storm by Peter Concept

It’s been stormy sailing…

Image Credit: Pirate In The Storm by Peter Concept

Frank Talk On Pain and Pain Meds:

As most of you know, I decided to quit opioids for pain in favor of LDN in March, and after 10 years on opioids, I began the process of tapering my dose on March 24.

Some of you have asked for an update, so, in the very simplest of terms, on the one hand, I have made tremendous progress – from 80mg of Oxycontin to 17mg. But, on the other hand, the last 3 weeks, things have been very rough – stubborn me went down too fast, and withdrawal sent my body into a tailspin, with severe diarrhea leading to dehydration, electrolyte issues, more weight loss, and kicked off adrenal insufficiency.

I also have opioid withdrawal syndrome – repeated waves of withdrawal even when I’m not taking a step down, with gnawing pain, insomnia, tremors… and the psychological impact of withdrawal on the brain – feeling periodically like I’m having a nervous breakdown and being very seriously cognitively impaired.

Right now, I’m holding at 17mg on doctors’ orders while we try to get this ship to stop rocking and taking on water.

I had wanted to wait to write an update on the process until I was done, so as not to discourage anyone from making the same decision, to triumphantly say, “Look, I did it, and so can you!”

But it’s not that simple.

Life with ME/CFS is never simple, and I guess I should have known that this process was really going to throw some curve balls at my delicately balanced system, but I wasn’t thinking that far ahead.

I had set a goal:

To go from 80mg Oxycontin daily with up to an additional 10mg of oxycodone IR for breakthru pain, to LDN, and to do it as fast as I can physically and mentally handle it – and to share this journey into uncharted waters with you.

– from “Frank Talk on Pain Meds: Jumping Off Into The Vast Unknown”

I set out to achieve it, without really knowing what I was getting myself into. I knew I had to taper the dose in steps down. But let’s face it – it’s not like there are any studies out there on underweight, severely debilitated, ME/CFS patients, who have been on opioids for over 10 years – and how long you’ve been on them matters a lot.

There’s a lot of debate about how fast a healthy person can go down “safely” without long term consequences – because there are long term consequences if you go too fast, a condition called PAWS (Post Acute Withdrawal Syndrome). Essentially, PAWS is a recurrence of withdrawal symptoms that can occur periodically for weeks, months, or even years, after a person gets off – or, as I’ve discovered, reduced their intake of – any drugs that cause physical dependance. PAWS is why many addicts relapse.

But stubborn & determined, and without understanding about PAWS (yet), I set out to taper or step down my dose “as fast as I can physically and mentally handle it.”

Withdrawal is horrible, it is hell, and even though I was doing this in steps, every single step down has meant going through withdrawal for a number of days.

“Slow It Down!”

The chorus from friends and family was pretty nearly immediate, loud and clear: “You need to slow down.” For the most part, that was more because of the emotional repercusions of withdrawal – the sporadic rages, unreasonable irritability, the jitteriness that had me pacing the floor.

In the middle of April, when my LLMD found out how fast I was going down, she was appalled, and she joined the chorus. In 3 weeks time, I had already gone from 80mg to 45mg. She told me I should go down 5mg every 3 weeks – but that sounded to me like it would take forever, and my PCP, who manages my pain & opioids, had approved my proposed tapering schedule.

I slowed down some, and lengthened out the time between steps to 10 days and then 2 weeks, figuring if I’d gone thru the acute withdrawal and my body had settled down, it would be okay to take the next step.

But every step down, the withdrawal got worse, much more intense, and longer lasting.

Hell Week

June 15, I took the step down to 17mg, and all hell broke loose.

For the first time, I had severe GI issues. I had had mild diarrhea with the step before, but this was severe, and went on for 6 days. The big problem with this is I only weighed 112# when I started this process. I can’t afford diarrhea.

The wisdom in the opioid withdrawal forums directed me to copious quantities of Immodium, which supposedly binds with opioid receptors in the gut. It helped, but I was afraid to take as much as some people said they took, so I soldiered on.

I just had to get through it and out the other side, right?

So, I dealt with it as well as I could. I worked hard to keep my body hydrated & electrolytes in balance. That was challenging, as was keeping my bp in range due to my NMH (neurally mediated hypotension) – it is normally not an issue, but suddenly it was, and my BP kept tanking, meaning on-the-fly adjustments to my florinef, and a lot more sea salt and potassium. I was scarily weak at times.

And withdrawal like this is pure hell:
The feeling of deep pain in your bones, especially arms and legs, like they are being gnawed on by rats; a burning sensation on my skin, like I’m being bit by fire ants; crushing headaches & migraines; the shaking and tremors; nausea; insomnia; restlessness that had me pacing the floor even when I was utterly exhausted; chills/sweats; and the emotional rollercoaster – and that’s the short list.

I drank gallons of kratum tea – a legal herb from SE Asia which binds with the opioid receptors and has a calming effect on both mind and body. It contains no opioids, and doesn’t make you high or anything, and is very safe, having been used for thousands of years in its native Thailand.

I also took a lot of theanine and tryptophan, two amino acids that’re helpful, valerian, skullcap, klonopin, and anything else I could think of. Supplements are my very good friend – especially when I’m not absorbing either food or my meds because they’re running thru me so fast.

It was during this week that I really should have picked up that my adrenals were in trouble, because I started having “adrenal dumps” – definite surges of adrenaline into my system, leaving me hyperalert & agitated, fingertips tingling, body ready for “fight or flight,” followed by periods of deep exhaustion.

But I wasn’t thinking clearly enough to pick that up, and just chalked it up to withdrawal. I was having trouble thinking at all.

Redux

Finally, I had gotten through the worst of it, although I was still having some lingering withdrawal symptoms.

But on Monday, July 1, a full 2 weeks after the step down, I woke up thrashing from the now-familiar feeling of rats gnawing on my bones – hard. Soon all the withdrawal symptoms I thought I had left behind washed over me like a wave, drowning me.

My gut was churning & gurgling, and had been since the night before, and really severe diarrhea set in. There were such outrageous sounds coming from my gut that Rhiannon & I took to joking that Nessie (the Loch Ness Monster) had hatched and wanted out. Gallows humor is better than no humor at all.

By the end of the day, I was feeling dangerously near collapse. I struggled to think my way out of how I felt. The withdrawal was one thing, but this level of weakness & shakiness & altered mental status was clearly another. Worryingly, my weight had plunged to 103#.

Something was very wrong – dehydration, electrolytes, or something else?

Rhiannon made up homemade “gookinaid” and I guzzled it down, along with coconut water, and I soaked in epsom salt baths (for magnesium).

The next day, Tuesday, I contacted my doctors, as the situation continued, with only a slight improvement. My LLMD could see me the next day, and both said if I got any worse to go to the ER. Rhiannon and I discussed the situation at length – and the fact an ER doctor was going to be pretty clueless about what to do with a debilitated ME/CFS patient on so many meds in the middle of withdrawal.

Wednesday, my gut had mostly settled down, and the withdrawal was easing a little. I was extremely cognitively impaired, and completely exhausted, almost too tired to hold my head up.

My LLMD patiently listened, pondered, administered IV hydration with extra minerals for my dehydration & methyl B12, took tons of blood for labs, and ordered stool tests.

Her opinion was that it was likely opioid withdrawal syndrome – PAWS – complicated by adrenal insufficiency, but she’s not one to ever overlook anything, so she’s checking many lab values and for gut infections, etc. My cortisone & adrenal supplements were increased, meds adjusted, etc.

Since then, I’ve had a lengthy visit with my excellent PCP, who concurs.

The working theory is that the repeated stress of the steps down overworked my adrenals – I already had serious adrenal issues, and this just made it worse. In retrospect, I may have been having an Addisonion (adrenal) crisis and likely should have gone to the ER – but now I know the signs of one, I will if it recurs.

Both doctors ordered me not to take another step down for a month.

PAWS

I am ever so slowly recovering, but waves of withdrawal keep washing over me – the gnawing pain, the ants crawling on my skin, diarhhea, and the freaking brain.. opioid withdrawal sure does do a number on your brain, on your emotional, mental, and psychological state.

I like dog paws and kitty paws, but I don’t like these PAWS.

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17 thoughts on “Quitting Opioids: Stormy Seas and Taking On Water

  1. Oh Ash, I’m so sorry to hear that you are suffering so much while trying to improve your overall system. It sounds like pure torture. Sending healing thoughts your way.

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    • Thank you, Patricia – “pure torture” would be about right, and I have periodically asked myself if I really want to continue with this, especially with no guarantee LDN will work well for me. But I’ve come SO far and at such a high cost, there’s no turning back now. However, as my PCP said to me, this isn’t a race to the finish line. What’s important is getting me there without anymore damage being done.

      So slow it is!
      *hugs*
      Ash

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        • Goodnight, sweet sister – it is a blessing to have your support and Love to see me thru not just this, but other events, especially when you are struggling so, too.
          You & Michelle (and others) are such great gifts in my life, at a time when i am so isolated, and yet more surrounded by Love then ever before. ❤
          *gratitude*
          *Love*

          ~Ash

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  2. Oh, Ash, I was hoping this was going better than it sounds like it has been. I am amazed at your fortitude. Yes, when things are all topsy-turvy in withdrawal, it is very, very hard to make good decisions with the 1/8 of the brain we have left, having already lost 3/4 through the disease!

    Not that you needed my opinion, but I agree with the chorus of voices saying “Slow down!” It took me six months to get off 2 mg of Klonopin, an experience that I know I mentioned in passing to you before but have never written about at length because it was the hardest thing I ever did and some of the darkest days of my life. I went too fast early on and threw myself into a terrible, terrible crash, and then had to go to liquid titration, cutting hundredths of a milligram a night. The website Benzo Buddies was enormously helpful with that mess…I don’t know if there’s a dedicated opioid withdrawal forum, but there should be.

    The good thing is that because of that experience, I know that the other side is there for you, too…it is on the other side of this very dark forest and takes much longer than is bearable most days, I know, but you will get there.

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    • Ah, Jocelyn, I welcome all opinions, especially yours, since we are in similar physical condition, and you are exceptionally bright & medically literate – I really admire you, and the grace & courage you show to all of us dealing with these damned diseases.

      I remember our “discussion” about your experience, and had checked out the Benzo Buddies website when you passed it on to me previously – pretty eye-opening stuff! I really appreciate you sharing your experience with getting off klonopin – I’ve been rx’d 2 – 0.5mg klonopin a day for ages, but usually only took one at night and an extra one on bad migraine days before I started weaning off opioids. But during that first 3 weeks when it was all-withdrawal-all-the-time, I started taking both tablets every day, and found it really helped… and then you shared your story with me, and so I have been very careful not to ask my docs to increase the dose, even though I know it would make withdrawal easier. Instead I added tryptophan and theanine, and they help a lot.

      When I was reading about opioid withdrawal – and yes, there is a lot of info on the web, forums and such, altho’ a lot of it is geared to addicts (and thankfully I am physically dependant but not addicted) – and came across the info on PAWS, one thing I noticed was that benzos are pretty notorious for causing very bad PAWS, even more-so than opioids, altho’ the rate with opioids for people going thru the typical “detox” program is something like 80%. (Sorry for the run-on, disjointed, sentence – that’s just how my brain is thinking right now…).

      I like the way you phrased it as a “dark forest” – and yes, I will make it out to the other side. I’m just taking the scenic route and a little detour along the way… 😉
      *big hugs*

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  3. Ash,

    WordPress wouldn’t let me comment to your post for some reason, so I will try to do so here and send it via email and FB. First of all I am so very saddened to hear of your recent struggles and want to send you blessings for hope and healing and serene moments as breaks from your pain. If anyone can relate to all your challenges, it is me. I have experienced almost all the side effects and challenges you mention albeit from different angles….

    I had diarrhea from a problem called CDEF that was so uncomfortable and challenging that I twice had to be driven back over 6 miles straight to a hospital from very important experiences in my life. I had to have testing done that took 2-3 days in each case before even anything could be done once after being quarinteend , but I was in the woods, literally each time – from a Boy Scout High Adventure camp where I held an important staff position I was driven 8 hours, having left all my gear in a massive hurry and taken directly to the hospital, and from the Omega Institute where I was also on staff and having a very powerful summer of healing from HIV pain and reality again straight 7 hours to my home hospital and my personal doctors who knew me very well.

    Both times I was taken directly to the hospital and both times (in addition to 6 other times) they could not do anything to stop the diarrhea for 6-8 days and I was shocked that there was no solution even with the best doctors, tests and attempts of treatments. I found myself feeling lost for words and bodily functions, despondent and losing weight rapidly.

    For over a year when I changed my treatment to finally take the HIV cocktail I had massive side effects and struggles. Although the doctors and my family were so happy to see that my “numbers” were so much better and I was supposed to be healing (at least on paper) I had diarrhea almost as bad that was prompted by eating almost anything… I found that I couldn’t eat vegetables, fruit or dairy at all and that all my efforts to eat better and live healthier leading up to this time were wasted as I tried to find something anything.. that I could eat … this went on for 10-12 months.

    During this time I also had VERY bad dry skin and found that nothing really helped. I ended up putting on skin creams (and I tried everything) 8-10 times a day, even immediately after I exited the shower. The scratching was almost unbearable and I looked red all the time.This was also the time when I lost 30 pounds – and I was already a very weak 165 pounds ( I got down to 135 at the worst) and my Tcells plummeted to 58 which was a sign that I was dying…almost no one who had their Tcells drop below 200 lived to talk about it.

    Before I went on the meds I also developed very bad Shingles totally out of the blue. It started with searing pain to the left side of my face and led to my looking like Elephant man. I was embarrassed to have anyone see me but worse of all I was admitted to the hospital where I was for 5 WEEKS and on morphine and any other super high pain killer they tried. When I finally was released from the hospital I went home to the worst part. I had what was called Post Herpetic Nervosa which was MASSIVE headaches that came out of the blue and required that I eventually had to have a 250 pound friend restrained me and hold me to the bed because my body’s thrashing and my need to immediately do anything I could to stop them left me rapidly hurtling myself to the bathroom and jumping into cold showers. (I fell about 6 times) I have had very ==bad migraines yet these headaches felt like my head was exploding and in a tight vise.

    I also later decided that I was sick of my bipolar meds (which I went off of about 4 times and landed in the psych ward each time due to manic episodes) this time I hadnt had a manic episodes for almost 10 years but I was adamant that I wanted to get off them all …quickly. My shrink said we could go off of them all except one but the process he recommended was over 6-12 months and I was not going to wait that long… so I left Hopkins, my shrink, the clinic etc. and found a doctor (BAD reputation) who would reduce me rapidly. I went off of all meds except one in less than a month and when even that wouldn’t do it for me I went off the last one immediately.

    Of course my body rebelled and since they are brain meds my brain and body reacted drastically. I had ever symptom of brain damage and feared that I was rapidly dying. I had an MRI but it was the week of Christmas so I had to wait till after the holidays and longer to get my results (3 weeks) during this time I was a classic hypochondriac and feared the worse … it was torture waiting because the symptoms still felt like torture. After this I later found out why I had the problems… duh, from reducing my meds so quickly and I then went back to my shrink at Hopkins with my tail between my legs.

    I have had a number of other very trying times and have had to hold onto my life like a ship in awful weather each time. A few years ago I had vertigo and dizziness, very bad lack of balance and many other symptoms and went to all kinds of different doctors only to find that a Neurologist at Hopkins recommended I change my diet drastically.

    This does not even include my Neuropathy and the massive, persistent and unbearable pain that almost took my legs and tortured me along the way.

    Through most of these times I did something that I now regret. I researched everything I could find looking for explanations, fired doctors because I swore I was right and didn’t trust them and lived my life like someone who was dying. I was totally caught up in an unreal word of symptoms that led to definitions, solutions that SEEMED they would fix me and way too much fear and MIS-diagnosis.

    It is very hard for me to say this, but I believe you spend a heck of a lot of time playing your own doctor. My guess is that you have spent many hundreds of hours doing research to find things that just augment your fear and may very well NOT be your problems. What I learned over all the years was that even if I could not trust my doctors they were much closer to knowing what was wrong with me than I ever was,… by a long shot. It did not help me to always live in fear and diagnosis, but it helped to try to live anywhere beside the pain (which at many times was massive) Doing all the research just kept me living in the symptoms and usually led me down dead ends or firing -very qualified and knowledgeable – doctors

    I know that you are a very pro-active patient and coming from one who also is I think that this is great and so important, but I hope that in some way you can see that labeling things sometimes does nothing more than focusing on the same things you may be able to overcome with prayer, belief and letting others care for you

    So there, I said it… you can think whatever you want of my thoughts and feelings, but they come from someone who loves you very much and only wants the best for you…. and has seen very dark, painful and VERY discomforting experiences too and yet I am STILL HERE!

    I wish I could give you a very big hug

    Much love,

    Moshe

    On Fri, Jul 12, 2013 at 1:13 PM, Wolfdreams…

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    • Moshe, I appreciate your sharing your journey, and know, especially having spoken with you in person about these and more, that it is truly a miracle you are still here, and have overcome so very much. You’ve learned many important lessons along the way, and grown into the wonderful human being you are today – one I’m honored to call not just a friend, but family.

      I also appreciate your concern for my “labeling” or “diagnosing” problems, and that I may not be trusting my doctors, and living in a state of fear. However, I don’t believe that to be true.

      ME/CFS is a very misunderstood illness, even by our doctors, and yet it is what I have. Because of that, and because it affects very many of the body’s systems – neurological, immune, gastrointestinal, and more – it is vital that I, the patient, like all patients with ME/CFS, be constantly “body-aware” or “body-attuned,” on the lookout for any problems or imbalances that are cropping up, so we can alert our doctors before the problems get out of control, as they very easily can – especially in a patient such as myself, in the more severe stage of the illness.

      Simply put, even with excellent doctors, were I not body-aware and medically-literate, I wouldn’t still be here, as several times they have “missed” things that could have proven deadly. And I have really excellent doctors – including the same Lyme doctor you met all those years ago – and yet, because they only see me for 45 minutes monthly, and can only absorb so much in that amount of time, both they and I agree that we work in a collaborative partnership. They are not dictators, with very rare exceptions. They recognize that no one really knows what is going on in my very precariously balanced body better than me.

      I believe I made it unclear in my post that I had permission from my PCP to reduce my opioids as fast as I did – she had seen my proposed tapering schedule, and as the one doing my pain management and writing the scripts, was the one whose approval I needed. It was only after I had done a fairly rapid taper that I had an appt with my LLMD, who disagreed.

      As to labeling things, it’s only by knowing what’s going on – the diagnosis – that I know how to handle the situation. This has been a rather unusual crisis, with serious adrenal insufficiency thrown in on top of the expected and then unexpected withdrawal, and, thankfully, I was aware enough of my existing adrenal issues to take proactive measures. An Addisonian crisis, which it appears I was bordering on, can be very rapidly fatal if not treated. I didn’t know that was what was happening at the time, but Rhiannon was under orders as to what conditions would require her to take immediate action – and now it seems my instincts – my fear – about the danger of the situation was well founded.

      I also find my ability to diagnose or research a problem myself to often actually reduce my fear – the greater my understanding, the less fear I need have that whatever is going on is something terrible. A good example of this would be when I had a seizure – the first seizure in many years – on election night. I was told by my PCP’s office to go to their Urgent Care the next day, and by the time I got there I had already figured out that it was a photo-sensitive seizure caused by fast forwarding the DVR while CNN was showing red states and blue states – and flashes of red & blue are the most common cause of photosensitive seizures. It was a good thing I had already researched this as the nurse practioner who saw me was totally clueless, and I would have worried needlessly for weeks until all the tests were run, had I not figured it out myself. And my doctors, once I got to see them? They agreed.

      Moshe, please understand that I have shared my experience here on my blog because I was asked to. LDN – Low Dose Naltrexone – is a new treatment for both pain and to increase immune function, and is being used in a variety of different kinds of patients, including fibromyalgia and ME/CFS patients, usually with success. But to take LDN, you cannot be on opioids. Not too many patients have yet quit opioids for LDN, and I don’t know of anyone who has blogged about the experience. So my purpose is to help other patients not make the mistakes I have made.

      I know I will get thru this, and am working hard at sticking around. My “work” here is nowhere near done, and I’m using every method at my disposal – spiritual practice included – to get thru this trying period. It’s just going to take some time, and is teaching me about overcoming mental & psychological obstacles, along with the physical ones.

      Currently being washed over by a wave of fire ants crawling on my skin, so I need to work on some deep breathing & relaxation, dear friend. Hope to see you soon for some big hugs – sending prayers & blessings & Love…

      Ash

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      • Hello there,
        I realize that this post is from 2013 which was a few years ago. How are you doing now? Did you successfully wean off the opiates to switch to LDN and did it help with your muscle spasm pain? (The main source of my pain is Trigger Points which I read are the most contracted part of the muscle spasm)…..Question: I gradually weaned off my 30 mg daily dose of Methadone but still take a few 5-325 dose Percocets daily which actually help very little with the excruciating trigger point/muscle spasm pain. Do I need to totally wean off the Percocets before I can take LDN? What would happen if I didn’t? Does LDN interfere with the effectiveness of opioid medication?
        Thanks & hope to hear from you,
        Dede

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        • Hi Dede,
          Sorry it’s taken a few days to reply.
          I did wean entirely off opioids, which wound up taking much longer than I expected. I had been on 90 mg a day, and I reduced it much too fast, especially considering I’d been on oxycodone, Oxycontin, or methadone for over ten years. I got “stuck” at 20 mg, and was having PAWS for months. I was advised not to reduce it anymore until the PAWS withdrawal symptoms and adrenal dumping stopped. I think I stayed at 20 mg for close to a year before finishing weaning off.

          I did give LDN a trial for about six months, slowly increasing my dose to the amount recommended for ME or CFS or fibro patients. However, it wound up not helping me at all. I do suggest you give it a trial, though, as I have many fellow patients as friends who have been helped by it.

          You do have to be completely off opioids before you use LDN. LDN and opioids use the same receptors in your brain and LDN will block opioids from helping with pain.

          Personally, I found my pain level to stay about the same after weaning off opioids, which is a fairly common reaction with some patients – hyper analgesia. I now take tramadol, but I don’t think it really helps much. A lot of my pain comes from trigger points and muscle spasms, as yours does, and I take baclofen, Flexeril, and Skelaxin, as much as I need per day, up to 3 tablets each. Those do help, but it is hard because I develop tolerance to them if I take a high dose very often.

          One thing that definitely helps with my pain is curcumin from turmeric. You need to be careful with the type of curcumin you take (there are at least four different kinds available), and after a lot of study and comparison, I figured out that this is the best one for me:
          Doctor’s Best Curcumin Phytosome Featuring Meriva, Soy free, Capsules, 500mg 180 Count – 0.15/each on subscribe and save.
          http://amzn.to/2sByRHb

          I keep meaning to write a series of blog posts on what supplements have helped me the most… My migraines have been getting in the way.

          Hope this helps and if you need more info just let me know!
          Ash

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    • Hi Rebecca, and thank you for your comment! As I mentioned in response to Jocelyn’s comment about her experience with klonopin withdrawal, I’m well aware of just how difficult that is. Kudos to you for sticking with it & getting thru it!

      I will check out your post on the water titration method, as I know when I’m allowed to get back to tapering the dose, having a nice exact method of doing it will be invaluable! At the moment, I’m taking one 10mg Oxycontin (time release oxycodone) at night, and then 1 3/4 of 5mg tablets of immediate release oxycodone during the day – a quarter tablet, more or less, at a time. Not exactly a very precise method of doing this, but the only option open to me when I went under 20mg, as Oxycontin’s smallest size is 10mg.

      Water titration might just make this much easier!
      Thanks again!
      Ash

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  4. Oh, Ash, I do love you!

    Thank you so much for sharing this part of your life right now. It is late, and I can’t write much. I also have a slight headache, but I wanted to say hello, and send all my love to you and yours.

    Please be safe okay. Do take more mg meds if you need it for a while. Maybe a little more time for withdrawal? I trust you, but your story is so scary. Then again, much of it describes my own experience these days! I thought to myself, dang, I knew I was sicker than usual, but wow. Seeing your words, and the description of your pain and withdrawal, well, it is a lot like how I feel and I’m on my meds. ??? Weird isn’t that?

    Well, my back is hurting and I must move to the sofa.

    Ash, please know you are always in my heart and so often on my mind. I love you with all my heart and soul.

    Big Healing Hugs!!! ((((xoxxo))))
    Michelle and Family.

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    • Nodding off to sleep myself, sweetheart, but had to write a quick note to say we Love you & yours so much, too! Now you understand why I’ve been so quiet – but I’ve been worrying about your quietness, too. It’s so good to hear from you, but I’m so sad to hear we are both having such a tough time. We’ve got to get together, sister-mine!
      Giant, giant hugs, and lots of healing thoughts & Love enfolding you and family!!!

      Ash & Rhiannon (and Kodi sends doggiekisses to his girlfriend!)

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  5. About the decision to NOT go to the hospital during the midst of the crisis:

    As most of my readers are fellow patients with ME/CFS, I didn’t feel it was necessary to really explain the decision-making process in depth, as we have virtually all had experiences of being in the hospital and being treated either:

  6. With complete disbelief – as hypochondriacs – and dismissed, no matter how serious the situation that brought us in, or
  7. By possibly well-meaning but incredibly ignorant doctors & nurses who have no knowledge, training, or experience with ME/CFS.
  8. Shockingly little research into ME/CFS has been done, especially compared to the amount of money spent per patient on other equally disabling diseases like AIDS, MS, Parkinson’s, etc, and yet there are millions of us.

    What little research there is very rarely makes its way into the hands of ordinary doctors, and they receive very little training on the illness in med school.

    Such ignorance of our underlying physiology can be just as serious a threat to our health as all but the most dire of situations, especially for those of us who fall into the more severe end of the spectrum.

    Our bodies are delicately balanced, kept finely tuned by the minutest of adjustments in our meds, because we virtually all are hyper-reactive to even the most common of meds. I don’t mean we have allergies – our bodies either over-respond, and we can wind up overdosed on a “normal” dose, or we are prone to often bafflingly weird side-effects (those “2% of patients experienced coma” kind of things), or we don’t respond at all. Some of us have the reverse of the “normal” response – many meds that are supposed to cause drowsiness instead are stimulating to me, for instance.

    Hospital staff may look at our long list of meds (often so long because we take small doses of similar medications in order to avoid the side effects a normal dose of just one of them would cause) and not have a clue what some of them even are, the effect they have on a normal person, the effect they have on us, and why we might be taking them. I have been absolutely shocked at how many times I’ve had to explain why a person with low blood pressure (Neurally Mediated Hypotension, aka POTS), takes a common beta-blocker along with my florinef (a med no one’s ever heard of before). The actions of a beta-blocker should be well understood, and yet I’ve had to “school” doctors in why it’s commonly used in POTS & NMH – and it’s not a difficult concept.

    Add to that the fact that we don’t metabolize medications at the same rate, often much slower, we often have genetic issues that interfere in how our bodies work (example: I carry a genetic mutation that causes my body to be unable to convert the most common form of vitamin B12 into usable form), and handing ourselves over to a hospital can be a recipie for disaster.

    And I haven’t even gotten to the neurological, immunological, and gastrointestinal, differences in our physiology, all of which ER doctors are untrained to handle. They could easily cause a problem to become much worse, just by treating us like any other patient.

    Faced with this dilemna, many ME/CFS patients choose to contact their own doctors first, which I did. Neither of my doctors have admitting privilages, but if things had gone so badly that either Rhiannon or I made the decision that I needed to go to the hospital, my PCP was kept updated very specifically about the situation, via secure email so it would be part of my chart, throughout the days, and was prepared to speak to hospital staff if necessary.

    Rhiannon has been my primary caregiver for many years, and is well versed in my condition, sitting in on virtually all of my doctors’ appointments (she could pass for a medical student or intern, and is a pretty good pharmacist, too). She had me under close surveillance, and we had discussed in depth which hospital would be the best bet, what she would need to explain about the situation, etc.

    I keep an app on my cell fone that tracks my meds, Med Helper Pro, and can’t recommend it highly enough. The app tracks all my meds, when I’ve taken them, what they are for, as well as tracks vital signs and allows for notes to be entered. It also allows for easy export – a couple clicks and everything can be emailed to the recipient (like a doctor) of choice. Best $5 I ever spent! Rhiannon & I also reviewed the app, so she would be sure to remember how to use it under stress, if needed.

    Thankfully, the situation resolved, because of my proactiveness in addressing what I knew were clear signals something was wrong, and that wasn’t necessary.

    But we were very prepared, and it was a tough call – one Rhiannon & I made together. I’m extremely grateful for her strength, wisdom, fortitude, and most of all, her Love.

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