To visioniosiv: address our unique needs
 

I am posting this new thread in order not to hijack Greystreet's.

Visioniosiv, your response to my post about conflicting medical advice made me wonder what we can do about this. The money spent on bad medical advice is considerable and a great loss, but it cannot compare to the considerable pain it causes along with the loss of quality of life.

In my case I believe the ignorance of medical personal prevented early diagnosis. If even one had suggested CRPS as a possibility I would have researched and maybe have prevented it from being a chronic condition.

I also do not understand why there is no decision tree to follow for CRPS. You would think in the Internet age, all doctors would have a computer system to help them diagnose better with a handout.

I am still reeling from the paucity of information I was given regarding brain surgery and follow up. I only learned from a follow up letter that I would need a stent as well as coils, along with lifetime aspirin use. The letter also referred to me as a "he" and mentioned controlling a collagen vascular disease that as far as I know I do not have.

I would like to trust the professionals, but with every interaction I find a new reason to be skeptical.

The bones in my foot and ankle are demineralizing and the pain is through the roof. I have constant throbbing in the back of my thigh and that adds to my misery. I am spending a fortune on healthcare, but I feel like I am my own doctor.

I'm so with you! The ignorance and lack of urgency among my healthcare providers has been so frustrating. I told every single one of my providers before my diagnosis that "I can't relax my leg". I didn't say "I'm scared to" or "I don't want to". I said "my body won't let me". Not a single one of them made note of that as a key symptom. I also told three of them that the seams on my pants felt like sandpaper. Nothing.

Even after I got my diagnosis they continued to fail me. It wasn't until weeks into my own research that I found out I should stop icing (even though I told them weeks before that I thought it was making me worse). My physical therapist even googled it right in front of me!!!!!!

I'm coming to a more and more solid conclusion that I need to trust my own intuition and the wisdom of all of you more than the doctors, as we are all now too aware that doctors are not the all-knowing wizards the media makes them out to be.

I can't even imagine what a state I'd be in right now if I didn't have the level of advocacy and literacy skills that I do. Just as much as figuring how to get our doctors to be better at their jobs than we are, how do we help the 50% of the population that has low literacy skills and can't to the same research we can?

You are right, they do not listen! Like you I told multiple medicos about my symptoms, the burning pain that prevented me from sleeping-that required constant icing, the feeling that I was walking on broken bones, the pain moving, that a tiny, hard crumb felt like a boulder and could throw my balance off. I screamed when I took a shower. None of this is in the notes. Not one word. It is as if they,as group, decided that what I reported to them was of no value.

I begged for pain help repeatedly, but got nothing, worse I was treated like a drug addict and I believe there is a hidden report written at the beginning of this misery saying I am a drug seeker. I am 65 years old with no history of drug use. I don't smoke or drink either. It boggles my mind that not one of the doctors I saw, did not think it was odd, based on my history, that I was in extraordinary pain begging for relief.

Today I am mixing up my first batch of low dose naltrexone, with naltrexone pills. It is hard for me to believe I live in the USA, pay privately for healthcare and in order to get relief I have to buy a drug and mix it myself. If I want medical marijauna I have to pay a private MJ doctor $260, register with the state $50 and then go to the only dispensary in the state which is miles away from where I live so I can spend another $300 or so to get pain relief. There is something so wrong with this! But I have no other choice.


Meds: Neurontin :400mgs 3x a day.

BB,

I understand the desperation for a med that will work. BUT....LDN has a very small therapeutic range. Patients often start at 1.5mg and go up to maybe 4.5 max in increments. Compounding pharmacies have triple mill systems, etc. to make sure the dose is standardized. I am concerned you are getting into something that may sabotage your efforts at healing. You are in a consistency danger zone. We may have our challenges with doctors but there are competent ones out there and a doctor and reputable pharmacy should really be doing this for you.

Have you tried calling compounding pharmacies and asking who in your area prescribes LDN? That is how I found someone who will prescribe it.

It is illegal to sell prescription drugs over the internet in Thailand. Thailand is absolutely notorious for online pharmacy scams where internet 'pharmacy' sites are actually selling counterfeit and contaminated products. There was a scam in 2013, for example, where over 30 different pharmacy websites with different branding were all in fact linked to one woman who was illegally selling counterfeit drugs online in a huge, professional set-up.

You have absolutely no idea what you are buying. It is entirely possible that it is not the drug you think it is, however reputable the website you bought from looks and however genuine all the packaging looks. The ingredients could be toxic or dangerous - that is common in these counterfeit and contaminated prescription drugs. As you have no idea what you are actually taking, they could cause you further harm or interact with other medications or supplements.

Its up to you of course what you decide to put into your own body but this is an incredibly risky and illegal activity, you may well just be throwing your money away and you are endangering your own health. Under the circumstances, is it actually worth that level of risk?

Littlepaw,
Thank you for your concern. I understand why you think as you do.

I have experience with two compounding pharmacies. Because I was having constant attacks from Ménière's Disease I was able to convince my old PCP to give me a prescription for a compounded drug after I supplied her with multiple monographs and other info. The drug worked well for two years. I even regained my lost hearing.

But something suddenly changed, I started having attacks and my hearing declined. It took a long time to figure out what happened. Ultimately I learned that the compounding pharmacy changed the supplier of the main ingredient, one which did not seem to work for me even though it was supposedly the same chemical formula. I then went to another compounding pharmacy, which used the original supplier, but this pharmacy mixed the formula wrong so often I would find the capsules oozing and stuck together. They were ineffective. I permanently lost 50% of my hearing in my right ear during this distressing period. :mad:

Both pharmacies are top rated.

Please read: http://www.lowdosenaltrexone.org/comp_pharm.htm

The instructions on YouTube and those I found written by a chemist to make LDN are straight forward.

Basically a 50mg pill is scored and put in 50mgs of distilled water. The pill and water are refrigerated while the pill dissolves in two hours. The mixture is shaken and then the sediment is allowed to settle. Afterward the appropriate dose is drawn up into a calibrated syringe and taken. I am going to start with 1.4mg and see how it goes.

At the risk of being a total pain in the ***, you need to bear in mind that the distribution of the active ingredient in pills and tablets is notoriously random. Its one of the well known problems with people splitting pills and tablets. Because the active ingredient is not necessarily evenly spread throughout the whole tablet, each half can contain dramatically different amounts of the active ingredient. Given that your instructions and the doses are supposed to be precise, you need to bear in mind that however careful you are (and assuming you even have the drug you think you do) splitting a tablet means you can't ever be certain about the dose you actually get.

I'm not trying to be difficult - I just think you need to fully factor in the significant risks and issues there are with both your materials and methodology.

All your concerns were mine as well. Again I understand what you are saying, but there was considerable due diligence put into this before going forward. FYI I did not randomly select any overseas pharmacy via a google search and blindly give them my credit card info.

I paid considerable sums of money to two compounding pharmacies for a unique compounded drug that worked beautifully when it was compounded properly, but when it wasn't, it ruined my life and took my hearing, so I am informed differently than you are regarding the safety and efficacy of compounded drugs provided by a compounding pharmacy.

Please read the following report from the FDA:

http://www.fda.gov/Drugs/GuidanceCom.../ucm155725.htm



The reason the tablet is split or scored and both halves put in the distilled water is to assist dissolving. I did not bother splitting the pill, but it would not be an issue, I used the entire pill. Also these pills are not slow release. I followed instructions provided by a chemist using precise equipment.

As I said, its your choice to take these risks with what you are buying on the internet and then putting into your body.

I didn't mention compounding pharmacies so I think maybe you have confused my post with someone else's. Compounding pharmacies are not the same as the large scale, commercial pharmaceutical manufacturing facilities run by drug companies who would normally manufacture and supply the type of medication you had been hoping to be prescribed.

I did not confuse your post with someone else's. Low Dose Naltrexone is not manufactured by large scale commercial pharmaceutical manufacturing facilities. The only ways to obtain it are via a compounding pharmacy or DIY. Dr. Bihari, the leading LDN doctor, recommends the latter method.

I am glad we are having this discussion, because it highlights the issue of access. I am in extraordinary pain all the time, because the legion of doctors I have seen will not give me oral (I recently was given neurontin) or topical pain meds. I am fearful of driving lest I brake hard and damage my CRPS foot and ankle. I can barely walk 40' feet on crutches. I cannot use stairs. I have to have a heating pad and a heated blanket on my foot or it gets icy cold. Socks make it worse, because they act as cold insulators. In order to follow Dr. Bihari's protocol in the traditional manner a person would first have to find an LDN doctor, then go the doctor, convince said doctor to prescribe naltrexone instead of LDN. This process requires incredible wherewithal that most sufferers do not have. I for one do not have it.

Visioniosiv: when I first got RSD 20 years ago, before my diagnosis, I was told to ice. Workers comp paid for the gel ice packs. My surgeon insisted that I use them, with ten minute breaks. They even gave me 2 oacks, one to freeze while I was using the other, and then switch. Even after one doctor diagnosed RSD, the surgeon insisted that I keep icing. The ice cooled it off, numbing me. Within ten minutes of having the pack off, I was on fire again. Now, the exact places that burn the most are EXACTLY where the pack used to sit. It was a long pack, that bulged out in the center. I later read that icing in not recommended for RSD, that it makes it worse, causing permanent damage to the myelin sheath.

Want to hear something crazy? 6 years ago a nurse practitioner at Cleveland Clinic pain management actually told me to ice. I was like Wtf!?!?

I don't mean to sound negative, but especially with the problems I've been having finding a new doctor...I can say that most docs are I'll informed, and have their own pockets in mind, not us. This may just be my experience. Research everything they tell you to the best of your ability, don't just believe what the doctors say. Always get a second opinion, and please don't ice.

It's a crying shame you need to go through mixing your own meds. We shouldn't be suffering like this, begging for medical care, understanding, and medicine. I am absolutely disgusted.

Please be careful. I wish you luck.

LDN definitely is manufactured in commercial pharmaceutical facilities.

It is manufactured and sold under the commercial name Nalorex by Bristol-Myers Squibb Pharmaceutical Limited, as an example.

This is not Low Dose Naltrexone. It is another version of full dose naltrexone which is used to treat opioid dependence.

No drug mfg makes low dose naltrexone.

Hi BioBased. Please forgive me for the late response; I've been out of town.

It sounds like you have every reason to be skeptical. I'm so very sorry to hear all that you have been through. I do agree that an early diagnosis is helpful. I was fortunate to have that in my case (although it was already after I'd self diagnosed via Dr Google after obsessing over it for many weeks post surgery.)

Ironically, even though it was caught it early, none of the modalities prescribed did anything whatsoever as far as improving my physical condition. These prescribed modalities essentially included: a) drugs, and b) nerve blocks. And if A and B don't work up front, we'll try different A's and more B's. And if that doesn't work we'll implant a stimulator in your spine. No mention of PT or OT. Counseling for potential depression was also offered as a future option.

Sorry doc - but drugs don't heal this; they only mask the pain (as well as the actual cause of it by further complicating the picture with side effects). And I'm not going to let you inject anything into the lumbar area of my spine; the RSD was triggered by surgery in the first place and I'm not really keen on seeing if further invasion will do the trick.

Not to say that drugs and nerve blocks don't have their place. Especially in acute care settings. But as a primary treatment plan? REALLY?

Everything useful I ever learned about RSD I learned online.

So as far as what WE can do about this - we're doing it right now. We are posting and sharing real information through our own individual anecdotal experience. Sure - they're subjective - but what isn't?In my opinion, there is more useful information on this site alone than one can accumulate by going to med school. Do I know this for a fact? No - I've never been to med school. But what I have done, is actually lived with a chronic disease, and my experience was that my own research and applied remedies were far more effective and far less invasive and far less mentally incapacitating(ie far less DANGEROUS) than what was recommended and prescribed by the 15+ doctors and specialists I saw early on in the diagnosis.

You ARE your own doctor. The medical field is supposed to be here to help us make OUR decision about what to do with OUR body, but unfortunately it is not set up to be very effective in much beyond acute care. Here in modern medicine, we're great at: surgery, splinting, and drugs. Life expectancy is much longer, but what is the actual quality of life?

In many cases, the current professional treatment plans actually exacerbate existing symptoms, and create entire new ones. And it becomes this compounded Gordian Knot where the patient is suffering and no longer knows who to believe or trust.

The challenge is that the majority of folks here are already at Threat Level Orange, or they wouldn't have come here in the first place.

In this case, ANYTHING that calms the sympathetic nervous system is a catch-all positive treatment for RSD. That's the starting point.

Ultimately we are the ones responsible for our own individual health. Ideally, doctors are paid to be there to support and assist us in the healing process - but they can't wave a magic wand and cure us (at least as far as as RSD goes.) It sucks but there's the rub.

So it's on us to gather information, share our successes, and support one another.

There are many alternative modalities out there that helped me; I'd be more than happy to share specifics on what worked for me. :)

I am all eyes, please share.

Haha!

Bio- I remember in one of your first threads when you signed on here I responded with this thread link: http://neurotalk.psychcentral.com/thread205597.html.

A lot of the alternative type of stuff I did is on there; let me know if you would like to know specifics on any of the line items. It's not that I did anything special compared to anybody else, but I WAS able to identify a lot of what was right for me and that's what was important. The biggest difference between my approach and the typical medical approach is a focus on the emotional, mental, and spiritual components of health, instead of primarily the physical.

Essentially what I did was take a multi-pronged holistic approach and threw the proverbial kitchen sink at it.

The common medical perspective from what I read in my research early on was that RSD is essentially the sympathetic nervous system gone haywire.

Ok - well hey that's good to know. So what is the sympathetic nervous system? Well, it's largely regulated by the subconscious, for one. And, it is intricately related to the fight or flight response.

So - RSD manifests as the sympathetic nervous system in permanent fight or flight mode. Ok - good to know. BUT - it's in the subconscious. Wherever that is. My next question was a big one, and it changed my perspective on many things:

How do I CONSCIOUSLY influence the subconscious? Because that's where this RSD thing, whatever it is, seems to be coming from.

Well, I went back to the key physical manifestation of the disease - the permanent fight or flight response. So what CAUSES a fight or flight reaction?

Stress.

Ok now that's a broad range of just about everything and anything. Friggin' everyone knows that reducing stress is good for your health. So what? The thing is - there's lots of different kinds of stress: physical stress, mental stress, emotional stress, spiritual stress, to name the big ones.

Stress is really just FRICTION, and we have that just by being alive and kicking. Gravity is a permanent stress on the body we all have to deal with. Heck, breathing air causes friction in the lungs. So there was no eliminating it, as far as I could see.

So I asked myself the next question: What TYPES of stresses do I have that would relate to something like RSD?

Well, I had surgery and it triggered it. Duh. Yeah, but thousands of people have surgery every day and don't suffer from evil chronic pain disorders. Plus, I was 100% healthy before RSD! Former athlete! But still in the prime of my physical life! I couldn't have even BEEN that stressed if I was in that good of physical shape. Right...???

(I WAS NOT RIGHT.)

I also read some Dutch research on excess oxygen free radicals in the bloodstream being the possible primary cause of RSD. A little more research brought me to understand the biological function of oxygen free radicals - they contribute to oxidative STRESS. A little bit of oxidative stress is good and normal and helps the body metabolize and function properly - MORE than a little bit and the immune system starts to react.

And the immune system reacts by INFLAMMATION. It's an automated calling in of the cavalry to a specific area of trauma (another word for physical stress.) The subconscious sends more blood to that area in order to HEAL it. WE don't do it; that's just what our crazy simple, crazy complex body DOES in order to continue to function. IF there are more free radicals present than the immune system in its current condition is able to neutralize, either because of the severity of the initiating trauma AND/OR longstanding, chronic stresses that have built up over time, some very big problems will inevitably start to appear. Because the human body is smart. It knows way better than we do. Once ischemia sets in, it will actually QUARANTINE effected areas to protect the rest of the body. That's what happens in middle to later stage cases of RSD.

I think it's also why the longer someone has RSD (or ANY chronic condition), the more difficult it is to reverse it.

That doesn't mean we can't make progress though, right here, right NOW.



And it's based on identifying, and gradually reducing, the primary sources of YOUR stress. Broken down loosely as follows:

Diet. (What you put in your mouth to live on.)
Environment. (What all of your sense organs tell you about where you are physically. What/Who do you see? Hear? Taste? Smell? Feel? )
Movement. (EVERYTHING is in constant movement. Inertia is not our friend. This is one of the toughest ones for RSDers; must strike a continuing perfect balance between overdoing and underdoing.)
Emotional. (How you feel about your current environment?)
Mental. (What do you believe versus what reality is?)
Spiritual. (Am I alone - or not?)

Most of us are familiar with the more physical aspects like diet and environment. But even here, there is a real lack of either knowledge or communication from the medical field on proper diet. In our case, any food that is INFLAMMATORY ie acidic is not beneficial in anything more than a very small amount. Excess sugar and carbs, processed foods, caffeine, meat, soda... Heck pretty much the entire normal American diet is inflammatory.

And environment's easier said than done too, right? Sure- I'll just quit my job, pack up and move to the beach and let the salt water and sand heal me up. That won't cost a dime. It's not as if I haven't already spent my life savings on medical bills. Oh- and negative people? Yeah I'll just cut them right out of my life. Especially my family members. No big deal there. OH YEAH -- and the fact that almost EVERYTHING we use from shampoo to toothpaste to cleaning agents have toxic chemicals and proven carcinogens in them? Heck, chlorine gets sucked up by our skin EVERY DAY we take a warm shower. Look it up.

Environment is a tough one. I just did what I could, adding or eliminating one or two things at a time.

What most of us AREN'T familiar with, however, is how to identify and change emotional and mental stress. That's where things like meditation, visualization, qi gong, creative arts, yogic breathing, etc come into play.

The key is in changing as many of the inputs of the above to POSITIVE. This is done gradually over TIME: ie frequent repetitive events. And with REPETITION, that mindset will seep beyond your conscious intention, to your SUBCONSCIOUS (and unconscious, actually), where it will have a much larger impact on your Life. RSD can improve significantly as a result of that.

Acceptance instead of resignation. Responsibility instead of fault. Every quality has a range or scale - with positive on one end and negative on the other. It's really simple and I can pay it lip service all day - it's just way easier said than done. And it's done by identifying, and reducing, YOUR sources of stress.

To go a little more new agey: Another REALLY BIG clue to the sources of our stress- a real blessing - is that non physical stress, in particular emotional and mental stress, manifests in the PHYSICAL body as a guidepost to help us figure out their true sources. The hardest thing to do is to be truly honest with ourselves. But once stuff pops up in the physical body, you know that particular stress has been there for quite some time. And you can't ignore it. The physical body is the LAST place stress shows up.

Every body part correlates to the whole. Everything is connected. And every body part has a function. And if that specific function is impaired, it correlates to the whole: i.e. YOU. An example for me - I've had ankle issues all my life. Well, what is the function of an ankle? To be supple and flexible, promoting movement in all directions.

My entire life, if I'm honest, I've been INFLEXIBLE and STUBBORN. Closeminded. I had myself subtly convinced that I was always right. And if I wasn't, it was DEFINITELY someone else's fault.

Another even easier example: the eyes. What do they do? They, uh, SEE. In my case, I've been extremely nearsighted since I was a child. I went from flawless vision at age 7 to 90th percentile nearsighted at age 8. This corresponded EXACTLY with a move to a new house in a new state, along with this crazy massive irrational fear I had of being drafted in the future and dying at war (don't ask). I was so afraid of the future that my eyes literally stopped letting me see beyond what was right in front of me. (Alternatively, Farsightedness would be fear of the present.) Interestingly, I've worked through a lot of these fears as an adult, and my vision REVERSED on its own. (Not to where it's 20/20 by any stretch, but my prescription has gone down in both eyes. Too much of a coincidence to dismiss, at least for me.)

I'm not saying it will always be easy to pinpoint. Some cause and effect is so complicated that it's just beyond the current level of our awareness, and I accept that. I mean - how do we explain people born blind, or children dying young of starvation?

But I did find that I was able to identify my real sources of stress if I really, honestly, looked.

All right at this point I've gone tangent enough so I'll wrap this up. Just some stuff to let seep into the subconscious.:)

Thank you! :) this is an amazing post, full of helpful and insightful information, every RSDer should read it. I did go back and read your older post, which is also a must read. I will copy these posts into my CRPS notes for reference.

We are quite similar. Weak ankles. Check. Nearsighted. Check. Stress. Check. Although, because I am a woman I did not have to worry about being drafted into that horrid war, but I worried about everything else.

Reviewing the totality of everything that has happened to me, in some ways it is surprising my body has held up as well as it did. But I would nonetheless like to get through this set back to go on and be productive. Anything that could possibly help me achieve that goal is going to tried.

Since I cannot afford everything suggested to me-like you said-a beach vacation, haha, I will find a close approximation. We are lucky to have streaming TV and youTube videos, because the sights and sounds of other places are as close as a remote. The same applies for self-hypnosis, exercise, massage, just about anything you can think of.

I am grateful for heating pads, heated blankets, paraffin wax heaters, massagers, the internet, all the things that were not available when this horrid curse was first named.