Disclaimer

The content on this website is for educational purposes only and should not be used as a substitute for medical advice. Please consult with your healthcare provider prior to initiating any of these treatments. The use of this website does not imply nor establish any type of doctor-client relationship.

Updated 10-06-19

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©2019 by Wetzel's EDS Life.  Some images and videos may be from other sources, I do not claim ownership of them. If the owners of the different types of media wish for me to take them down, please email me at edslife2019@gmail.com with the specifics information and I will be happy to do so. It is my hope that posting pictures from multiple sites and sources will help spread awareness.

Have a questions or want to report something? Send me an email at edslife2019@gmail.com

My Pain Medication Digest

       I along with many others who suffer from EDS have been on many, many medications to manage my pain. I am a firm believer that knowledge is power, when it is used for the right reason. We could get into a philosophical debate on who determines what is right and wrong, but I am just going to say we go with good old common sense. Getting back to the subject at hand, I feel that it is important that patients share information about effective treatments that have worked for them that may work for others. I believe this very strongly, but on the basis that the patients are comfortable sharing this information.

        Anti-inflammatories, GABA analogues, some types of antidepressants, steroids, non-pharmacological pain treatment options, Topical Ointments and Creams, Opioids and CBD/ Hemp Based Products are all options when it comes to treating pain. Please keep in mind that I am not a doctor, I am merely sharing my personal experience on this subject. Any information taken from this post should be discussed with a medical professional who can determine if they are the best course of treatment for you.

Some of the medications in the anti-inflammatory class of medications that I have had success are Naproxen, Etodolac, Toradol, Robaxin, and Celebrex.

 

      All have been effective to varying degrees, Currently Etodolac and Toradol are the most effective. However Toradol is a short term NSAID medication not meant to be used longer than 5 consecutive days. It can have severe gastric and bleeding side effects. It is also effective in treating stubborn migraines, which is what I use it for when my other medications fail to be effective. The FDA has recently amped up their warnings on the use of NSAIDS, as they can lead to heart attack and stroke if used over long term. Again, this should be determined by a licensed medical professional.

       It is important to disclose all medications that you take, OTC and RX medications alike. OTC anti-inflammatories include Ibuprofen, Acetaminophen, Aleve, and Aspirin, Next on our list is Gaba Analogues. This is a fairly short list as far as what medications I have been on. I have been on Neurontin and Lyrica. Neurontin has proven to be very effective once they were able to find a therapeutic level. Lyrica on the other hand did not agree with me. However this may not be the case with everyone so this should not discourage your discussing this as a viable option with your physician should you choose to do so.

      Antidepressants and Steroids are not medications that I have taken to manage my pain, and I do not know of any specific medications that are used to treat pain and am not comfortable suggesting any at this time. I only know that there are certain medications in these classes of medication that are used to treat pain. Two of the Non-Pharmacological pain management treatments that I have used and still used are TENS and Spinal Cord Stimulation. I currently have a Medtronic Spinal Stimulator which is implanted around my L-2 vertebrae with the power generator implanted just above my right glute. I carry a small controller that I hold up to the Generator, also called the battery, and can turn it on off, increase the electrical intensity, change the program, and so forth.

      This is sort of a controversial pain management treatment option. I have talked to many patients who have had this implanted and have reported being electrocuted or "zapped" by the device. The device can migrate which then require the generator to be reprogrammed for the pain management to be effective again. It can be a bit of a nuisance dealing with the reprogramming which needs to be done by a Medtronic Tech at the doctors office.

        The device is quit ingenious on how it works. It send electrical impulses to your brain faster than the pain signals can reach your brain. As a result, it tricks your brain into interpreting the pain signals as a tingling or vibrating sensation, rather than pain. It is incredibly revolutionary in the way pain is treated. The idea is based off of how TENS therapy works, which operates on a similar principle.

        But personally, I feel that the inconvenience is worth the benefits that it gives me. And I don't have it turned on all the time. Depending on how much I have it turned on depends on how often I have to charge it. The device is charged via a transdermal antenna that is strapped around the waist. It takes about an hour per 25% of battery. The internal generator or battery that is rechargeable last 9 years before it needs to be replaced, or there is a non-rechargeable version that last about 5 years. The technology is constantly evolving and improving. There is more information about the Medtronic Spinal Stimulator Implant on another post on the Homepage of this website.

        The other Non-Pharmacological option is TENS Therapy. TENS Therapy has been around for centuries. However the TENS therapy that is used today has been around since 1974. It can be used on almost all parts of the body, with a few exceptions. There are even devices designed to be used to treat certain types of migraines. But not just any TENS machine should be used in migraine treatment. Depending on what part of the body is in pain, depends on the placement of the electrodes for electrical stimulation. There is a TENS electrode placement chart in the photo gallery.

      TENS Therapy works by blocking pain signals to the brain and by helping the body to release it's own natural painkillers called endorphins. There are studies that say that the therapy is ineffective in treating certain types of pain, and then there are others who say the polar opposite. But as most of you know, this is the case in most things. But personally, it has proven very effective. The electrodes are generally hypo-allergenic, my skin is allergic to many things but I do not react in a negative way with any electrodes that I have ever used. There are two types of electrodes.

       There are the most common type, the reusable disposable type, and then there are the more difficult to obtain rubber electrodes. Each have their pros and cons. I personally like to have both on hand. The rubber ones are great to have, because you never need to replace them. You just need to apply electrode conductive gel to them, and tape them down. They even make tape patches to fit the electrodes so you do have to deal with rolls of tape and they are generally more tacky and less harsh on the skin.

       However if you use them often, they can make the skin of EDS patient raw very quickly, so it is a good idea to have the reusable disposable electrodes on hand as well to give your skin a break from the tape. The conductive gel is inexpensive and one tube can last a long time as you only need about a dime size drop on a 2" X 2" electrode. The reusable disposable electrodes are great too. You can buy them in bulk online for a decent price, generally 20 electrodes for about $16. After you use them, you just run them under water for a second or spray them with some water to rehydrate them and put them back on the plastic card them come on.

       Depending on your skin, electrodes of this type can last 5 to 10 uses before their tack wears out and they need to be tossed. There is a conductive spray on the market that I use that I have found to extend their life to 15 uses. It is about $7 for an 8oz bottle. One spray on each electrode works wonders in keeping them in good condition. It definitely makes them more cost effective. When I discovered the conductive spray on Amazon, I was curious so I purchased it to try it and I was not disappointed. My wife and I use the TENS on a regular basis and we haven't bought electrodes in 3-4 months.

      Topical Pain relievers have been around for almost as long as man. Some of the most popular and well known on the market are Bengay, Bio-Freeze, Blu Emu, Arnicare, Icy-Hot, Aspercreme, and Capzasin. These are all OTC topical Pain relievers. The only RX topical pain reliever I have ever tried was Voltaren Gel. It worked well in helping my pain, however my skin could not tolerate it and it gave me hives. If you do try this medication, I would recommend testing it on a a small area first to see if your skin will react to it or not. Especially if you have EDS or other skin issues.

      Those who might be more susceptible to issues are those with Mast Cell Activation Syndrome. I have this and it causes me to be allergic to alot of medications. My top go-to for topical pain relievers is Arnicare. It is a gel infused with arnica, a natural painkiller derived from the Arnica Montana Flower that grows in Europe and Asia. It is effective in treating joint pain and bruises. Applying Arnicare Gel to bruised skin will help the bruises dissipate faster than normal healing time. It should not be applied to broken skin or open wounds. Biofreeze works well too, however I have found the effects only last about an hour.

      Next we come to Narcotics or Opioids. With the drug epidemic sweeping the nation, this is a bit of a touchy subject. Patients who actually need this type of pain management can't get it, and those who possibly don't need it, are abusing it and causing medical professionals to suspect anyone who says they are in pain. Pain is a difficult thing to treat and detect. Seasoned professionals can read patients in the way they react to certain stimuli, facial expressions, guarding, and so forth. This is where my knowledge is power theory comes into play. If doctors and other medical professionals know more about illnesses such as EDS, they can more effectively treat the symptoms.

      In this case we are talking pain. Since EDS patients have chronic joint laxity, their joints tend to slip in and out of socket, whether is a subluxation or a full dislocation. This causes bones to rub together which causes inflammation, which in turn causes pain. Now when this is a chronic thing, inflammation may not be as visually obvious as it would be if a normal healthy individual was to dislocation a shoulder for example and need to physician to relocate the joint.

      Most EDS patients can put their joints back in place on their own without the assistance of medical professionals. EDS is not so much of a rare syndrome, as an under-diagnosed one. But awareness and education of today's doctors is much better than those of the past. Not to say those of the past were ignorant, it just wasn't well known and knowledge is more easily shared today with the way technology is. There is nothing more frustrating that telling someone that you are in pain and not being believed.

Patient advocacy and education also play a role in pain management. If a patient is educated on why they are in pain, it doesn't necessarily make the pain better, but it does help in knowing why and not feel like you are lost in the dark. And if a patient can accurately describe the pain they are in, better treatment with opioids can be provided. Doctors are understandably hesitant to use narcotics because they are addictive, and can have some nasty side effects.

      I know from personal experience the worst side effects from narcotics are itching, and insomnia. My physician tells me the insomnia is an atypical presentation, as for the majority of the population narcotics have a sedating effect. Also narcotics can suppress respiration and have severe interactions with other medications. From personal experience, I have been put on at one point or another, Morphine, Fentanyl after surgery, Vicodin, Oxycontin, Demerol, Dilaudid and Percocet. And I am allergic to all except Morphine, Vicodin, and Dilaudid. All the others I have such a severe reaction of Urticaria (itching) that I feel like I am going to claw my skin off.

      It gets so bad I would rather deal with the pain of a surgery than the itching the the painkillers. It is nice to have a narcotic pain RX for when you are having a really bad flare and need to break through the pain, but I am super paranoid about becoming addicted to it so I only take it if I absolutely cannot tolerate the pain anymore. And if none of my prophylactic pain medication is effective. But with the combination of prophylactic pain medications, anti-inflammatories, Spinal Stimulator Implant, CBD, and TENS Therapy, and only have to take my Narcotic pain medications once a day maybe three times a week. This is an average. In the winter time it tends to be more because of the changes in barometric pressure and the cold.

The last form of pain management that I am going to discuss is CBD oil and Hemp based products. Growing up, I was taught marijuana was a bad drug and learned to have an absolute conviction that it's use was wrong. Then they started using it to treat Glaucoma. And then to treat cancer patients. And I was a teenager at this time and I had a mind of my own. I started to see the world in a different way. I have always been fascinated with science. When I saw the positive effects it was having on the patients that were using it, I started to wonder if I was wrong.

      I also realized closing my mind off to the possibility that I was wrong about the drug wasn't right either. Now I don't want people to think that I advocate for the illegal use of marijuana. If it is legal where you live, medically or recreationally and you have a med card and use it while following the letter of the law, I have no issue with it. What I do advocate for is the use of CBD oil. CBD is derived from the hemp plant, not the bud of the plant where the "high" feeling THC chemicals mostly reside. THC in low doses can be effective in treating nausea, pain, insomnia, can stimulate appetite and a few other things, but it can lose effectiveness and doesn't always work. And not everyone can tolerate it.

One the other hand, CBD can treat most of the same things, but without the psychoactive effects. You can't get high on CBD oil. And it is legal in 46 States for medical use with an RX, and 8 states with recreational use. Pennsylvania where I reside is one of the recreational states. I had first heard about CBD oil about a year and a half ago. I was hesitant at first to try it. I like to keep a clear head, and despite doing a lot of research beforehand, I still wasn't 100% trusting of the information. But in life, sometimes you just have to take a leap of faith.

 

So I tried it in my vapor. And within a few seconds my anxiety started to fade, and so did my pain. And it was winter time which is peak pain season for me. I instantly started to tell people how great this stuff was. I even discussed it with my parents. I wasn't sure how that conversation would go, but they had done their own research in hopes of helping me with my pain and they were on board with it too. My EDS doctor is pro CBD and prefers I use it over my narcotic painkiller, which is understandable. And I prefer to use it too since it doesn't have any negative effects on me.

 

Before you pursue this pain management regimen, check with your states laws, see if it requires a RX or if it is recreationally available. When you go to purchase the oil, it is best to get it from an FDA approved facility. It can be expensive. However a bottle can go a long way. I had a 10ml bottle and it took me a year to use it all. But do your research and make sure you are buying from a reputable source. I had a bad experience with one brand and it made me itchy for a few days and I couldn't sleep. But once I figured out it was the CBD oil, I got rid of it and got a better quality oil and problem solved.

 

When it comes to CBD oil, you pay for what you get. So don't skimp on it because if you do, the purity level will probably be lower. I hope this article is helpful to you fellow Zebras. I know it is a long article, but I had so much to share, that I just had to keep going. I hope that you all have a pain free day. There is one option that is not a medication, electrical stimulation, or substance that you would take to manage your pain. But it can be effective if you are having a lower pain day but not low enough to be ignored. It is distraction.

 

Distractions can be effective in managing pain, provided they keep your attention well enough to keep your mind off the pain. Some of the things that I have found to be effective measures in detracting me well enough to keep my mind off the pain are as follow;

-Video Games

-Blogging

-Walking

-Swimming

-Web Design and PC Work

-Medical Research

-Working

-Cleaning

-Building Models

-Drafting

 

These are not all the things that I do to distract myself. I don't like to take pain medication if I don't have to, and if I feel I can make it through the day with just my daily meds, then I will. These things help me to do it. It did take me some time to find things that didn't bore me quickly or that I couldn't accomplish quickly. So if you have some trouble doing the same, give it time, you will find your niche.

Please share your experiences with pain management that have been effective for you. We all need to stick together and we all need all the help we can get.

 

This article is my personal point of view, not to be used to treat or cure any condition. You may use this article for ideas in your own treatment plan but I am not liable for the results that any of these treatments may have on you.

                                                                                       John A Wetzel