This past week I had over ten nerve blocks put into my ribcage.

I have been counting down the days since my pain specialist and I scheduled it because my back pain, especially with my ribs, has been out of control. But the closer I got to the procedure the more worried and anxious I was. Last time I had this done, they only injected my left side and I thought I was going to pass out from the pain. Like many other people with EDS, lidocaine does not work on us, and since that’s the only anesthetic they gave, I felt every single injection press into my skin, against the rib bone, and under the intercostal nerves. When I’ve been in a high level of pain for a long time, it’s almost like I become more sensitive. Like everything hurts worse. So I was dreading this procedure very much.

Easy solution. We decided they would just sedate me. I felt ridiculous and have never asked for such a thing before, but it was the easiest most wonderful thing. I don’t remember anything, and I never felt anything. I fully woke up about 3 hours later and ever since, I have had the most delicious relief/reprieve from the constant pain. I can take a full breath again. I can bend again. I can play with my dog again. Everything feels so much lighter, so much better, so much more hopeful! Everything feels so much more manageable, doable. I feel capable of doing things without having to worry about being in a safe place to take my pain meds again. I probably sound ridiculous, but I didn’t even realize what this felt like anymore - to not have to think about how much everything hurts and filter out my energy with such miserly misery.

Wow. This must be what normal people feel like every day and they don’t even realize it! I am going to cherish every moment!

Unfortunately, I know this won’t last and I know I’ll have to go back to my pain management techniques again. Which is why, as promised, I want to provide these techniques and tools that I use to function through the pain. In case you need them too. Someday I’ll write a book about it.

MEDICATIONS

1. OTC (Over the Counter) Meds

a. Acetaminophen: your wonder pill since the 80’s. Tylenol can be found everywhere. This doesn’t really touch my pain, but sometimes combined, will take the edge off. Some people live off of Ibuprofen and Tylenol – that’s the only way they can function. I think my sister is like this. But for me, because they don’t help that much, I often see them as being more harmful than good. I might as well push through the pain than take pills that are barely helping if any but are still affecting my liver and kidneys.

b. NASIDs and other anti-inflammatory drugs: These are your generic, typical ibuprofen, Aleve, Advil, naproxen, and aspirin pills that you can find pretty much anywhere (though, I would highly avoid getting any medications from Dollar Stores of any kind per the articles I’ve read, like this one). Really good for inflammation and acute injuries. Definitely always eat with food. Typically these don’t help me much, but sometimes they will take the edge off the pain if I combine them with acetaminophen or take in a combined pill form like Excedrin. If you go to Walmart or another pharmacy, there are dozens of brands and different types of painkillers. They’ll tout being good specifically for back or arthritis or headaches, but they are all made from the same stuff. It’s just marketing.

c. Supplements: Doctors used to tell me all the time to take supplements like glucosamine, chondroitin, and fish oil for my joint pain. And I’ve tried. They have never helped me in any way that I can tell. There seem to maybe be some better ones on the market now, but I have not tried any of them. Here’s a good article from the Arthritis Foundation though if you want to try them.

d. Topical meds like patches and creams: There are so many of these on the market! Aspercreme gel, Bengay cream, Biofreeze gel or spray, Icy Hot cream or patches, JointFlex cream, lidocaine patches, Salonpas patches, Tiger Balm, Voltaren gel or creme, etc. I’ve tried them all. And surely they help someone, but not a cotton-picking-one has ever done anything at all for me.

2. Prescription Meds

a. Anti Inflammatories: I’ve been prescribed diclofenac, celecoxib, and meloxicam multiple times, and they are ok depending on the situation. Most often though, for me personally, they don’t do much, unless combined with other meds.

b. Muscle relaxers: I’ve been on a lot of these including cyclobenzaprine, methocarbamol, metaxalone, baclofen, and chlorzoxazone. They are all helpful in the sense that they knock you out and you can’t feel the pain anymore because you’re asleep. But they aren’t good for long term use usually and obviously you can’t function on them. Tizanidine has been a life saver for me though. It’s mild and it helps me sleep, but it doesn’t always knock me out and I can still get things done while having some pain relief at the same time.

c. Opioids/Narcotics: Obviously these are not encouraged and often it’s really hard to get them from a provider because of the risk of abuse. I’ve been on tramadol and hydrocodone before, but they only take the edge off. Oxycodone seems to be the only pain medication that is strong enough to really help me, and I take each pill with much trepidation and reverence. Often they not only take the pain away but they reset my body for the rest of the day. I literally do not know how I would manage without these meds available to me. I do not get any sort of high from taking them and they don’t put me to sleep. Which I think is a blessing. I have a high tolerance for meds though, so if you’re like my papa, all you have to do is sniff one and you’ll be “soupy-headed.” WARNING: These definitely need to be supervised by a physician and tested periodically with urine tests to make sure you aren’t getting hooked on them.

d. Steroids: You can’t be on these all the time, but when I’ve gotten in a rut and can’t get the pain or body reaction under control, these have proven to be a lifesaver as well.

e. THC/CBD: To be honest, I don’t have much experience/success with these. I’ve used some tinctures and bath bombs and I’ve smoked a couple times. Haven’t tried any edibles. I had a medical pass up in the DC area, but obviously there are some places that still don’t allow even medical marijuana. Take at your own risk. I add these here just because some people really do seem to find a lot of pain relief from them.

Final note on meds: They are not the be all end all. But I will say that they help tremendously. If you can get a pain specialist who you can trust to manage your meds, this is the best thing. However, any time a physician prescribes a new med, always always check with the pharmacy and google if that med will interact adversely with your other meds. I’ve literally almost died twice because of med interactions. You’ve got to be your own advocate. Don’t assume anything.

MINDFULNESS

This can be so helpful depending on when and how severe your pain is. When I am in a procedure (like having the injecting of needles in ribs or the burning of my cervix lining or the cauterizing of a dry socket…I have so many stories), I tend to use deep breathing, visualization, and an activity I call “Turning Down the Clock”. When I’m at home just dealing with pain, I try to distract myself as much as possible with work or tv or a book or my pets, etc. Meditation can be helpful too.

1. Deep breathing – there are many many ways to do this! My go to is breathing deeply in for 4 seconds, holding for 2 seconds, and breathing slowly out for 6 seconds. Just doing that over and over as long as it takes. It helps calm me and makes me more capable of thinking logically even when the pain is screaming bloody murder at me.
2. Distraction – this is totally dependent on what works for you. Here’s a list of 99 ways to distract you if you need ideas!
3. Guided Meditation – like this one from the Arthritis Society of Canada
4. Turning Down the Clock - Most of the time a procedure or a treatment is not going to last a long time, so I imagine there’s a clock and the amount of time it will take will be approximately the journey of a hand around the clock. As the pain builds and stays, I count down the clock, envisioning whichever hand ticking down down down and around. As I get to each number on the clock I make sure I take a deep breath, since most of the time I am clenched and gritting my teeth at this point. Maybe it sounds stupid, but for whatever reason it seems to help.
5. Visualization – there are so many things you can do with this too, but I usually imagine one of my “peaceful scenes” or “happy places.” I either create a scene like going to read on a blanket in a glen in a forest and imagine being surrounded by all the noises, colors, feelings, sensations evoked by the trees, sun, wind, insects, grass and the animals. Or I settle on a good memory of some place I’ve been, like the abandoned cove in Aruba I found, and I picture everything my senses did back then.

MOVEMENT

This might sound counterproductive when all you want to do is curl up into a ball and bawl. But movement is really essential. It provides a good distraction for the pain, increases blood circulation which helps with healing, increases the synovial fluid movement between your joints, and increases pain-relieving endorphins. Obviously, if the movement makes the pain worse in a bad way, it is not helpful so you just have to learn how to really listen to your body. For me, I definitely have to find low-impact exercises like walking, swimming, and Tai Chi and I just can’t overdo it.

HEAT

This is probably my biggest go-to and something I inevitably use every day. It is soothing but legitimately calms my muscle spasms down which reduce the pain.

1. Heating pads like the ones found here and here.
2. Hot Showers always help when I get shaky which then help calm my muscle spasms.
3. Hot tubs – obviously these are a luxury, but if you can afford them, they are amazing.
4. Infrared saunas and dry saunas – these are also more difficult to access, but gyms like Planet Fitness and the YMCA often offer them as part of your gym membership package.

BRACING AND SPLINTS

These literally hold my body together when my joints are slipping out of place. They provide stability, reduce my anxiety (of hurting myself worse), and help with the pain too. I do not have affiliate links, so the links I’ve added here are simply ones that I’ve bought and continue to use. Obviously, there are lots of other options out there.

1. Ankle braces
2. Back braces
3. Bandage wraps – I use these and these more now than KT tape because of them not having the sticky glue quality.
4. Compression shirts
5. Corsets
6. Finger splints like here and here
7. Hip braces
8. Knee braces
9. KT tape – this really does help, but unfortunately, I am allergic to adhesive so it ends up being a bigger problem. Watch some YouTube videos on how to apply the tape for the best effect!
10. Shoulder braces
11. SI Joint Belt
12. Wrist braces here and here.

THERAPISTS

1. Chiropractors: I have seen several of these, and many people swear by them. There are chiros who manually adjust people (the whole neck crack thing) and there are those who use a tool called an activator that adjusts people less…aggressively. Personally, I am too afraid to go to chiropractors anymore just because my body is so complicated and I’ve gotten hurt more times than not now
2. Physical Therapists: I have lived years of physical therapy now and always will. The (light) stretching and the strength training are imperative for helping my muscles compensate for the ligaments and joints that are crap. A lot of people don’t like PTs because they feel like it is a waste of time – “I can just do those exercises at home!” Yes….but will you? (Be honest). It’s important for the PTs to show you how to do the exercises properly too (otherwise you risk putting yourself in a worse state than before) and it’s also important to find a physical therapist who will actually put their hands on you. They need to offer deep tissue massage, cupping, dry needling, traction machines, etc. I can’t tell you how many times I’ve had to call my PT up and beg him to squeeze me in because my neck just went out and I really need to be able to drive or because I can’t get any breaths in from my ribs screaming.

PROCEDURES

These are all ones I’ve had done with pain specialists. Prolotherapy and PRP therapy were unhelpful for me. I took weeks of them in a desperate hope that they would eventually work but they ended up being a money pit (they were the up and coming newest treatment at the time…now I think there have been more revealing studies on them). However, some people swear by them. Trigger point injections, cortisone shots, and facet injections have had limited success with me. Sometimes they work, sometimes they don’t. Nerve blocks and radiofrequency ablation have been the most helpful for me to date. I’m adding Botox shots since my sister has found good success for her migraines with them as well as ketamine infusion therapy, though I haven’t been able to afford that yet. Ketamine supposedly has a high success rate in chronic pain patients.

1. Botox Injections - designed to calm overactive nerves and block pain signals, specifically for migraines
2. Cortisone shots - anesthetic and steroid medications injected into the target pain area to help with instant relief and hopefully longer
3. Facet injections – injections of steroids delivered directly into the vertebrae facets of your spine
4. Ketamine infusions – an alternative therapy that blocks pain receptors in the brain and “resets” the feedback loop in the nervous system.
5. Nerve blocks – injections that deliver anti-inflammatory and nerve numbing medication designed to disrupt the pain signaling going on in the targeted nerves
6. Platelet Rich Plasma (PRP) Therapy – similar to Prolotherapy but the injections actually reinsert your own plasma and platelets into the target area to increase the concentration of hormones and healing growth factor
7. Prolotherapy – injections designed to “jump-start” the healing immune response in your body to where the pain is located. They inject a small amount of irritant, usually dextrose, into the target area. I know - weird.
8. Radiofrequency Ablation (RFA) – a procedure where the physician uses radio waves to burn off the nerve tissue that is causing the pain
9. Trigger point injections – shots placed into the painful knots or trigger points that develop in muscles. The injections relax and break up the knots.

TOOLS

Last but not least, here are a few more gadgets that help.

• Foam rollers
• Inversion table
• Massage gun - I call it the Thumper. It helps with reducing muscle tension and increasing blood flow. Here is a good article that gives tips by a physical therapist on how to use it properly.
• TENS unit – it stands for Transcutaneous Electric Nerve Simulation. It uses low voltage electrical currents to disrupt pain signals in the targeted area.

Even if you don’t suffer from chronic pain like I do, some of these things will help when you inevitably get sick or injure yourself. I hope they are helpful and maybe you now have a couple more ideas to fight the pain than you did before. Please let me know if you have tried and true methods that help you too!

Keep on keeping on, friends.