Most people living with Ehlers Danlos Syndrome or another connective tissue disorder will experience a lot of pain in their life, and often find that it can be very difficult to manage it. But seeing how I only have personal experience with Ehlers Danlos Syndrome, I’ll focus on that even though I think many things applies to other conditions as well, such as Marfan Syndrome.
The pain caused by Ehlers Danlos Syndrome is of a pretty complex nature as we tend to have many different types of pain. We may have chronic pain in both soft tissue and joints, sometimes of inflammatory nature, and with time many will develop nerve pain as well, we also tend to get a lot of acute pain from injuries like subluxations, dislocations and sprains, or from just being total klutzes and bumping into things or falling.
A part of the complexity in treating our pain lies in the different types of pain we experience, another part is the nature of Ehlers Danlos itself as we tend to react differently to painkillers and medicines in general, last I heard it was believed to be caused in the different structure of our connective tissue. Severe reactions and allergies are not uncommon, or extreme sensitivity to substances. Or we may be extremely resistant so to the level we need enough painkillers to knock out a whole kindergarten to just get our pain to a manageable level. We may also have a different metabolism when it comes to painkillers and anesthetics, it can be out of our system before you can say zebra, or it may take ages for a medicine to kick in, if it does at all. It also happens that people with Ehlers Danlos Syndrome get side effects that are very rare or even unheard of.
With all this in mind, it can be difficult to find a working pain management that both gives adequate relief and has little or no side effects for the patient. All types of painkillers also comes with their own issues. Acetaminophen/Paracetamol may put a strain on your liver with time, NSAID such as Ibuprofen, Naproxen, Diclofenac and so on can harm your stomach or you may even not tolerate them even to begin with due to already existing stomach issues or other issues that contraindicates the use of NSAID, opiates may with time cause such a high tolerance that you’ll need extreme doses to get adequate relief from it. Some antidepressants and anti seizure medicines may also be used to treat the pain, but that’s something I’m personally against as those medicines tends to have a list of side effects longer than the Old Testament and they can be worse to wean off than any opiate you can think of, plus they tend to mess with your entire body chemistry and be plagued by false advertising where it basically claims to be a magic cure it all tablet when it may in fact just be a way for big pharma to earn more from the sales of it.
When starting your pain management journey it’s likely that you’ll be put on Paracetamol and a NSAID type medicine or COX inhibitor that works similar to NSAID for pain but with less harmful effects on your stomach. You may also get to try a muscle relaxant if you’re having issues with tense muscles causing pain or if you have issues with spasms. Depending on your type(s) of pain, your doctor may also want to put you on an antidepressant or anti seizure medicine just to try and see if it works, decide for yourself whether to try it or not, do not let anyone force you!
If the milder pain management fails, you may need to add a mild opiate to your management, either long acting or short acting or both, there are some different to choose from and even though they’re considered pretty equal, you may have very different effect from them depending on which type your body handles the best. Tramadol and Codeine belongs to this group of opiates.
If the weak opiate fails for you, you may need the stronger opiates, for example morphine. At this point if tablets are failing you, or you’ve experienced in the past that tablets work very unevenly for you, you may be put on a transdermal patch or a tablet that you let melt under your tongue.
Transdermal patches are likely the most stable pain management you can have for chronic pain as it doesn’t matter which mood your stomach is in, it also tends to affect your intestinal motility less than oral opiates. The drawback with transdermal patches though is that your skin may not tolerate it, but should that be the case, don’t give up instantly but ask to try different brands of patches as different manufacturers have different adhesives, you may tolerate one better than the other.
There are also implantable devices such as a spinal cord stimulator that uses a weak electric current to block some of the pain signals from reaching your brain, or an implanted pump that pumps medicine directly into your spine canal. The use of such devices comes with a risk though as people with weakened connective tissue are already at an increase risk of spinal fluid leaks, and refilling a pump also poses a risk of getting an infection if any contamination happens to go into the pump through the needle used to refill it. It does however tend to be very effective ways to treat pain, and with the medicine pump it means having much lower doses of medicine doing the same job as higher doses did orally or transdermal as the medicine from a pump is infused directly into your spinal fluid.
Antidepressants and anti seizure medicines are mostly successful in treating nerve pain, but it may or may not work at all, and it can take a long time to find out which it is and during that time you may experience very unpleasant side effects too. If you have nerve pain that isn’t very wide spread, a lidocaine patch may be a good option to try too, it’s just regular local anesthetic on a patch that you put on the area that needs numbing, this tends to work well even for Ehlers Danlos patients who don’t get normal effect from local anesthetics normally.
Both for muscle, joint and nerve pain people may experience relief by using a cream or ointment on the hurting area, it can be Voltaren gel, Bio Freeze, Tiger Balm, horse liniment or something else, in some places a compounding pharmacy can even make a custom made cream for you to use according to prescription by your doctor.
I know a lot of people are worried about addiction when it comes to pain management, but if the medicine you take works for you, is used for the right reasons and in the right doses, the risk of actual addiction is pretty low. The one big thing to look out for with opiate use is tolerance, you don’t want to have to increase your doses too rapidly as there will be a point where you reach your body’s tolerance ceiling, and strong opiates are in a way a last resort, there isn’t a whole lot of options left when you’ve reached that far, so you would want to avoid it for as long as you possibly can.
There are also natural ways to relieve pain, such as meditation, yoga, relaxation, massage, acupressure, acupuncture, TENS units, Ice, heating pads, dietary changes, exercise and whatnot. For some it works very well, for others it doesn’t. It’s a trial and error to find the method(s) that works best for you, with or without taking medicines.
Don’t be afraid to educate yourself about different options and methods, the more you know, the more you can work with your doctor to find the best solution for you! You know your body best because you live in it day and night, your doctor doesn’t know what you are feeling! Always consider the benefits versus the risks when it comes to your treatment and don’t take more medicines than you absolutely need.
Do not make any changes to your current regime without first consulting your doctor!
I am by no means a doctor, nor will I ever be one even though it was once my childhood dream. I am just an Ehlers Danlos patient living with pain, living with pain management and I’ve spent a lot of time reading up on different medicines and methods both because I’m interested in reading about it, and because I’m living with it everyday of my life.
I’m personally on a transdermal patch for my pain and for the most part, that has me covered enough to get on with my day. At the moment I do not have a breakthrough medicine for pain even though I should have one available for acute pain, I do however have a muscle relaxant for when my muscles get too tense or when I get spasms. I try to breathe through acute pain and also use relaxation and TENS as needed, sometimes I may use heat or ice. Unfortunately I am intolerant to exercise, all it does is causing more pain, but I do try to live as actively as I possibly can. But for those who can tolerate to actively exercise, having a physiotherapy program that fits your needs may be very helpful both in strengthening the tissue around your joints and manage pain.