Medical professionals have their own and sometimes differing understanding of chronic pain. Most assume it has no physical cause because it if were caused by an injury it would have healed by three to six months. This is a reasonable assumption but EDS patients are awkward and don't follow the rule book.
For example if a normal person sprains their ankle it should feel better in a few weeks with appropriate treatment (rest, ice, anti-inflammatory medication). If they are still suffering pain after six months then the doctors assume it is "chronic pain" and explain it by using analogies about faulty pain signals or pain gates being left open. They encourage exercise, physiotherapy and continuing normal activities. They might prescribe medications like gabapentin and pregabalin for nerve pain. This might help some people with chronic pain but my experience as an EDS patient is different.
I frequently sprain my ankle. It doesn't take a forceful injury for me to have a sprain . My ankle is hypermobile, the ligaments are too stretchy and I can go over on my foot just turning around in my kitchen. I go through the normal healing process but six months later it still hurts. Why? Because my ligaments are stretchy and every time I turn around I keep spraining my ankle again and again.
I don't have chronic pain that continues after a single sprain, I am repeatedly spraining my ankle so it never gets to heal properly. I also get more pain due to muscle spasms as the muscles are overworked trying to do the job of the dodgy ligaments.
The confusing thing for medical professionals is that some EDS patients don't swell up when they have an injury. I'm not sure if we know why, it could be due to the reduced number of receptors in joints or because we damage our ligaments rather than our tendons and muscles. If I had a pound for ever time a doctor told me there's nothing wrong because it's not swollen, then I'd be rich! It's much easier and convenient for them to diagnosed you with chronic pain and blame you if the treatment for chronic pain doesn't work than take the time to figure out what is really going on.
It's not a great situation for an EDS patient to be in because ignoring the pain and pushing yourself to exercise can sometimes make things worse. What we need is proper understanding of the injury and appropriate treatment. In the case of my ankle I might benefit from taping to stop myself hyperextending it, or strengthening exercises so my muscles can help stabilise my joint without taking on the entire load of the ligament when it is sprained. Getting that kind of help is next to impossible unless you live in London and have access to one of the few expert physios in the country.
There is also the "F" word. I'm not cursing, I'm talking about fibromyalgia. Many EDS patients are diagnosed (rightly or wrongly) with fibromyalgia. It's a diagnosis of exclusion based on a symptom list including all over pain, pain on light touch, depression, insomnia and a series of tender points.
I'm sure there are some people who have true fibromyalgia but it can also be a bucket diagnosis used doctors who are baffled by the patient but can't think of what else to call their symptoms. Unfortunately this "F" word can cause a lot of trouble if your underlying problem is EDS because people with fibromyalgia are reassured that their pain is not caused by an ongoing medical problem or injury and they are encouraged to do aerobic exercise as the endorphins will reduce their pain. It's not so great for people with EDS and can leave them with serious injuries.
EDS patients can appear to have fibromyalgia because they can have trigger points, which rather confusingly are in similar places to the tender points used to diagnose fibromyalgia. They both hurt if you press on them but they are quite different things. Trigger points can be knots or lumps in muscle which form following microtrauma, such as the overuse of a muscle taking on the load of a ligament in the hypermobile joint of an EDS patient. It's easy to understand why tender points and trigger points can get confused!
Another treatment for fibromyalgia is gabapentin or pregabalin. I know some people find them helpful but others, like me, do not. They can have unpleasant side effects (gabapentin turned me into a drooling zombie!) but as with all strong painkillers they can also mask the warning signs of injury.
I had a conversation about pain killers with a physiotherapist. They recommended stronger pain relief but I explained when I tried it I ended up feeling worse. I am in pain every day and my pain killers relieve that pain a little bit so that it doesn't prevent me from doing some activities. When I feel my pain increasing to a level that I cannot tolerate then I know I've done too much. If I take strong painkillers they mask the pain, I am not aware of the warning signs and I push on regardless. Then when the painkillers wear off I am in more pain than when I took them. The physio said if I am pushing myself to the point of pain then I am doing too much. I should stop before I feel pain, but that is difficult to do when every movement causes some kind of pain.
For me it's not about pain gates, anxiety or fear of movement, it's a case of my body is literally falling apart and it hurts trying to keep everything together. My joints are hypermobile and nearly 40 years of using them the wrong way has taken its toll. I don't need to be told my pain isn't real, I need expert advice on how to move properly and limit my injuries, then maybe my pain won't be so bad. Unfortunately there are very few EDS experts and the NHS doesn't allow for this kind of long term treatment. Until things change EDS patients are going to be labelled with chronic pain and the "F" word and suffer at the hands of ignorant doctors and physiotherapists.
I'm not saying that all exercise is bad but it has to be personally tailored to the individual needs. I have been told I should try tai chi. I'd love to give it a go but I can't stand unaided and raising my arms increases my POTS symptoms so unless the aim of the exercise is to make me fall over then it's not going to be a great option for me.
EDS patients are tricky, it's a battle just getting the right diagnosis but I hope that in the future that doctors will learn to appreciate how we are different and how important the right treatment is for us.