What Pain is Like with Ehlers-Danlos Syndrome.

Ehlers-Danlos for the most part is an invisible illness. You cannot see my faulty genes, you cannot see my collagen. There are maybe a few things that are visible (like bruising, see through skin, very soft and velvety skin), but nothing that makes us look like we are ill. And while I’m glad I am not covered in visible signs of connective tissue disease I am at a major disadvantage when it comes to getting the relief I need. It doesn’t help that doctors are poorly educated on this group of diseases either. I have a lot of trouble describing what exactly is going on with me in a way that normal people can understand and that causes some issues as well. It would be nice to have the normal, everyday people who I have to interact with understand what I am going through and what my limits are.

SO, I’ve decided to write down some of the things that I have been told to try and better describe what our pain is like. You can tell someone you’re in pain, but about 75% of the time just saying you are hurting is not enough. Of course, only people who have gone through the following will be able to understand what this type of pain is really like.

EDS has been compared to a lifetime of chemo pain with the added nausea and tummy issues from people who have undergone chemo who also happen to have EDS.

EDS has been compared to a lifetime of lymes disease type joint pain from those who have suffered from both. (Some people even believe lymes is why so many people are now being DXed with EDS, I personally need more proof on that one.)

Imagine a time you sprained your wrist or ankle. Now apply that pain to ALL of your joints. Even ones you didn’t know you had, like between your spine/ribs (you can dislocate those by the way and it does happen with EDS).

Have you ever had an exposed nerve? Broke a tooth? Etc? Imagine that pain in your fingers, toes, and sometimes anywhere else it feels like popping up. This is from small fiber neuropathy which is caused by our collagen not being up to par. The nerve literally begins to fray at the ends causing pain that can feel like broken teeth and often shoots like a lightening bolt through our bodies.

Dislocations. Subluxations. These happen pretty commonly due to our muscles constantly being over stretched and out pops the joint. This obviously hurts and just because we can fix ‘some’ of our dislocations ourselves it does not mean the pain is any less. Sometimes we end up having to function with our subluxations or dislocations until we get to a private place or a doctor and because it happens so frequently it’s not only embarrassing it’s also a pain to have to stop what you are doing to get a joint put back together. Also, just because the joint isn’t out all the way with a subluxation does not mean it hurts any less, a lot of the time we have to manage functioning with a joint that is stuck halfway out and you can feel the bones grating on each other. So no, it’s not “not as bad as a dislocation.”

Micro tears in our muscles. We tend to hyper extend our joints which causes a lot of damage not only to the joint itself, but also to the muscles and other tissues around it. Muscle tears happen in varying degrees. As well as damage to the tendons and ligaments, which can cause them to need tightening or replacement.

Bruising and swelling happens at random, honestly not a big deal, but everything adds up.

Tummy issues. Ever had an ulcer? Imagine ulcers and blisters ALL the way through the digestive track. Especially if you’re like me and have inflammatory bowel disease as a co-morbidity.

Speaking of co-morbidity. POTs causes some discomfort that I know for a fact I cannot describe. Dizziness, nausea, sometimes I can feel each and every heart beat along with chest pain and tightness. Sometimes it comes with pain from my chest down my lift arm, much like a heart attack would. Due to the effect it has on my adrenals I end up with adrenaline rushes that cause my whole body to tremor and shake which can be very painful. My already sore muscles tighten and flinch oveer and over again from the effects of the adrenaline, this can also happen from overwork which I believe may also have something to do with adrenaline, but I’m not sure.

Gastroparesis. This I don’t think I can find a way to describe well enough, but I can try. Imagine being very hungry, you are nauseous, but haven’t been able to keep anything down. Despite the fact that you have not eaten today you feel full, like you ate 2 thanksgiving dinners when all you had was a light snack. You’re bloated and it feels like your stomach is going to pop. Not to mentioned you haven’t pooped in a week or two. And this is a never ending battle until you give up and accept to be tub fed. The severity does vary and cases can be less extreme or more extreme from person to person. This is just my account.

Chiari and cranial cervical instability. Migraines. But, worse. Along with a whole host of neurological issues I cannot do justice by describing. All I can tell you is that migraines on crack is the only thing comparable for the average human.

Arthritis feels like your bones are corroded. Almost like your joint bones are rubbing on themselves and in some cases they are. I’m using this one to sum up all types of arthritis since early onset as well as things like Disc Degeneration, Facet Syndrome, etc are involved in connective tissue issues. It’s generally a dull ache, but dull does not mean bearable and is something I cannot easily describe.

Deformities. Scoliosis, hip dysplasia, ect. These all cause pain in different ways and depend on the severity. With deformities it’s not just the joints hurting because of how unnatural they are your surrounding tissues are overworked in most cases.

Surgical pain. Nuff said. Our healing time tends to be longer than average and a lot of us metabolize opiate/opiod pain killers too quickly which leads to poor post operative pain control which then leads to poor healing.

These are the main ones for people suffering with this specific disease, but please be aware that we’re not the only ones. There are so many types of invisible illnesses that are invisible sources of pain and everyone who is suffering from them deserves to be taken seriously and given the relief they need to live their lives. Pain management should be about helping people live rather than protecting the doctors and not fueling ‘junkies’. I’d rather see drugs put in junkies hands (with knowledge of harm reduction) than let innocent people suffer and it would be nice if doctors felt the same. Unfortunately, that is not the case and it may never be.

I just got really tired again so I’ll be taking a nap. I refuse to edit this, I am sorry. I’ll probably come back and try to fix the typos, but I want to get this up. I’m tired of seeing my fellow EDSers/spoonies dismissed and hopefully this can help someone out there. If there is anything I should add please let me know. Let me know if I messed anything up too, I’m not feeling like I’m braining exceptionally well today.

<3Huggles to all,
Jenn

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