Pain Increase


My neuropathy has been steadily moderate now, but I’ve been experiencing muscle spasms. I slept on my heating pad all night. My upper right back, right along my rib cage is in knots. It began as I was settling into bed last night!

I applied my ketaprofen cream again a little while ago. I hate popping pills that barely work, so this topical alternative is really great and doesn’t contain any skin irritants. The compounding pharmacy is local, so they personally deliver it every month which is awfully handy for a shut-in such as myself (forced as it may be) .

I’m supposed to start Hyalgan injections in both knees, but my skin has been so bad lately, that I’m trying to deal with one thing at a time. Plus, I’m not looking forward to a needle being jabbed deep into a joint. Shots are fine and pain is just relative, but the crunchy sound of a needle inside a joint makes me want to throw up and pass out.

Monday I’ll have to finally schedule with my dermatologist and orthopedist. I want to at least manage what symptoms I have now. I have been praying the Hyalgan will help my knees enough to take the stress off my hips which are even worse.

My hips subluxate and dislocate daily. Sometimes just from going from sitting to standing. It is usually only excruciating for less than a minute or two, thankfully. The worst is when others try to help. I nearly headbutted the neurosurgeon at Cushing Neuroscience when he was testing strength in my legs! He was apologetic and reached out to help and I’m not positive, but I’m pretty sure I told him “get the fuck away!” It’s similar to someone asking “are you OK?” right after you slam a finger in a car door. Shut up and go away! Do I look OK?

Yes, pain creates frustration and even anger imagine that finger slammed in the door repeatedly on a daily basis. Could you keep your cool? Could you even focus on anything else?

That’s the best way I can describe what Ehlers-Danlos Syndrome related pain is often like. It’s a very difficult concept for a healthy person to grasp, and understandably so. As a kid, I couldn’t find the words to explain “I’m hurting and this is not normal!” I was just seen as overly sensitive. Kids do sometimes overreact or seek attention, but in my case, I hurt so badly and had no way to adequately describe it to anyone who could have possibly helped. Instead, I suffered silently and learned to suck it up and tough it out. I’m trying to unlearn that and seek medical attention when needed, but it’s a really tough thing to unlearn! No wonder I was an anxious introvert who was constantly tired as a kid!

I’m learning to ask for help when necessary. I’m also trying to cope with years of pain gone unnoticed. It’s a process to say the least! I feel very alone in it all. The pain, the housing issues, finances, transportation, etc.

How do you cope with pain and others not understanding? Have you been able to solicit the help of anyone who previously had no interest in helping? I’d appreciate any input!


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