One of the secondary symptoms of ME/CFS and the main symptom of fibromyalgia is chronic pain. I honestly don’t remember pain being a major problem when I first fell ill, but it came on slowly as I kept trying to push myself through the fatigue, but it did eventually become the main reason I had to stop working.
The pain from fibromyalgia is a lot like the ache you get when your body is fighting a viral infection, but it never goes away. Of course, it can feel better or worse depending on the day, but it’s always there. It is felt all over the body, but you can have areas that hurt more than others, often around the 18 “tender points” of your body.
When these points are pressed, the pain response is heightened compared to those without fibromyalgia. Sometimes, even a light touch of any of these tender spots (or anywhere on the body!) can trigger an abnormal pain response. This is usually how some doctors will diagnose someone with fibro if everything else has been ruled out.
My fibromyalgia pain varies from day-to-day, but my baseline level of pain is manageable. At least for my level of activity. I haven’t had a major debilitating flare for a few years now, but I have to admit that I’m scared of upping my activity in case I do. I definitely try to take advantage of good days by dancing though. Dancing is my absolute favourite way to move my body.
In addition to the pain from fibromyalgia (and ME/CFS, to a certain extent), I also have interstitial cystitis, endometriosis, psoriatic arthritis and peripheral neuropathy.
Interstitial cystitis is a bladder and urinary tract pain disorder that causes pain in, you guessed it, the bladder and urinary tract. I am lucky enough to not suffer too much from bladder pain, but urination for me is like a permanent urinary tract infection. It burns every time and remains painful for up to half an hour afterwards. And because peeing is entirely unavoidable, I just have to deal with it. I had urethral dilation surgery because they thought it might have been a stricture causing the pain, but nope. It’s ~idiopathic~.
Endometriosis is a disorder that causes pain when the tissue that is supposed to grow inside the uterus decides to grow elsewhere. I am VERY lucky that I only discovered I have endo by accident. The birth control I had been on since I was 16 was masking the symptoms, and it wasn’t until I came off it that I started experiencing pain. Going back on birth control treated the pain, so technically, endo doesn’t really affect me, but it still counts because it’s pain I would otherwise have without treatment.
Psoriatic arthritis is a joint inflammation disorder that accompanies psoriasis. My right hip is my most affected joint, but I also get arthritic inflammation in my knees, toes and thumbs. My arthritis flares aren’t as frequent as my fibro flares, so they don’t bother me too much, but they are definitely worse than my fibro flares when they do happen. Thankfully, they are better managed with painkillers so it’s not so bad!
Peripheral neuropathy is a nerve pain disorder that affects the nerves that run down your arms and legs. I started experiencing burning and tingling pain in my arms and legs that was very different from my fibro pain after getting COVID in March 2023. Thankfully, this pain has also been lessened by treatment with tricyclic antidepressants, so it’s not as bad as it used to be and I can make it through the day without feeling I’m on fire or being zapped to death.
As you can probably tell, the unpredictable nature of chronic pain is, like fatigue, freakin’ annoying. People often can’t take you seriously when you say that you’re always in pain because you eventually get used to a baseline and it only appears to be a problem when flares happen. And those flares can happen whenever for whatever reason.
PLEASE NOTE: I am not a medical professional. Any information or advice provided in this entry is for general purposes. Please read the disclaimer for more information, if you haven't already done so.