What to Expect When Diagnosed With Fibromyalgia

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Well, if you’ve received a fibromyalgia diagnosis then you have already been dealing with a catalog of symptoms and conditions that have made life difficult or just plain hell. The great news is that a doctor has finally affirmed what you’ve been saying for so long – something is wrong. The bad news is that the diagnosis doesn’t actually change your symptoms. Alternatively, you may be one of those people trying to figure out what on earth is going on with your body and are digging like mad because not one doctor has been able to identify the culprit. If that’s the case, then what is said going forward probably won’t shock you. Either way, even though this won’t be easy, it is doable.

Of course, everyone is different. But for many fibro patients it feels as if they have the flu every day of their lives, like they haven’t slept in days despite a full night’s sleep if they are lucky, and/or as if they are in a constant state of feeling hungover. In other words, for so many with fibromyalgia, their standard operating procedure comes from what others would call a sick day. It’s no walk in the park and unfortunately often expresses with minimal visible manifestations other than being bed-bound, walking with a cane, and looking like you have been tortured by the government using sleep deprivation and maybe the Barney theme song. Although there are manifestations that accompany certain symptoms, but they aren’t the kind you show to anyone. In other words, there is no cast for anyone to sign and thus feel inclined to bring you that desperately needed glass of water or lift your leg because you seriously need to readjust but simply can’t. And so, you secretly wish that those who don’t believe that something is definitively wrong with you had to experience your symptoms for at least one day – just so they would shut up and hopefully understand even a fraction of your pain.

The List

So the standard symptoms are as follows, but remember that since everyone is different, these vary by degree and expression, depending on the individual. Also note that the list is not comprehensive.

  • Cognitive and memory problems (aka “Fibro Fog”)
  • Sleep disturbances
  • Morning stiffness
  • Headaches
  • Irritable bowel syndrome
  • Painful menstrual periods
  • Numbness or tingling of the extremities
  • Restless leg syndrome
  • Temperature sensitivity
  • Sensitivity to loud noises or bright lights

Oh, did I mention chronic pain and fatigue? In fact, here are more symptoms that fibro patients report:

  • Chronic muscle spasms and tightness
  • Chronic severe fatigue
  • Decreased energy
  • Insomnia
  • Waking more tired than before you went to bed last night
  • Difficulty performing simple mental tasks (more of the Fibro Fog)
  • Jaw and facial tenderness
  • Abdominal pain, nausea, bloating, and constipation
  • Anxiety
  • Depression
  • Chronic migraines
  • Feeling of swollen hands and feet without any visible swelling
  • Allodynia: extreme sensitivity to touch, even clothing

Don’t panic. These are not all happening at one time, but it’s common to experience several of them at once. And they can come and go, sometimes with no known triggers. Sometimes you can feel them coming and other times you can’t. Every day is an experiment, but journaling about food, experiences, and interactions can be helpful in identifying certain triggers.

Now What?

So what can you do if you have been given this diagnosis? First, relax in knowing you aren’t crazy and that an actual healthcare professional has finally listened to you. Second, remember that even though it’s awful, it’s not terminal so it could be worse in that sense. Third, take all of this one day at a time. Fourth, accept it and work with it. It’s a lot less draining than fighting against it. Fifth, surround yourself with supportive people! Not the “Don’t worry, it’ll be okay” kind, but the “Don’t worry, we’re going to get through this together” kind. Remember, fibromyalgia isn’t easy, but you will survive it and hopefully you will figure out ways to thrive despite it. Oh, and if you’re here because you have a loved one dealing with these symptoms…be supportive, compassionate, and understanding. That will go a long way in helping them recuperate a little faster because you’ve taken a load of stress of them.

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