Nine Things I Wished I had Been Told When Diagnosed with Fibromyalgia and Psoriatic Arthritis

Nine Things I Wished I had Been Told When First Diagnosed with Fibromyalgia and Psoriatic Arthritis

Welcome to part one. 1> 2 3 4 5 6 7 8 9

Receiving a diagnosis of an autoimmune disease is overwhelming. There is so much to take in, especially if you have no knowledge about your diagnosed disease and weren’t expecting it.

While there are many resources available to educate us about our symptoms and treatment options, there aren’t many resources for patients to be made aware of the changes that will at some point or another become an issue in their personal lives.

I received both my psoriatic arthritis and fibromyalgia diagnosis fairly quick and easily. In fact, I hadn’t even suspected psoriatic arthritis or anything beyond fibromyalgia and endometriosis (which is a whole other rant for another day). It was my rheumatologist who spotted the state of my toenails during a visit that prompted him to test for it.

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What I was told after each diagnosis was the following:

  • There isn’t a cure.
  • We can decrease your pain with medication.

That’s it!

That was in 2003. Nothing was shared either in the form of a conversation with my doctor or pamphlets available his lobby that could or would have prepared me for what would later follow. Sadly, I don’t see much difference today.

#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!

I could have saved myself a lot of heartache and frustration had I been warned about and/or educated in the subject that I am sharing with you today.

THE MESS MY CHRONIC ILLNESS WOULD CREATE IN MY MIND

Mental Health

Living with daily pain from a chronic illness will take a toll on your mental health.

It is common for those who have a chronic illness like fibromyalgia and autoimmune arthritis to battle both depression and anxiety.

Patients need to be warned of the emotions they will experience. They also need to be reassured that it is perfectly normal to mourn their old lives and to get frustrated with their bodies.

stages of chronic illness grief

They need to know that their doctors recognize that the depression and anxiety that follows a diagnosis is normal and won’t be used against them.

For example, many patients will not discuss feelings of depression or anxiety out of fear that their doctors will turn the tables and blame their chronic pain on those feelings. This has happened to me.

Depression and anxiety do not cause arthritis! Poorly managed autoimmune diseases cause depression and anxiety!

What could help a newly diagnosed patient

  • A pamphlet or similar resource outlining the stages of grief and how they relate to losing the life they had, the one that didn’t include having to think about one or more illnesses every day.
  • Help patients understand that while it is normal to go through stages of depression and to feel anxious, it is NOT normal to feel this way 24/7. Provide resources to help patients recognize when they need to reach out for help and who they can contact for said assistance.
  • Most importantly, patients need to know that thoughts of suicide are possible and that they need to reach out for help if they are experiencing any. If you are currently experiencing thoughts of suicide please contact the National Suicide Prevention Hotline at 1-800-273-8255 or click here to chat with someone online now.

Thank you for reading part one of this nine part series covering the topics I wish my doctors would have talked to me about when I was first diagnosed with fibromyalgia and psoriatic arthritis.

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2 thoughts on “Nine Things I Wished I had Been Told When Diagnosed with Fibromyalgia and Psoriatic Arthritis

  1. This is a really important post Cynthia! Thank you for sharing. I can totally relate to the graphic you made of the stages of chronic illness grief. I agree, doctors need to put more information out there and share rescources with newly diagnosed patients.

    Liked by 1 person

    • Thank you. I think many, myself included, were confused by the overwhelming surge of emotions and issues we found ourselves dealing with. Looking back I can see how having this information would have been helpful if for no other reason than having an idea of why I was experiencing them.

      Like

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