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.
#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!Tweet
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.
All Pain Relief Options
There is NO one size fits all pain management plan! #painrelief #fibromyalgia #autoimmunedisease #arthritis #PsATweet
To expect millions of people who are as different from each other as the sun and moon are to find relief from one, two, or even three options is absolutely ridiculous!
What we need are pain management plans that address us individually, not as group.
The problem is that doctors and pain management clinics aren’t listening to us or taking our differences into consideration. Instead, they are following the same step by step plan for all and hoping that one of the steps on the ladder will help.
I lost over a decade of my life due to doctors not willing to talk about or suggest alternatives to what wasn’t working.
Reasons why I didn’t try any alternative or natural options:
I relied solely on pharmaceutical pain medications for pain relief for the first ten years following my diagnosis. Here is why:
- My doctors didn’t suggest them
- When I did inquire about a natural or alternative option, my doctor quickly dismissed it
- I was afraid to try anything that wasn’t approved or prescribed by my doctors
- They were expensive and not covered by insurance
- At the time there wasn’t a lot of information about them online
- Not every option was legal where I lived at that time in my life
During those ten years my health plummeted. I was diagnosed in the fall of 2003 and was bedridden by 2013. In addition to the pain and inflammation caused fibromyalgia and psoriatic arthritis, I suffered from a long list of prescription side-effects. No longer having the ability to stand, walk, or sit with our experiencing blinding headaches and excruciating pain, I had had enough.
To be clear, just because they did not help me, I am not suggesting that pharmaceutical pain medications are useless for everyone. Our bodies are not the same and do not react to medications in the same manner. I just happen to be one of the .001% who has an allergic or negative reaction to most medications. Nothing I state in this article is to be mistaken for medical advice. I am just sharing my experience and what would have helped me.
A few years prior I had moved to California where medical marijuana was legal for patients with a recommendation. Again, lack of information is what held me back from trying it. However, by 2013 I decided it was worth a try since pharmaceutical medications weren’t helping. Long story short, making the decision to try cannabis was one of the scariest and yet most wonderful decisions of my life. The sad part is that I could have avoided at least three years of agony had I applied for my recommendation as soon as I moved to California.
Doctors should discuss all pain management options with their patients, not just the ones they are paid to or can prescribe. #fibromyalgia #PsA #autoimmunearthritis #chronicpainTweet
I later tried and experienced significant improvements with PEMF therapy after my doctors told me that there was nothing they could do about the abdominal pain I was experiencing from adhesions. When I shared the results with my doctors, they treated me like a toddler who just showed them their macaroni necklace. They didn’t want to hear about it.
The sad part is later that same device eliminated the crippling back pain that doctors told me I would never be rid of. It also stopped the maddening nerve pain from a surgical error that doctors swore nothing could be done about.
Patients should be able to discuss ALL #painrelief options with their physicians. #fibromyalgia #PsA #nervepain #backpainTweet
What could help a newly diagnosed patient
- If a pain relief treatment is legal in the state or country of a patient, doctors should be willing to discuss and share information about it with them.
- Provide patients with a list that includes pharmaceutical, natural, and alternative pain relief options.
- Listen to patients when they ask about or share a treatment that you haven’t had experience with.
Thank you for reading part five 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.
- 1 Mental Health
- 2 Therapy is Important
- 3 Intimacy Issues
- 4 What is Health Journaling?
- 5 Pain Relief Options
- 6 Relationship Troubles
- 7 Need for Assistance
- 8 Importance of Self-Care
- 9 Keep Moving with a Mobility Aid
- The Cost of Living with Fibromyalgia
- Invasion of the Brain Snatcher! Tips for Dealing with Fibro Fog
- Four Wearable Pain Relief Devices for Fibromyalgia and Arthritis
- Seven Embarrassing Fibromyalgia Symptoms
- F words that describe what it is like to live with Fibromyalgia
- 5 Ways to Reduce Fibromyalgia Pain