Demand that Fibromyalgia sufferers get the Pain Management we require!
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Fibromyalgia may affect someone very close to you and you may not even be aware of it. This chronic pain lasts all day long, some minutes worse than the last. You never know when you may "flare up" (a flare up is a pain so intense and widespread that you become immobile until it passes, shoulders tense, extreme tenderness and pain from your collar bone to the thighs and calves and even your heels, it comes with blinding headaches and inability to move your neck). Since there is not much written or documented regarding this illness we don't have a cure, don't know the root cause, and there is not an effective treatment plan. Many doctors will not even attempt to treat a Fibromyalgia patient because of the unknowns and lack of options. Well, us Fibromyalgia sufferers have figured much of it out on our own by forming online groups and sharing personal experiences. We don't want to be put on nerve blockers and anti depressants that cause more side effects than actual treatment. Anti depressants effect how 1 in 4 fibromyalgia patients receive pain and even when it works for those rare few it comes with a backlash of side effects from depression (which they didn't have prior), to extreme fatigue, shakes, paranoia, and much more. Eventually, it stops working for those rare few that it initially seemed to helped and they are stuck withdrawing from pills they should not have been on in the first place.
As a busy wife, mother of 4, with a full time career I do no have the luxury of waiting it out until the doctors figure something out for me. I don't want to become immobile and disabled because they refuse to give us the pain management we deserve, the pain management my family deserves. Many of us end up severely depressed because of the extreme pain we have difficulty accepting and lack of help we receive. The first step to Fibromyalgia is acceptance. You have to accept that the life you lived is over and you will have to live a new life with limitation's on stress and activity.
I was an avid hiker in my previous "well" life and a spontaneous 5 mile hike on a Saturday was common for my husband and I. Now, my hips feel like they are grinding and about to pop out of socket after a mild 10 minute walk. The grieving process was intense and the more I cried and resented my new life the more painful my body ached and the less mobile I became. Now that I have accepted a new lifestyle of lessened activity combined with minimal stress with a combination of pain medication for flare up control and cannabis oil/thc for daily sustainability, the pain, although still constant, is more frequently a level 5/6 rather than 7/8 and my flare ups are fewer at 10-14 days per month rather than 20-25 days.
When you live in chronic pain you start to see people and life in a much different light. You begin to empathize in a much deeper way. I recognize other pain sufferers by how they move and look around the room before adjusting their body or squinting from light sensitivity. It's a world I was very blind to previously and has made me realize how LOUD we have to be to make our painful world know to the "well" community because we need your help too.
The flare ups are still here, so what do we do when we feel the more intense pain coming? That is when we must rely on pain killers (hydrocodene 5mg as needed) for emerging pain at minimum. If you get ahead of the flare up early enough you have a greater chance of preventing a full blown flare that will leave you in immense, immobile, pain. If you don't, you can at least keep the edge off until that unbearable, immobilizing, tear draining pain, decides to pass. During one of my first flare ups I was in such intense pain that my wrists became limp on their own and I was unable to turn my shower knob. I broke down crying on the floor desperately seeking my old self would return and pick me up to tell me this is just a terrible nightmare. That never happened. Instead, I took a pain pill, got a hot heating pad, lifted my legs, sprayed on some magnesium oil, and let the tides pass. Eventually, the flare passed and I was tricked into thinking I could be somewhat the old Johana, but I was wrong, and a few flare ups later I learned that my super active and constant moving life was over and I'd have to find a new way of living to get my daily tasks accomplished. A way of living that would contain all day pain, weakness, headache's, and body stiffness. Don't lay down too long with fibromyalgia because you will experience the sort of stiffness you had no idea even existed (tin man from Wizard of Oz comes to mind quite literally).
So here I am, telling the world my story, because I have spoken to thousands of fibro warriors that suffer the same daily war I struggle with. Its quite a war on my body but was even more so on my mind in the very beginning. Now that my mind has adjusted, I am here to DEMAND better pain management from the medical community. We are being let down by our doctors who are too afraid to treat us because its not "an official form of treatment". Says who, the guy behind the keyboard whose wrists feel just fine when he types? Because mine are about to fall off from typing this up, and just last year I could write you a 20 page paper in less than 2 hours. Life has changed and the medical community needs to recognize that as well. We need your help to get pain management. No, we will not accept anti depressants and nerve blockers as the medical communities safest and most profitable way out! They don't work!
Give me daily cannabis oil with a small amount of thc combined with AT LEAST 10 days of hydrocodone. I say 10 ten days, because the cannabis oil may likely control our flare ups at least 2 out of 3 days if taken properly. Unfortunately, without a root cause or cure the flair ups are inevitable and they are too painful to function under. It should be considered a criminal act that doctors allow us to suffer knowing the all over body pain we are forced to manage through, criminal! The main reason they refuse to give pain medicine is because of the opioid crisis. My answer to that is limit us to a set number of days relief with pain meds that, as adults, we can take and control on "as needed" basis. We learn to live with pain and we accept it so we are not requesting pain meds all day, every day. It is impossible to become addicted at 10 days a month and at the very least we have earned the right to be responsible for our own painful emerging pain and flare ups. We are adults and we are in pain!
We DEMAND pain relief through a the following at a minimum mix of: thc/cannabis oil for daily sustainability and 10 days worth of pain pills for controlled flare up management. We REFUSE to sit around in pain, becoming disabled one by one, and being fed with ineffective treatments. If anyone understands PAIN it's a fibromyalgia patient! Please note that this request is "at minimum" since most doctors don't even offer flare up maintenance with pain pills at all for us suffering in tremendous pain. Once a minimum is established on a national level individual dosing should be discussed between patient and doctor, on an individual level, since each person is experiencing different levels of pain. I ask you to stand by us by signing and sharing this petition so that it gets the attention of people who can make it happen. We need it here and we need it now.
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