Anger in the Chronic Pain Community

There is a lot of anger in the Chronic Pain world right now. It is showing on the support group in a lot of ways!

Anger at the government for reducing the amount of opioid production. Anger at the Doctors for decreasing the number of opioids you are allowed to take or stopping your opioids completely, some of them cold turkey. Anger at the pharmacy, because they are only filling your prescription a week at a time, even if you have a 30-day script and then treating you like you are an addict in the process. Some Doctors are making you bring in your bottle and are counting your pills before they will renew your prescriptions and some pharmacies are doing the same.

The government is raiding Doctors’ offices and finding stashes of drugs they aren’t supposed to have, making it more difficult for the Doctors who are doing things right. This is causing Doctors to be fearful of prescribing opioids. The government is watching. Some Doctors are not only losing their licenses to prescribing opioids, but their practices as well. They are scared and angry too.

The government is also limiting the opioids that the pharmacies can dole out to patients. They are also being watched. Do you think they want their long-time patients in pain? I doubt it.

Then there is anger at the news, because every time you turn it on there is another story about the opioid epidemic and you think they are talking specifically about you, but you are wrong. And so are they! The government got the cart before the horse on this one. I hope someone is listening.

I live in a small town and every week there is another opioid death in town. 35 miles away is a larger town and there are usually 2-3 opioid deaths a week in it. Then there is the violence. It is increasing, all in the name of drugs. The drugs that we have, have nothing to do with this, but we are being labeled as drug addicts, and it isn’t fair. Still, there isn’t anything we can do about it just the same.

Now, this show is not a political show. This show is about Chronic pain and although opioids do not help Fibromyalgia by itself, very few of us have just Fibromyalgia, right? I would say that 99% of us have another, if not more than 1 chronic pain disease. For myself, I have RSD/CRPS which is the worst pain known to man and I know there are many of you who have that too! If the doctors cannot get that under control, the ONLY way to maintain any kind of life is with opioids. I for one, couldn’t have survived without them and my faith, at that time! Then, there are people with scoliosis, degenerative disc disease (raising my hand), rheumatoid arthritis, osteoarthritis, failed back surgery, several herniated discs, spurs on their spines, broken backs that didn’t heal properly, broken hips that didn’t heal properly or are still healing after years of having been broken (raising my hand), phantom limb syndrome, the list continues. Personally, I have several chronic pain issues.

Did the government even think about the Chronic Pain patient before they started this campaign on opioids? It doesn’t seem like it. Hopefully, the US Pain Foundation will develop the 2 projects to start addressing how to treat ’substance abuse disorder’ and accelerating the development of non-addictive pain therapies that they met about in October. The plan was to have Common Fund Projects in place by next month, but it was to be set up on a grant basis and the Office of Pain Policy and Pain Consortium has of yet never received a grant. When asked about that, Dr. Francis Collins, the NIH director said, ‘chronic pain is an important topic, especially at this time and it was being given very serious consideration.’ We will see won’t we. We cannot be silent!

The problem isn’t us. The problem is the illegal drugs on the streets and the families going to the streets to get them because they break their legs, or such, don’t get off the drugs, and end up buying drugs off the streets. The problem is the government allowing pharmaceutical companies to legally develop synthetic heroin drugs in the first place and the doctors handing them out like candy while getting kickbacks. What they should have been doing instead was creating non-addicting pain medications in the beginning, years ago, so that the Chronic Pain Patients could actually survive and maybe even do more than that.

So now, we the Chronic Pain Patient are being punished because the government is cracking down on the wrong population. Okay, with that being said out loud for all of us. We have to stand up for ourselves. Write to all of your representatives in the house and senate in your State and at the Federal level and tell them what they have done to you and explain that they have just caused suicide levels to rise and that it all lays in their hands because of their votes. Also, let them know that the problem doesn’t lie with the Chronic Pain Patients who feel like they are being punished by the way they are being treated by their Drs and pharmacies.

There is a lack of education and they need to be addressing the dangerous drugs on the streets.

So, now with all of that said, we have to turn back to ourselves because it has always been dependent upon us to do what we need to get things right. No one believed in our symptoms for, sometimes 4-5 years, sometimes for up to 8 doctors. Sometimes, they give us such dangerous drugs, but they don’t tell us what they can do to us and we don’t find out about it unless we have an adverse reaction, are in a support group where we hear the truth or we die and then authorities blame it on the opioid instead of the real reason.

Most times, for chronic pain patients, if someone dies, it isn’t the opioid, although that is what is blamed, it isn’t even the other nasty medications they prescribe for us. No, sometimes, it is our hearts because it has put up with such unimaginable pain for so long, it just gives out. Autopsies are just now finding these truths.

Still opioids are getting the blame and we are suffering for it.

So, although the anger is warranted. We need to handle ourselves in a mature and adult manner. When dealing with people, either online or in public, there is such a thing called civility in this world. All the rules of kindness to others have NOT been thrown out the window, even if we are in pain and people treat us rudely. We can show the world that we are better than that, bigger than that. We are Fibro Fighters and we will win, even if we have to do it by ourselves!

Yes, the government has failed us, the medical community has failed us again and again. Okay, now with all that said, yes, our anger is warranted, but it is time for it to stop NOW.

However, there is one thing left, and this will never fail because we still have each other! We will always try to help each other to lean on, one way or the other.

The first thing we have to do, is throw our fear aside and be open to try new things. The government moves slowly to change and you are not going to change your Doctor’s mind or the pharmacies way of treating you. Be open to try new things before your Dr cuts your opioids completely to see what you can do to help yourself.

So many of you are already saying, ‘if they take my meds away that will be the end of me.’ You need to STOP thinking that way! Truly! You are setting yourself up for failure! The negativity in that statement is just heading you down a dead-end road! The very first thing you need to do, is get into a Psychologist to help you with the fear, anxiety and anger. Let this person help open you to trying new things. There are free clinics, if you cannot afford a Psychologist. Try one.

There are medications that help with things like muscle spasms and such, there are also exercises you can learn at home to help. Also with that too is superior nutrition that replaces the nutrients that are stolen from our bodies daily from Fibro and our other diseases, plus vitamins like Vitamin D3, Magnesium Glycinate which is especially for Fibromyalgia and Calcium. Vitamin C for your immune system. Have your Dr., yes, they are still necessary, do blood tests to see where your levels are.

Did you know drinking unsweetened cherry juice might help Fibromyalgia pain? Did you know that going on a Gluten Free Diet might help Fibromyalgia pain? Did you know if you go on the Fodmap Diet using the Stanford site for it, that not only might it help your Fibro, but it might help your gut too? Did you know if you stop drinking pop/soda whether it is diet or not, that it will help your Fibromyalgia pain? Did you know if you stop drinking anything with caffeine it will help your Fibromyalgia? Did you know if you stop eating chocolate, lower your sugar intake and lower your carbohydrates you might help your Fibromyalgia and lower your chances of developing Diabetes Type 2. What you eat definitely affects your Fibromyalgia.

Stretching of your muscles, without overdoing it, can help with muscle cramping and exercises at home can help with muscles to stop atrophying. On the support group, Your Fibromyalgia, I have some videos showing the home exercises I was taught to do.

All, these little things I have been taught, I have shared with you along the way. Plus, both on the Support Group and on deblundquist.com there are articles to help you with other ways to take care of yourself.

Sometimes, pain and anxiety are simply mind over matter. Now okay, don’t get mad about me saying that. What I’m talking about are learning coping skills that really work. That takes time to develop. I can pop into a coping skill into 10 seconds, but don’t think I learned how to do that in 6 months! My mother started teaching me how to do that when I was 10 and I couldn’t sleep at night. Oh yea, I started early. I still do these today! A good psychologist can teach you these.

The same with learning relaxation skills. The physical therapists and massage therapist will tell me to relax and I’ll say okay. I’ll say okay. I’ll take a really deep breath and by the time I let it out, I’m completely relaxed, everywhere. They are always shocked and ask how I do that. They always say they have never seen anyone be able to do it like I do. Well, my first psychologist was great! She is the one that taught me that. She taught me in one session. By the end of it, I was sound asleep. She couldn’t believe I learned so fast.

Then, there is biofeedback that a Psychologist can teach you. You have to learn to listen to your body. Listen to it, act accordingly, but you have got to move or you will only deteriorate and your pain will only increase. This is entirely up to you!

When you get angry because your body is doing things that you wish it would stop or all the anger we were just talking about, you need to put your anger in a box and put a lid on it. Your anger only makes your adrenal glands more stressed (we talked about this before) and the more stressed the adrenal glands are, the sicker you will feel.

When I worked at Green Giant Mushroom Farm, part of my history you don't know about, I had a picker help me through my divorce. He always knew what was going to happen just before it did and told me what to do to protect myself and my son. Anyway, right before this happened, I had had a very upsetting meeting with someone I should have been able to trust. I had come back to work, I think more upset then I can ever remember feeling and I had absolutely no one I could talk to. I still had my coat, hat, and mittens on and I was sitting at my desk typing on an ancient typewriter with no paper in it. I was smashing the keys very hard. Tears were flowing down my face. I wouldn't talk to any of my supervisors, I only had 19 (lol), I wouldn't talk to anyone. So, someone went and got one of the pickers, PeeWee, a nickname. He came in, grabbed the biggest and ugliest yellow ashtray you ever saw and put it next to me on my desk. Then, he took a 5-gallon plastic tub and turned it upside down and sat on it right in front of me. He started talking to me. He knew I was getting a divorce and so he figured I was upset about that. That wasn't it, well not completely. He just kept at me and the more he did, the madder and more upset I got. He kept saying 'throw the ashtray, throw the ashtray.' Finally, he got me so upset, I threw the ashtray at his head and missed by an inch. I burst into tears and everything burst out. I told him the whole story.

Well, you take your anger, get a box, get something that you don't care about and you break it in that box and shut that lid. You leave that anger in that box and start thinking about positive things.

Another thing you can do is, get a pillow and bury your face in it. Then scream and scream into that pillow for all you are worth. Scream out all your frustrations and all your anger into that pillow. Then when you are done, put the pillow down and wash your face with a cool face.

You still have a brain and a heart and courage! This might not be the ‘Wizard of Oz’ and I am certainly not a ‘Wizard!’ But you can get past this!!! Anger doesn't do you any good.

You have to get past the anger to be able to move forward with your life. Anger is going to drive everyone in your life away and leave you completely alone. Is that what you really want?

Yes, it is frightening to think about getting off of opioids. I have had to do it 3 times. The first time was when the Dr put my RSD/CRPS to put to sleep after 4.5 years of excruciating pain. We weaned me off of high levels of Oxycodone and Hydrocodone. It took me several months. I hated the shaky feeling and later I discovered that if I had felt shaky, I was pushing it too fast and could have had a heart attack. After 4.5 years of being on it, I was afraid I would be addicted, but I was dependent, so that I surely didn’t want any Advil or even Tylenol after that.

Then, I broke my foot. I was back on Hydrocodone for 16 weeks. I didn’t want to be! I really didn’t want to be, but I couldn’t handle the pain. I slowly worked myself off of that, but I didn’t have to worry about it. I wasn’t on it that long.

When I broke my hip, in 2 places, I was on Hydrocodone for a long time, I think 8 months. I was afraid to go off that because I was still in pain, but I went off of it anyway because I was afraid to be on it longer. You see there are ways to handle your pain and I had learned to do it.

My RSD/CRPS has come back now and again and I’ve had to use Hydrocodone for that until I could get another block, until this last time, when I used my oils and of course, the Limu.

So now, when the RSD/CRPS, I don’t have to use pain meds until I get a block. I have my oils, Limu, my coping skills, biofeedback, relaxation, my happy place, my sleeves, and I can handle it. Not only can I handle it, not only can I survive, but I am thriving and so can you. You just have to take that first brave step without fear and anger.

The Box

 Written and copyrighted by Deb Lundquist, 3/2000

 Life is ever changing and yet it always stays the same.

We will evolve with each event and reinvent life's game.

We place ourselves within guidelines in which we live and stay

Working and playing as we expect, our lives, they never stray.

We live within a box with tall sides that we have created.

As long as we stay inside, our potential is ill-fated.

So, should we climb up to the top and see what is outside,

Or safely stay within our box where we can live and hide?

This question we all will answer as we mature and grow

After we are old and the box shuts tight, then we will finally know

If we should have taken a peek when we still had the chance

To see if a new direction would have helped our life perchance

There is still time to be brave, to stretch real high and look

And redefine how we will live, take life's coat off its hook.

Go out and knock down those walls that created our own box.

Destroy the chains, uproot the fence and throw away the locks.

Look past our world where we have become compartmentalized

And reach beyond our hopes and dreams that we have realized.

Spread out our wings and our minds, and reach to the sky and fly.

When time is past and all is done, we'll know the reason why.

For me that means the disability that no one else can see.

I've set my limits, built my box and relegated me

To an existence so defined I do not wander far.

Being scared, I forgot to stretch and reach for my own star.

But now it has been brought to notice, I am misdefined.

My existence as it is now, is quite plainly too refined.

I must experiment and stretch beyond my safety net

And touch the things I fear the most and see where I might get.

Yes, there will be things in life I will not be able to do,

But there are chores that lay dormant I truly need to pursue.

Until I try I will not know what can or cannot be done.

I'm more then a patient. I'm a wife, have a daughter and a son.

I'm a person with a mind, a heart, a purpose to fulfill.

I'll not let my disability destroy and plunder at will

Or make me useless in this world for I am still viable

Working with others and learning how to become more pliable.

Helping those new to this disease, and help their box destroy,

Tears down my walls, my fears and gives hope and true joy.

Even though I have RSD, blessings I'm still receiving.

With these maybe in some small part I can help others grieving.

The world is hard, but it will win only what we allow.

We must stand proud and with our strength we will win somehow.

But only if we escape the box which has become our jail.

We can succeed! There is hope! In this we will prevail!

(This poem was written as I tried to overcome my fear of driving and my fear of large vehicles on the road. This fear reared it's big, ugly head after my accident that brought on the RSD. It took a while to own up to this fear and as my husband and I drove to the doctor I wrote this poem. Amazingly, in counseling that day, the doctor told me I had to destroy my box. I thought it was interesting that this poem was written before our session. I have since learned to drive again without fear and semis don't even frighten me any longer. I can even drive downtown Chicago! So, see, there is hope! Little steps can begin tearing down very large walls indeed.)

May you have pain free days, with smiles and love.

Deb Lundquist

Deb Lundquist
 

After 18 years of living with this as a roommate, I feel I know Fibromyalgia well. Now, it is my passion to help people with Fibromyalgia and chronic pain take back control of their lives.