About a year ago, I learned that I have severe osteoporosis. I was literally, blown away by this news because I was a lover of all this dairy. But this was caused largely due to medications that were stealing calcium from my bones or not allowing it to absorb into my bones. On top of this because of my debilitating diseases, I was not getting any exercise. And if you aren’t doing weight-bearing exercise, your body is not being instructed to build bone.
Now, at my diagnosis, I’m sure that my doctors said to try to exercise some. But they never gave a “why” to exercise even though it hurts. No one said, “Look, if you are moving then down the road you will have osteoporosis.” And though it was the drugs they prescribed, they didn’t instruct me to get a DEXXA scan earlier than the typical age of 65.
Seriously, friends, when it comes to your health, you best be checking those medications and seeing what you are up for. You better take the things your doctors do say seriously. Do your research and ask questions. Don’t assume that your doctor is doing everything he can for you.
When we receive severe diagnoses, it can shake us to the depths of our souls. And many times, we don’t hear anything the doctor says after that. The last thing you need to do is sit down and give up. Let’s review a few things our doctors may or may not have expressed to you at that initial appointment. These are some things I neglected to do and have learned the hard way about it.
It started with tenderness around my elbow. I was a bit concerned because allergic reactions tend to start at the elbow for me. But I couldn’t figure out what was different in my life. About a week later, little blisters broke out, and then, oh the itching and pain! Y’all, you do not want to experience this. Did I somehow contact poison oak when they were removing trees from our backyard?
If you know what this is, you probably already have it or someone in your family does. So, You may be wondering what is osteoporosis (OP). In short, it’s a weakening of the bones where they are becoming less dense. If you took a crosssection of a healthy bone, you will find that there are small holes throughout it; however, when you have OP, these holes get larger and larger (less density) causing your bones to more easily fracture or break.
image credit Mayoclinic.org
So what causes osteoporosis (OP)?
I would like to share a bit about this because, in 2021, I received a diagnosis of severe osteoporosis. I was shocked. Being a dairy farmer’s girl, I have always loved my dairy foods. And even though it has been many years since I was on the farm, I still eat plenty of it. I have also, always had great posture. So why did my bones get weaker? What else may have been causing the problem?
Once I finally had a diagnosis, I was able to get on a regimen of Savella. This relieved the majority of my pain. At least I was able to move about. We started working on reducing my 40mg of prednisone down to a more acceptable level. This was no easy feat. The pain would return with just a slight decrease. If I remember, we had to reduce by 5 mg, and then later only 1 mg. (I only recently was able to get completely off the usage of prednisone. It took me ten years!)
It’s Off to the Orthopedic Surgeon
But it only took a few months for my knees to begin to swell and be painful. So, we headed to Hughston Clinic. After x-rays and MRIs, the doctor determined that I had a torn meniscus. So we scheduled surgery. How wonderful that Dr. Collins is a Christian. By his request, he had prayer with me before we went into the OR. His staff is amazing. They checked on me several times after the surgery. I highly recommend Hughston Clinic if you live in SW Georgia.
The surgery went well, he was able to repair damage and clean out a lot of arthritis. He took pictures that showed a lot of gnarly mess. So when we met with him again, he said he would send me back to Mayo Clinic because he wasn’t certain that it was just osteoarthritis.
Back to Mayo Clinic
Already established at Mayo, it wasn’t as difficult to get an appointment. I saw my rheumatologist. He looked at the pictures and said, “This is severe osteoarthritis”. OK. No Surprise here. I was very accident-prone on the dairy farm. As a child, I was always incurring stupid injuries that weren’t too severe. I figured then that one day, I would have plenty of arthritis.
While he felt the diagnosis for knees was osteoarthritis, he decided to run the tests for rheumatoid arthritis again. Low and behold, this time it came back as R.A. We had caught it early so I was able to take Methotrexate rather than a biologic.
Why Didn’t It Show Up Before?
Apparently, the prednisone was masking the RA. I had been concerned this would be a problem all along. The steroid helped me “feel” pretty darn good, But in fact, steroids are an anti-inflammatory drug. So the numbers in the blood work came back good. I figured the steroids caused my numbers to be all over the place when I was tested back home.
photos from pixabay-Bolova59
The Methotrexate has kept the RA pretty much under control these 10 years. Osteoarthritis of the knees continues to be aggravating on a daily basis. Other fibromyalgia pains and other issues keep popping up now (10 years later). So, we are considering other medication options.
Stillness is hard, especially when you are hurting or scared or worried. Whenever I hear this Bible verse I am reminded of working in the strawberry fields.
John Joannidis from pixabay
When I was in college, I worked at a strawberry patch every summer. Now, this was not just a little patch of strawberries in our backyard. This was acres of strawberries. I worked through the season. So I was cleaning fields to keep out weeds and ready them for the public to come and pick strawberries. Now when strawberries are blooming, guess what else might be around. You guessed it, bees.
One day, I was working the fields when suddenly I found myself working in the same place as the bees. And I was surrounded. Why couldn’t this be one of those times when you find yourself frozen and cannot move?
It’s Hard to be Still
No … My mind was saying “BE STILL… BE STILL and they won’t bother you. Just go about your own business. Keep pulling weeds.” But my body was flailing, my feet were doing some kind of new dance. My arms and hands were waving and swatting the air. And no matter how much I tried to stop, I could not convince my body that I needed to just stop and quit moving. (My brothers had a good laugh imagining this when I relayed the story to them.) Somehow, I finally did find a way to still myselfwithout getting stung.
Here’s the point.
The bees need to be there to pollinate those strawberries. We wouldn’t get those sweet, delicious strawberries without the bees.
It’s that way in life.
Those trials are there to help us grow. You’ve heard it before … “ the testing of your faith produces endurance, etc., etc” But, we don’t like it one little bit. We want the trial to go away, but God needs us to STOP AND LISTEN. He is CALLING to us, but too often, we don’t hear him because we are too busy doing good things and then too busy swatting at the problems.
But He is quietly saying “BE STILL. BE STILL.” Some of us never learn to BE STILL until God forces us to BE STILL.
Coming up next, I’ll share how God made me STILL.
Meanwhile, share in the comments, “What does it take for you to BE STILL?”
-Mandy
Want to know about my journey with pain? Check back HERE for new posts on my story.
It’s been a while since I shared my journey with fibro and RA pain. A new friend and fellow pain warrior asked if I would do an interview on her blog, so that gave me the chance to update my story.
curleque by Coffee at pixabay
When did you notice that something was wrong, at what age do you think the first symptoms appeared?
My first symptom was severe chest pains at the age of 11 or 12. Of course, after chest x-rays and such, nothing was found to be a problem, so it was diagnosed as “growing pains”. I had these pains all through high school. In retrospect, the more I learn about fibromyalgia the more I see that I have probably suffered all my life. Fatigue has always been an issue for me.
Normally it takes a few years to get the diagnosis. What was it like for you?
No other research was done until after we returned from a cruise in February 2011 (49 years old). I acquired dis-embarkment syndrome which is when a person never gets their land legs back after leaving the ship. I still have a feeling of bouncing in a boat (10 years later). Months went by as doctors tested me for the problem.
In August 2011,
I had an episode of shortness of breath. No diagnosis was found. Then I awoke one morning with a crick in my neck. I went to a chiropractor who tried to give me an adjustment. My neck would not move at first but when it finally did, it shot pain down my neck and body.
September 2011
My journey with pain really began one Sunday in September; I laid down to rest but only lay about halfway down when pain shot across my lower back. The slightest movement would cause excruciating, contracting pains across my back. I was confined to my bed for about a month. No medications except large amounts of prednisone were helpful.
October 2011
After visiting several doctors, I ended up with a blood clot in my left leg because I had been immobile for too long. Visiting these doctors entailed being carried out of my house in a wheelchair by four men. After recovering from the blood clot, my doctors decided to send me to Mayo Clinic. (Happy 50th birthday!) The doctor sent me home and said wait for Mayo Clinic to call.
December 2011
Mayo Clinic called me within a month just to get my information and give me instructions for setting up an account. They said that it would probably be 6 months to get an appointment. I thought, “No way I can have this kind of pain for six months”, so I asked to go to Emory University. We went to the spine center at Emory but they found nothing wrong. Fortunately, after a month or so, Mayo Clinic called and had an opening.
January 2012
The first appointment at Mayo was with one doctor. I brought him all my records and shared my entire story. We returned 2 months later for 3 days of testing and seeing several specialists.
March 2012
I went home with a diagnosis of Central Sensitivity Syndrome with indications of Fibromyalgia, Myofascial Pain Syndrome, and Chronic Pain Syndrome. What a mouthful! That was sometime in March 2012 – a year and one month after our cruise. When I talk with other fibro patients, I feel that I was fortunate. I am thankful that I was so quickly sent on to Mayo Clinic. It is quite an amazing medical center. I wrote a post about Mayo Clinic.
June 2012
After a few months of medications for the fibromyalgia, I was able to begin to reduce the steroids. At this point, my knees began to swell and have a lot of pain. So I was sent to an orthopedic specialist. He diagnosed a torn meniscus and arthritis.
January 2013
Knee Surgery. Repaired the meniscus and cleaned out some arthritis. But things were not looking good in my knee. He wanted a second opinion. So we were scheduled to return to Mayo Clinic. Once you are a patient, It doesn’t take as long to get an appointment.
March 2013
Returned to my rheumatologist. He agreed that it was likely just osteoarthritis. But he decided to schedule all the blood work again. It turned out that I have Rheumatoid Arthritis. I wrote about the difference between osteoarthritis and rheumatoid arthritis here. The RA was caught early. The doctor said that I was fortunate and would probably not have the disfiguring that most have.
We have all heard about “old Arthur” that issue where your joints are hurting and stiff. It keeps you from exercise and even doing much walking. But did you know there are over 100 types of arthritis? Wow! And I’ve only really heard of three of them.
So anyway, Let’s talk about the two that I have: Osteoarthritis (OA) and Rheumatoid Arthritis (RA).
OsteoArthritis (OA)
OA is the most common type of arthritis. It’s what your grandparents probably have. Over 30 million adults struggle with OA. It’s caused by wear and tear and is a degenerative type of arthritis. OA attacks the cartilage at the end of your bones.
Rheumatoid Arthritis (RA)
On the other hand, RA is an autoimmune, inflammatory, systemic disease. Your immune system attacks healthy cells by “accident”, resulting in inflammation, swelling, and pain. It attacks mainly small joints such as fingers, wrists, and knee joints. As time goes by it also affects the heart, lungs, and eyes.
The effect of RA on your joints is variable. The inflammation and pain spikes and lolls from week to week, or even from day-to-day. One day you can jump right out of bed, but the next day you can hardly move. Due to its unpredictability, it is hard to understand. Many times family and friends can’t understand and may easily accuse you of making it up. Thus, we call it an invisible disease.
There is no cure for RA. Many supplements have made their hype about resolving the problem but to no avail. Certainly, exercise is helpful for managing RA. And there are anti-inflammatory diets that are helpful. But none of this can cure the disease.
Fatigue and morning stiffness are daunting issues for the patient. Even with treatment, these problems are persistent.
Early detection is important. Treatment can slow the progression of pain and inflammation and even deformation of the joints and prolong the need to retire early or apply for disability.
There is no single test for an RA diagnosis. Doctors consider symptoms such as joint swelling and morning stiffness. Blood tests detect rheumatoid factor and anti-citrullinated protein antibodies, which are markers for systemic inflammation. X-ray, ultrasound, and MRI scans can also help determine joint health.
As the disease progresses, symptoms often spread to the wrists, knees, ankles, elbows, hips and shoulders. In most cases, symptoms occur in the same joints on both sides of your body.
About 40 percent of the people who have rheumatoid arthritis also experience signs and symptoms that don’t involve the joints. Rheumatoid arthritis can affect many nonjoint structures, including:
Skin
Eyes
Lungs
Heart
Kidneys
Salivary glands
Nerve tissue
Bone marrow
Blood vessels
My Symptoms
I was diagnosed in 2013 with RA though we are certain I was suffering long before this. When chronic pain first became obvious to me, I was placed on steroids. These steroids masked the RA, making my blood lad markers normal. When we got my fibromyalgia under control, my knees began to swell. So my rheumatologist checked my blood work again. Sure enough, they were high.
From the list above, I have already been experiencing Chronic Dry Eye and Nerve tissue issues. This summer, I began having heart and bone marrow issues even though my blood markers are good.
I recently had an Occipital Nerve Block done. It can be a bit scary to think about having a long needle stuck into your neck going upward toward your brain. I have had about a dozen of these and they are so helpful for me. So… I thought maybe I should explain what it is and share my experience.
Why Do I Get Occipital Nerve Blocks?
I have rheumatoid arthritis (also known as R.A.). One day I will write more about that but just a quick explanation. R.A. attacks the small joints, such as your hands and fingers, feet, and toes. But it also goes after the C1-C2 joint in your neck. Mine is deteriorating which is causing pain from the base of my head radiating upward to the top of my head. These nerve blocks have worked exceptionally for me. I get one every 6-9 months.
What is an Occipital Nerve Block?
An occipital nerve block is a safe procedure that may be performed in a doctor’s office or pain clinic. The occipital nerve block technique is relatively quick and convenient, and is done with minimal invasion (i.e. intrusion into tissues with medical equipment). For the procedure, you’ll be seated or lying down. The injection itself only takes a few minutes, and is done without full sedation.
During the procedure:
A local anesthetic may be applied to your skin above the occipital nerve to be targeted in order to avoid discomfort during the procedure.
Then, a fine needle (like a hypodermic) is inserted, until it is in an appropriate position near the nerve.
Next, steroid medications are injected. These drugs reduce inflammation and block the transmission of pain signals to the brain, thus inhibiting the sensation of headache pain.
If an occipital nerve block has been successful, you may feel that the side of your head that has been injected has gone numb. Your physician or pain specialist may request that you stay in the clinic or office for a brief period, during which the actual degree of your pain relief may become apparent. The time elapsed before you experience pain relief does vary from person to person; it may be nearly instantaneous for one individual, but take a day or more for another.
An occipital nerve block does not often interfere with normal function or routines following a procedure. The patient may not notice the full effect of the intervention until a few days after the procedure. This may last a month or more, at which point the patient may arrange for a repeat injection. However, some patients may require two injections in quick succession to elicit an optimal effect.
I am so fortunate to have Mayo Clinic as part of my medical team. This place is amazing. After about 2 years of diagnosis and care for my Central Sensitivity Syndrome and R.A., it was discovered that my C1-C2 disks were already deteriorating. I was experiencing quite a bit of pain in my head, neck, and shoulders. SoI was sent to the Pain Clinic.
One of the biggest advantages of Mayo Clinic is everything under the same roof. The doctors all work together on your health. No matter which doctor you see, they can pull up all my records and see what the other doctors are doing and thinking.
So back to the topic at hand…
This procedure is done right in the office. Mayo Clinic just remodeled this part of the clinic and the clinic now has a beautiful procedure area. First, the nurse will sit down with you and talk to you about the side effects and wound care. She will ask the level of pain you are experiencing at the moment.
image credt Maxres
Then you just “pull up” to a gurnie with a pillow and lay your head down. (If you have long hair, bring a scuncii to pull your hair up our of the way.) The injection is going in right at your hair line.
The doctor arrives by this time and he and the assistant set up the ultrasound and find the greater occipital nerve. They find precisely where they want that needle to go. Then the injection area is cleaned and prepped.
Just a quick plug for my doctor.
Dr. Mark Hurdle is amazing. So understanding and compassionate and very personable. When my daughter was getting married, I asked if we could go ahead and schedule my next injection just before the wedding so that I could (hopefully) be pain-free that day. It was no problem. We scheduled the procedure that day. And as hoped the injection did its thing and I was pain-free for the wedding. My appointment following the wedding, he came in asking how the wedding went. I share that to show that he is involved in his patients’ lives.
On the professional side, Dr. Hurdle is THE expert on this procedure. He goes all over the world teaching doctors how to do this procedure. That factalone makes me very calm about the injection.
And now the injection
An anesthetic injection is given. I noticed above that it says “A local anesthetic may be applied to your skin”. NOTE: I would ask about this because I actually get an injection for numbing. I’ve had others say that this procedure was VERY painful. Some even said they had the doctor stop. This must be why my experience has not been terribly painful.
We wait for the numbing to take over (just a couple of minutes) and then the procedure begins. It’s a long needle (so my husband says) and it is worked in along the occipital nerve using the ultrasound. Then he begins to inject the medicine. At times, I can feel the burn of it entering but it really isn’t that bad for me. Not any worse than going to the dentist.
To divert my attention, I recite scripture in my head or sing a song. Before long, it’s all done. And immediately I have lots of pain relief. I sit up and they let me wait to get my senses back. You can feel kind of woozy for a bit, but I have some balance issues anyway.
I let my hair back down and we are done. The worst effects are goo in your hair and a bandaid in your hairline that can be a challenge to get out the next day. You can take a shower that night, but don’t get in a jacuzzi or soak in a tub.
Follow-up
They sent me home with a page of instructions for wound care and things to watch for. This most recent injection, I woke the following morning with a flushed face. I shot off a message to the clinic and got an immediate response that this is normal and not to worry.
Two weeks later, I received a call or message to ask how my pain is doing. I recall one time that my pain had returned to some extent and again they called immediately with questions and instructions.
My recommendation
I totally recommend this procedure if you experience severe migraines or head and neck pain. Just be sure to find a doctor who knows what they are doing. We drive the 2 hours to Jacksonville, FL to have this done though I am certain there are doctors here in Savannah that would do it. It’s a long day trip but worth the drive. Plan to take the next day off to rest.
I’ve had this done about a dozen times. (every 6-9 months) This is a procedure that can be done indefinitely until it doesn’t work. And the alternatives (neck fusion surgery taking a good year to recover) are not desirable.
It’s time for another Letter to Friends! Right after diagnosis, is probably the best time to share with your friends about fibromyalgia and how it affects you. Mainly because our world is so fast-paced, people will quickly forget that you have a health issue at all, especially when it comes to fibro and chronic pain. When we are seen in public, most people see a healthy person and never think twice about it. Others may ask, “how you are doing?”
I recently came in contact with Kate Straus through chronic illness communities. She worked in the education field for over ten years before fibromyalgia changed her life’s path. With a background in special education and early childhood intervention, she has compiled a toolbox of skills to help those with differences navigate life to make them the best that they can be.
Kate has learned, herself, that while fibromyalgia can be an obstacle, it has also revealed strengths that she did not know she had. She is easy to work with, listens well, and is compassionate. She is now a certified fibromyalgia coach helping those with fibromyalgia adjust to their new life.
Today, she has offered a letter that she wrote previously to friends and family to help them understand the struggles she faces with fibromyalgia. I invite you to continue reading to understand more fully challenges we, as fibro warriors, face.
In speaking to a close friend recently, I realize that this letter isn’t just important, but crucial. I need to share some important information: Chronic pain is not a choice, it’s not enjoyable, and it’s not faked. Whether it’s LYME, Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Myofascial Pain Syndrome, Lupus or any of the other disorders and diseases that cause chronic pain. According to the Mayo Clinic:
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals”.
Mayo Clinic
We are not looking for pity, and for those that are lucky enough not to deal with chronic pain, we don’t even require understanding. What we do ask for is respect. Respect that our pain is real, that the side effects of our pain, and the medications we take for our pain are real.
“How are you?” is a loaded question.
Do you want the answer that is given so that you don’t have to hear the whole *sordid* story; or, do you really want to know how we are doing? Because, we, as chronic pain sufferers, are phenomenal actors and actresses. I believe we should win awards for our “I am fine” answer. When we talk to others who suffer from chronic pain, we ask about each other and give a number from 1-10, in terms of the level of pain, with 1 being low and 10 being out of control. I’ve been lucky to have some friends catch onto that and ask me with the rating.
I guess what we want you to know is that our fine is usually different from your fine. Chronic pain means just that. Hardly a day goes by without some level of pain; however, we do have some days that are better than others. But, just because we “look good”, doesn’t mean we are ready to tackle a marathon or swim from Cuba to Florida (as one fellow “fibromite” made news – a clear exception to the rule – my mother is waiting for my turn to do the swim – just for clarification, I’ve NEVER been a good swimmer). Some of us are lucky enough to deal with low pain, and some of us are in so much pain, we require aids to help us walk (i.e. canes, walkers, wheelchairs).
Pain Affects Every Part of Your Body
Pain affects every functioning part of your body: physical, emotional, psychological, and sensorial. It affects your sleep, often causing disordered sleep. Some can’t seem to get enough sleep and some actually aren’t getting enough sleep.
It affects all five senses. Because you are in persistent pain, it’s difficult to exercise, whether it be gentle movement or anything at all, on some days.
It affects your ability to focus. For me, to be able to sit still is nearly impossible. If I’m watching TV, I’m also playing a game on my computer and texting with a friend. If I am reading, sometimes I need to re-read a paragraph over and over again. Some of us lose time. I am not referring to blackouts, per se; however, for me, I will stare off for what seems like moments, and its 20-30 minutes later.
We can be forgetful and have what’s called “brain fog”. It literally feels like there is a haze around your thoughts. It’s as if you have to wade through pea soup to be able to complete simple tasks. Honestly, sometimes I would prefer the pain to the fog.
Up until a few years ago, people were fascinated by my ability to remember things. My long-term memory still stands strong; however, my short-term memory has become quite weak. I try to play puzzle and quiz games to strengthen this present weakness.
After Diagnosis
My chronic pain diagnoses are fibromyalgia and chronic fatigue syndrome. Interestingly enough, these are two disorders that my father researched over 30 years ago. There are many overlapping characteristics that fall within these two disorders. I am lucky and grateful that I have had a friend introduce me to support groups (all online) which in turn have brought me more friends that *get* me. It’s nice to be understood in that respect.
Ask me Anything
I am open, as are most of my friends, in talking about our chronic pain disorders. Please feel free to ask me any questions you’d like about either of these two disorders. I can tell you how I feel, and if I don’t have answers to other questions you might have, I have places to direct you.
Just please understand that chronic pain illnesses are often thought of as “invisible illnesses” because you can’t see a visible reason for the pain. This doesn’t mean we aren’t hurting. So, the next time you see someone that you know has a chronic pain disorder, or you see someone walking out of a car in a disabled parking spot with seemingly no difficulty, please don’t judge. Don’t assume.
Readers, if you are a fibro warrior and need some life coaching to adjust to your new different life. You might like to contact Kate for that assistance. She is certified to help you. Learn more about her at her own website, Spoons to Share Don’t miss any of the “letters” we are writing. Check out previous letters and subscribe to this series on the main “Letters to Friends” page. If you know someone with fibromyalgia (and you probably do), join my Facebook page Fibromyalgia, Is it For Real?
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