Not everyone knows what it is like to suddenly one day be told by a doctor you will have chronic pain for probably the rest if your life.
I've been blessed with a few painful diagnosis, I say blessed because I know I will help others because of my diagnosis.
Osteoarthritis 2010
Osteonecrosis 2014
Spondylolisthesis 2016
Hypothyroidism 2002
Rosecea 2017
Shock is one of the best words I can use to describe how I felt when that happened to me.
Today I discuss Osteonecrosis
When I began facing the symptoms of Osteonecrosis aka Avascular Necrosis , I was in shock the day I was diagnosed.
I just couldn't believe that a torn meniscus could lead me down this path.
One day I was fine and then the next day, I was in my bed due to intense debilitating pain.
I had a job as an optometric tech/optician that I loved.
I just never knew I would encounter something so life changing all because of a torn meniscus that ended up with me having AVN/ON.
I pictured myself being at my job for a long time, I want to retire at 59 not 51 and certainly not because I had to.
I felt as if this rare disease/disorder called Osteonecrosis had drastically altered my vision and goals and my future career.
I began to feel uncertain about my life and the plans I was making for it. My anxiety seemed to be off the chart.
When someone tells you that Osteonecrosis is bone death all you seem to hear , at least in my case is death.
My heart raced, thoughts of being in a wheelchair flashed in my mind.
This went on for a few weeks to maybe a few months.
I had to get a grip and come to terms with this. Even though my family and friends were supportive I felt terribly alone.
No one really knew how I felt and words couldn't describe that constant pain I was in.
I often refer to it as being hit by a hot lightening bolt over and over.
I woke up one day after my torn meniscus ended up with me developing Osteonecrosis and could barely walk and I could not focus when people were talking to me because my mind kept jumping around trying to figure out what I could do to help myself. How can I get some of my life back, how to get this pain to ease or just go away.
I want to get back to things I love like work, walking and hiking, living.
Through trial and error I learned what to do and what not to do for the most part. But I still get days even weeks where the pain returns to let me know it's still there, lurking like a stalker in the background.
My AVN/ON is better some days than others. The first 2 years honestly was constant pain 24/7 it was so bad I couldn't work anymore. I could not go up steps period. I could barely function.
I wasn't one to take pain pills all the time, even though I had them.
I asked my ortho for alternative ideas
He suggested CuraMed.
I started to take Terry's Naturally CuraMed 375 mg a day x 2 a day for the first week , then once a day since.
As well as Vitamin D because I was severely deficient,and a few other medications that was prescribed by my doctors.
I was taking all the other supplements before the CuraMed and honestly with in 2 weeks my pain eased up enough to notice. It was still there but not as severe.
I also read about raw and plant based food to help the pain. Amazing..
Then after about a month there were days I had very little pain ,pain still present like a dull ache and I was so thrilled to be able to at least go to the grocery store and come home and not cry or feel defeated.
I had to have a umbilical Hernia repaired and was told stop all Supplements!
I wasn't thrilled about this but understand why.
With in 3 days of not taking my supplements my pain comes back with vengeance .
Are you kidding me?!
I hate that I am unable to predict it. After a 3 years of enduring this pain off and on I am still amazed at how rapidly my condition can change.
I take my supplements everyday but sometimes the pain does put me in check. It yells HEY LADY…..
I'm still here.
Yesterday I had a flare up the pain was overwhelming so frustrating.
I'm still in pain today just not as bad as yesterday.
When I limp it throws off everything and then the Spondylolisthesis in my L5 starts acting up. I get numb when I sit. So some kind of nerve issues happening.But ya know I don't even worry about that right now.
The pain is like a sleeping giant. You never know when the beast will awaken. But look the frick out when it does.
Besides physical pain also can come body image issues, due to limited mobility and possible weight gain or loss with a chronic condition.
Limited mobility and those who have to take medications just to be able to survive takes a toll on your weight. Be it steroids which is horrible for people with AVN in fact it's been known to cause AVN . I am grateful that my avn/on was due to trauma.
I gained weight because I'm not anywhere near as active as I was yes I changed my diet but still the body has to move, and in my opinion prolonged use of any rx or supplements can have a big effect on a persons weight. Plus I have Hypothyroidism which has its own set of issues.
But because of AVN/ON , exercise may be limited or barely exist, because sometimes just getting out of bed in the morning feels like you just climbed for days in the Appalachian mountains. I have learned that no matter how much pain I'm in , I have to move some or I will feel worse.
Unfortunately mood swings can happen especially if pain is severe and often debilitating. It really sucks.
You can feel it like a light switch inside you clicks.
But 10 min later if pain is gone or subsided you can be relaxed and happy.
I really hate pain. And I hate feeling moody I like to be happy.
I started keeping a combination food/pain diary.
My food/pain diary is used to monitor levels of pain over a an extended period of time to see if I had possible triggers for my pain.
I know it might sound very weird and kind of scientific, but just think about it,say last week you had intense pain and then it was gone and say you ate a different food maybe there's a correlation between the two.
If you have a condition where you experience pain off and on for weeks or months,years you will remember that pain on January 1 or July 28th.
So if you keep a food/ pain log maybe the pain is brought on by an allergic reaction to something in a particular food.
Then you know to stay away from it.
I'm not saying it's 100 percent accurate but for me it's helped tremendously.
However somedays my body just has pain especially winter months. I used to love winter now I dread it.
Speaking of cold,I also have this freezing cold feeling in the knee that has the Osteonecrosis in it.
It feels like it's always cold , but when it really hurts it feels like it's been outside on a cold Ohio day for about 3 hours in 10 degree weather.
And the only relief I get is propping it up and applying a ThermaCare heat wrap.
That's why I track my pain , food, weather. I look for triggers.
I will post my pain tracker sheet tomorrow.
What is Avascular Necrosis/Osteonecrosis?
Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. With too little blood, the bone starts to die and may break down.
Osteonecrosis is also known as:
• Avascular necrosis
• Aseptic necrosis
• Ischemic necrosis.
Osteonecrosis is most often found in the hips, knees, shoulders, and ankles. You may have osteonecrosis in one or more bones.
In people with healthy bones, new bone is always replacing old bone. This process keeps bones strong and also happens when children grow or if a bone is injured.
In osteonecrosis, bone breaks down faster than the body can make enough strong, new bone. If you do not get treatment, the disease worsens and the bones in the joints break down.
You may not be able to bend or move the affected joint very well, and you may have pain in the joint.
Who Gets Osteonecrosis?
Osteonecrosis can occur in people of any age, but it is most common in people in their thirties, forties, and fifties.
What Causes Osteonecrosis?
Osteonecrosis is caused when the blood flow to the bone decreases, but why this happens is not always clear. Some known causes of osteonecrosis are:
• Steroid medications
• Alcohol use
• Injury
• Increased pressure inside the bone.
Risk factors for osteonecrosis are:
• Radiation treatment
• Chemotherapy
•. Smoking
• Kidney and other organ transplants.
Osteonecrosis is more common in people with illnesses such as:
• Cancer
• Lupus
• HIV
• Gaucher’s disease
• Caisson disease
• Gout
• Vasculitis
• Osteoarthritis
• Osteoporosis
•. Pregnancy
•. Blood disorders Like Factor V Leiden, Factor Viii, and Sickle Cell disease.
Osteonecrosis can also affect people for no known reason, even if they have no other health problems.
What Are the Symptoms of Osteonecrosis?
When osteonecrosis first begins, you may not have any symptoms. You may start to feel pain when you put weight on a joint with osteonecrosis. As the disease gets worse, you may have more pain and the joint may hurt even when you rest. Pain may be mild or severe.
If the bone and joint start to break down, you may have severe pain and not be able to use the joint. For instance, if you have osteonecrosis in the hip, you may not be able to walk. The time from the start of symptoms to losing use of the joint can range from months to more than a year.
How Is Osteonecrosis Diagnosed?
To diagnose osteonecrosis, your doctor will take your medical history and do a physical exam. Your doctor may then order one or more tests to see which bones are affected:
• X ray
• Magnetic resonance imaging (MRI)
• Computed tomography (CT) scan
• Bone scan
• Bone biopsy
• Measure of the pressure inside the bone.
Treatment helps more if the disease is diagnosed early.
How is Osteonecrosis Treated?
Treatment helps to keep bone in joints from breaking down. Without treatment, most people with the disease will have severe pain and limited movement within 2 years. To decide on the best treatment, your doctor will find out:
• Your age
• The stage of the disease
• Where and how much bone has osteonecrosis
• The cause, if known. If the cause is steroid or alcohol use, treatment may not work unless you stop using those substances.
The goals in treating osteonecrosis are:
• To improve use of the joint
• To stop further damage
• To protect bones and joints.
For early stage disease, doctors may first order nonsurgical treatments. If they do not help, surgery may be needed.
Nonsurgical treatments
Nonsurgical treatments may relieve pain in the short term, but they do not cure the disease. One or more of these treatments may be used at the same time.
• Medications. Nonsteroidal anti-inflammatory drugs (NSAIDs) are used to reduce pain and swelling. For people with blood clotting problems, blood thinners may be used to prevent clots that block the blood supply to the bone. If you take steroid medications, cholesterol-lowering drugs may be used to reduce fat in the blood.
• Taking weight off the joint. Your doctor may suggest that you limit your activity or use crutches to take weight off the affected joint. This may slow bone damage and allow some healing. If combined with NSAIDs, it may help you avoid or delay surgery.
• Range-of-motion exercises. Exercise of the joints with osteonecrosis may help increase their range of motion.
• Electrical stimulation. Research has shown that this can prompt bone growth.
•Prp injections and or stem cell injections A2M or prolotherapy in early stages 1 -2.
StemCell Stage 3 as long as bone has not collapsed
Surgery
In time, most people with osteonecrosis need surgery. There are four main types of surgery used for osteonecrosis. Your doctor will decide if you need surgery and what type is best for you.
• Core decompression surgery. Lowers pressure inside the bone to increase blood flow to the bone.
• Osteotomy. Reshapes the bone to reduce stress on the damaged joint.
• Bone graft. Takes healthy bone from one part of the body and uses it to replace diseased bone.
• Total joint replacement. Replaces the joint with a manmade one.
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