I made and astonishing correlation recently during the last hurricane that donned our path.  I had always known that sugar creates irrefutable pain in the joints of those who suffer from fibromyalgia.  It's a never ending cycle, you experience pain, you suffer fatigue, you grab a sweet or candy for a quick uplift to get on with your day.

But recently I've been plagued with back pain.  On and off it comes and rears its ugly head when least expected.  One recent epiphany was when I was at the beach.  I stood up to walk gingerly to the ocean and was immediately sliced with intense pain as I stood fully erect.  It pinched so severely in my lower vertebrates that I stood crooked allowing other muscles in my body to take on my skeletal impact.  This pain consumed me for eight days making it difficult to preform my usual duties.  To bed I went and stayed there until my spine had a chance to regroup and redirect.  

It was the day I returned after being evacuated during the hurricane.  I went to the beach for a reprieve.  But during our stay at the hotel previously my mother brought her favorite treat, sugar.  There were several boxes of Reese's adorning her stand.  As you can imagine, the days of preparation reduce one's ability to think correctly when your planning on bringing enough supplies to last for a few days in cramped quarters.  I was tired, I ached, I reached for Reese's.

Several Reese's as a matter of fact.  In fact over the two days we succumbed to the storm, I was indulging  a rounded cup a few times daily.  I knew better.  My body's cravings weren't helping though, and so I did what any hurricane evacuee would do, I ate sugar and slept a lot.  

What I didn't realize is how much this was affecting my back and how much I'd pay in the future week ahead. 

We all know that eating a well-balanced diet is important for health and longevity. But did you know that studies have actually linked some forms of back pain with consuming certain types of food? Sugar is one of the major culprits.

Unfortunately, it’s too easy to overdo the sugar intake because it’s added to many everyday processed foods, including bread, yogurt, juices, and sauces. The average American consumes around 19.5 teaspoons (82g) of added sugar every day, which comes out to 66 pounds every year – the recommended daily allowance is about 6 teaspoons (25g) per day for women and 9 teaspoons (38g) for men!

Since it’s so easy to overconsume with our modern lifestyle, it’s important to understand the basics of how sugar affects your body and choices you can make for regulating your blood sugar levels.

Most people are aware that consuming too much sugar contributes to weight gain and a higher risk of diabetes, heart disease, and depression, but in recent years researchers have also found it can contribute to back and joint pain. When we consume too much of it, our body releases insulin and stress hormones. Those, in turn, trigger the inflammation process. Inflammation leads to chronic pain. The places where we have the least amount of blood circulation are at greatest risk of inflammation – that is why our joints and back can be so dramatically impacted by sugar consumption.

Here are 6 simple tips you can follow to help regulate blood sugar and keep painful inflammation at bay:

1. Choose foods with a low glycemic index
Every food item is rated by the percentage that the blood sugar level rises when that food item is consumed. Avoiding things that have a high glycemic index reduces sugar intake and helps stabilizes blood sugar levels.

2. Choose good carbs, avoid bad carbs
Good carbs contain lots of fiber and are absorbed slowly into our systems: whole grains, vegetables, fruits, and beans.

Bad cards spike blood sugar levels: processed foods, white bread, white rice, sugary beverages, and sweets.

3. Drink water
Keeping hydrated helps your kidneys flush out excess blood sugar.

4. Stay active
Maintaining a healthy weight helps to ensure that your body can process insulin effectively. Not to mention that a good walk can reduce stress and help avoid caving in to cravings.

5. Manage your stress
Stress can actually stimulate the release of hormones that cause blood sugar levels to rise. Hang out on your Teeter at least a few minutes a day for some mindful relaxation.
​
6. Get enough sleep!
Sleep deprivation can also impact your hormones which play an important role in controlling blood sugar, which is just one more reason to hit the hay early.

It's always profoundly interesting whenever I'm sitting in my neurologist's chair when new MRI news comes in.  Something new baffling, incomprehensible always hits my ears.

At this stage in our patient-doctor relationship, we are past the whining syndrome.  Gone are the days where I presumed the more symptoms I declared the more apt he will be able to find an answer to my woes.  Not so, my friends.  Instead I acquired mounds of paper work and extensive phone notes (so I can remember what to ask) that never seem to be answered.  The sad rule of thumb I've learned is that no one knows why most of my symptoms occur especially him.

I now sit motionlessly the new keen observer of symptoms that can be actually measured and diagnosed.  Those are the symptoms I share at this point.  He initiates the dialogue now as I sit braced for impact.   "Your recent MRI shows more degeneration in the lower vertebrates on your back,  we now have bulging discs, more inflammation and the beginning of Ankylosing Spondylitis. One of your bulging discs is maneuvering its way a half inch up your spine and may have caused you that severe pain in your back last month that..........."

"Wait, hold up, anklo what?" I asked.  This was a new term that I had not been privy to before.

"Ankylosoing Spondylitis is the fusion of your vertabrates in your back from inflammation.  Just a moment let me show you on the skeletale vertabrate I have here....., " he begins.  

​Ankylosing spondylitis is an inflammatory disease that, over time, can cause some of the vertebrae in your spine to fuse. This fusing makes the spine less flexible and can result in a hunched-forward posture. If ribs are affected, it can be difficult to breathe deeply.

Ankylosing spondylitis affects men more often than women. Signs and symptoms typically begin in early adulthood. Inflammation also can occur in other parts of your body most commonly, your eyes.

There is no cure for ankylosing spondylitis, but treatments can lessen your symptoms and possibly slow progression of the disease.

Symptoms

Early signs and symptoms of ankylosing spondylitis might include pain and stiffness in your lower back and hips, especially in the morning and after periods of inactivity. Neck pain and fatigue also are common. Over time, symptoms might worsen, improve or stop at irregular intervals.

The areas most commonly affected are:

• The joint between the base of your spine and your pelvis (sacroiliac)
• The vertebrae in your lower back
• The places where your tendons and ligaments attach to bones (entheses), mainly in your spine, but sometimes along the back of your heel
• The cartilage between your breastbone and ribs
• Your hip and shoulder joints

When to see a doctor

Seek medical attention if you have low back or buttock pain that came on slowly, is worse in the morning or awakens you from your sleep in the second half of the night — particularly if this pain improves with exercise and worsens with rest. See an eye specialist (ophthalmologist) immediately if you develop a painful red eye, severe light sensitivity or blurred vision.

Natural treatments for Ankylosing Spondylitis

There isn’t a cure for AS. It’s a lifelong condition, but effective treatments are available. Treatment goals are to minimize pain and stiffness and reduce flares. Natural treatments may be used on their own or with traditional AS treatments.

These 10 natural therapies may help relieve symptoms:
1. Stretching
Stretching helps build flexibility and may reduce pain. Consider adding the spine stretch or the low-back rotation stretch to your daily routine.
2. Heat therapy
Apply a hot water bottle or heating pad to the affected area to reduce stiffness and pain. You may also use moist or dry heat. A warm bath may also help, especially before exercise. Don’t use heat therapy without consulting your doctor if you have diabetes, deep vein thrombosis, vascular disease, an open wound, or a skin condition such as dermatitis.
3. Cold therapy
Applying an ice pack, cold gel pack, or a bag of frozen vegetables to painful joints can help reduce swelling. After exercise, cold therapy may help reduce inflammation. Don’t apply ice for more than 20 minutes at a time. Don’t use cold therapy without consulting your doctor if you have circulation problems.
4. Acupuncture
Acupuncture is an ancient remedy for pain. It involves inserting thin needles into specific points in your skin. This is thought to activate your body’s pain-relieving hormones. Some people report acupuncture relieves AS pain.
5. Massage therapy
Massage helps you relax. It may also help you feel more flexible or “loose” so that you can exercise or stretch. Massage may cause pain at tender points around your spine. If this happens, avoid those areas and only use light massage techniques until the pain improves.
6. Movement
The more you sit, the stiffer you’re likely to feel. Get up, move around, and stretch regularly. If you have a desk job, take a “get up and move” break every hour.
7. Exercise
Gentle exercise programs such as yoga and Pilates are great for AS because they incorporate stretching. Swimming may also be beneficial because it’s easy on your joints. Strengthening exercises with weights can help build muscle, which supports joints affected by AS. Talk with your doctor or a physical therapist to determine the best exercise plan for you.
8. Alexander Technique
AS often leaves you hunched over. Practicing good posture is critical. The Alexander Technique teaches you to be aware of your posture throughout your day. It also teaches you how to correct poor posture and may be helpful for people with AS. To find a qualified teacher, visit the official website.
9. TENS therapy
TENS stands for transcutaneous electrical nerve stimulation. This therapy uses electrical current to stimulate nerves through the body for pain control. Electrodes are usually applied at the pain site and connected to a TENS machine. It’s thought that when TENS stimulates nerves, it overrides pain signals. The TENS technique is usually taught by a physical therapist and may be continued at home.
10. Stop smoking
Smokers, especially men, are at risk for greater spine damage from AS than non-smokers. Quitting smoking not only helps reduce AS damage, but also improves your overall health.

Natural ways to improve sleep

A good night’s sleep can often be an elusive goal if you have AS. Pain may be worse at night due to inadequate bedding. Your mattress should keep your spine straight when you lie on your side. Your mattress should also allow your spine to have an “S-curve” when you lie on your back.
Try these tips for a good night’s sleep:

• Use a medium-firm mattress, which can mold to the shape of your spine.
• Use only enough pillows to keep your neck aligned.
• Use heat therapy before bed to help reduce pain.
• Don’t sleep with a pillow between your legs.

Traditional treatments

Traditional treatments are also used to manage pain, reduce stiffness, and help prevent flares. Several types of medications may be used.

NSAIDs are anti-inflammatories that reduce pain. Ibuprofen, naproxen, and aspirin are NSAIDs. Corticosteroids may be offered when AS symptoms are severe and don’t respond to other medications. They also help reduce inflammation and pain. Corticosteroids are usually injected into the affected joint for fast pain relief.

Disease modifying anti-rheumatic drugs are used to help slow down the inflammatory process. Examples include sulfasalazine and methotrexate. These drugs are used for long-term treatment.

Biologic agents are used to block proteins that cause inflammation. Seven different biologics are approved by the U.S. Food and Drug Administration to treat AS:

• adalimumab (Humira)
• etanercept (Enbrel)
• golimumab (Simponi)
• infliximab (Remicade)
• Certolizumab pegol (Cimzia)
• Secukinumab (Cosentyx)
• Infliximab-dyyb (Inflectra)

These drugs are injected or given intravenously.

Outlook

Although most people require some type of medical therapy for AS, natural remedies may also help reduce symptoms.
​
Not all alternative treatments are right for everyone with AS. Some people may have success with yoga and acupuncture. Others may feel better using cold therapy and massage.

It never fails, I always have a new tale to tell with an adverse reaction.  I'm wondering out there: Has anyone had adverse reactions to stinging insects since being diagnosed with fibromyalgia?  

The other day I was trimming in my garden.  It had just down poured and released a few degrees off the heat wave we're having here. This allowed me to grab a few minutes outdoors to get some much needed gardening in.

Now, I'm quite aware that I have adverse reactions since being diagnosed so I'm extremely careful when out doors and around insects that bite or sting.  Bushes, in particular, can hide wasp nests.  So I broached it stealthy eyeing every nook and crevices between the leaves.  Nothing!  Nonetheless I exerted extreme caution while tackling and clipping the overgrown branches.

I was moving at a fairly smooth pace at one point since I could see the entire trunk of the bush easily.  All of a sudden, a wasp flew directly at me forming a straight line, onto the tip of my nose and stung with force.  No other wasp accompanied it so he must have been rouge, possible drenched from the torrential down pour and just got his wits about him.  .

Oh what pain! Everything is a 1,000 times worse when you have fibromyalgia.  It resonated through every cranny in your body.  I felt dizzy, pained, and off balance.   I rushed inside following suite with the normal wasp procedure:

• wash the sting area with soap and water to remove as much of the venom as possible
• douse the area with vinegar
• apply a cold pack to the wound site to reduce swelling and pain
• keep the wound clean and dry to prevent infection
• cover with a bandage if desired

I also lathered on hydrocortisone cream.  Then I waited like usual to see if anything unexpected will begin to pop up.  Nothing.  I thought I was in the clear.

Two days letter I woke up with severe swelling in my nose and below my left eye.  "Oh, no!" I lamented. "I thought I was in the clear!"  It seemed I had developed some form of Cellulitis which is a common, potentially serious bacterial skin infection. The affected skin appears swollen and red and is typically painful and warm to the touch .Left untreated, the infection can spread to your lymph nodes and bloodstream and rapidly become life-threatening. 

I had most of the symptoms:

​Possible signs and symptoms of cellulitis, which usually occur on one side of the body, include:

• Red area of skin that tends to expand
• Swelling
• Tenderness
• Pain
• Warmth
• Fever
• Red spots
• Blisters
• Skin dimpling

Off to see the doctor!  Once diagnosed I was told I could be given a steroid shot.  Knowing my chemical sensitivities and the fact that if this is a bacterial infection, my immune system may go a bit haywire, I opted for the antibiotics.  Several years ago I was released on antihistamines only to find out several days later I had incubated a severe case of cellulitis.  Which, in turn, sent me back to the doctors office for antibiotics.

The PA was a bit gruff indulging me in his self-wisdom of the correct route, but knowing that my illness is not something a medical professional can fully understand, I opted for personal intuition this time.  In fact, I found personal intuition was what got me on my feet working again to begin with.  If I spent my life basking on every word my doctors told me, I'd be on 20 different pills and in bed most of the day.

This is by no means telling you to counter what your doctor is telling you.  It is encouraging you to use common sense on minor situations.  

​Are you getting enough vitamin D? According to recent studies, there’s a good chance you aren’t. In 2009, researchers reported levels of vitamin D in the U.S. population had dropped between the years of 1988 and 1994, and then again between 2001 and 2004. Not only had average levels dropped, more than 75 percent of the people studied had inadequate levels of vitamin D in their blood.

Vitamin D deficiency is linked with an increased risk for serious diseases. Reduced levels of the vitamin are associated with cancer, cardiovascular disease, osteoarthritis, and autoimmune disorders. Deficiency is also linked with multiple sclerosis, type 1 diabetes, depression, fibromyalgia and more. That’s why it’s so import to get enough vitamin D. But identifying vitamin D deficiency can be tricky.
Our bodies don’t make vitamin D, so we have to get it from our environment. The primary source of vitamin D is the sun, but we can also get it from some foods. Lifestyle, race, age, and other factors can put you at risk for vitamin D deficiency

The truth is that it’s extremely difficult to tell whether you have a vitamin D deficiency. The only way to be absolutely sure is to take a blood test. Most people with a vitamin D deficiency won’t be aware of it. It doesn’t usually produce noticeable symptoms. However, symptoms are possible. If you are vitamin D deficient, you may experience:

• muscle/joint pain and weakness
• bone pain
• tiredness or fatigue
• depression

​Your body is designed to get the vitamin D it needs by producing it when your bare skin is exposed to sunlight. The part of the sun’s rays that is important is ultraviolet B (UVB). This is the most natural way to get vitamin D.

​Large amounts of vitamin D3 are made in your skin when you expose all of your body to summer sun. This happens very quickly; around half the time it takes for your skin to turn pink and begin to burn. This could be just 15 minutes for a very fair skinned person, yet a couple of hours or more for a dark skinned person.
You don’t need to tan or to burn your skin in order to get the vitamin D you need. Exposing your skin for a short time will make all the vitamin D your body can produce in one day. In fact, your body can produce 10,000 to 25,000 IU of vitamin D in just a little under the time it takes for your skin to turn pink. You make the most vitamin D when you expose a large area of your skin, such as your back, rather than a small area such as your face or arms.

The assumption that vitamin D supplements will protect you against diseases associated with low vitamin D levels is incorrect, according to Australian researchers. The report found that vitamin D supplements are immunosuppressive and may actually make diseases worse. 

Vitamin D Nuclear Receptor (VDR) influences the expression of over 1,000 genes, including those associated with diseases such as cancer and multiple sclerosis. According to the new study, supplemental vitamin D actually blocks VDR activation, which is the opposite effect to that of sunshine. Instead of positively impacting gene expression, vitamin D supplements appear to suppress your immune system.

Vitamin D has a remarkable role to play in your health, influencing nearly 3,000 of your 25,000 genes, and playing a critical role in your immune response. Vitamin D could rightly be described as a “miracle nutrient” for your immune system, as it enables your body to produce well over 200 antimicrobial peptides, which are indispensable in fighting off a wide range of infections.

​They say “the eyes are windows to the soul.” And while that may be true, way down at the opposite end of the body, our feet our offer a surprising number of clues about what’s going on inside us. And during these summer months, where insulated winter boots have made way for sandals, as a general rule, feet are exposed more than during any other season. Whether we’re lounging at the beach or walking barefoot through the grass, our feet tend to see the light of day more when the weather is warm. While we take deliberate action each day to care for our teeth, our hair, our skin, and more, we tend to take our feet for granted. As with many other parts of the body, we all but ignore our feet, expecting that they’ll always magically operate just as nature intended. Until, that is, something makes us take notice.

Many things about our feet can reveal issues going on at a deeper level inside us. The good news is, we don’t have to be podiatrists to recognize when something doesn’t look right. Also, when combined with other, seemingly “mild” or innocuous symptoms, out-of-the-ordinary issues with our feet can lend evidence as to what might be going on elsewhere in the body.

Cold feet aren’t just for weddings. When feet are uncomfortably cold on a regular basis, this may be indicative of hypothyroidism (particularly if experienced along with cold hands and other symptoms of low thyroid function). When toes become painfully cold, or possibly even numb, it may indicate Raynaud’s phenomenon. Another clue to Raynaud’s would be a color change: in Raynaud’s, blood vessels in the fingers and toes constrict and narrow, resulting in reduced blood flow to these extremities, giving them a white or even blueish appearance. (It tends to happen during cold weather and/or when affected individuals are under a lot of emotional stress.) Little is known about what causes Raynaud’s, but it is separated into two categories: Primary Raynaud’s, called Raynaud’s disease, “happens on its own” and is not associated with an underlying associated medical condition, while secondary Raynaud’s, or Raynaud’s phenomenon, is a condition that results when more serious diseases reduce blood flow to fingers and toes.

Other uncomfortable sensations in the feet and toes may be indicative of more dire health issues. Feelings of numbness, or feeling like one is wearing socks or stockings when they aren’t, may be symptoms of peripheral neuropathy or diabetic neuropathy. Coldness, tingling, and “pins and needles” sensations in the feet (and hands) could be symptoms of pernicious anemia, which stems primarily from a vitamin B12 deficiency.

Ridges and lines in the toenails not due to trauma/injury might be signs of nutrient deficiencies. Iron insufficiency may result in fingernail ridges, abnormally shaped nails, or even nails that are concave in spots (called koilonychias), and this may be mirrored in the toenails. Unsightly yellowish toenails may be a sign of fungal infection (the most common cause), but they could also be a sign of compromised liver function, with jaundice causing a yellowing of skin, nails, and whites of the eyes.

Another indication of an underlying issue our feet clue us in to is enlargement of the big toe, particularly when accompanied by redness, pain, and a sensation of heat. Taken together, these may be a sign of gout. Originally thought to be due mainly to a high intake of dietary purines (high purine foods include animal proteins and beer), more recent evidence suggests that excess fructose consumption contributes to gout. Some studies suggest that overconsuming even natural fruits and fruit juices that are relatively higher in fructose compared to other fruits may also contribute to gout, so it’s not just sodas sweetened with sugar or HFCS, as are often “blamed” in such situations.

While our feet do send us these clear messages, most of these issues would occur along with other signs and symptoms. For example, numbness and tingling in the feet and toes are unlikely to be the only signs of peripheral neuropathy or pernicious anemia. And cold feet would certainly not be the only symptom of hypothyroidism a patient would experience. But for those people—and there are plenty—who tend to ignore all “the little nagging things,” until they become very serious problems, paying more attention to their feet might help hammer home the possibility that something more sinister is going on elsewhere in the body.

Feet aren’t glamorous. Unlike the adrenal glands or the gut microbiome, there isn’t a lot of buzz about them in popular health and nutrition news. But we ignore the signals they send us at our peril. by Dr. David Brady

I am no stranger to back pain.  In fact, with my diagnosis of fibromyalgia, my lower back pain has steadily intensified periodically.  But, no where to the state I found myself recently, immobilized and bedridden for four days.  

We've all been there.  Those of us who share this elusive diagnosis.  Lying with our backs on the bed, staring at the ceiling fan wondering when this agonizing pain will subside.  Taking 'as needed' pain medication, breathing slowly deeply, trying to meditate on a far away planet until we regain sanity again.  But, usually we can attribute it to something.  We over did it, kept going the other day with no rest or reprieve.  Started lifting heavy objects while helping someone move.  Or, there was an all-day family affair, and we were feeling on top of the world and just stayed too late, feeling those effects slowly creeping on us as we're saying our goodbyes.  

But what if you're down flat on your back and can't move?  Your mind wanders aimlessly trying to latch onto a possibility so that it doesn't happen again?  And nothing comes up?  Pure panic I can attest.  To make things worse you can't get up to go to the bathroom?  To get a drink?  To make something to eat?  

Well, that's a whole 'nother animal I can tell  you.   It descends like a plague of fear that you can't get a grip on.

Recently, I walked out to my garage.  I was going to take my bike out and go for a leisurely spin.  There was a candy cane on a table and part of it was touching my handlebars.  It was light plastic and weighed all of 5 ounces.  I moved it to the left on a table about six inches to free my bike.  I didn't bend down, I didn't twist.  I just moved it.  All of a sudden I felt a "tinge". I've had these before.  I stretch, but usually I can do a little work and then just migrate to a heating pad for a few hours.  It wasn't too bad, really.  I went shopping that day, and even made it to the beach on Sunday.  I went to work on Monday with  a heating pad and just babied that lower area being careful not to move too much.  By Tuesday it felt better so I took the heating pad home.  On Wednesday morning I woke up nearly pain free and went into work again without the heating pad.  

For some reason by noon the right side of my back began spasming.  My co-worker had one of those lay over the chair seat pad massagers that provides heat.  I quickly slipped that on and laid back for a bi,t taking in deep breaths.  I had to go outside to retrieve the mail.  "Maybe this will loosen things up," I thought.  I barely made it 200 yards before there was definitely a feel of a hot knife jabbing into my lower vertebrates along with all those back spasms.  I stayed.  Not a bright idea, but I just had taken off four days for a virus-type sickness.  "Let me get through a couple of more hours," I prayed.  I held myself up in the chair, trying to straighten my back and pasted a smile on my face.

I got home around 5 pm.  I asked my youngest son to plug in the heating pad.  Something was wrong I explained as this pain was from another dimension.  I eased myself down, and that was it.  Thirty minutes later I could not move.  Not anywhere.  Not rolling from left to right, not even reaching for my drink on my nightstand.  My legs, though, I could prop up on a 90 degree angle to relieve some of the back spasms.  Then I waited.  I took medication to ease the agony, but it barely took the edge off.  

Three hours later into this intense pain I had to go to the bathroom.  My dear son looked up the best way to get out of bed with debilitating back pain on the Internet.  "Ok, Mom, let me get an ice block.  If we press on the nerve we can freeze it.  You just need to roll onto your stomach, slide/crab crawl down to the edge of the bed.  Then put one foot on the floor, and I will lift you up quickly but steadily," he said.

So the nightmare began.  Move a few inches, place the ice block firmly in the area, wait a minute and move again.  On and on we proceed for 10 minutes until my on foot is on the floor.  "Ok, you ok?" he asks.

"No," I answer, but I have to go.

"Ok, take a deep breath, I'm going to put my arms under you to help support your torso and I'm ready," he responds.  

Up I go, and I scream.  Scream so loud because the pain is excrutiating.  I can't seem to put any pressure on that disk in my back.  "What can I do?" he asks.

Put your two hands out, let me place my palms in them from behind I state.  And on I walk at a 120 degree angle like an old Popeye cartoon.  Gasping for breath and yelling.  Yes, yelling it was worse than childbirth.  

He lowers me, and I can't pee.  Well, pee a little I do, but how can you when you are in that much pain?  I've never experienced such intensity.  I quickly finish and make my way back to the bed.  This only intensifies the spasms, and I must endure more pain for another 30 minutes.

Another two hours I call him with my cell phone. He is sleeping in the next room.  "It's time for another round," I say.  This time the pain flares for over an hour when I get back into bed.

By 4 am I grab a towel to do my business.  I'm done.  I'm beaten. I can't do this any longer.  I feel like a broken doll.  I can't move, I'm alone, and I'm scared. Worst of all, the pain is still there immobilizing me.  

By the am I call my doctor and my son scours the local stores to find a bedpan with no luck.  He comes back with puppy pads.  "That will have to do," I say.   My doctor informs me of what medications to take.  No one seems concerned, they see this all the time apparently.  My friends are yelling to go to the ER.  "How?" I ask them.  "I can't even move!"

By the third day the spasms have subsided.  I try to sit up, still unable to put any pressure on my back.  It is still excruciating.  My primary instructs me to call my neurologist.  Five hours later his assistant calls back with instructions.  "Double your muscle relaxers," she says.

"It has been three days!" I yell.  "I can't go to the bathroom.  Should I go the the ER?" I ask.

"Do you have feeling in your legs?  Are you able to go to the bathroom?"

"Yes and yes," I reply.

"Most likely no," she says.  "I got an appointment for you in four days. Hang in there," and hangs up.

I take the muscle relaxers as instructed. Six hours later I can get up with the help of a cane.  By the following day I can move around a bit more and more.  It takes five days of bed rest before I can attempt work.  I call the assistant again, "Is this normal?" I ask.  "Should I go back to work?" 

"No, wait until your appointment.  He'll give you a work release to go back when he sees you tomorrow," she says.

I hang up and order a bed pain on Amazon just in case this happens again.  No more trying to make things worse the next time by moving I think.  

During my appointment he checks me.  Makes me stand.  Makes me bend over, tests my reflexes and orders an MRI and an EMG.  "We will have to wait and see," he says.

"Is this normal?  I mean pain to migrate like that? For over a week?" I demand.

"Yes," he says.

"Just peachy," I think.  "Just peachy."  

But apparently this does happen.  I probably could have saved myself some agony by just lying still.  I wanted to share this for all the other Avenger/Ninjas who will attempt and struggle to get out of bed. Don't, just lie there till it passes.  Get someone to wait on you.  You won't be able to move anyway.  

Here is some more points from the Illinois Back Institute:

​Often, the most debilitating lower back pain, for both men and women, is the type that comes on suddenly, leaving you in significant pain with limited mobility. The severity of the pain and the suddenness can be alarming—but it’s very common. In the vast majority of cases, this back pain is not related to a serious disease or severe back problem, but could be due to something simple like muscle spasm or another musculoskeletal cause. When the exact origin of back pain isn’t clear, it’s referred to as nonspecific low back pain. This “mechanical” back pain is generally eased by lying down flat and made worse when you move your back, sneeze or cough.

The next most likely cause of sudden onset back pain is irritation to the nerve root emanating from the spinal cord, called sciatica. What makes sciatica pain distinct is that you generally also feel pain down one or both buttocks and thighs, even into the calf or foot. You may also feel pins and needles and/or numbness/weakness through the buttock, leg and on down along the entire path of the sciatic nerve. Nearly 90 percent of the time, this pain is caused by a slipped disc, also called a bulging or prolapsed disc pressing on the nearby nerve.

Disc injuries can come to light suddenly with minimal trauma--and as much as one-third of the population at any given time are walking around with disc bulges. These previously painless, silent back problems can suddenly begin to put pressure on the spinal cord nerves--when you do something as minor as bending to pick up a pen from the floor. Then the pain begins.

​Less common conditions causing low back pain

Cauda equina syndrome is rare, but considered an emergency. Permanent nerve damage may result. Get medical attention immediately if you suspect cauda equina. This disorder causes pressure on nerves at the very bottom of the spinal cord with symptoms which may include:

• Lower back pain
• Bowel and bladder problems like inability to pass urine
• Numb sensation in the saddle region, below the tailbone
• Leg weakness

Osteoarthritis is a common form of arthritis causing spinal pain and joint inflammation in older people. Ankylosing spondylitis is a form of arthritis that may strike young adults, bringing on pain and lower back stiffness. Rheumatoid arthritis may affect the spine along with other joints throughout the body. Telltale signs of these arthritic conditions include:

• Pain that gets worse hours after going to bed or upon waking
• Stiffness, in addition to back pain, in the morning after rising, lasting over 30 minutes
• Pain eased (and not made worse) by activity

Rare bone disorders, tumors and infection cause less than 1 percent of sudden onset low back pain. Symptoms and signs may include:

• Onset of non-injury-related back pain in someone over 50 or under 20 years old
• History of cancer of any part of the body
• Depressed immune system
• Fever
• Unexplained weight loss

Abdominal aortic aneurysm (enlargement of the abdominal artery) occurs mostly in males over 60 who smoke, have high blood pressure or high cholesterol. Symptoms include:

• Pulsating feeling near the navel
• Constant pain in the abdomen/side of abdomen
• Back pain

The best way to distinguish between back pain’s many causes is to see your back specialist or health care professional. Seek natural, non-invasive treatment whenever possible, such as proven-effective Functional Disc Rehydration. This innovative treatment was developed at the Illinois Back Institute. It is offered along with other personalized treatments to help patients achieve a pain-free life. Contact us for a free consultation with a back specialist.  

So, if you don't fall into one of those above categories.  Don't freak out.  Call your doctor.  If I had to do it all over again, I would have went right to the the specialist, my neurologist.  I feel I would have hit the ground walking faster.  I was just so emotionally immobilized, too, with fear.  Which of course, doesn't help.  My hopes in you reading this, you will be aware and act rationally realizing that it will pass.  No, you will not be stuck in that bed forever.  God Bless, and hang in there.  

It was of no surprise to me along with the degenerative disc diagnosis so came Peripheral Neuropathy.  After all, at least there is a connections here due to the fact both affect the central nervous system.  

What does concern me is an original statement from my neurologist when I was first diagnosed with fibromyalgia.  I had asked him, "So, feeling as I'm going down hill fast here, is this going to to get worse?" 

"It shouldn't," he replied.

Well, I can tell you there have been a whole host of symptoms that came upon me over the period of seven years that I would deem as "getting worse".  I've come to the conclusion that getting worse may be on the fibromyalgia side only.  After all, they don't know how it operates completely, and if you're a medical major you're not going to focus on other doctors specialties- just your own.  So maybe it wasn't going to get worse in the neurological sense.  

​Fibromyalgia and peripheral neuropathy are two conditions that affect the central nervous system, resulting in pain. Aside from muscle pain, fibromyalgia also involves sleep disturbance, mood changes, and memory issues. It is believed to be caused by a physical trauma or psychological stress, but the exact cause is still unknown. Fibromyalgia is often accompanied by other conditions, such as anxiety, irritable bowel syndrome, and depression.

Peripheral neuropathy refers to damage caused to the peripheral nerves, resulting in weakness and numbness. Peripheral neuropathy commonly occurs in the feet or hands.

The link between fibromyalgia and peripheral neuropathy

Fibromyalgia and peripheral neuropathy may share common symptoms, but stem from very different causes. The cause of fibromyalgia is not understood really, while neuropathy, on the other hand, can be caused by a host of different underlying issues.

Both fibromyalgia and neuropathy affect the central nervous system and cause extreme nerve pain. Both conditions are chronic and could also share similar treatment options. In fact, both can be managed through treatment, so working with your doctor on an appropriate treatment strategy for your fibromyalgia or peripheral neuropathy can help.

Unlike fibromyalgia, peripheral neuropathy can be prevented with proper management of the underlying causes (e.g., diabetes).

Fibromyalgia vs. peripheral neuropathy: U.S. prevalence

Roughly two to four percent of the U.S. population are affected by fibromyalgia. Estimates of U.S. prevalence were done based on the 1990 American College of Rheumatology (ACR) guidelines for the fibromyalgia diagnosis, accounting for roughly 10 million cases. It has since been argued that these estimates are too low, and the guidelines fail to capture many patients who could be living with the condition unknowingly.

Peripheral neuropathy affects 2.4 percent of the population, but the prevalence can get as high as eight percent in certain population groups. The most common type of neuropathy – diabetic sensorimotor polyneuropathy – may be present in 66 percent of type 1 diabetics and 59 percent in type 2 diabetics.

Fibromyalgia vs. peripheral neuropathy: Signs and symptoms

The key distinguishing symptom of fibromyalgia is tender points on the body. Other signs and symptoms of fibromyalgia include chronic muscle pain, muscle spasms or tightness, moderate or severe fatigue, decreased energy, insomnia, waking up feeling unrefreshed, stiffness upon waking or after staying in one position for too long, concentration problems, difficulty remembering and performing simple mental tasks (“fibro fog“), abdominal pain, bloating, nausea, constipation alternating with diarrhea (irritable bowel syndrome), tension or migraine headaches, as well as jaw and facial tenderness. With fibromyalgia comes sensitivity to odors, noises, bright lights, medications, certain foods, and cold. Fibromyalgia patients report feeling anxious or depressed, numbness or tingling in the face, arms, hands, legs, or feet, increase in urinary urgency or frequency (irritable bladder), reduced tolerance for exercise and muscle pain after exercise, and a feeling of swelling (without actual swelling) in the hands and feet.

Signs and symptoms of peripheral neuropathy depend on the affected nerve. Nerves are classified into sensory, motor, or autonomic. Sensory nerves receive sensations, motor nerves control muscle movement, and autonomic nerves control functions such as blood pressure, heart rate, bladder, and digestion.
Some symptoms that may arise in peripheral neuropathy include:

• Gradual onset of numbness, tingling, or prickling from the hands and toes moving throughout the limbs
• Sharp, jabbing, throbbing, freezing, or burning pain
• Extreme sensitivity to touch
• Lack of coordination, falls
• Muscle weakness or paralysis

If the autonomic nerves are affected, a patient may experience heat intolerance and sweating, bowel, bladder, or digestive issues, as well as changes in blood pressure causing dizziness or lightheadedness.

Comparing fibromyalgia and peripheral neuropathy:

The cause of fibromyalgia is largely theorized, as it is not well understood. Researchers and doctors believe that a fibromyalgia patient experiences amplified pain as a result of abnormal sensory processing in the central nervous system. Much research has detected physiological abnormalities in fibromyalgia, including increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan, and abnormalities in cytokine function. Other fibromyalgia triggers include genetic factors and traumatic events or injuries.

Neuropathy can be due to many other conditions and ailments, and so there is no single cause. Peripheral neuropathy is associated with nerve damage, which may be caused  by alcoholism, autoimmune diseases, diabetes, exposure to poisons, medications, infections, inherited disorders, trauma or pressure on the nerves, tumors, vitamin deficiencies, bone marrow disorders, and other conditions, including diseases that affect the liver, kidneys, and thyroid.

Differentiating fibromyalgia and peripheral neuropathy: Risk factors and complications

Risk factors for fibromyalgia include sex – women are at a higher risk of fibromyalgia than men, a family history of fibromyalgia – a genetic component to the disease, and a rheumatic disease diagnosis.

One of fibromyalgia complications is poor ability to function due to lack of sleep, which worsens symptoms. Anxiety and depression, too, may be a result of fibromyalgia as it is not a well-understood condition. Living in pain can be frustrating when others simply don’t understand what you are going through, especially because there is no specific cure or treatment.

Risk factors for peripheral neuropathy include poorly controlled diabetes, alcohol abuse, vitamin deficiencies, infections like Lyme disease, autoimmune diseases, exposure to toxins, repetitive motions, a family history of neuropathy, as well as kidney, liver, or thyroid disease.

Complications resulting from peripheral neuropathy include burns and skin trauma, infection and falls due to loss of sensation – potentially leading to disability.

Fibromyalgia vs. peripheral neuropathy: Diagnosis and treatment

There isn’t a specific test for fibromyalgia, but doctors may use a form of testing that checks 18 specific trigger points that have been found to be present in majority of fibromyalgia patients. Not all doctors use trigger point exams anymore, but rather they narrow down on a fibromyalgia diagnosis if a person has experienced widespread pain for at least three months. Your doctor may also refer you for some blood work to rule out other conditions.

Treating fibromyalgia can be difficult as its exact cause is unknown. Therefore, the goal of fibromyalgia treatment is symptom management. A doctor may prescribe analgesics, or painkillers, to address fibromyalgia. However, there is a risk of developing addiction to these drugs, so doctors may recommend this option with caution. Nonsteroidal anti-inflammatory drugs (NSAIDs) can also be taken for pain management, but once again long-term use of these drugs can yield unwanted side effects. In some cases, antidepressants may be prescribed as well.

Some alternative and complementary therapies and treatments for fibromyalgia include massages, acupuncture, cognitive behavioral therapy, movement therapies, and chiropractic.

Peripheral neuropathy is diagnosed based on a review of the patient’s full medical history and a neurological examination. Tests that could help diagnose peripheral neuropathy include blood tests, imaging tests like MRI, nerve function tests, nerve biopsy, and skin biopsy. Not only do these tests help diagnose peripheral neuropathy, but they also rule out other potential causes for your symptoms, too.

Treatment for peripheral neuropathy implies addressing its underlying cause. This could involve managing diabetes, treating infections, or treating other diseases. Some medications that may be prescribed for neuropathy include pain relievers, anti-seizure medications, topical treatments, and antidepressants.

Other therapies that can aid in the peripheral neuropathy treatment include transcutaneous electrical nerve stimulation (TENS), plasma exchange and intravenous immune globulin, physical therapy, and surgery.

Patients may also be inclined to try acupuncture, alpha-lipoic acid, herbs, and amino acids as an alternative mode of peripheral neuropathy treatment.

It’s of utmost important to manage and control any underlying issues that might have contributed to the disorder. For example, cutting on your alcohol consumption or managing your diabetes. I know many of you many not be diagnosed with diabetes, but I'll bet if you have some form of neuropathy, your sugar tests are higher than normal.  

It didn't surprise me to have another interruption to my daily routine after I was diagnosed with Fibromyalgia. My back began to ache in my upper and lumbar spine with added stinging and jabbing jolts to add more effect.  I was baffled in the beginning wondering will all these new manifestations ever suppress?  

They didn't and new symptoms continue to evolve sending me to new specialists yearly.  But this back syndrome was one that stayed with me until it continually worsened and my neurologist sent me for an MRI and EMG two years after my initial diagnosis with fibromyalgia.  

When the results were in, I had degenerative discs and nephropathy in the the upper spine.  He mentioned an interesting point, "I'm not sure if the fibromyalgia caused this or this caused the fibromyalgia."  That is because there is not a lot of concreted evidence out there linking the two. But he also added, "Most of my fibromyalgia patients have nephropathy and degenerative discs." 

Cervical degenerative disc disease is a common cause of neck pain and radiating arm pain. It develops when one or more of the cushioning discs in the cervical spine starts to break down due to wear and tear. There may be a genetic component that predisposes some people to more rapid wear. Injury may also accelerate and sometimes cause the development of the degenerative changes.

How Cervical Discs Can Degenerate

Normally, there are six gel-like cervical discs (one between each of the cervical spine’s vertebrae) that absorb shock and prevent vertebral bones from rubbing against each other while the neck moves.

Each disc is comprised of a tough but flexible outer layer of woven cartilage strands, called the annulus fibrosus. Sealed inside the annulus fibrosus is a soft interior filled with a mucoprotein gel called the nucleus pulposus. The nucleus gives the disc its shock absorption property.

​In children, the discs are about 85% water. The discs begin to naturally lose hydration during the aging process. Some estimates have the disc’s water content typically falling to 70% by age 70,1 but in some people the disc can lose hydration much more quickly.

As the disc loses hydration, it offers less cushioning and becomes more prone to cracks and tears. The disc is not able to truly repair itself because it does not have a direct blood supply (instead getting nutrients and metabolites via diffusion with adjacent vertebrae through the cartilaginous endplates). As such, a tear in the disc either will not heal or will develop weaker scar tissue that has potential to break again.

​The Course of Cervical Degenerative Disc Disease

Cervical degenerative disc disease is not technically a disease, but rather a description of the degenerative process that discs located in the cervical spine go through. Essentially all people who live long enough will develop degenerated discs.

Studies show that a plurality of adults have no symptoms related to degenerative disc disease, even though a high percentage of these adults still shows signs of disc degeneration on an MRI somewhere on the spine. One study found that about half of people start showing some signs of disc degeneration on an MRI by their early 20s. Another study found that about 75% of people under age 50 have disc degeneration while more than 90% of people over age 50 have it.

​When degenerative disc disease develops in the cervical spine, it can occur in any of the cervical discs but is slightly more likely to occur at the C5-C6 level.

In cases where cervical degenerative disc disease does cause pain, it can happen in various ways. In some instances, the disc itself can become painful. People are more likely to experience this type of discogenic pain in their 30s, 40s, or 50s.

When symptoms from cervical degenerative disc disease become chronic, the pain and/or symptoms are likely related to conditions associated with disc degeneration, such as a herniated disc, osteoarthritis, or spinal stenosis. Depending on the cause, the pain may be temporary, or may become chronic. To give an example, pain from a herniated disc is likely to eventually go away on its own, but pain from osteoarthritis may require treatment on a chronic basis.

​Risk Factors for Cervical Degenerative Disc Disease

While nearly everyone eventually gets cervical degenerative disc disease with age, there are some factors that can make it more likely to develop sooner and/or become symptomatic. These risk factors could include:

• Genetics. Some studies of twins indicate genetics play a bigger role than lifestyle in determining when cervical degenerative disc disease develops and if it becomes painful.
• Obesity. Weight has been linked to risk for developing degenerative disc disease.
• Smoking. This habit can hinder nutrients from reaching the discs and cause them to lose hydration more quickly.

I can tell you I fall under none of the above categories.  So I must be an anomaly or my predisposition may be linked with fibromyalgia.  Despite several recent studies out there confirming there is no link to fibromyalgia. There was an interesting addition added to The Journal of Physical Science: 

​Fibromyalgia syndrome (FMS) is a clinical presentation commonly seen in the middle age women, which is accompanied by psychosomatic complaints such as widespread pain and chronic fatigue along with sleep disorder or non-relaxing sleep, paresthesia and subjective swelling of the hands, migraine-type headache, irritable bowel syndrome and dysmenorrhea. Although musculoskeletal pains are generally localized in the neck, interscapular region and low back, they may also spread to the arm and to the chest. During the examination, objective findings other than sensitive points cannot be detected and laboratory analyses have normal results.

Most common reasons of the pain spreading to the neck and to the arm include cervical spondylosis and cervical root compression. Pains that result from the disc herniations located in the cervical region are generally radicular and they may be accompanied by neurologic deficits, such as loss of strength, paresthesia, reflex defect and atrophy. Moreover, in some cases, Raynaud-like swelling and vasomotor changes may be integrated in the clinical presentation.

Patients with fibromyalgia continuously present for a visit and for the periodic controls with the complaints of neck, shoulder, arm, low back and knee pains. The patients resist to the therapy and they ask why they cannot be healed.

It may be very difficult to convince the patients to be treated. Some patients are not so happy despite all therapeutic methods and the doctors may hesitate about the diagnosis with some patients. A cervical MRI may be necessary to elucidate the patients and to eliminate our doubts in the patients that raised a hesitation. In both diseases, cervical and arm-shoulder pains are similar and the laboratory values are normal.

Interestingly enough, they found a VERY HIGH rate of those suffering with fibromyalgia were diagnosed with disc degeneration MORE SO than the average population thought before to have the disease present normally.

Yet, many patients suffering from fibromyalgia are not sent to the usual MRI and EMG testing to note if such issues are present.  Be certain to ask for such testing if you feel you may suffer from such problems. Therapy is available for relief.   

Here's something we don't discuss here often. Back Pain. Yet several past studies have noted that as many as 90% of fibromyalgia suffers have encountered back pain in one form or another since their diagnosis.
​  
When you have fibromyalgia, it may seem as if you just can’t get a break from the pain — which may include an aching back. As many as two-thirds of people with chronic low back pain also have fibromyalgia. Looking at the numbers from the other direction, up to 49 percent of people with fibromyalgia have lower back pain. In fact, back pain is so prevalent among people with fibromyalgia that it was once one of the symptoms doctors looked for in making a fibromyalgia diagnosis.

There’s no doubt that living with fibromyalgia is challenging enough on its own, let alone when you have back pain. But it may make you feel a little better to know there is an explanation for the intensity of the pain you’re going through.

“Both back pain and fibromyalgia belong to a group of disorders called central hypersensitivity syndromes,” says pain management specialist Ronald Staud, MD, professor of medicine at the University of Florida in Gainesville. Although the roots of the two conditions differ for example, back pain could be caused by a damaged vertebral disk — the pain experiences of the two conditions bear some similarities. Among them is the sense that these chronic pain conditions cause you to be on a “high alert” setting of sorts (doctors call it hyperarousal). And then, to top it off, the pain wears you down, causing fatigue, depression, and anxiety that make living with fibromyalgia and back pain all the more draining.

“The hyperarousal is really a normal response,” says Dr. Staud. Normal, yes, but it throws a monkey wrench into finding the right combination of treatments to ease two very painful problems.

One essential is getting an accurate diagnosis of your back pain. According to Staud, many physicians who treat fibromyalgia can also assess back pain’s possible causes. However, ask for a referral to a pain specialist if you have any concerns about your doctor’s ability to parse out the factors contributing to your back pain and prescribe the appropriate medical treatment.

Treating Fibromyalgia and Back Pain

Pain medication is usually part of the prescription for fibromyalgia symptoms but often isn’t enough for most people, especially if a back condition is involved. Putting together a multipart pain plan is a must, says Staud. This is even more true if you need specific therapy for your back. Consider these additional ideas to create a comprehensive treatment strategy that may combine traditional and alternative approaches:

• Lifestyle changes. Both back pain and fibromyalgia symptoms may improve as you work on a healthier lifestyle — adjusting your diet, increasing exercise, and losing weight if needed.
• Mental health treatment. Anxiety, depression, and trouble sleeping can all make pain feel worse. Comprehensive treatment strategies may include therapy and medication targeted to depression and anxiety, says Staud.
• Physical therapy. “Back pain is the mainstay of physical therapists,” says Staud. Physical therapists can teach you how to move through your day more effectively and show you stretches to ease back pain and perhaps make living with fibromyalgia easier.
• Alternative treatment approaches. Acupuncture, biofeedback, and music therapy can help ease back pain. According to Staud, pain management specialists are well-versed in the complexity of pain treatment and will be open to any questions you might have about alternative approaches. Talking with your team about options you’re considering will also help you avoid any interactions between alternative treatments and prescription medications.
• Education. Finally, a little knowledge can go a long way toward easing some of the anxiety you may be feeling. Talk with your medical team about the physiology of pain and the complex factors that influence your perception of pain when you are facing conditions related to hypersensitization.

When you’re struggling with low back pain and fibromyalgia, you might feel as though you’re fighting two battles. But a combination of therapies — some aimed at fibromyalgia, some aimed at the back pain, and some aimed at both — is more likely to bring you symptom relief.
​
The most important thing to remember is that we are subjected to a myriad of strange pains. In fact, we become so accustomed to pain that we are unsure if those various pains could be significant.  If you have insurance, push that testing.  Get that MRI and EMG if you feel that something is just not right.  Don't just be lining up for that fastest drug on the clinic dispense list for relief.  

I recently had an unexpected accident.  Accidents for patients of Fibro can be numerous at times as we lose our balance, become disoriented, and drop items for some unknown reason.  That last one still resonates constantly with me as glasses have a tendency to slide from my hand crashing to the floor.

But this last one was odd.  I was moving a rather large picture frame that unbeknownst to me had a cracked glass in its framing.  As I moved it, a huge triangle of glass landed directly on the top of my foot. And of course it happened to be the very point of the triangle.  Within a matter of seconds there was a five- inch pool of blood forming under my foot.   As I scrambled to balance, large three-inch droplets of blood began scattering on the tiles below me.  I quickly put pressure on the gaping wound, and began hopping to my closet to attain a large, thick dish rag.  Blood quickly soaked the dishrag, and I was forced to form a tourniquet.  This only enabled a quick spray to ensue covering my walls from three to four feet in length.  Something was wrong, I was bleeding out.  I had hit a main vein.  

I rushed hobbled over to my son's bedroom and yelled out, "I need to get to the hospital, I'm bleeding out."

My son rushes from his room and comes in contact with the tiles in the bedroom, hallway, and bathroom and yells, "Oh, my God, Mom, what happened?  Get in the car we need to go to the ER."

After 2 hours in the ER wrapped up tightly the blood began to stop.  I was sutured and sent home. Things seemed fairly presentable until the next day when I began experiencing signs of anemia.  

Symptoms common to many types of anemia include the following:

• Easy fatigue and loss of energy
• Unusually rapid heart beat, particularly with exercise
• Shortness of breath and headache, particularly with exercise
• Difficulty concentrating
• Dizziness
• Pale skin
• Leg cramps
• Insomnia

But, it didn't last a day.  In fact, it has been one full week since the accident, and I'm still reeling from it.  I began to peruse the internet trying to find an answer.  I suffer from CFS, of course with the fibromyalgia, and my energy reserve is always on low ready for sleep mode at any given time.

What I found was an interesting article on blood volume and CFS/ME.  I'd like to share it with you.  Who would have thought that blood volume interacts with these chronic illnesses?  No one understands why, but it makes perfect sense that those of us afflicted may need to take more time to heal ourselves when these types of accidents happen.  Of course I was told by the ER doctor that I'd be good to go in a day or so to work.  It happened Saturday afternoon, and Monday was a work day.  Wish I knew this and took a day or two off.

By Dr. David S. Bell

During a recent lecture I mentioned some old data concerning blood volume. I was asked to put my thoughts and what I had said on paper. Although it is not new information (the first ME blood volume paper was in 19951) I think it is still an important piece of the puzzle. The first slide is a description of what is meant by low blood volume as distinct from anemia.

In this slide, imagine three buckets and in each is all the blood of three different persons. The first is a healthy person with roughly five quarts of blood divided into two portions, the red blood cells which carry oxygen and the plasma. The second is a person with anemia. In this person the total volume of blood is normal, but the proportion is not. In anemia, the red cells are reduced compared to normal, and this reduction causes fatigue. In the third bucket, a person with ME has low blood volume, but the proportion of red blood cells and plasma is normal. The accumulated volume, instead of being five quarts is down to three or four quarts.

In the first study of blood volume in ME, eighty percent of ME patients were abnormal compared to historical controls1. This was subsequently confirmed by a study out of Miami2. In addition, the volume has been studied in POTS which can co-exist with ME in up to 40%3. And the blood volume can be strikingly low.

Let us put this in context. If a person loses 25% of his or her blood in a car accident, it can be fatal. But the body’s mechanism of anti-diuretic hormone, shunting, and other mechanisms can correct the blood loss quickly. In ME, these mechanisms are not at work, something that has caused me many sleepless nights.

The measurement of blood volume is rarely done now. The most accurate test is the Chromium51 assay. In this test, done in the nuclear medicine department of a University hospital, a tube of blood is drawn from the patient, carried into the back room and the red blood cells are labeled with Chromium51. The Albumin in the plasma portion is labeled with Albumin 125 and the blood is re-injected back into the patient. After an hour or so the labeled blood is mixed thoroughly with the rest of the patient’s blood, and another tube of blood is drawn and carried into the back room. There the amount of Chromium51 and Albumin 125 are measured. By calculating with the patient’s weight, a very accurate determination of the blood volume is made.

A newer test, the Daxor BVA-100 (Blood Volume Analyzer) is similar, although I have not yet seen results from ME patients as yet.

The Chromium51 test was devised in the 1960’s to see how much fluid a clinician should remove with diuretics in hypertension and congestive heart failure. The test is not needed for this now, but it was said that with this test you could predict who lived at the bottom of a mountain and who lived at the top. (At the top you need more blood because the air is thin). Some people have said the blood volume reduction is no big deal because astronauts get it. But their reduction is in the 15% range. It is caused by the lack of gravity permitting the blood flow throughout the body to increase, and the kidneys, a little confused, get rid of what they see as the ‘extra’ fluid.

A few years ago, a woman astronaut who had been in the space station for a while returned to earth and gave a short interview to the press. During this interview she collapsed and had to be helped off the podium. Her volume was about 83% of normal due to her time in space. After returning to earth about a quart of blood went into her legs because of gravity while standing and this caused such a drop in cerebral blood flow that she became syncopal. And she had a small drop in volume. In contrast, ME patients have a volume that can be as low as 50% of normal.

Mechanisms of Blood Volume Loss

Reductions in Anti-diuretic Hormone (ADH) – There are several mechanisms that come into play when the blood volume falls. The first is the hormone ADH (anti-diuretic hormone) which is missing in diabetes insipidus (not sugar diabetes or diabetes mellitus). In diabetes insipidus an injury or tumor of the pituitary causes ADH production to halt and persons with this condition urinate a great deal and carry around water jugs with ice water (sound familiar?)

There have been a number of studies on DI and ADH and without going into details, ADH can be produced in persons with ME hypovolemia. It is just that the pituitary does not seem to think that the hypovolemia is wrong or bad, no big deal. However something recognizes it as a big deal because people with ME can drink up to three gallons of water daily. When I asked an endocrinologist about this, he said it was ‘psychogenic water drinking.’

Reductions in Blood Vessel Diameter – After wrestling with this problem for many years, the only explanation I can come up with is that the cumulative sum of blood vessel diameter is reduced. The pipes are smaller than they should be. This would mean that the body has re-adjusted to the decreased flow of blood. Part of the adjustment is to shunt blood to the heart, lungs and kidneys and avoid the brain. An excellent theory would be that there is an autoimmunity4 to something that regulates blood vessel size, and this decreases both circulating blood volume and cerebral blood flow5, 6. The amount of autoimmune vasoconstriction would not need to be great as there are many miles of blood vessels in the body.

Treatment Anecdotes

IV Saline Given Early in the Illness

One reason I favor this theory is that with the administration of one liter of normal saline can nearly reverse the symptoms of ME in about three quarters of patients. This effect, however, wears off within 24 hours and then everything reverts to the newly established normal decreased flow. A similar mechanism may be at play in septic shock, where, at a certain point, even with antibiotics and fluids, the mechanism causing the shock cannot be reversed.

However, and this point is very controversial, I saw two adolescents with two to three months of typical ME (note that it cannot be diagnosed until six months of symptoms have elapsed) and gave them saline infusions daily for a week. For both adolescents, the symptoms they had disappeared never to return, although I have not had contact with them now for several years.

Prior to these two adolescents, I saw many ME patients who had the illness at three months, and all stayed ill past the six month mark. If this is true, then early recognition may offer a way to avoid full ME. This material cannot be published because it is so speculative, but if I had a child or relative with what looked like early ME, I would certainly give IV saline.

IV saline was a treatment I used for 22 adults with ME. As mentioned previously, 20% of ME patients had a volume above 80% of normal, and IV saline did not help them. Ironically, they were the most ill of the patients I treated. When I tried to infuse saline they had to stop after about 200 cc’s. From what they said, I could imagine that their cerebral circulation was so constricted that trying to force more fluid into the vessels could not be tolerated. But, there has been almost no research in this area.

Blood Transfusion

Many years ago I published a book online called Faces of CFS. In this book I described a woman with very severe ME who had a blood transfusion. About six weeks before this episode, she had a standard blood volume test which showed her to have about 64% of normal blood volume. She had been feeling ill one day and had ingested two gallows of water or other liquids.

Then, probably because she took too many ibuprofen tablets, she vomited blood. At the emergency ward, a hematocrit (Hct) showed anemia, due to a low volume to start then diluted with two gallons of water. I don’t think the vomiting blood contributed anything. But she was given two units of packed cells to be on the safe side.

The next day she felt wonderful; she felt ‘almost normal’, the first time she had said that in the years I had known her. Because she had been a nurse at the local hospital, she saw a hematologist who took her on. After about six weeks she gradually began to decline back to where she had been prior to the transfusion. After a few weeks of decline, the hematologist gave her another transfusion, and again she felt well. This continued for many months until the hematologist said he could no longer give the transfusions because of the risk of her developing allergic reactions to them.

Many years ago there was a condition called ‘idiopathic hypovolemia’, a condition diagnosed by a low blood volume that no one could explain7. Some hematologists treated it with blood transfusion with good results. In what I have read concerning this condition I have not seen the symptoms described, perhaps because the symptoms were so typical of a low blood volume. I have always wondered if they were actually treating ME.
However, there is an important point to this treatment. It does not cure the illness, even when the symptoms have been largely relieved. It makes a person feel better but there is still ‘something there’; people can get back to work or return to school, but the hypovolemia is not the primary effect of getting ME, it is a secondary effect.

IV Saline II

There are a few other anecdotes I would like to share. I had a 38 year old man who was employed by the Navy who had developed typical moderately-severe ME. After his initial evaluation I ordered a blood volume test followed by the usual screening blood tests. His volume was about 70% of normal for his weight and sex. He was also hypertensive and very bright.

As no one had been able to control his hypertension, I suggested that we might try to treat his hypertension with an infusion of saline. Any hematologist or cardiologist reading this might faint straight away, because you normally do not want to volume expand someone with hypertension, but this is a true story. The patient agreed.

He lay resting on the examining table for ½ hour while his blood pressure and pulse were recorded, roughly 180/115 blood pressure and 110 pulse even though he was not particularly nervous. One liter of saline was infused slowly while Paula took his blood pressure frequently and I paced the halls taking Valium™.
The blood pressure came down to 90/60! He had ‘hypovolemic hypertension,’ meaning that because his blood volume was low, the muscles around his arteries had clamped down causing it to look like standard ‘too much blood’ hypertension. In retrospect, he remembered that diuretics made him feel worse.

IV Saline III – Sleep

Another weird anecdote: one patient with low volume and typical ME got a liter of saline and promptly fell asleep. She had a particularly bad sleep disorder with prominent insomnia, and whenever she had a saline infusion she would sleep well, with ‘restorative sleep.’ She would prefer saline to any sleeping pill available.

Military Anti-Shock Trousers 

A third anecdote: I accompanied one patient to Dr. Streeten’s office, a patient with very prominent orthostatic intolerance. When she stood quietly she would start swaying, become confused, have excruciating pain and slur her speech. At the time Dr. Streeten was studying the effect of MAST (Military Anti-Shock Trousers) trousers on the orthostatic intolerance. These trousers, found in every ambulance, inflate with air to create a sort of total body cast for patients with fractures of the pelvis and other problems.

My patient was standing quietly with the trousers in place but not inflated, and she began to have her symptom exacerbation. Dr. Streeten then inflated the trousers to 35 mm Hg, and within seven seconds she shook her head and said she felt wonderful. The slurred speech disappeared along with the pain, cognitive and other ME symptoms. Dr. Streeten published these findings8.

The reason this is such an important study is that the only thing the MAST trousers could have done is to improve the blood flow through the brain. Because of the instant and dramatic effect, several of my patients went and bought a set of MAST trousers, but they are not practical. Although you may feel better, you cannot do anything being encased in a whole-body cast. I have always wondered what would happen for a patient with very severe (bed-ridden) ME to have this trial.
​
All of this is interesting, but just a part of the 9,000 studies that have been done and forgotten in the history of ME. I think this is a shame because there is something important about the low blood volume in ME patients. And it has a cause, even though it has not been found to date. Actually, it has not been looked for, as far as I can tell.

​References

1. Streeten DH, Thomas D, Bell DS. The roles of orthostatic hypotension, orthostatic tachycardia, and subnormal erythrocyte volume in the pathogenesis of the chronic fatigue syndrome. Am J Med Sci. 2000; 320(1): 1-8.
2. Hurwitz B, Coryell V, Parker M, Martin P, LaPierre A, NG K, et al. Chronic Fatigue Syndrome: illness severity, sedentary lifestyle, blood volume, and evidence of diminished cardiac function. Clin Sci. 2009.
3. Stewart J, Glover J, MS M. Increased plasma angiotensin II in postural tachycardia syndrome (POTS) is related to reduced blood flow and blood volume. Clin Sci. 2006; 110(2): 255-63.
4. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).
5. Loebel M, Grabowski P, Heidecke H, Bauer S, Hanitsch L, Wittke K, et al. Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome. Brain Behav Immun. 2015.
6. Tanaka H, Matsuskima R, Tamai H, Kajimoto Y. Impaired postural cerebral hemodynamics in young patients with chronic fatigue syndrome with and without orthostatic intolerance. J Pediatr. 2002; 140(412-417).
7. Fouad F, Tadena-Thome L, Bravo E, Tarazi R. Idiopathic hypovolemia. Ann Intern Med. 1986; 104: 298-303.
8. Streeten D. The role of impaired lower-limb venous innervation in the pathogenesis of the chronic fatigue syndrome. Am J Med Sci. 2001; 321: 163-7.

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