Daily Update - I was mistaken

Well, it's been raininy  rainy today and I am hurting ptretty  pretty badly. I alkso also am having some fibro fog issues and generally fee like crap. It hurts to sit. It hurst hurts to stand, it hurts to do pretty much anmy any and everything and I cannot wait until it's time to go home today.

I left the mistakes in this updaTE AS A REMINDER TO MYSLEF AND A WAY TO TRACK ISSUES. update as a reminder to myself and as a way to track issues.

It was has taken me 15 minutes to complete this update.

The weather for today is:

Temp: 58°F and rain storms
Barometric Pressure: 29.81 in
Dew Point:  57 °F
Humidity:  96 %

"How Do You Feel?" - CFS/Fibromyalgia Pain Scale

The above picture is what some people think of when they think of telling people about their pain, but the scale ot even a "1 to 10" scale is not sufficicient to describe the pain tha people with Fibromyalgia experience.

Below is a scale for rating CFS and Fibromyalgia Pain. It was developed by Bruce Campbell and I feel that it can be used to adequately help define what I believe that Fibromyalgia suffers have a difficult time defining.


What do you say when the doctor (or others) ask, "How are you feeling today?" or, "On a scale of 1 to 10, how do you feel?" Here is something that will help you make that determination.

100-- Fully recovered. Normal activity level with no symptoms.

90--Normal activity level with mild symptoms at times.

80--Near normal activity level with some symptoms.

70--Able to work full time but with difficulty. Mostly mild symptoms.

60--Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.

50--Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.

40--Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.

30--Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.

20--Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.

10--Mostly bedridden. Severe symptoms.

0-Bedridden constantly. Unable to care for self.

This scale was copied from recoveryfromcfs.org by Bruce Campbell, PhD.

Daily Update - Out of Commission

Well today is Saturday and I have Fibromyalgia pain all over my body and can barely walk and feel foggy and irritable.

I feel bad because I am sitting here on a beautiful day and am missing this time that could be spent outside... or even be spent upright.

Oh well... you can only do what you can do.

Daily Update - Home From Work

I am home from work today after having overdone it last night. Our youngest son had a rugby game last night that was extra long and late at night (8:00PM). By the time the game was over and we drove the 45 minutes home it was 11:15. Settling in and taking my medicine, I fell asleep at 11:45.

I woke up from body pain at 1:14AM and promptly rolled over and went back to sleep.

This morning, I have a headache and body pains, including my feet and legs to the point where I can barely walk today.

I am going to take some medicine and lay down.

Anyway, the weather for today is:

Temp: 41 °F and clear
Barometric Pressure: 30.46 in
Dew Point:  30 °F
Humidity:  65 %

Describing Pain

What is Pain? What causes pain? This post comes from http://www.medicalnewstoday.com/articles/145750.php and is a great way to look at describing pain to a doctor or others. If you're like me, sometimes it is difficult to describe the type of pain that you are having. People without a chronic condition may be wondering what I mean by that statement, but it's true.

When seeing a doctor, especially for something new, I try to explain only the new symptoms that I am having.

"Yes, doctor, I have pain there, but it is not the same pain that I usually have."

Other times, it may be difficult to try to describe the pain in words. It's difficult to try to write about it because often it cannot be adequately described. Yes, I know that that sounds strange.

Anyway, here is the article...

The English word 'pain' probably comes from Old French (peine), Latin (poena - meaning punishment pain), or Ancient Greek (poine - a word more related to penalty), or a combination of all three.

In medicine pain relates to a sensation that hurts. If you feel pain it hurts, you feel discomfort, distress and perhaps agony, depending on the severity of it. Pain can be steady and constant, in which case it may be an ache. It might be a throbbing pain - a pulsating pain. The pain could have a pinching sensation, or a stabbing one.

Only the person who is experiencing the pain can describe it properly. Pain is a very individual experience.

Types of pain

Acute pain - this can be intense and short-lived, in which case we call it acute pain. Acute pain may be an indication of an injury. When the injury heals the pain usually goes away.

Chronic pain - this sensation lasts much longer than acute pain. Chronic pain can be mild or intense (severe).

How do we classify pain?

Pain can be nociceptive, non-nociveptive, somatic, visceral, neuropathic, or sympathetic. Look at the table below.

Pain
Nociceptive		Non-Nociceptive
Somatic	Visceral	Neuropathic	Sympathetic

Nociceptive Pain - specific pain receptors are stimulated. These receptors sense temperature (hot/cold), vibration, stretch, and chemicals released from damaged cells.

Somatic Pain - a type of nociceptive pain. Pain felt on the skin, muscle, joints, bones and ligaments is called somatic pain. The term musculo-skeletal pain means somatic pain. The pain receptors are sensitive to temperature (hot/cold), vibration, and stretch (in the muscles). They are also sensitive to inflammation, as would happen if you cut yourself, sprain something that causes tissue damage. Pain as a result of lack of oxygen, as in ischemic muscle cramps, are a type of nociceptive pain. Somatic pain is generally sharp and well localized - if you touch it or move the affected area the pain will worsen.

Visceral Pain - a type of nociceptive pain. It is felt in the internal organs and main body cavities. The cavities are divided into the thorax (lungs and heart), abdomen (bowels, spleen, liver and kidneys), and the pelvis (ovaries, bladder, and the womb). The pain receptors - nociceptors - sense inflammation, stretch and ischemia (oxygen starvation).

Visceral pain is more difficult to localize than somatic pain. The sensation is more likely to be a vague deep ache. Colicky and cramping sensations are generally types of visceral pain. Visceral pain commonly refers to some type of back pain - pelvic pain generally refers to the lower back, abdominal pain to the mid-back, and thoracic pain to the upper back (see below for the meaning of referred pain).

Nerve Pain or Neuropathic Pain

Nerve pain is also known as neuropathic pain. It is a type of non-nociceptive pain. It comes from within the nervous system itself. People often refer to it as pinched nerve, or trapped nerve. The pain can originate from the nerves between the tissues and the spinal cord (peripheral nervous system) and the nerves between the spinal cord and the brain (central nervous system, or CNS).

Neuropathic pain can be caused by nerve degeneration, as might be the case in a stroke, multiple-sclerosis, or oxygen starvation. It could be due to a trapped nerve, meaning there is pressure on the nerve. A torn or slipped disc will cause nerve inflammation, which will trigger neuropathic pain. Nerve infection, such as shingles, can also cause neuropathic pain.

Pain that comes from the nervous system is called non-nociceptive because there are no specific pain receptors. Nociceptive in this text means responding to pain. When a nerve is injured it becomes unstable and its signaling system becomes muddled and haphazard. The brain interprets these abnormal signals as pain. This randomness can also cause other sensations, such as numbness, pins and needles, tingling, and hypersensitivity to temperature, vibration and touch. The pain can sometimes be unpredictable because of this.

Sympathetic Pain

The sympathetic nervous system controls our blood flow to our skin and muscles, perspiration (sweating) by the skin, and how quickly the peripheral nervous system works.

Sympathetic pain occurs generally after a fracture or a soft tissue injury of the limbs. This pain is non-nociceptive - there are no specific pain receptors. As with neuropathic pain, the nerve is injured, becomes unstable and fires off random, chaotic, abnormal signals to the brain, which interprets them as pain.

Generally with this kind of pain the skin and the area around the injury become extremely sensitive. The pain often becomes so intense that the sufferer daren't use the affected arm or leg. Lack of limb use after a time can cause other problems, such as muscle wasting, osteoporosis, and stiffness in the joints.

What is referred pain?

Also known as reflective pain. When pain is felt either next to, or at a distance from the origin of an injury it is called referred pain. For example, when a person has a heart attack, even though the affected area is the heart, the pain is sometimes felt around the shoulders, back and neck, rather than in the chest. We have known about referred pain for centuries, but we still do not know its origins and what causes it.

How do you measure pain?

It is virtually impossible to measure a person's pain objectively. Most experts say that the best way to find out how much pain a person is enduring is by a subjective pain report. A comprehensive assessment of pain should include:

• The identification of all the pains. This must include the most important ones.
• The site, quality, and radiation of pain
• What factors aggravate and relieve the pain

• When the pain occurs throughout the day

• What impact the pain has on the person's function

• What impact the pain has on the person's mood

• The sufferers' understanding of their pain

There are many different methods for measuring pain and its severity. Health care professionals say it is important to stick to whatever system or tool you chose for a specific patient all the way through. If a patient is unable to report his pain, such as an infant, or a person with dementia, there are a number of observational pain measures a doctor can use.

Here is a list of some pain measures used today:

Numerical Rating Scales

The patient is given a form which asks him to tick from 0 to 10 what his level of pain is. 0 is no pain, 5 is moderate pain, and 10 is the worst pain imaginable.

Please rate the pain you have right now
0	2	3	4	5	6	7	8	9	10
No pain				Moderate pain					Worst pain imaginable

The Numerical Rating Scales are useful if you want to measure any changes in pain, as well as gauging the patient's response to pain treatment.  If the patient has dyslexia, autism, or is very elderly and has dementia this may not be the best tool (see the ones below).

Verbal Descriptor Scale

This type of scale exists in many different forms. The patient is asked questions and responds verbally choosing from such terms as mild, moderate, severe, no pain, mild pain, discomforting, distressing, horrible, and excruciating.

Elderly patients with cognitive impairment, very young children, and people who respond better to verbal stimuli tend to have better completion rates with this type of scale, compared to the written numerical scale. Children respond even better to the faces scale (description below).

Faces Scale

The patient sees a series of faces. The first one is calm and happy, the second less so, etc., and the final one has an expression of extreme pain. This scale is used mainly for children, but can also be used with elderly patients with cognitive impairment. Patients with autism may respond better to this type of approach - people with autism tend to respond to visual stimuli well.

Brief Pain Inventory

This is a much more comprehensive written questionnaire. Not only does it gauge current level of pain, but also records the peaks and troughs of pain during previous days, how pain has affected mood, activity, sleep patterns, and how the pain may have affected the patient's interpersonal relationship. The questionnaire also has diagrams which the patient shades - the shaded parts being where the pain is located and where it is most severe.

McGill Pain Questionnaire

This questionnaire measures the intensity (severity) of the pain, the quality of the pain, mood, and understanding of the pain. It is also known as the McGill Pain Index. It is a scale of rating pain developed at McGill University by Melzack and Torgerson (1971).

Look at the 20 groups below.

1. Circle one word in each group that best describes your pain.
2. Circle only three words from Groups 1 to 10 that best describe your pain response.
3. Choose just two words in Groups 11 to 15 that best describe your pain.
4. Just pick the one in Group 16.
5. Finally, choose just one word from Groups 17-20.

You should now have seven words. Those seven words should be taken to your doctor. They will help describe both the quality and intensity of your pain.

Group 1 - Flickering, Pulsing, Quivering, Throbbing, Beating, Pounding
Group 2 - Jumping, Flashing, Shooting
Group 3 - Pricking, Boring, Drilling, Stabbing
Group 4 - Sharp, Gritting, Lacerating
Group 5 - Pinching, Pressing, Gnawing, Cramping, Crushing
Group 6 - Tugging, Pulling, Wrenching
Group 7 - Hot, Burning, Scalding, Searing
Group 8 - Tingling, Itching, Smarting, Stinging
Group 9 - Dull, Sore, Hurting, Aching, Heavy
Group 10 - Tender, Taunt, Rasping, Splitting
Group 11 - Tiring, Exhausting
Group 12 - Sickening, Suffocating
Group 13 - Fearful, Frightful, Terrifying
Group 14 - Punishing, Grueling, Cruel, Vicious, Killing
Group 15 - Wretched, Binding
Group 16 - Annoying, Troublesome, Miserable, Intense, Unbearable
Group 17 - Spreading, Radiating, Penetrating, Piercing
Group 18 - Tight, Numb, Squeezing, Drawing, Tearing
Group 19 - Cool, Cold, Freezing
Group 20 - Nagging, Nauseating, Agonizing, Dreadful, Torturing

Measuring pain when the patient is cognitively impaired

In this case doctors say that the patient's subjective pain report is the most effective and accurate way of evaluating pain. If the severely cognitively impaired patient is observed carefully it is possible to pick out clues as to the presence of pain, e.g. restlessness, crying, moaning, groaning, grimacing, resistance to care, reduced social interactions, increased wandering, not eating, and sleeping problems.

What are the treatments for pain?

An underlying disorder, if treated effectively, will also get rid of the pain, or at least reduce it. If you have an infection and take antibiotics, the antibiotics may get rid of that infection, resulting also in the elimination of pain. Even if an underlying problem can be treated, you may still need analgesics (pain relievers).

Analgesics are good at relieving nociceptive pain, but not neuropathic pain. Chronic pain - long-lasting pain - may need other non-drug treatments as well.

Opioid Analgesics

Opioid analgesics are also known as narcotics. These are the strongest painkillers and are commonly used after surgery, for cancer, broken bones, burns, and various other situations. Even though opioids are not commonly used to treat non-cancer pain, their usage for non-cancer pain is becoming more widespread and acceptable. Some patients do not respond well to opioids and should not take them.

The patient will be given opioids in gradually increasing dosages. The ideal dose is reached when the pain is relieved and the side-effects are tolerable (increase any higher and the side effects become too much for the patient). Dosages should be generally much lower for older patients and infants.

The patient is administered opioids every few hours - each dose coinciding with the moment just before the pain starts becoming severe. Some patients are given higher dosages if the pain becomes more intense, while others are given other medications alongside the opioid. Pain can become more intense if the patient needs to move about, or if a wound dressing needs to be changed.

The dosage goes down if the pain intensity drops, until if possible, the doctor switches to a non-opioid analgesic.

People with kidney failure, liver problems, COPD (chronic obstructive pulmonary disease, dementia, tend to have more side effects when given opioids. The most common opioid side effects are drowsiness, constipation, nausea, vomiting, and itching. Generally, the side effects lessen as after time. Taking too much opioid can be dangerous. Patients who take opioids for long period become physically dependent and will have withdrawal symptoms when treatment is stopped - it is important that their dosage is tapered off gradually.

Nonopioid Analgesics

Nonopioid analgesics are used generally for mild to moderate pain. They are not addictive and their pain-relieving effects do not dwindle over time.

NSAIDs (nonsteroidal anti-inflammatory drugs)

These may be obtained either OTC (over-the-counter) or as a prescription medication, it depends on the dosage. Low dosage NSAIDs are effective for headaches, muscle aches, fever, and minor pains. At a higher dose they help reduce joint inflammation. There are three main types of NSAIDs, and they all block prostaglandins - hormone-like substances that cause pain, inflammation, muscle cramps, and fever.

• Traditional NSAIDs - the largest subset of NSAIDs. As is the case with most drugs, they do carry a risk of side-effects, such as stomach upset and gastrointestinal bleeding. The risk of side effects is significantly higher if the patient is over 60. At higher doses, they should only be taken when monitored by a doctor.


• COX-2 inhibitors - these also reduce pain and inflammation. However, they are designed to have fewer stomach and gastrointestinal side-effects. In 22004/2005 Vioxx and Bextra were withdrawn from the market after major studies showed Vioxx carried increased cardiovascular risks, while Bextra triggered serious skin reactions. Some other COX-2 inhibitors are also being investigated for side-effects. The FDA told makers of NSAIDs to highlight warnings on their labels in a black box.


• Salicylates - these include aspirin which continues to be a popular medication for many doctors and patients. If your plan to take aspirin more than just occasionally you should consult your doctor. Long term high dosage usage of aspirin carries with it a significant risk of serious undesirable side effects, such as kidney problems and gastrointestinal bleeding. For effective control of arthritis pain and inflammation frequent large doses are needed. Nonacetylated salicylate is designed to have fewer side effects than aspirin. Some doctors may prescribe nonacetylated salicylate if they feel aspirin is too risky for their patient. Nonacetylated salicylate does not have the chemical aspirin has which protects against cardiovascular disease. Some doctors prescribe low dose aspirin along with nonacetylated salicylate for patients who they feel need cardiovascular protection.

Daily Update: Bloodwork, et al.

I guess that I should consider this a weekly update because I hadn't posted in a few days. Anyway, here's my update:

After the CT scan was OK on Monday, I recieved two prescriptions for my headaches, Maxalt for my migranes and Butalbital for my tension headaches. They also doubled my dose of Amitriptyline to 100mg, which from what what I've read and have heard from others with fibro, is normal.

Tuesday, I woke up fine. I was feeling good, no headaches, reasonable pain level. I went to work.

By the time that it was 8:30, I was progressively getting worse physically. I had anxiety. I couldn't sit still, had pain down my arms and legs and felt very foggy (like a typical fibro, flu-like flare).

I felt like I didn't feel right in my skin and just wanted to lay down. Finally, I decided that had to leave work. I decided to drive home and if I was going to make the 27 mile trip, I thought that I needed to leave right then before anything got worse.

I called my wife once I was on the interstate and asked her to please call me doctor and relay my symptoms to the Dr. At the time, I thought that I may be having a reaction to the increased dosage of my Amiltriptyline.

I also called the neurologist that I was referred to see if I could move up my appointment (the closest that they had was 9/10 @ 2:30pm). I told them that I was worried and need something/anything if they can find sometime sooner because my biggest concern was that I have to still go to work and can't function.

Five minutes later, I got a call back from my wife asking me to stop driving ( I was getting worse anyway). I pulled over into a shopping center and she and my oldest on came to get me and took me to an emergency visit with the doctor.

The doctor saw me and ran some blood tests. The regular ones came back with an elevated white blood cell count. They were still waiting on the West Nile Virus results. While there, I was still really feeling strange, like my skin didn't fit me right. I know that that sounds strange. I was borderline delusional, couldn't walk straight, etc.

I was sent home with my wife while she picked up my prescriptions. The doctor told me to stay home from work for the next few days. I was essentially on bed rest.

I am worried as this whole two weeks has been a progressive downhill slide. I am working from home today... just trying to get through to this weekend.

Well, I just heard back from the doctor regarding my CT scan. Good news! It's clear except for a deviated septum. The bad news is that they want to refer me to a neurologist. I want to bang my head into a wall. I forgot to ask about the sinus infection clearing up, but did ask them about something for the pain.

This is getting to the point of being unmanageable.... constant headache, dizziness, fogginess, etc.

I'd just like an answer...

Daily Update

Well, after dealing with my headaches, fatigue and memory loss for a while now, I just got to the point where I had to make an appointment with my doctor ASAP. My next scheduled appointment was in October and I couldn't wait that long. On Friday, I called the office and had an appointment scheduled for this past Monday morning,

I say the PA at the office and we talked and she examined me and performed some quick memory tests. It turned out that she thinks that I have a really bad sinus infection or “something else” causing my headaches and memory loss. She said that she could see that my left eardrum was “bloody” looking.

She prescribed me with Amoxicillin and Prednisone as well as a steroid nasal spray to help clear up the infection. She said that if I didn't have any sort of improvement in 3-5 days that she wanted to do a CT scan to see if anything could be seen.

She also increased my does of Lyrica, which should help with the pain.

I am still experiencing a great deal of difficulty in getting to and staying asleep. I've been averaging 4 hours per night, which with fibro, makes the next day (including today) a very difficult day. 

I also noticed that now, driving at night is VERY difficult. It looks like I am having an issue with depth perception and being able to focus on objects. It's like my headlights, even when on high beams, don't light everything and I have difficulty in judging distance. This was a scary feeling coming home last night as I have to extra careful. It looks like I'll have to relegate future driving at night to my wife.

The Walking Dead, Part II

Well today is Thursday and I am happy that it is. It's one step closer to the weekend.

Following my Wednesday morning mixup, I ended up coming home from work a little early, just because of my fatigue and a really bad headache. In addition to that, I was smelling the scent of blood in my left nostril. The odd part was that I didn't have a nose bleed or anything similar. It was like The Walking Dead... they were here for my brain (or so it seemed)

A quick Google search yielded the cause being anything from a migraine to a brain tumor. Well, that was reassuring, but nevertheless, I went home and lay down with a cold compress and the light off.

Eventually, I drifted off to sleep and woke up in time to eat a little and take my evening meds, then fell back to sleep. 

Seeing that everything was "decently OK" when I woke up this morning, I'm going to chalk this attack up to having a weird migraine, although if it happens again, I may just go to the ER due to the strangeness of having a blood smell.

Easter Week

This week is Easter week and I am thankful that it is a short week. Two nights ago, I twisted my back while sleeping.... yes, while sleeping and I still have upper back/right shoulder pain. I remember waking up from the pain of apparently turning slightly during the middle of the night.

This morning is rough as well. It seems as though there are sharp pins being poked into the balls of my left foot causing me pain when I put any sort of pressure on it. To make things worse, my right ankle suddenly feels like it's broken. The combination of these two makes me limp like an weeble from side to side.

The walk up the hill to work today was, needless to say horrible. Here's to hoping that the day gets better and that Thursday, which is Friday this week comes soon!