Just a quick note to let you know (whoever is out there and reading), I’m not giving up. Life has suddenly accelerated.  I’ve been working on my house so a very special person can come share my life with me, it’s spring so the garden is shouting at me, I’m working on changing my job yet again, trying mostly unsuccessfully to ignore the political swamp, working everyday, swimming twice a week, and when I’m not not doing that, I’m flat on my back going, “Ooooooohhhhhhhh.”

But I’m still working on my quest for understanding fibro better. I’m currently looking at a blood test for fibro that’s being offered. I found out that while insurance companies are jumping on the bandwagon to cover this blood test, the medical institution I work for (in the laboratory medicine department which does blood tests) does not offer this test.  I want to find out why.  I also want to look into the blood test being offered for two reasons that aren’t necessarily for the betterment of the patient: 1) as a way to soothe a patient’s mind and stop him or her from bothering physicians for more tests; 2) as a way to tap into the fibro market and make some money off us. I know, both are pretty cynical, but I think it’s worth asking the question.

Anyway, just wanted to say hi, and stay tuned.  In June life will hopefully have slowed down a little and I can get back on track.  I have lots of articles staring at me, begging me to get reading.

I wish I had hives.  Or rashes.  Anaphylactic shock? Nope.  None of them.  Well, that’s not true.  One night maybe 12 years ago, I woke up in the middle of the night looking a lot like Quasimodo with a rash.  My face had swollen and I was tearing my skin apart trying to get to an itch.  A trip to an allergist yielded nothing but an expensive EpiPen that I never used because it never happened again.  Of course, there was the time I suddenly became allergic to penicillin and discovered I was allergic to sulpha – rash and hives respectively, so I do know what I’m saying when I say I wish I had hives, rashes, or even an occasional bout of anaphylactic shock (with an EpiPen within reach, preferably). The fact is, I don’t have food allergies.  But I have extreme food sensitivities.  Peanuts, onions, chocolate, wheat, sugar, and more. I think I talked about that already once, but I have to start facing a very big problem I have. I can’t leave food that I’m sensitive to alone.

Last night was the first night away from home for a week while I take care of a friend’s horses, doggy, and kitty while he visits his mom out of state.  I do this on a regular basis, but this time is different. I’m missing home more, missing my special guy who is going to be moving in with me in just a week and a half, missing my furry buddies purring on me, even my nice comfy bed.  It’s okay, I love helping my friend out.  His mom is old and frail and has suffered a couple strokes.  He needs the time with her. The problem comes in when I start to feel that pressure, that stress – is it an I’m-not-doing-what-I-would-prefer-to-be-doing stress? I get it at work too, not surprisingly.

How I react to that stress is self-destructive. I will figure it’s okay to grab that chocolate chip cookie.  Just one.  I don’t have to eat the whole pack. It’s from a bakery, so it’s not so full of chemicals… I can rationalize with the best of them. Last night, first night away from home, knowing I have a week away, a package of three luscious chocolate chip cookies – I’ll only have one, yeah right – and within an hour, palpitations, heart racing, blood sugar dropping – sugar and caffeine.  Should be a good enough reaction to stop me from taking that chocolate chip cookie plunge? No.  It’s not hives or a rash.  I’m just sensitive, not allergic. But one day, I will be the first person to die from eating chocolate chip cookies.  Unless they make an EpiPen for palpitations and increased heart rate.  Then I’m golden.

Signed,
Disgusted and Annoyed

It’s time for a pain inventory. Head to toe:

• Lots of trouble with my eyes – dryness, pain, itchiness, blurriness
• Neck – stiff and uncomfortable
• Shoulders and between the shoulders – painful at rest and in motion, sharp pain raising arms, feels like arthritis
• Arms – upper arms sore at rest like I’ve been lifting weights, elbow and wrist joints ache
• Hands and fingers – swollen (ring tight), stiff, and sore at rest, in motion, and joints very tender to the touch
• Spine – popping and crunching with movement, lower back disc pain
• Hips – not too bad! Bursitis being kept in check with swimming, I think
• Knees – swollen and sore, noisy – stairs are an issue
• Calves – sharp pains
• Ankles – swollen, right ankle extremely sore like a sprain without injury but not more swollen than the left ankle which is just a bit sore
• Feet – swollen, joints tender to the touch, heels very sore
• Psychological – difficulty concentrating, minor depression flare, high sensitivity levels
• Fatigue is off the charts – major shortness of breath issues.

Source of flare? Stress? Dissatisfaction at work. House is ripped up and messy. Could be just the day of the week. Could be the weather shifting between spring and slipping back to winter now and then.

What to do about the flare?

I’ve been swimming twice a week – it feels good while I’m doing it even if it’s contributing to the arm/shoulder soreness. Muscles are getting used to the different movement.  If I stop, I’ll have to start from the beginning again.  Will swim through the flare, but I won’t start new exercise.  I’ll try to walk more at work.

I’m working on my house – I’m at the point that I can’t stop, for two reasons, I’m bringing someone into my home that helps me relax and be happy, and the mess is at a point of no return.  The stress of the mess contributes to the flare, so must work through it and fix the mess.

I’m going to work each day – no choice.  I’m a single income household. My dissatisfaction at work won’t be cured by getting fired. I am working on changing jobs to find something more stimulating and fulfilling, which adds to the stress and depression, but necessary evil to make things better.

What I will work on changing is food intake. My appetite is a bit out of control, and I feel like I’m gaining weight (no I don’t own a scale and won’t get one – don’t need the negative reinforcement). Increase protein, cut sugar, no more giving in to cravings. And I need to start taking my supplements daily again. I’ve been non-compliant with baby aspirin and only taking my antidepressant during the week.

Last night I switched out my CPAP mask for a new one which helped me sleep through the night last night.  I’ve been waking up fairly regularly and occasionally having trouble getting back to sleep.  A few nights of that will contribute to a flare.

There.  Inventory done. Now to get out of bed….

If you ask a physician what you should do for the chronic pain of fibromyalgia, he or she will probably say exercise, sleep hygiene, healthy diet, and medications.  Really, medications is the only part of that list that wouldn’t apply to any Joe on the street. Everyone should exercise, practice good sleep hygiene, and have a healthy diet to feel good.  While I have had good luck with all three of those things, they don’t “cure” fibro, and they are unreliable.  I can get a fibro flare right in the middle of being on a great exercise/sleep/eating streak.  So does feeling better fall on meds?  For me, the answer is no.  I’ve never taken a medication that made me feel better, and most created as many or more problems by taking them.  I have had some success with supplements like fish oil and B-complex vitamins.  Looking at supplements, one of the ones that is mentioned a lot on support group sites is kratom.

Kratom is a fairly controversial supplement right now. It has been on the FDA’s Drugs and Chemicals of Concern watch list for some time, and there is a possibility that it will be banned outright. I read a couple of articles about kratom (see Prozialeck, Singh et al, and Lydecker et al in the library), and there is definitely not a firm consensus on the benefits or risks of taking kratom.  Here are a few points to make note of, however, if you are considering taking it:

• There seems to be some problems with harmful chemicals being mixed into kratom that gets imported into the United States. Lydecker et al note that several packaged kratom products had “artificially elevated concentrations of 7-hydroxymitragynine,” which is actually the chemical that causes some of the side effects of kratom.
• There have been NO well-controlled, clinical trials to determine its effectiveness.
• While the FDA tends to call kratom an opioid, it’s not. Instead of sedating, it has mildly stimulating property, which helps for chronic fatigue.  It does not usually produce a euphoric response after taking it, and it does not depress respiration, all of which opioids do. In addition, kratom doesn’t use the same chemical path which opioids use which creates opioid side effects and dependence.
• The people who have actually died while taking kratom may have been taking other supplements or medications, so there is a risk in combining kratom with other meds.  Until actual studies are done to explore kratom more, it might be a good idea to be careful what it is combined with.
• Most researchers have indicated that kratom is not as dangerous as opioids, including morphine.  However, there is a strong possibility of addiction and side effects.

Bottom line, the research is not there to be able to safely take kratom, but there is more than enough indication that it should be done and that it will probably help people who suffer from chronic pain. As usual, when I hear about something like that and find out that more than likely the money is not being put into a natural product while money is being dumped into developing and advertising for big pharma companies, I get a little cranky.  There have been a couple of patents that have been granted for uses of kratom, and I’ll have to look into those.  However, this is for me far from safe enough to take regularly.  They need to fix the supply so there is no adulteration and they need to determine what interacts in a dangerous way.  Who is “they” and why haven’t they done this?  I dunno.

A very interesting and novel study, published ahead of print by the Clinical Journal of Pain (see Offenbaecher et al in the library), “Struggling with Adversities of Life: The Role of Forgiveness in Patients Suffering from Fibromyalgia” is exactly what it sounds like, a study that examines how fibro patients cope with anger directed at both themselves and other people, and what affect that has on their fibro symptoms.

The bottom line of their study is that fibro patients tend to be angrier and less forgiving not just of the people around them or even their circumstances but of themselves.  We’re ticked off with ourselves as much as with the people around us. In addition, the authors point out that letting go of that anger and the psychological baggage that goes with it benefits everybody, regardless of whether they have fibro, both emotionally and physically.  Forgiveness will reduce pain. Quality of life in particular jumps when patients are able to forgive.

This is something I have struggled with for many years, and mostly because I didn’t even realize how angry I was.  I never acknowledged my anger, and if I didn’t know it existed, there was little I could do about it.  Since so many fibro patients note traumatic experiences in their past, it does seem like there could be a connection between forgiveness of the people who caused the trauma in their lives and feeling better when they can let go of that anger.

More difficult, however, is forgiving ourselves.  This is where cognitive behavioral therapy has really helped me.  First I had to identify when I was actually beating myself up and when I was giving myself constructive criticism.  Then I had to admit that I was always beating myself up. Then I had to figure out why that was.  What had I done to myself to make me so very hard on myself.  I had to learn to sit down and talk to myself like I talk to everyone else who has ever asked for help or advice.  I had to learn to give me a break when I made mistakes, how to cope with making mistakes.

The thing is, this is not a fibro-specific problem.  I know so many people who beat themselves up every day, and they don’t have a chronic pain disorder.  Even though I have learned how to cope with my own anger, particularly against myself, it has not stopped fibro in its tracks. Is it possible that lingering, suppressed anger could be part of what makes developing brains develop differently during childhood trauma? There is a physiological change that can happen, maybe that anger helps that along.

I would love to hear from anyone who has undergone psychological therapy and discovered that it has reduced or “fixed” fibro or chronic pain.

Hello and welcome!

If you look at a list of symptoms that indicate an autonomic dysfunction (the autonomic nervous system controls heart and breathing rates, body temperature, and digestion), you might mistake it for yet another list of fibromyalgia symptoms.  Take a look (from http://www.healthline.com/health/autonomic-dysfunction#overview1):

1. Dizziness or fainting on standing up
2. Exercise intolerance (inability to alter the heart rate during exercise)
3. Sweating abnormalities – either too much or too little
4. Digestive difficulties – bloating, diarrhea, constipation, loss of appetite…
5. Urinary problems – incontinence, incomplete bladder emptying
6. Sexual problems in both men and women
7. Vision problems – blurry vision, inability of the pupils to react to sudden bright light

It’s not a slam dunk, but the components are there, and I have problems with 6 out of 7. So I found an article looking at the levels of autonomic dysfunction in fibromyalgia patients compared to “normal” people.

The study at autonomic symptoms both objectively and subjectively. In other words, they looked at signs, which are measurable or verifiable (such as the presence of hives – hives is a sign), and they looked at symptoms, which are not measurable, and rely on self-reporting by their study groups (mostly by questionnaire).

Bottom line: Patients reported more significant symptoms than the measurable signs picked up.  There were lots of symptoms, but few signs.  Isn’t that the story of fibromyalgia right there? We have all the symptoms but none of the signs.  It’s the same with thyroid.  They can test my thyroid until the cows come home, but it’s never going to show an abnormality, even though I have all the symptoms of a hypothyroid disorder.

The second bottom line is that the researchers suggest that therapy for fibromyalgia should focus on function rather than symptoms.  They suggest that they look at how well patients function rather than how they feel.  They point out that most of the patients were not as deconditioned as they expected to be, although more patients were eliminated from participating in tests due to other physical problems.  Patients were able to perform the incremental exercising needed to measure VO2max tests, to do the 6-minute walk test, and the other physical activities they needed to do, and they did it without experiencing significant increases in pain.

I like the idea of therapy focusing on function rather than symptoms. Chasing symptoms is like Alice chasing the White Rabbit down the rabbit hole, and taking medications can be like her nibbling on the cake and growing or shrinking uncontrollably.

However, there’s a drawback to that focus, and the researchers very quickly and possibly inadvertently point it out: looking at psychological factors as being the cause for patients not engaging in “vigorous physical activity.”  Specifically they mention “fear avoidance.”  Not moving for fear of exacerbating pain.

While I would argue that definitely patients should always focus on function over symptoms because focusing on symptoms exacerbates them, I have to come down on the opposite side with physicians.  Fibromyalgia has been proven to have physiological causes, even as it gets worse with psychological factors such as stress.  Physicians, I personally think, need to acknowledge to patients that yes, fibromyalgia is a physiological disorder and not call it a psychological disorder.  It’s like telling someone they’re hypersensitive.  It doesn’t do anyone any good.  Yes, patients should acknowledge that their frame of mind will make a difference, and they should be screened to depression or other factors that would impede symptom alleviation, but physicians shouldn’t only focus on it.

Symptoms without signs is possible, and there needs to be a study that can explain why people can suffer the symptoms of disorders such as dysautonomia or hypothyroidism without exhibiting the quantifiable signs of those disorders. Maybe fibromyalgia is really just that. A disorder characterized by symptoms with a lack of signs.  Huh.  I’ll have to think on that.

Welcome to the discussion!

It’s remarkable how many ways I’ve discovered that doctors will evaluate a fibro patient’s pain level.

• Visual Analogue Scale
• Fisher’s Dolorimeter
• Fibromyalgia Impact Questionnaire (FIQ)
• Revised Fibromyalgia Impact Questionnaire (FIQR)
• Brief Pain Inventory (BPI)
• Multidimensional Fatigue Inventory (MFI-20)
• Medical Outcomes Study (MOS) Sleep Scale
• Multiple Ability Self-Report Questionnaire (MASQ)
• Illness Behavior Questionnaire (IBQ)
• Minnesota Multi-Phasic Personality Inventory (MMPI)
• Illness Attitude Scale (IAS)
• The Whitely Index

There are more, and I just found another: The Health Anxiety Inventory (HAI – see Salkovskis in the library). This one is particularly useful because if focuses on picking up hypochondriasis.  Yep, it tells the doctor whether or not he or she is working with a hypochondriac, or how much of a hypochondriac the patient is. To be fair, the authors point out that this inventory is useful to determine whether patients are hypochondriacs or whether they are suffering from a panic anxiety disorder. I’m afraid I can’t really discern the difference between the two.  Isn’t hypochondriasis a form of anxiety disorder?

I understand the need for doctors to understand personality types.  The authors point out that this inventory helps doctors know how will people with chronic (non-lethal) pain will react to simple reassurances. Will that person accept the reassurances and understand they are okay, even though they don’t feel okay?  Will that person likely go on for second, third, or fourth opinions? Does the patient need psychological treatment such as cognitive behavioral therapy to cope with chronic pain? It does make sense and it can be used as a tool to give fibro patients the best care possible. I’ll choose to believe that is why all these inventories are developed.

However, much like the way doctors are preoccupied with classifying fibromyalgia as a disorder, there seems to be a preoccupation with classifying the patients too. Is it possible that doctors are overthinking the problem? It’s really very simple in a lot of ways, even though it is a complex disorder and everyone is different.  Fibro patients need:

• Pain management options – not just one. Everyone is different.
• Mood management options – heck yes, we get cranky and down.
• Exercise options – if you don’t move it, you’ll lose it.
• Dietary advise – not diet fads.
• A proper, kind, non-judgmental ear – whether from a doctor or a support system.

When we are constantly given mood inventories, pain inventories, it just reinforces the suspicion that doctors don’t believe us. At the same time it reinforces that there is something wrong with us.

I don’t want to be classified anymore. So I won’t be.

Looking at depression as an inflammatory disease, I have been struck by the parallels between the physical mechanisms that may trigger inflammation (and thus depression, according to Berk et al – see library) and fibromyalgia.  This really isn’t surprising since such a high percentage of people with fibro also have problems with depression.  What I’m wondering, however, is if there are enough parallels between the two that they are intrinsically related.  Fix one, help the other; prevent one, prevent the other.

The triggers for depression that the authors present are:

• Psychosocial stressors (childhood trauma)
• Poor diet
• Physical inactivity
• Obesity
• Smoking
• Altered gut permeability (leaky gut – has to do with bacteria and immune cells)
• Atopy (relating to allergies)
• Poor dental health/peridontitis
• Poor sleep
• Vitamin D deficiency

Furthermore, many of the physical reactions to these stressors are also associated with fibromyalgia, cytokines in particular, which are proteins that facilitate communication between cells (I think) and are associated with inflammation.

No matter what, the list above is a virtual mirror to underlying influences on fibromyalgia.  Even smoking, I have found is a trigger for fibro flares, which makes considering the exposure to chemicals.  The bacteria in the gut was one of the first things doctors addressed with me.  The only thing I can’t relate to – thank goodness – is poor dental hygiene.  But I do hate dentists.

The Berk et al article doesn’t go into the which-came-first question, and that still nags at me.  I wasn’t obese until I couldn’t move.  I wasn’t physically inactive until it hurt to move.  In my mind, the fibro came first, then the added weight and physical inactivity, and then the depression.  That’s not really true, however, because I did have some bouts of depression much earlier.

I’m having a hard time trying to gather my thoughts here and pinpoint what the significance could be.  I’ll keep thinking on it, see if the fog lifts…