What kind of pain?

There are several kinds of fibromyalgia pain. They can all strike like lightning when it is least expected, and can be crippling. Preventing the everyday life events from happening and being enjoyed, endured or simply experienced.

Some are easier to cope with than others.

Let's have a look and see where I fit in.

There are three medically recognised types of pain so let's start there.

Much of this information comes via this article by the way. However, no one is the same, so some are just mine. (How lucky I am!)

Hyperalgesia

"Hyper" means excess and "algesia" means pain.

In fibro any everyday pain you will experience is amplified. That niggling ache in you shoulders will feel like searing burning in fibro.  Just imagine how painful stubbing your toe can be when this pain is amplified up to ten times. 

Personally, I find I do very well in not swearing too much when things like this happen. We all know how clumsy one can be after a poor nights sleep. Add to that a tendency towards dyspraxia and being bust heavy and you can imagine how my world is a world of bumps and bruises. 

The majority of GP's prescribe SSRI's (prozac and other anti d's) to combat this type of pain. The idea being to reduce the sensitivity of the pain receptors. In my own experience this type of medication numbs everything. Okay, I found the pain was less intense. However, so were my emotions. I couldn't get really excited about anything. I put off today what could be done tomorrow constantly because I didn't have the sharp emotion to deal with things. It is only since leaving these behind I have come to realise how numb to the world I had become.

Allodynia

This is one of the types of pain I really struggle with. It is the kind of pain that makes you skin painful. It is a relatively rare pain in most people but common to certain conditions. Things like shingles (also connected to the Epstein Barr virus as fibromyalgia it thought to be in some circles) Migraine, and neuropathy. Personally, I suffer with migraine and it is then that Allodynia is at it's worst. Even a caring and sympathetic hug from a well meaning loved one can become a minefield. No one in their right mind would want to snub the caring arms of the one they love. Who would not worry about causing upset and make them feel they are not helping. However, when you feel like your skin is trying to remove itself from you frame by shrinking and burning then it is also difficult not to leap away at the touch and weight of a someone trying to hold you.

If you have trouble putting clothing on because you feel like the fabric is filled with prickly barbs how are you supposed to get dressed?

I am sure many of you have suffered bad sunburn at some point in your life? Well, that is how it feels.

I personally put this kind of pain in my “sensitive to everything” folder. When the world around you just hurts!

*Allodynia is believed to be a hypersensitive reaction that may result from the central sensitization associated with FMS. The pain signals originate with specialized nerves, called nociceptors, that sense information about things like temperature and painful stimuli right from the skin.

Allodynia comes in 3 forms:

1. Tactile, which is pain from touch or gentle pressure
2. Mechanical, which is from something moving across your skin
3. Thermal, which is pain from heat or cold that's not severe enough to damage tissues

Some drugs that work for some people with allodynia include:

• Tramadol
• Lidocaine
• Ketamine
• Morphine
• Venlafaxine
  
  *taken from the above article
  

As we all know I much prefer a more natural and complimentary approach to medicine. I would be more inclined towards herbal topical creams. Capsaicin is the active ingredient in chilli plant.

It is actually an irritant. It works by reducing substance P in the body. This is the main chemical involved in transmitting pain impulses to the brain. However, due to it being an irritant it is important that it is not used too much. Indeed, it does come with a recommended dose. The very nature of the beast with capsaicin is that there is always the risk of it making this kind of pain worse instead of better.

Personally, I quite like Tiger Balm. It even smells nice. It contains all natural ingredients. Menthol, Camphor, mint oil, Cajaput oil, Clove bud oil and Cassia oil. All oils and plants that are reputed to have a soothing effect on sore muscles and raw nerves.

Painful Paresthesia

Paresthesias are odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful and aggravating.

There have been days when I have been able to sympathies with ancient slum dwelling people. Crawling with lice and fleas. I can be perfectly happy and then find I will spend hours at a time feeling like I have something crawling over me. It's horrible and trying not to scratch is almost impossible. However, succumbing to scratching will invariably cause me to feel sore and kick off the burning skin feelings. Gah!

Capacin cream can again help here. As can vitamin B12. I take a complex of B vits daily. It's got to be helping...right?

Personal pain 

For the rest of the article they talk about personal pain. One that it mentioned is titled Vodoo pain. It describes the sudden stabbing pain we fibro sufferers are all too familiar with. Personally I tend to get this in my ribs. A sudden feeling of being stabbed. It takes my breath away. I have also found that I will get a stabbing pain now and again around the middle of my monthly cycle. It will be just in one side over where my ovaries would be. In my head I have always linked it to ovulation. Perhaps I pop when a new egg is released :)

The next pain mentioned is “randomly roving pain”.

I assumed all fibro sufferers had this. It is typical when being asked what hurts I will say "my shoulders", for example. Half an hour later it could be my thighs. Pain rarely stays in one place unless it is related to a pain I would have without fibro. I constantly have back pain. At the moment it is so bad it is stopping me walking, keeping me awake at night and refusing to let me be comfortable. This is due to a back problem and it is exacerbated by fibro. This pain doesn't move.

However, I also have aching thighs today. Perhaps tomorrow or even later on it will be elsewhere. The excitement knows no bounds...

Then there are the pinprick pinches that happen. Sort of like a mini version of the vodoo stab. Just a sharp prick now and again. Usually in my arms and hands.

*Fibromyalgia Pain: Rattled Nerves

Most people won't understand why I call this a type of pain, but I'm sure most fibromites will get it. Certain things tend to get my whole body on edge, jumpy, and feeling rattled. It makes me ache all over, and sometimes I get nauseous, dizzy and anxious. Things that rattle my nerves generally involve sensory or emotional overload, such as:

• Certain sounds (repetitive, loud, shrill, grating)
• Visual chaos (crowds, flashing lights, busy patterns)
• Stressful situations (busy traffic, confrontations, fibro-fog induced confusion or disorientation)

When my nerves are rattled, I try to get out of the situation as quickly as possible and relax, preferably somewhere quiet.

*cut from the above article

Reading this has been somewhat of a revelation to me.

This is where my “sensitive to everything” folder comes out. I always know when fibro is getting on top of me because the silliest things can irritate me and leave me exhausted and in agony. The saddest of these is hearing my children shriek and laugh while playing. It's not because I love them any less or want them to stop enjoying themselves. It's because the sheer erratic high pitched squeal of youngsters leave my nerves jangling. I would love to keep a quiet household. While they were younger I mostly did. However, as they get older they become more boisterous and louder. My dear sweet daughter leaks noise constantly and it drives me potty. But, I will never stop them. My fibro will not be their cross to bear.

I also can't stand loud music. I love music but too loud and I am so rattled I can't concentrate on what I am doing.

I hate cities. So loud and smelly. Such a nerve jangling array of life simply makes me want to curl up and die. It makes it hard to believe I grew up in such a large and vibrant city.

The smell of strong flowers, such as lilies (one of my favourites), the sound of birdsong in the morning, and so many other things I usually take such joy in can make fibro so much worse if I am having a flare.

So all in all there are far too many things I can be affected by to avoid them all. I don't want to live in a bubble.

I shall keep on keeping on. The power of positive thinking and support of my family will carry me through.

I will also keep my complaining to a minimum and take myself to a quiet, dark room when things get too much.

There is a huge upside to being very sensitive........But that is another story and one I'm not sure I'll share ;)

A letter to the normals

Not written by myself but I relate in a very large way 

These are the things that I would like you to understand about me before you judge me ...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing the five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend
some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FM then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro.If something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things. But most importantly, I need you to understand me.

  *by Jeanne Merrifield Graves, an FM Network Facebook Member

one for the nonbeliever

If you were born with healthy genes, you may know me but you don't
understand me. I was not as lucky as you. I inherited the predisposition to
chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia
(FMS) after months, years or even decades of mysterious physical and
emotional problems. Because you didn't know how sick I was, you called me
lazy, a malingerer, or simply ridiculous. If you have the time to read on, I
would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all,
and it isn't even new. In 1815, a surgeon at the University of Edinburgh,
William Balfour, described fibromyalgia. Over the years, it has been known
as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do
not have a known cause, but they do have a specific set of signs and
symptoms which, unfortunately for the patient, take place together.
Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder. In
1987, the American Medical Association recognized FMS as a true physical
illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch
potatoes. They can be disabling and depressing, interfering with even the
simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation.
Taking your arthritis medication will not help me. I can not work my pain
out or shake it off. It is not even a pain that stays put. Today it is in my
shoulder, but tomorrow it may be in my foot or gone. My pain is believed to
be caused by improper signals sent to the brain, possibly due to sleep
disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally. If you saw me shopping in the mall
yesterday, but I can't help you with yard work today, it isn't because I
don't want to. I am, most likely, paying the price for stressing my muscles
beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a
crowd, I am not purposely targeting you. I do not have the muscle control
for that. If you are behind me on the stairs, please be patient. These days,
I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in
the house or die. I have lost count of how many of Dr. Kevorkian's patients
suffered from FMS as well as other related illnesses. Severe, unrelenting
pain can cause depression. Your sincere concern and understanding can pull
me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appestat is broken, and nobody can tell
me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My
massage is not your massage. Consider how a massage would feel if that
charley horse you had in your leg last week was all over your body.
Massaging it out was very painful, but it had to be done. My body is
knot-filled. If I can stand the pain, regular massage can help, at least
temporarily.

11. My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks or even months. In fact, the good
days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means
I may not have all of the problems mentioned above. I do have pain above and
below the waist and on both sides of my body which has lasted for a very
long time. I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain,
your local bookstore, library and the internet have many good books and
articles on fibromyalgia

 *http://www.ukfibromyalgia.com/forums/

What is fibromyalgia?

The location of the nine paired tender points

Fibromyalgia is a syndrome

A syndrome is a collection of signs, symptoms and medical problems. A disease is a medical condition with defined causes and clear signs and symptoms.

The word fibromyalgia comes from the Greek myos meaning "muscle", Greek algos meaning "pain", and New Latin fibro meaning "fibrous tissue". fibromyalgia is often describerd as "A common syndrome of chronic widespread soft-tissue pain accompanied by weakness, fatigue, and sleep disturbances; the cause is unknown." Fibromyalgia is a common and chronic disorder. When a health illness or condition is chronic it means it is long-lasting.   

Even though fibromyalgia is frequently referred to as an arthritis-related condition, it does not cause joint damage or inflammation, as arthritis does. Neither does fibromyalgia cause damage to muscle and other tissues. However, it is similar to arthritis because it causes severe pain and tiredness, and can undermine the patient's ability to go about his daily activities. Fibromyalgia is seen as a rheumatic condition. A rheumatic condition is one that causes joint and soft tissue pain.

There is more and more compelling evidence that fibromyalgia is in fact a neurological disorder. Caused by miss aligned pain signals being sent through the nervous system give false pain and discomfort. There is also evidence that fibromyalgia is closely connected to the Epstein-Barr virus.

What are the signs and symptoms of fibromyalgia?

• Morning stiffness
  
• Headaches
  
• Irregular sleep patterns
  
• IBS (irritable bowel syndrome)
  
• Painful menstrual periods (Dysmenorrhea)
  
• Hands and feet tingle and can feel numb
  
• Restless leg syndrome
  
• Sensitivity to cold or heat
  
• Fibro fog (memory problems, cognitive problems)
  

The following signs and symptoms are also possible

• Widespread pain
  
• Problems with vision
  
• Nausea
  
• Pelvic and urinary problems
  
• Weight gain
  
• Dizziness
  
• Cold/flu like symptoms
  
• Jaw pain and stiffness
  
• Skin problems
  
• Chest symptoms
  
• Depression
  
• Anxiety
  
• Myofascial pain syndrome (pain/tiredness in muscles and adjacent fibrous tissues)
  
• Breathing problems
  

A dynamic change.

Ok, so here I go.
I've decided to keep this blog because I want to see the difference and keep a not of the changes I make. I want to be able to look back to find inspiration and to see how I have made mistakes. I want a document of my journey with fibromyalgia.
I am currently at the worst (health wise) that I have ever been.
My home life is wonderful, my relationships with those I care about are giving and nurturing. I do have stressful aspects to my life. There are one or two loose ends that need to be tied up. I hope tying them will make a difference.
However, I feel a frank and honest account of my health and lifestyle can only be a good thing. In addition by having it on-line I hope others will find it helpful.
I am only 37 and feel about 80. I have a long life ahead of me (I hope and want to live it to the fullest. I want to have a life of creating wonderful memories and collecting cherished smiles. Both from myself and those around me.
My beautiful children deserve a childhood filled with joy and laughter, not a mother who is permanently in bed or in pain.

My darling A (the sparkle in my life) is a wonderful and giving human being. I will always do my best to keep our relationship happy and fulfilling. I will never take for granted how good he is at dealing with my illness and being understanding and caring. Due to all these qualities he deserves a partner he can share life and adventures with. We love the outdoors and he deserves to be able to enjoy them to the full extent rather than a touch towards it and tiny wary steps.

I plan to make some changes. Some of them big and some of them tiny.  I plan to take them one step at a time.
I was once told by a very good friend the one teaspoon at a time a person can move a mountain. It's time to raid the cutlery draw and get on with it.
Wish me luck!