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Fibromyalgia

Since my diagnosis I have found myself trying to explain Fybromyalgia to a number of my family and friends and not doing all that well. It seems that of all my friends only those in the US and Scandinavia have ever heard of it.

I therefore thought would take a small break from my attempts to be amusing and give an introduction to what other people say Fybromyalgia, followed by how it affects me and by extension the people that know me.

It's a bit long and for that I apologise and beg your indulgence – here comes the science:

The Fibromyalgia Network has this to say:

WHAT IS FIBROMYALGIA SYNDROME?

FMS (Fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.

Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, and it shows up in people of all ages.

To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state. This similarity is the reason experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes may be one and the same. Gulf War syndrome also overlaps with FMS/CFS.

SYMPTOMS AND ASSOCIATED SYNDROMES

Pain - The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.

Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.

Sleep disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.

Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck – what doctors refer to as unrefreshing sleep – it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).

Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients. Acid reflux or gastroesophogeal reflux disease (GRED) also occurs with the same high frequency.

Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of FMS patients and can pose a major problem in coping for this patient group.

Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.

Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.

Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.

POSSIBLE CAUSES

The cause of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that is already present.

COMMON TREATMENTS

Traditional treatments are geared toward improving the quality of sleep and reducing pain, which means that a sleep study may aid with individualizing your therapy. Deep level (stage 4) sleep is crucial for many body functions (such as tissue repair, antibody production, and the regulation of various neurotransmitters, hormones and immune system chemicals). Therefore, the sleep disorders that frequently occur in FMS patients are treated first because they may be a strong contributing factor to the symptoms of this condition. Medications that boost your body's level of serotonin and norepinephrine (neurotransmitters that modulate sleep, pain, and immune system function) are commonly prescribed in low doses, such as amitriptyline, cyclobenzaprine and Cymbalta. Ambien, Lunesta, clonazepam, and trazodone are just a few of the medications that may be used to aid sleep. Ultram may help with the pain, although stronger opioids may be needed for treating moderate to severe pain. Muscle relaxants, anti-epileptics (such as Neurontin and Lyrica) and other drug categories may be prescribed as well.

In addition to medications, most patients will need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture, acupressure, relaxation/biofeedback techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.

WHAT IS THE PROGNOSIS?

Long term follow-up studies on FMS have shown that it is chronic, but the symptoms may wax and wane. The impact that FMS has on daily living activities, including the ability to work a full-time job, differs among patients. Overall, studies show that FMS may be equally as disabling as rheumatoid arthritis.

WIKIPEDIA SAYS THIS:

Fibromyalgia can start as a result of some trauma (such as a traffic accident) or major surgery (usually hysterectomy), but there is currently no known strong correlation between any specific type of trigger and the subsequent initiation of Fibromyalgia. Symptoms can have a slow onset, and many patients have mild symptoms beginning in childhood, such as growing pains. Symptoms are often aggravated by unrelated illness or changes in the weather. They can become more tolerable or less tolerable throughout daily or yearly cycles; however, many people with Fibromyalgia find that, at least some of the time, the condition prevents them from performing normal activities such as driving a car or walking up stairs. The syndrome does not cause inflammation as is presented in arthritis, but anti-inflammatory treatments, such as Ibuprofen and Iontophoresis, are known to temporarily reduce pain symptoms in some people.

Living with fibromyalgia

Fibromyalgia can affect every aspect of a person's life. While neither degenerative nor fatal, the chronic pain associated with Fibromyalgia is pervasive and persistent. FMS can severely curtail social activity and recreation, and as many as 30% of those diagnosed with Fibromyalgia are unable to maintain full-time employment. Like others with disabilities, individuals with FMS often need accommodations to fully participate in their education or remain active in their careers.

In the United Kingdom, the Department for Work and Pensions recognizes Fibromyalgia as a condition for the purpose of claiming benefits and assistance.

Fibromyalgia is often referred to as an "invisible" illness or disability due to the fact that generally there are no outward indications of the illness or its resulting disabilities. The invisible nature of the illness, as well as its relative rarity and the lack of understanding about its pathology, often has psychosocial complications for those that have the syndrome. Individuals suffering from invisible illnesses in general often face disbelief or accusations of malingering or laziness from others that are unfamiliar with the syndrome.

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Well that ends the science bit thanks for hanging in if you have made it this far – here is my bit:


WHAT THIS MEANS FOR ME AND MY FRIENDS!

For me it explains a lot of stuff – the pain, the exhaustion, the falling down when I over do things and even the little stuff like my inability to tolerate whistling, the smell of some perfumes and strong sunlight even in winter (ya boo sucks to my ex boss who thought I was either posing or hung over when I came in wearing sunglasses during February!) It's also a vindication of years of feeling that maybe I was lazy or mad and an opportunity to say to those relationships in the past that have fallen foul of my tiredness, or sadness, I'm sorry but it wasn't all my fault, maybe if we'd known I was ill we'd have been kinder to each other.

I think that although I had been predisposed as a child to fainting and fatigue (I was off school for 3 months with post viral fatigue during 6th form) the constant pain and tiredness date from an ectopic pregnancy in 2000.

The pain varies form day to day and often hour to hour, during a flare up it can be almost unbearable. I find relief through pain killers and heat, but the painkillers don't always touch the pain. When thing are bad I lie down … a lot … this doesn't always mean sleeping (although sometimes it does for hours and hours), in a flare up I am lucky if I sleep before 1am and after 3am – this is stressful for someone who needs 8 hours a night to even like the rest of the human race.

Flare ups can last a few days or sometimes weeks, my worst one ever was triggered by flu a couple of years ago and I ended up unable to walk that took months to get over. Mine are usually triggered by catching anything from anyone, stress (almost instantaneously) and changes in the temperature/weather. This makes me very strange to live and work with, and paranoid about infection. I am currently in a flare up that has lasted nearly a month and have not felt well enough to work since I left my job at the end of October. This is not the first job I have had to leave because I was unwell, but is the one I feel most upset about leaving.

This also means I have to ration my outings and schedule social functions carefully. This leaves me feeling rude and pathetic when I say to people "can we do this another night? I have something already scheduled the next day and will need to rest before hand" So sometimes I don't say it, over do it and literally fall over the day after. When I am unwell I pay for any kind of activity with some amount of lying down time within the next few days. Sometimes good days can turn into bad ones quickly and again I'm left with the choice of pulling out and being rude or tiring myself out. I get cross about giving up stuff I have looked forward to, I don't just go out to not appear rude – I go out because I want to and damn the cost. Sometimes the cost is high.

By far the worse symptom for me is the "fibro fog". I have always prided myself on my smarts and having struggled as a child with dyslexia, worked hard at my spelling and vocabulary. When I am ill both desert me – I can't spell and worse can't see that I have spelt something wrong until someone laughs at me (this hurts!). Sometimes I can't finish sentences because I can't think of the words and sometimes because I can't remember the subject of the conversation, this make me feel stupid. I hate being stupid, hate it!

It is hard to be bright and well informed when you can't remember what you have read. My friends, God bless them all have all become brilliant at charades style conversations where they guess the conversation from gesturing and clues, those that couldn't be bothered have sadly fallen by the wayside, this makes me sad, but "love me tolerate my foibles" is my new motto.

I forget things – things people have told me, places I have put thing, why I am standing in a room. This is embarrassing as I have always had a good memory, some of my friends call me their memory, to me not remembering something someone tells me implies not caring, this isn't so in my case, but I worry that they will think so. In Thailand I found myself in front to a mirror totally unable to say why I was sat there holding my hair, eventually I remembered I was going to plait it to go to the beach. This was when I realised I no longer knew how to plait hair – a skill I had mastered 30 years before. Getting ready to go out now takes longer than ever as I can guarantee it will involve a search for something I picked up to wear, put down again and cannot find. Last week I spent 15 minutes looking for a pair of stockings I had got out, only to have to get out a replacement pair, I then spent another 10 minutes looking for one of them to have my partner point out I was wearing it already. (My partner by the way deserves a medal) .I later found the original pair in a different drawer with no idea why I put them there or memory of doing so.

Right now I have no idea where my house keys are and daren't take the spare set in case I lose them too. For some reason I found light bulbs in the fridge and often have to go through bins for things I have thrown away that I meant to put away. Going to our kitchen cupboards is always an adventure.

Last but not least are the mood swings – woo hoo what fun! The fun part for me is sometimes I know I'm being unreasonable but can't stop (apologies here in particular go to HTB and Rachel- they both know when I mean) and sometimes I have genuine reason to be upset but am told I am over reacting. (This never, ever, ever calms me down by the way – it just doesn't work, but I don't think this is because I have FM, or even because I am female I think telling people what they think or feel doesn't work!) I am reminded of a cartoon in which the guy is looking at the woman and his diary and saying "you mean it wasn't PMT?" Sometime it isn't the FM, sometimes I am genuinely p*ssed off – telling the difference is what makes it fun for you!

Anyway as Forest Gump would say, "that's all I have to say about that". This is real, I do have it, I'm sorry when it affects you too and thank you for listening.

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