Living with hidden Illness – Fibromyalgia/CFS

Fibromyalgia/Chronic Fatigue Syndrome 

Original author is: Adrienne Delleo, Source: About.com,

Understanding a complex disorder in the body – for those of you who do NOT have it..
 Fibromyalgia IS a complex condition, a disease that is difficult to understand, especially for those of you who do NOT have a medical education, but also for many who are actually medically educated. Fibromyalgia involves the BRAIN and the NERVOUS SYSTEM and because of this it has an effect on almost the WHOLE body. If you try to understand a person with this condition / disease, it can be incredibly confusing. We who have this disease have a bizarre collection of symptoms that do not show up in medical tests-blood tests-etc, and thus it is countless doctors and relatives who decide that this MUST be a psychological problem. As far as research has come today, however, it turns out that this is NOT a mental condition-psychosomatic disorder- but a very VERY real PHYSICAL disease! Sitting down to start studying scientific terms such as “neurotransmitter dysregulation, nociceptors, cell enzymes and opiate pathways” – is not always the easiest thing – not even for us who have the disease. My goal with this blog post is to explain – in SIMPLE words without a lot of medical “frills” – to help you actually TRY to understand what your mother, father, better half, sister, brother, cousin or cousin, or friend- actually goes through on a daily basis- WITH fibromyalgia!

FIBROMYALGIA and PAIN:
– Imagine that you are planning a party and you expect that there will be approx. 20 guests. Three / four friends of yours have promised you that they will come to help you, they will come early. The problem is that your friends who promised to help you, they never show up … and you suddenly get not 20 guests, but 100! Everything becomes complete chaos for you. This is a brief description of the pain signals in someone who has fibromyalgia. Your cells send far too many pain signals (party guests) – up to FIVE times more than in a healthy person. It can turn a mild pressure on the skin into pain. When the pain signals reach the brain – they are processed by something called “Serotonin” … People with fibromyalgia do not have enough serotonin (like these friends who do not show up to help) and this overloads the brain. It is a kind of short-circuit break in the cable that supplies the right amount of power from a source and the engine does not get the right fuel. It is not an imaginary pain, it is a misunderstanding between the brain and the body that turns into a real PAIN … -There are other substances in the brain that also amplify the signals and “turn up the volume on the system” in absolutely all areas. If you look past the feeling of pain, it also amplifies light, sounds and smells. This helps to overload the brain. It can lead to headaches, confusion, fear and anxiety in some and even panic attacks.

FIBROMYALGIA ups and downs:
We who are CHRONICLES- chronically ill- we are ALWAYS sick! If you have diseases such as cancer, viral diseases or relapsing diseases, everything is fairly constant – you KNOW that the person is ill and there is no question about it! What is confusing for you, however, is to see me lying in bed on Monday, but still washing around the house on Wednesday. We who have fibro- we use up ALL our energy- resources as soon as we are obvious to make up for lost … and then collapse a few days later … Look at it this way: All our hormones change, in the same way as weight gain-weight loss, blood pressure-everything can change in a day or two-or during a week / month etc. All systems and substances in the body work in this way, they respond to different situations by rising / fall. Research shows that fibromyalgia DEFINITELY has something to do with abnormal levels of several hormones and substances. As all of these go up and down in levels, one or more are in the normal zone and sometimes not. The more of these hormones and substances that are NOT within the normal zone, the worse the disease and the worse the person with fibromyalgia feels.

FIBRO and STRESS:
A stressful situation usually exacerbates the disease. We react differently both emotionally AND physically to stress. Physical reaction: Adrenaline and hormones increase to get the body up a bit. We do not have enough of these hormones which makes stress aggravate our situation. The head will, but the body does not listen! Something that is stressful for us is: To be told to “take us together!” Not to be believed! Feeling helpless! Little or no sleep! Poor appetite and diet Damage Physical stress Emotional stress Conflicts … Plus, plus, plus … the list goes on and on …

FIBRO and CHALLENGES:
Think of one case when you were not only tired, but really REALLY exhausted … Hell week in the military … The night you sat up all night to rehearse for a test you HAD to stand on, but at the same time you were so tired that it hurt all over you? Then imagine that you will be SO exhausted ALL day while you work, look after kids, clean houses, cook, shop, etc. For most people, it helps to take a day or two off, or a good night’s sleep. – to get rid of that feeling of exhaustion. For me and other people with Fibro, it is not as easy. We can struggle with many different sleep disorders — or have them all: – Insomnia (Difficulty sleeping or just falling asleep!) – Impossible to reach deep sleep and stay in it -Sleep apnea: breathing problems that wake you up many times during the night … -RLS: “Restless legs syndrome!” It “crawls and crawls” under the skin in the legs and in the arms also at times, and you have twitches that make it difficult to sleep. I have “ants in my legs!” -PLMD: “Periodic Limb Movement disorder: Involuntary twitching in arms and legs that makes it difficult to fall asleep. The feeling of falling out of bed, the whole body thickens … I have it …

FIBROMYALGIA IN A NUTSHELL:
Many diseases usually involve a part of the body or one system. Fibromyalgia involves the WHOLE body and puts EVERYTHING out of play. How bizarre and confusing the various symptoms are or can be, they are associated with very real PHYSICAL causes! Fibromyalgia can take someone who is highly educated (even doctors!), People who are ambitious, hardworking and tireless, and turn them into a person unable to work, clean their own house, exercise, think clearly and to to never never ever feel rested and healthy. Just forgetting words, forgetting appointments … it’s destructive! And when you are then told to “lighten the fat ass and do something!” Can you imagine how it feels?
* It is NOT a PSYCHOLOGICAL DISEASE, one is NOT burnt out or depressed
* We are NOT lazy
* It is NOT whining or simulation … or as someone said; “you are just a FAKER !!! It’s just piss that she’s sick!” I heard it … but never said I heard it!
FIBROMYALGIA- is a dysfunction in the body and brain that is difficult to understand! A short circuit and incorrect connection of nerves and impulses that are difficult to understand, difficult to treat and so far IMPOSSIBLE to cure! Believe me: the WORST thing is to ADMIT to yourself, to admit that you MUST live with this, that you can do NOTHING with it! So the BEST help we can get is UNDERSTANDING and SUPPORT from FAMILY and FRIENDS !!!

Here are some often asked questions on Google: