For I know well the plans I have in mind for you, says the Lord, plans for your welfare, not for your woe! Plans to give you a future full of hope. When you call me, when you go to pray to me, I will listen to you. When you look for me, you will find me. Yes, when you seek me with all your heart, you will find me with you, says the Lord, and I will change you lot; Jer 29:11-14

What is Fibromyaliga and Chronic Fatigue Immune Deficiency Syndromes?

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.

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.

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.
                                                                            

Chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), is a serious, yet poorly-understood, debilitating and often disabling condition.

Although many people with CFIDS (PWCs) improve over time, most do not recover fully. For this reason, it's important for people with CFIDS to have the support of family and friends as they integrate the challenges of living with CFIDS into their lives.

Symptoms
The symptoms of this illness are numerous, varying among individuals and even in the same person over time. Symptoms include debilitating fatigue, especially following any type of exertion; markedly decreased energy level; sleep disorders; cognitive (memory and thinking) problems; muscle and joint pain; headache; sensitivities to noise, light, foods, medications and chemicals; gastrointestinal symptoms; depression; mood swings; anxiety; and decreased libido (sex drive).

Early in the illness patients often sleep a lot. As CFIDS progresses, the sleep disorder changes. People with CFIDS (PWCs) may have difficulty falling or staying asleep. They awaken unrefreshed, even when they have slept for a long time. Exposure to multiple sensory input such as noise, motion and sound can lead to "sensory overload," irritability and relapse.

Effects on the Ill Person's Life
CFIDS affects every aspect of an individual's life - career, finances, activities, education, self-esteem, relationships, etc. Formerly secure and confident people may lose self-esteem due to lack of productivity, difficulty engaging in pre-CFIDS activities, trouble keeping up with responsibilities, inability to care for others, weight gain and other appearance changes. These changes may cause friends and family to perceive them as "acting differently" and can often upset the balance in relationships. Although the primary effects of CFIDS are experienced by patients, secondary effects are experienced by everyone around them. 

For those that are friends, family, or caregivers of those with FM/CFIDS:

http://www.cfids.org/resources/family-and-friends.asp

Since this illness can affect so many areas of the person's life and family's life, grief is common. The person with FM/CFIDS may no longer be able to carry on every day responsibilities and tasks, let alone recreation or work outside the home. Because FM is invisible (person appears normal, looks healthy) other friends and family don't see the horrible pain and fatigue. It is difficult for them to understand and the person feels isolated and alone. The person with FM/CFIDS grieves their inability to carry on the same as before the onset of this syndrome, but the family and friends may yet do the same. The person with FM/CFIDS role in their family's life has changed forever. It is an adjustment  for everyone. It is a change that nobody asked for and can leave you feeling helpless. Communication and support is vital to the family.

FM/CFIDS to me is pain head to toe but worse as day goes on or after activity. It is exhaustion, complete exhaustion, with no recovery. Like I come unplugged from the wall or my battery just died. It is a feeling that my body is heavy like stone and feels stiff like that too. It is lack of sleep, EVER! It is restless legs, migraines, irritable stomach, sore throats, swollen glands, low grade fevers, muscle spasms, knots in your muscles, and feeling dizzy like I just walked off a carousel. It is living in a brain fog and being mentally exhausted most of the time. It is forgetting words or mixing my words. It is not being able to focus on anything for any length of time. Daily noise or everyday light can be annoying to me.  It is an invisible illness that has separated me from my old self. I am not the same person anymore as before this illness, I am different. My friends have moved on and my family tolerates me. I am no fun anymore. I can't sit or stand for too long without feeling stiff. I can't walk distances, shop, run errands, let alone to housework anymore. Life goes on without me and I understand that, but I miss the old me. So I'm trying to find myself in this new world of mine and so I cry silent tears.

You will find lots of links to check out to find more about CFIDS/FM. If you suffer from these, educate yourself and grab some supportive friends who battle the same thing. I gathered mine from support groups online and I have one dear friend I grew up with that suffers as well. So she is my shoulder when I need one. If you are friends or family to a loved one with FM/CFIDS, then there are some links here for you too.

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In 1999 I began having terrible sinus infections that would not clear up. I had sinus trouble and surgeries for years, but this was worse than ever. I felt bad all the time. I went through massive antibiotics and steroids and surgery before doctors discovered this was an Allergic Fungal Sinusitis. A very rare and so far, not curable, illness.

So after a couple more surgeries and learning some coping techniques, I accepted this hideous disease and then in 2001 I thought I had come down with the flu. I was sore and achy all over and felt extremely exhausted, flu like symptoms. In a few days it worsened and I was hardly able to walk and lift my legs! A simple touch or hug brought tears to my eyes.  I went to the doctor and remember walking down that long hall at the clinic. It was all I could do to pick up my legs. When the doctor said "fibromyalgia" , I recognized the word, but Me? Why me? How? What does this mean and what does my future hold?

Since 2001 I have had some good days, but more worse than others. I constantly battle fatigue and when I say that, I don't mean being "tired" from like exercising or working hard, I mean complete exhaustion that never lets up! I battle a good nights sleep despite various sleep aids. Oh, I've been sleep tested and use the CPAP machine, and I take sleeping medications, but I still do not feel rested. I take something for depression, only because it helps one deal with the chronic illness better and helps with pain. I take pain medications too. I continue to work full time, but it gets very hard. I've given up most of my social life and housework, and all the shopping.

I do pray my illness will eventually be 100% better, or if not, at least better so I can shop and do the things I used to enjoy. To just feel more energetic, would be nice. I pray that is what my future holds.

ProHealth Immune Support

FibroHugs Support and Awareness

National Fibromyalgia Association

CFIDS & Fibromyalgia Self-Help

Rest Ministries - Hope Keepers          

Fibro Faith

We are FMily

Fibro Angels Guiding Light

Where is God?

CDC on Chronic Fatigue

Fibromyalgia Network

About.com

Pain and Living

Invisible Illness Advocate

FibroHaze ( A must read to break from the pain and laugh about fibrofog.)

                                        Other Personal Stories that I have enjoyed Reading