Invisible Illness

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. 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.

Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and multiple tender points. "Tender points" refers to tenderness that occurs in precise, localized areas, particularly in the neck, spine, shoulders, and hips. People with this syndrome may also experience sleep disturbances, morning stiffness, irritable bowel syndrome, anxiety, cognitive problems ("foggy mind")and other symptoms.   Fibromyalgia: A chronic syndrome that causes pain and stiffness throughout the connective tissues that support and move the bones and joints. Pain and localized tender points occur in the muscles, particularly those that support the neck, spine, shoulders, and hip. The disorder includes widespread pain, fatigue, and sleep disturbances.   Onset of FM:
These illnesses are different experiences for different people.   Sometimes the illness hits quick and hard, in other cases it comes on slowly.   There is no definitive test yet for the illness, so at best the diagnosis by process of elimination.   Because of this and because the world has only really begun to take note of the illnesses in the past decade, many physicians haven't learned much about them, nor stayed up to date.   This means the onset of the illness can be a trial in itself.   Consider awaking one day in an otherwise good life to have the symptoms of a bad flu - aches, fatigue, depressed immune system, and a cognitive fog.   You expect it to go away soon and may take a few days off work.   Welcome to a chronic illness.   This isn't going away.   After a week you seek advice and for most patients this begins a process where many of the physicians you consult will tell you it's in your head, there's nothing wrong with you.   What's the take-home message for your employer and family?   That's when relationships with employers and family often begin to fall apart.   This illness might be fair game for suspicion if only 10,000 had it, but 1,000,000 - 1,500,000?   Something very real is going on.   Unfortunately this situation has led to most patients being misdiagnosed and given the wrong medication.   A definitive test would change this situation, but more compassion is needed, and more education. Fighting loss of employment, the break-up of relationships, and facing disbelief from physicians is not the recommended situation for coping with FM & CFS.   The onset of the illness is traumatic and can be depressing, which doesn't help.   Imagine your life suddenly changing like this.

PiscesDream PiscesDream
51-55, F
21 Responses Apr 30, 2007

I don't have to imagine it- I live it. It's the worst thing that's ever happened to me.

I have found some natural solutions to these pains! I didn't realized so many people have suffered and are suffering! I want to pay it forward! My friend and I were both secretly using the same natural solutions and we both improved significantly without all the side effects of pharmaceutical meds! If you are interested let me know! It works so fast!

I would love to know

I would love to know, please share?

t y for all the info,
it sucks, sometimes if i allow my mind to wonder, i get scared at the pain and the what if and wtf am i going happen years from now with the intensity

yup . . . I have it too . . . excellent write up on it . . . thank you for getting the info out there for folks to learn about it and understand a bit better .. . . take care . . . hang in there . . . if you ever need to talk to someone who understands all to well . . . pm me . . . 8D . . .

I can imagine it all too well...

So well written - Thank You.

You should look into RSD...Reflex Symp Disease. Yes, agreed...heaven has to be better than this!

I've never heard of it, but I'm googling it now. ty

Actually, that just the scared the *** out of me. Reflex Sympathetic Dystrophy plus Fibromyalgia. That one more things that it could be. "Fibro has been reported to coexist with RSD in some people.There is no associated or identified inciting event in one-third of individuals with RSD." ""

I was diagnosed with Raynaud's Syndrome which seems similar in some aspects.

I often wondered whether or not Lyme's disease may play a part in this disease, it is debatable and unless blood tests are positive, there is no way of proving that this is the case.

I've had the tests done and that's not the case for me.

Did. You get tested for lyme disease??????

yes, I've had the test done and it is not the case for me.

Did. You get tested for lyme disease??????

My daughter in law suffers greatly from fms..<br />
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It is a relentless, cruel disabling disease..<br />
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I was just diagnosed and I'm 33. I have 2 small active children...duh...what children aren't active LOL and it's hell at times. I have good days and bad days, but even my good days, normal healthy people would be calling into work saying "I'm coming down with the flu and can't work today" ... while I'm runnin errands with kids thinking I can't take one more damn step!!! I can't sleep, and when I do my nightmares are awful, my tender points in my chest are so bad and my ribcage hurts so bad on the L side it hurts to wear my bra, to take a deep breath, and God forbid I have pressure put on my chest. UGH. The brain fogs are horrible and at times humiliating. You just lose your train of thought out the window and can't mentally organize anything, you walk aimlessly from room to room not knowing what you really are trying to accomplish. It's so frustrating. This is hell.

I was diagnosed a year ago. I am 57 years olds and I had just begun to enjoy doing many things that I found pleasure in doing as walking 8 miles a day, my husband and I would ride our two seater in the evenings, spending full filled weekends with my children and grandchildren was all stolen from me with the pain and agony of allways hurting, sleeping and tired. I am now at the point as to the same symptomes as you are. I can't tolerate to wear my bra for the full day, taking a deep breath or to cough causes extreme pain in my chest. My ribcage feels a through I was beaten and I just don't remember it being done. I am in constant pain everyday. Somedays are mild, somedays are severe. My three children are all grown and gone. I have seven grandchildren and two great children and my life is limited to what I can do with them. This illness is pure hell. So I am mentally preparing my mind that when life is over on this side I would know then that heaven will be better than hell. Be strong and live each day knowing that you can survive.

I totally understand. I did not have it bad when my kids were litte, I don't know how you do it! Try provigil, it did wonders for me. It is indicated for narcolepsy, it gave me energy to get thru the day. I take 200mg in morning. Have your Thyroid checked by an endocrinoligist and adrenal numbers. Not just blood tests. Thyroid scan etc. Very misdix in females, acutally the #1 misdx disease!! Thier are great books on misdx thyroid problems in woman, get one and read it. I did the tests and did not have a problem but a friend with fibro did and it turned out to be a wierd Thyroid problem. All symtoms went away when she got on a thyroid med!! crazy right? You never know. I hate the brain fog...feel like an idiot. Make sure you take a nap somehow each day. Hope this helps!

hmmmmmmm, Thats not very many likes

Ask your doctor about amytripyline, it worked wonders for me, I was on it for about 1 year and I now have been off for about 3 months with no return of worsening symptoms.

I have this and i must say it is terrible i am only 19 and am supposed to be havin fun in collage but instead am fightin just to go to class and work many people never think snything is wong with me but i try to hide it as best i can i want a normal life and i will have it!!!!:) i was diagnoss when i was in grade school the youngest person in Indiana Yay me Not!! but i am just thankfull for my parents and sister i will not be making it alittle bit if not for them!

i was unable to complete my university studies due to widespread and accompanying arm numbness inhibiting my progress. The unsupportivenss if my peers led me into a deep depression where i shunned its severity to put on a brave face and appear normal to everybody else. I think depression and fibro go hand in hand. I still havnt had a diagnosis but im not stupid, i know iv got it. These tender points are impossible to cure with massage and they have excruciating trigger points. I am writing here for the first time to share my story. Its devastating to be living ack with my parents who I am sure believe i am lazy. The extension on my studies should have helped though it is so hard to concentrate when my back is so tender against the chair at the workstation! is there any light at the end of this gloomy tunnel....? iv taken to nutrition but it is difficukt to retain the motivation when i cannot be certain itll make a huge difference. sometime i fantasis about just wishes to all of you, comments 23....xx

Your right Annakey!

Its really great you posted that info for others.... so many don't see what we go through. The more awareness, the better.

Amen Moxie Amen!

I have had this condition for a long time and it's still with me but I will conquer it or else - I'll die tryin.

I have known a couple of people who had this terrible illness. I do believe from what I have seen that it is very painful and miserable. The YMCA near where I live at one point had a support group for people with Fibromyalgia.