Do you tell people you have FM?

[fibroman]

I just wondered if FM sufferers tell people what they are suffering from. I must admit I tend to keep my problems to myself except for immediate family. As far as friends and colleagues (when I worked) are concerned I didn't mention FM unless I had to. I just feel that because I look well that people wouldn't understand.

When I told members of the family no one had ever heard of it, so I had to explain the symptoms and how they affected me. I would suspect that would be the same for the majority of the population unless they know someone who suffers from it people are probably ignorant of it.

How do you explain to people about your illness?

[lsl]

hi fibroman

i am still in work at the mo, will try to carry on as long as i can,
i found this whilst searching on the net
it may help some people understand, as one thing i find alot is people at work say you look tired, you should get a goodnights sleep, i have to bite my tounge but its not their fault, i would say the same if i did not understand the condition

hope the helps

What you should know about me

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.
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.
My forgetfulness – Those of us who suffer from it call it Fibrofog. I may not remember your name, but I remember you. I may not remember what I promised to do for you, even though you just told me seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have selective memory. On some days, I just do not have any short-term memory at all.
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 on the stairs behind me, please be patient. These days, I take life and stairwells one step at a time.
My sensitivities – I just can’t stand it! “It” could be any number of things; bright sunlight, loud or high-pitched noises, odours. FMS has been called “the aggravating everything disorder”. So don’t make me open the curtains or listen to your child scream. I really can’t stand it.
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 of 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.
My depression – Yes, there are days when I would rather stay in bed or in the house or die. 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.
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.
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 knows how to fix it.
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 cramp you had in your leg last week was all over your body. Massaging it out was very painful, but had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.
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 have my good days, or weeks, or even months. In fact, the good days are what keep me going.
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 knee pain or shoulder 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 internet have many good books and articles on fibromyalgia.

[fibroman]

It's brilliant that is isn't it, I have got it on the main website http://www.fibromyalgiahelp.co.uk/whatyoushouldkno.html

I pinched it off another website and it really does sum up fibromyalgia very well.

I took voluntary redundancy over two years ago and started working from home with my wife and to be honest it is the best thing I ever did, I feel so much better than I did when I was at work. Now if I have a bad day I can just go and have a lie down, my work colleagues just didn't understand how I looked ok but was feeling really bad. I think in my case that stress made the fibromyalgia much worse.

Unfortunately not every one can just give up work as I did, I hope you manage to carry on working.

Take care
Fibroman