Explaining Fibromyalgia ! Sometimes difficult ....please read x

Hello Everyone,

We often reply to blogs about, How to explain Fibro to others ?

I stumbled across this on Facebook and thought I would share,

'A letter to the healthy world from the land of chronic pain & fatigue'

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 do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't 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 behind me on the stairs, 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, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes 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 if 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. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. 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. Eitherr way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me 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 charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it 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 can 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 shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

fms-help.com/healthy.htm

Look forward to reading your comments

M x

6 Replies

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  • That explains this syndrome better than I've been able to!

  • I have been to the doctors regarding Fibromyalgia and my doctor said that he thinks i have it and has sent me to see a specialist but he also made me feel like it was all in my head and that i was just making it up... feeling a little fobbed off by him.. Just wondering if that ever happened to you before you got diagnosed ?

  • I was given the brush off 14 years ago by local rheumatologist, because I worked NHS I went to another one for second opinion in a bigger hospital with more funding,, my treatments are amazing, hydrotherapy and acupuncture done by same physio and occupational therapist.. don't be fobbed off shout and scream make a fuss, a great many know nothing about our condition so go to someone who does!

  • That explains exactly how we all feel and would love to remember all this when you know people are not believing what you are trying to say .will have to try and print this and take with me to work as they disbelieve and still try to push you to do something you know you can't do or make things worse and don't realise how frustrating it is that you want to but can't and makes you feel worthless . Brilliant x

  • Wow!! you are having it bad- IT DOES GET BETTER...as I say to others do not assume everything is fibro, migraine can be caused by the muscles up the back of your neck to your skull, I was seen by a neuro specialist and have some superb meds that I take before the migraine becomes a big issue, I also get ocular migraine if I rub my eye lids. its ALL tiredness most of the time BUT never stick the fibro label to everything as you could be wrong.. I have hydrotherapy and acupuncture and after 12 years on meds take very little now, talk to your doc about a good physio who can take you for these therapies

  • You are so right!! Since I retired I focus too much on this condition and I am looking for something to occupy my days, as I retired early my family and friends( whats left of them) are still at work.. You should give this page to the Fibromyalgia Society who might publish it in their booklets..