I have done a little research on Fibromyalgia . We have two members now with this syndrome (which is always known as FM) so i have been keen to understand FM and other members can learn a little about it too if they are interested.
From what i have read, it seems to be little understood and in general, and the diagnostic criteria seems to be that other conditions are ruled out as part of the process.
Sufferers with Fibromyalgia can experience a range of symptoms including:pain, fatigue, sleeping disorder, irritable bowel syndrome, chronic headaches, Temporo-mandibular Joint Dysfunction Syndrome and Multiple Chemical Sensitivity Syndrome.
FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.
Most patients with fibromyalgia 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 fibromyalgia, but it shows up in people of all ages.
Aggravating factors - Changes in weather, cold or draughty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.
(taken from the UK Fibromyalgia website)
Our Fibromyalgia members please feel free to offer some of your experience and insight
Post by kilg0retr0ut on Dec 31, 2013 15:11:33 GMT -8
Thanks Lara, Booktrout has been living with the neck and sholder trouble for along time. Just started to try and figure it out. Chronic pain sucks whatever level you have.
Thanks Lara, Booktrout has been living with the neck and sholder trouble for along time. Just started to try and figure it out. Chronic pain sucks whatever level you have.
Indeed it does...i hope Booktrout gets some relief from it....and you are very welcome kilg0retr0ut
I have to say a big thank you for adding this section to your forum. As you know my own forum is mainly dealing with Fibro/CFS which i have had for 30 years. I am now a wheel chair user because it as effect my lower back muscles. We call it the Invisible illness because no tests can ever find what our problems are for which we suffer with many. Below i have taken a copy of what having fibro/Cfs really means to people like me. we all suffer differently and no 2 may ever be the same. This as you can imagine makes treating us very hard. It is a long read sorry but i do think it is one of the best easier examples around. this also effects the way we read , spell, talk in fact it impacts on every aspect of our lives. And as major effects on family and friends
Quote Edit like Post Options Post by Mo on 13 Jul 2013 at 10:48pm
What's Going On? A Simple Explanation of Fibromyalgia Making Sense of a Complex Disorder, For Those Who Don't Have It Updated September 22, 2009
About.com Health's Disease and Condition content is reviewed by the Medical Review Board
Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.
If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.
Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.
The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.
Understanding the Pain of Fibromyalgia Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.
That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.
When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into very real pain.
Other substances in the patient's brain amplify signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.
Related terms
•Substance P •Serotonin •Glutamate Understanding the Ups & Downs of Fibromyalgia Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.
Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.
Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.
Related term:
•Flare-up Understanding Stress & Fibromyalgia Some people think FM patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.
The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.
People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.
Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.
Related terms
•Norephinephrine (noradrenaline) •Cortisol •HPA Axis Understanding the Fatigue of Fibromyalgia Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:
•Insomnia (difficulty getting to sleep or staying asleep) •Inability to reach or stay in a deep sleep •Sleep apnea (breathing disturbances that can wake the person repeatedly) •Restless leg syndrome (twitching, jerking limbs that make it hard to sleep) •Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep) Fibromyalgia In a Nutshell A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.
Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
•It's NOT psychological "burn out" or depression. •It's NOT laziness. •It's NOT whining or malingering. •It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure. The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.
kilgo said My guess is finding the support and understanding is the toughest part.
Your spot on there kilgo, It is now a Known medical illness so it is a start down a very long road to finding treatment for it never mind a cure. They have come up with 3 kind of meds to try and help with the symptoms but for the feed back it does not stop the pain it masks it or makes it bearable.
I am one of the many who can not tolerate these meds so pain is a way of life for me and many like me. I am thankful to read there is a lot of new research and money been put into Fibro/Cfs. I was seen as a neurotic hypochondriac way back in my younger days still am by some when I was young my family used to say Don't ask mo how she is cos she will tell you
Now 30 yrs and a wheelchair later they say to me so all them times you were sick you really did have something wrong with you!! enough said I think. But I am a great believer in making people aware of our health issues and disabilities if only so they know the best way to offer help or understanding. We can not blame folks for been ignorant of our needs if we don't tell them.
Scared, lonely,overwelmed. These are just a few of the feelings that i remember very well. The fear of not knowing what the futer may hold, will i die? how will i cope if left alone ? who will care for me if i am bedridden?
These were all very scary thoughts at a time the name of what i had was still been decided upon ?? Some was calling it ME some CFS and for the most part it was Yuppy Flu !! The doctors had no idea and many just thought I was an hypocondriac.
I cant say i blamed them after all when you have test after test done and they all come back ok then you should be feeling well right ? So then I start to doubt myself am i Causing myself to be sick like this ? I know I had exhausted my self beyond belief reading everything i could get my hands on everytime i had a new symptom show up. Gosh i read so much medical stuff i could have sat the Doctors exams lol Puters back then was never thought of I had never seen one !!
One thing i did learn I was not going to die. What ever i had was not going to kill me. If it was i surely would have been a goner long before now. So from the years of 25 to 34 i settled in to a very exhausting and painful way of life. Crashing when it all got too much then when feeling better back on the merry go round of been jack of all trades to my family while still going out to do a few hours work a day.
I finally learnt one thing for me no amount of strong antidepressant or pain killer did anything to help but made me totally spaced out and unable to function most of the time. So i decided pills were not for me.
Why would i want to put things in my body that were not helping one iota infact they were effecting me very badly with my tummy and the way I spent my days in a drugged up haze. If i was going to feel as ill and have all the symptoms taking the pills as i would with out them it did not make sense to keep swallowing them. I look back now and think i took them out of fear I thought they would make me better and i may die without them !!
Fear makes us do strange things at times. I wanted to believe all these herbs and chinese meds were going to make be better. I wanted the accupunture to work so much. I tried every fad diet out there. I believed taking all the pills my doctor said would make me feel better. I was scared so i tried it all.
Some people today do say a cocktail of drugs the docs give them does not make them better but helps with some of their symptoms. I believe they do help some and i would say if they help you use them. As i say we are all diferent so what doesn't work for one person may help another. You wont know what may help you till you have given it a go.
I would give a word of caution to young people just dx with Fibromyalgia, It as now become a known medical illness and accepted by the medical world finally !! Unfortunately this as opened up a new world to the charlatans out there who pray on the sick and vunerable with their quack pills and potions !!
These people do not have a cure for Fybromialgia because no one as found a cure for it at this time. Anyone who tells you they have are after your money. Believe me if there was a cure we would have heard about it I would not be writing this and the pill companies would be shouting it from the roof tops making big money out of our illness. So please be aware of rouges selling their cures.
For me as i have got older I have become very isolated. my best friend after my husband is my PC. But i have put it to good use to reach out to people and make friends. Not just those with Fibro But all kinds of wonderful,caring and understanding people.
I found how easy it is to become scared of my own thoughts when I isolate myself from others. There is just nothing to think about but how i feel How lonely i am how much pain i am in.People with fibro really need some kind of distraction on a daily basis to help them not feel so alone all the time.
Isolation really can make fibro feel worse i know it as done this to me for many years now. It also imo as many knock on effects regarding my health. I believe for me one of the biggest reasons that helped put me in a wheel chair was Fear!!
I became scared everytime i had to go to work, shopping ect because even though i may not set out in too much pain i knew i would end up in pain. Therefore i went out less and less my back muscles became weak through lack of exercise, in the end i needed a wheelchair.
Getting the chair did nothing to help me i believe it made me become more isolated and alone as i hated been seen pushed about in it. I never left my home for 2 yrs of course i became agraphobic I suffer anxiety/panic. I say i do not did because I am now trying to deal with these problems now as well as the fibro.
There can be many other problems arise from being scared of or giving in to Fibro the above were a few of mine weakened muscles is a major one not just of the back but arms, legs, neck the whole body can suffer over time if not used.
It is a true saying use it or loose it and this imo is very true when talking about fibromyalgia.
I have talked about a number of knock on effect issuies that having Fibro as fetched to my life.
Isolation
loneliness
Fear
Muscle weakness
Loss
Panic
Anxiety
I believe if 30yrs ago i had the help and information to understand Fibro and was able to meet and talk with others who suffer with it like there is for people now I really do think i would have been able to deal and cope with it a lot better than i have done and the above list would at the very least be smaller if not altogether none existant.
The first time i ever actually spoke to another person going through what i was going through was only 4yrs ago !! I had spent 27yrs all alone with this illness I allowed my own fears and medical ignorance of Fibromyalgia to almost cripple me.
I am now fighting back Slowly i still have all the above pain ridden problems and the wheel chair but now I use it when my agraphobia allows me to leave my safe sanctuary called my home lol i still suffer panic/anxiety ect But things are slowly changing for the better believe.
I am no longer lonely i have loads of online friends. I dont fear Fibro anymore i know it wont kill me it only feels like it LOL Which in turn as lowered my panic /anxiety quite a lot. Which allows me the courage to go out side on a good day.
I think a lot of the side problems that come with fibro could be helped greatly by arming ourselves with as much information at the start of a dx of Fibromyalgia. There is so much info out there these days i say use it take advantage and learn from others Try the meds on offer they may work !! I just so wish all this helped had been available to me 30yrs ago what a diffrence it could have made to my life.
Above all i will say please dont be afraid of Fibro it is not a death sententance it will not kill you. There is a life to be lived even with fibro just a different one and Imo trying to be as positive as you can is a good place to start
Thanks for the explanation mo, it's crazy how serious fibromyalgia actually is compared to what people think it's like. I guess it's the same SCI world because people don't really know all the complications associated with a spinal cord injury, they just assume that it's only my legs and hands that don't work. As for people claiming that there's a cure when there's really not one, that's also a common issue in the SCI world. I think the best information for these kinda conditions, disabilities, etc is found in places like forums since most of the info is from others with experience of the condition!
It's good to see that you're not letting it bother you and bring you down
mo..it sounds like you have been through a rollercoaster with this and gone through a vast range of emotions.... Its great that you have been able to share your personal feelings and experience on this because im sure that many with this condition with have the same worries
Its evident that you have tried to be very pro active in finding self help treatments and i like how you say you are 'fighting back slowly' ....this sounds a positive turn
On my travels on the net i came across this information, it looks very worth a read Its called the Ten Causes of Fibromyalgia
Conventional medicine has yet to uncover the cause of fibromyalgia and only offers management of symptoms through pain medications and antidepressants.
Functional medicine, on the other hand, looks to find the root cause of fibromyalgia and other chronic diseases, treating the problem at the root level to restore the patient to health. As a functional medicine physician, I've helped many patients recover from fibromyalgia. Below are the top ten root causes of fibromyalgia I see in my clinic.
The article talks about glueten intolerances, candida overgrowth, mercury toxicity as part of the ten highlighted causes. Please click on the link for the full article Here
As you have pointed out on another thread mo Fibromyalgia can hit people who have had injuries and illness so its always good for us all to have knowledge of this condition that affects so many people worldwide
Thank you Lara for looking info out to share i will take a look and share with my group that's very kind of you DJ that is one of our biggest problems i guess as you said people just do not realise the amount of things we suffer with apart from what they can see with the naked eye. chronic illness and disability as so many knock on effects to our over all health.
Thank you Lara for looking info out to share i will take a look and share with my group that's very kind of you DJ that is one of our biggest problems i guess as you said people just do not realise the amount of things we suffer with apart from what they can see with the naked eye. chronic illness and disability as so many knock on effects to our over all health.
Yeah defiantly mo, there's not enough awareness out there about disabilities. To be honest, I've never even heard of a spinal cord injury prior to my accident!