This is my first post but reading other posts it's made me feel less alone and understood. I was diagnosed early this year and pretty much my whole body is effected. I feel my veins don't have blood flowing it's more like concrete. I do have other health problems, osteoarthritis etc and have recently had both knees replaced. When I was diagnosed not only did i have to educate myself about Fibromyalgia but advised by MSK to talk and explain the condition to loved ones especially on bad flare ups and i cannot move for days so they understand. I have unfortunately not had any support apart from my daughter's understanding what I go through and feel even lower in mood because ive/it has been ignored.
Has anyone else found this??? How do I deal with it??? I'm trying to improve my mental health.
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Hi sorry you also have a diagnosis of fibromyalgia. I honestly believe people who don’t have fibro will never truly understand what we go through, regardless of how many times we try to explain. I actually don’t bother as I think other people’s opinions don’t matter. You have your daughters support which is great. If you really want people to understand then you could give them a fact sheet about the symptoms of fibromyalgia and how it effects one on a daily basis.
I lost my job due to my employer not understanding what i was going through, you would think people would be more sympathetic about illness but they aren’t. I can never see it changing.
My advice would be to reserve your limited energy as those who really care will do all they can to understand how Fibromyalgia affects you physically and mentally. It is very difficult to explain a complex illness which you don’t understand yourself. Take care and listen to your body and limitations.
Hi its great you have posted on the forum.I agree with Zoonie send for the booklet for your family members to read. Another thought is to go to a support group learn how other people get on with their families? If you get to a group someone may become friendly enough to meet your loved ones . Seeing and hearing from someone else about Fibro is very empowering and very helpful .
Unfortunately, we Fibromites all look apparently healthy, so people don't understand how we can wilt so quickly doing what they see as 'normal'.
Often we will be branded as 'lazy' or 'attention seeking'. It is a general assumption, just as many folk only associate disability as 'someone in a wheelchair'.
It is ignorance of course, but we can't fix Stupid! I've found the best defence is counter-attack. Say something like' Swap bodies with me for a week!' Don't elaborate, just leave them thinking. Unfortunately they won't know unless they get Fibro themselves.
healthunlocked.com/fibromya..., hello there and glad you have posted , a great forum to come have a chat and read posts, yes so many of this have encounter this along the way, glad your daughter is supportive, I agree look out for yourself and if people do not show any understanding /empathy they are not worth knowing, it took me awhile to realize that, mostly my family are in tune more with it, and I’ve learnt to say no to social things etc when I’m not up to it’s, it’s us that will suffer over doing things in the end. I’ve been on the forum a long time it helps to check in now and again to have a read and remind myself I’m part of a very big (unwanted club) but members really are supportive. I’ve posted a link above if you would like to lock your posts then only our community can see, xx
Sadly I have given my family a easy to read and not over powering booklet so that's what hurts. Especially my mum but she is old with her own health problems.
I hate how I feel and the impact on my life. I'm 48 yrs old worked since I was 14 been independent paid my bills, mortgage, did everything for my family busy busy busy to this sad existence. House bound no socialising no work life just my home which feels like my prison.
Sorry to moan I'm having a feel sorry for myself day.
Stop trying to explain the condition. You are trying to explain what toothache is to someone who never has had any trouble with their teeth.
Forget about trying to improve mental health. This is counter productive. The body and mind are neither one nor are they two. Their is an interrelationship between the two. You can only find what this interrelationship is by noticing what you do and how you respond under various conditions. What you do and how you respond is a learning curve. Everything is new and things you could once do easily now requires much thought.
Fibromyalgia is a diagnosis given to a set of symptoms. To handle Fibromyalgia well requires self study. It requires learning to be sensitive to yourself. In particular learning to stop what you are doing and start again. It is about being miserable on occasion and not infect the people around you with the misery you feel.
A useful tool to help to become more sensitive to yourself and to give yourself some much needed exercise is walking meditation. There is a good youtube video on this.
I find your reply quite condescending and mental health being counter productive????? Please explain.
I know fibromyalgia is diagnosed given to a set of symptoms, hence being diagnosed with Fibromyalgia via MSK.
I do not infect people around me THANK YOU!!!!!!
The much needed exercise/moving ie walking - keep your comment to yourself. My much needed exercise/moving is actually walking but I have recently had both of my knees replaced.
Hi I have Fibromyalgia, IBS, severe depression and anxiety, diabetes and hearing loss. I too find it hard when people think you are lazy. My mum said after my second husband had just died of cancer after a 5 years battle which included open heart surgery and having a pacemaker fitted, why aren’t you working. I divorced my first husband for unreasonable behaviour but he also committed adultery. She has been married to my father for 54 years and still lives in my childhood home, 49 years. She is a retired nurse and can’t understand that my mental health has been decimated by fighting to keep my job in Recruitment in HR. They made me resign in the end and I had to sign a compromise agreement even though they knew my husband was terminally ill. I went from working for the local council to the private sector and that’s when I finally got my Fibromyalgia diagnosis from the Rheumatologist. I had heard of it but couldn’t understand what it really meant. He said I was hypermobile which I had to google. When I joined Curves, a ladies only gym with no mirrors or intimidating men pumping iron, the gym instructor said “You look really well” they haven’t got a clue. You can’t see joint pain, insomnia, depression or anxiety. They just don’t get it until I met a lady with ME. She said she used to go to the gym on her mobility scooter. Then as she got stronger she walked with her sticks. She said she goes to bed at 5.30 pm so she can still function. So glad I met her. I developed agoraphobia and couldn’t leave the house except to go to the doctors and eventually I was given the help our needed to recover my mental health but every day is a struggle. You must put yourself first and try to function as much as you can. Just getting out of bed when you haven’t slept is a challenge on bad days. Flare ups are horrendous and people can’t see them. Forget about them and concentrate on yourself. We are all Fibro warriors and we share your pain, we understand and we can support each as best we can. Take care xx
I did not know that you have had both of your knees replaced.
I clearly have hit a nerve. I cannot explain, because I do not know which bit of what I said you took issue with.
Mental health is like a flowing river. The river knows where it needs to go. It responds to the local landscape. Build an artificial landscape will modify what the river will do. This can have consequences that may not be helpful.
You say: "I do not infect people around me ..." You are probably too angry to understand what I meant at the present time. Dwell on it, think about it. Our responses to the way we feel effect the people around us and others.
I do not believe in exercising. I believe in moving. Moving changes mental health for the better. We feel our emotions in the body. We react to the emotions in the body with our head. To change emotions we must move.
The nerve endings in the fascia provide the inputs into the brain that generate emotion and feeling. The nerve endings provide response to the state of the fascia. Change the state of the fascia by moving changes what the brain receives.
Certain inputs based on certain fascial states can produce bad mental health. You can change those fascial states by moving.
Breathing and sleep has also an input with respect to mental health.
In the long run my previous reply has moved things forward. In the short term it appears to have produced a different response than intended.
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