My mam is not getting this at all she said to her it seems I have a bad day when it suits me, my brother got married last weekend and it has taken me all week to recover to her that means I'm playing on it (which I'm not) I have tried to explain bit she now wants to speak to the nurses at work (bupa) to see what they say she said she doesn't want to hurt me and I believe her I just don't understand why my word isn't enough she gave me a hard time for missing my sons football today which was hard enough I don't know what to do
I've spent my day trying to get my mu... - Fibromyalgia Acti...
Fibromyalgia Action UK
hi Nala, it can be very hard for family and friends to understand fibromyalgia.
normally, if you email firstname.lastname@example.org she will send you some useful info to share with them, but she's away at the moment.
if you click on the yellow butterfly, at the top right corner of this page, it will take you to our parent site where you should find more information.
I'm posting the link below for the "spoon theory" which people have said helps explain some things
welcome to our friendly forum. Please feel free to ask any questions you have (we're not medically trained, but we all have fibro,) chat, share your thoughts, or just join in our silly, fun, moments.
Hi thank you she has read up on it just don't think she believes I have it and is telling me not to let it takeover in trying my best I sent her a linkji was sent on here for my partner but still to no avail I will try this one thank you xx
Hi Nala what a shame that she does not support you, I think some people believe if they are in denial it will go away, they cant handle you being sick. I have friends who "dont get it" with me and say simalar things like dont let it control you! oh if they only knew you have no say it does try and control you! I wish you well. ps I too will crash after having a big day, and spend the next day in bed.
I am so sorry to read that all of your efforts were unsuccessful and I was wondering if your mum does speak to the nurses at work and they tell her you do have Fibro, how do you think she will react? Do you think that she is in denial as she loves you so much?
I cannot begin to understand how you must be feeling at this time? I can imagine that you are very upset? It may be for the best to arrange a meeting between your mum and the nurses at work? Or better still, take her with you when you see your GP again?
I want to wish you all the best of luck with this.
All my hopes and dreams for you
Thanks ken I have been very upset by this she said she doesn't think it's as bad as I say even though she read up on it if she doesn't get any better after speaking to the nurses then I will ask her to come to the go with me xx
I'm so sorry to hear you're having so much trouble with family. I did find a site which has info for families called the princess in the tower. The fibro action site is also good.
I hope your mum soon realises that you do have it and it is this bad!
Hi Napa, I I can't find the princess in the tower, when I put it in Google all I see is referring to royalty. Do have the actual full website address please as I have very similar probs with family and some friends. Thanks.
This is abuse and you need to protect yourself. You need to consider that your mum might never get it.
My mother could never get why I was able to go to my son's school play but not clean the house so I must be a lazy ***.
Keep strong and gentle hugs.
Hi Nala,I sympathise so much with you.I know so many people who have this problem,myself included.These so called 'invisible' illnessess can cause so many problems in relationships.I have 4 of these conditions,but Fibromyalgia is not one of them.My next door neighbours sister rings her every day to see how she is and never fails to berate her for feeling the way she does,and is constantly telling her to 'pull herself together'.Please take your mother to your next GP visit as you need the support of good family/friends to support you.Good Luck and please let us know how it all goes.<3
most people dont understand what fibro is go to a fibro page which explains the illness , print it out and give it to your mum, tell her your not faking it , and you need her help and support not her stressing you out which makes the illness worse
if needed take her along on your next visit to the doctors and let him have a word
or set up a nurse visit for you mum
once she understands how seriouse the illness is and how hard it is to cope and the exhaustion you feel she will be right behind you
You definitely need to take your mum to your next hospital appointment. Are you being seen by a rheumatologist or neurologist? If not, take her to see your GP. Hopefully he/she will be able to explain what this illness is and what support you need.
You take care
My Hubby. son and Daughter are great about fibro and are always willing to listen when I explain things.
So it came as a bolt from the blue when talking to my daughter on the phone.that she came out with the statement that. ` A friend of a friends mom used to have fibro and could not even get out of bed. then her doctor gave he a new tablet and now she is back at work . Completely cured"
I felt like yelling down the phone "oh no not you as well." After explaining that there is no cure but that a lot of times other illnesses that have simelor symptoms are misdiagnosed as fibro I asked her to get the name of the tablet. so that I could look into it.
I am not mad at her. She just wants to see me well again and I some times wonder if that is what lies behind the problem in some cases, That our loved ones are in denial and cant accept. Not always but sometimes.
Oh and I never did get the name of that tablet .
Hugs to you and I hope that you and your mom can soon find peace between you. sue xxx
I have a daughter who is fortunate in that she is rarely ill. She thinks if you take a tablet you will be well again as this works for her. She has begrudgingly accepted I have fibro, (as well as other conditions) but thinks if I have positive thoughts I will beat it.
It is hard to get her to understand that if that was all I had to do I would be cured overnight. We do not think ourselves into this condition and whilst positive thinking can help some days in some ways, it is not a cure all.
When I can't go to a particular function or I'm in bed after an active day she thinks I'm attention seeking.
She is also scathing about fibro fog, believing it as an excuse not to do something or I was not listening properly.
Fortunately I have an understanding husband who backs me up, also a son who although he doesn't fully understand fibro is supportive, (although that could be sibling rivalry!)
It could be that your mum is scared about your future, perhaps thinking you will deteriorate over the coming years. She could be in denial because she feels helpless. When you were little and unwell she could give you cuddles and medicine, maybe a plaster on grazed knees, ointment on insect bites, all things to take away the hurt. It is a hard lesson when your child is ill and you can do nothing about it,
I accept my daughter's outlook on life, that's what works for her. At her age I probably had the same ideas. I just need to wait until the penny drops!
I totally understand what you are saying. I was diagnosed with Fibro 14 years ago. I have tried explaining to my mum but she also does not get it. She used to ring me up and say, "are you tired today?" really sarcastically. I used to get really upset, infact I still do. A few months ago she was talking to someone who lives near her who also has Fibro and she was telling my mum how she suffers with it and the things she has to do. I could not believe it when my mum rang me and said, "I know you really are poorly now because Carol said she is the same".
So for 14 years she has been thinking I was putting it on. She would rather believe a relative stranger than her own daughter. Now I just try not to let her bother me. I have a husband and daughter who love me and if my mum wants to be like that I just let her get on with it.
Thank you all so much for your support i am hoping the nurses explain it to her today if not I will be going to gp with her because as you say the stress makes not worse I feel completely drained trying to get people to understand I will keep you all posted on how it goes hugs to you all and thank you again xx
According to my Mum (who died 4 years ago at the age of 97) all you have to do is brush your hair, put your make up and lipstick on, wear smart clothes and don't forget your jewellery, and you'll feel much better and enjoy the day! She followed this routine until the day she died, and got cross when I suffered bouts of depression, which I have now found out were probably because of the Fibromyalgia, but it hadn't been 'discovered' back then. Sorry to say this but I never found a way to change her views. I think she saw me as a disappointment even though I worked full time for 52 years and had a successful recruitment company. My Dad understood and was as helpful as he could be, and my husband is understanding and does his bit. I loved my Mum but don't miss her and now feel much freer to be myself. I definitely think it would be a good idea for you to have a chat with your GP about this and will be prepared to explain things to your Mum, read her the riot act, and tell her she is not helping you with her attitude. Good luck!
My mum found it very hard to accept fibromyalgia. Even though she went with me to every appointment and helped me with a difficult battle to get diagnosed (back when I was a teen). The full scope of the diagnosis was hard for her to take in. I spent a long time feeling she was ashamed of me because I wasn't 'perfect' and she hated it when I bought a walking stick for occasional use in my early twenties. A few years later she willingly admitted that it was the best thing I ever bought because it enabled me to do things that were otherwise too tiring/painful.
Zoom forward a good number of years, I am used to managing my fibro myself and generally avoiding sharing the finer details with others. My partner understands, and has looked stuff up on the internet trying to know how to help, my parents know a lot more about my symptoms than I ever used to let on - and my mum is proud of how I manage my symptoms and my life with fibro. It just took a while for me to feel able to share, and them to understand it. My dad, bless him, is always sharing things he's seen people paste on facebook which is the latest 'miracle cure'. My mum now encourages me to pace myself more and tells me off for overdoing it. If anyone has a great way to explain things to very young children I'd be greatful - my daughter doesn't understand (naturally, she's 3) and I sometimes feel like the worst parent in the world, but we'll find a way round it.
The hardest thing in the world is accepting and understanding the fibro diagnosis for yourself. For family and friends its much harder, because they can't feel it and because every fibro person is different and because it can be so up and down each day. I hope she begins to understand things a bit more soon, but as someone has already said - protect yourself and be confident that only you can know exactly what problems you face each day - and others will just have to either accept it or not - we can't make people believe us, sadly
gentle fibro hugs to you
Hi Nala, I am so sorry that you are being hurt and disbelieved like this, it just makes you feel a hundred times worse when you have to deal with this attitude on top of everthing else. I have found that lessening/stopping the time spent in the company of such people helps me deal with it easier, as well as using a sense of humour to get my point across. Whatever way you choose to cope I wish you luck and hope your mum grasps the situation.
Thank you all for your kind words I am going to take mam to next appointment and jut try my best I am utterly exhausted now xx
Hi Nala, my mum was the same but not for the reasons mentioned above.She is a drama queen and she hates it when anyone else is the centre of attention so she didn't believe me at first then she started asking me what my symptoms were because she thought that she had the 4 invisible illnesses I have [one of which is fibro]. Is your Mum a dram queen?
Can you have her read up on it? People just don't understand how we look okay but at the same time are suffering. Sweetheart I pray you can get through to her. I guess it's hard to understand when I don't understand myself. It's a terrible disease to have. I just wonder what causes it. I hope she'll be compassionate towards you as the stress is bad for you to. xxx Mitzi
Your post struck a chord.
Wishing younger resilience you need to smile though.
People don't understand try this
approach after explaining your
pain and symptoms, ask why
would anyone want to say this
Is how they feel and live! I'm not
sure it will help but it has worked
for me. Don't feel guilty if you
Could of course you would go
to your sons game. I also have
misses some of my sons games
or events. My son understood
because he saw my pain. You
can't change people, just do
what's best for you. Hope this
helps your not alone. xxxoox
I'm so sorry that your Mam doesn't get it. My Mam and elder sister would be exactly the same. I haven't even told them that I've recently been diagnosed with Fibro. In some ways I think it's because they are just from a different generation who had to just suck it up and get on with it and they think that we have to too easy nowadays. Easier said than done, but you need to try and not let what your Mam says get to you. Like you say, I don't think she means to hurt you, she probably thinks she's helping in some strange way by encouraging you to do more. I saw this great magnet the other day that said "if you're coming to see us, come round anytime. If you're coming to check on the state of my house, make an appointment". Fibro is such a relatively new condition that it's hard for a lot of people to get their head's around. Some of it is ignorance as they don't understand it and how you can do the "fun" stuff like school plays etc but can't do the "chores" and if they can't understand it, then it can't be real. I hope that the Bupa nurses are able to set her straight but you need to prepare yourself that there may be a part of her that will always think that you play on it when it suits you. I'm sorry that your going through such a difficult time and hope it improves for you soon.
Oh Nala! It's a swine.
I was tackled by mum again yesterday.....'I think your work is stressing you out'. Which was a bit nicer than earlier hints about me play acting and being conveniently ill when I did not like something. I'll go with the stress of not 'liking something' can aggravate symptoms and suck up energy, and very quickly, but as for the rest of it they have no idea. This thing doesn't take much to change up or down a gear. Whilst I have some success in delivering info about the technical/medical aspects of my condition, the roller coaster symptoms and sudden fatigue are a no go area. We just have to keep on learning how to convey, toughen up and say it the way it is. The tears I have cried for not being believed in conjunction with the daily scares and games this thing delivers. I have concluded that the only way I can cope is along the lines of, 'Forgive them for they know not what they say.' And I ain't religious! So the best thing I feel I can say to you is be strong, straight to the point and lovingly assertive. They can't help not being able to see our disease as much as we cannot help not being able to concretely prove it. Good luck and so glad to see the great responses to this universal FM dilemma..probably the worst aspect. And thanks for sharing so we can get it off our chests (again) too:)xox
Thank you everyone for your support and advice Ive not been online as ran out of data lol I am slowly but surely getting there with my mam I really do appreciate your support :-£ xx