Hi all, I have been diagnosed with FM about a month ago. I was wondering if any of you have experienced problems with your partner or family understanding your condition and if any of you have found any solutions. I'm far away from my family and friends and just with my partner who doesn't seem to understand how Im feeling even though I've sent him information to read and spoken to him about it. I've just returned to work this week after being off for sometime with anxiety and I'm feeling exhausted, dizzy and my back is hurting. I could really use more support in terms of understanding how I feel. I'm trying to get on with things this morning (household chores) but hes just called me lazy and said 'anything to get out of work'. I feel so disrespected and hurt.
Support for FM: Hi all, I have been... - Fibromyalgia Acti...
Support for FM
Hi, I got diagnosed back in July with having fibromyalgia with having suffered with it for many years also other health problems I had to give up my job as I am a dog groomer it was to strenuous for me to keep doing I am very lucky with my partner who totally understands how this illness effects me he has never once called me lazy I anything it upsets him that I have this condition and his support is emense how long have you been with your partner for ? And I can only advise this illness doesn't get any better you can try and control it t best way that you can plus you will still be in shock from being diagnosed with it as I am this is a brilliant group and we can offer you lots of support to you sending you big hugs Kel xxxx
Thanks for your message and kind words. I've been with my partner for 9 years. He is quite lacking in empathy generally which is hard as I'm.a sensitive, empathetic person. I dont understand where the insults come from since I try so hard and feel I do my share of the housework despite this condition which drains me. I guess it's because he grew up in a household where his mother did everything. But there are times where I am so tired and start an activity and have to stop, which he doesnt understand.
Sorry to hear that your partner fails to understand your problems. My wife from memory was diagnosed about 5 years ago. I read all the information from the hospital etc and made what I thought was a great effort to understand. I have a number of conditions so I can understand pain, I have sciatica so I can understand nerve pain the horrible tingling etc. To cut a long story short early this year I was diagnosed myself. I had been showing symptoms for a couple of years. I think that it is only when you experience fibromyalgia that you gain any true understanding. The fog the fatigue , the dizzy spells and of course the sensitivity to light and noise. I could go on but the only way anyone will understand is to have it themselves. But I would not wish that on my worst enemy.
The nerve pain was one of my first symptoms and I can only imagine how you must feel with sciatica. Nerve pain for me is hard although I think Pregabalin may helping, fingers crossed. I dont know where I'd be without my hot water bottle, it's so helpful for pain for me.
Your wife is very lucky to have your support and thank you for your kind message.
Yes I understand how you feel, I have many medical issues and FM is at the top of my list due to the pain I am in, When my partner complains about me, it makes me feel angry and worthless and I hear those words every day. When he talks to me, he pokes me a lot and it hurts, he has done it so much that when he speaks to me Immeadetley I pull back as fast as I can because it hurts and he says, oh stop! that doesn't hurt you and I say I have FM and it hurts bad when you poke me and he responds yea ok whatever FM he acts like it doesn't even exist he has never come out and said I was lazy only if I would get up and exercise I would feel better and thats what's wrong with me. I used to run 5 miles a day, and swim the river every other day and do aerobics every other day besides working 2 jobs, cooking cleaning laundry, very active with friends, etc. like anyone would ever choose this disease, It is so debilitating, it robs you of everything that resembles life, liberty and happiness no one in their right mind would ever claim to have FM if they didn't. So yes I understand what you are going thru and I am so sorry you are experiencing that from your partner, it's bad enough when we experience it from the entire medical community, family, and friends, so ce here and share with this community where no one JUDGES you or tries to make you feel bad just for being ill .
This is abuse. The constant denigration added to the poking is emotional assault. There is help available, but you will need to feel strong enough to report it to your GP and the police.
Totally agree with you Midori. How can anyone put up with this kind of abuse whilst suffering constant pain.....I do hope that this person can get the strength and courage to tell her partner to sod off!
It's hard on partners too. I thought my other half didn't understand, then when he had two heart attacks and was also diagnosed with GCA/PMR I realised what I was feeling then is probably what he felt about me. I felt totally inadequate and unable to do anything to help and became frustrated and this probably manifested in being short with him. This insight has helped us understand how hard it is to start communicating feelings etc.
Men are generally not able to put it into words as it may be a sign of weakness. I know you have tried to get him to read about it. There are many books out there and information on HU and other fibro leaflets and booklets available. Suggest you don't thrust them at him and say read this but just leave them out and you never know he may pick one up and secretly read it and begin to understand what you are going through.
Be gentle with him as he is grieving too for the person you were whilst trying to get to grips with the person you are now, he will have all sorts of emotions. Perhaps you could invite him to attend any appointments you may have so that he can ask questions. It's early days for you both in the fibro journey and I hope you can get through this sticky patch, which to be honest, happens in most relationships with or without health issues to contend with. Good luck hope it all works out for you both.
I know that is exacatly what is going on he is angry, our lives are gone, I am not the person I used to be and it seems like every day I get a little worse than the day before, I catch him saying things like there is no way a person can be hurting in their right foot, headache, neck pain, nausea, RLS and the next day back is hurting, TMJ, diarrhea, muscle spasms, choking, exhausted, hurting all over, etc, etc, and just never stops he says its humanly impossible I tell him, it's not because I suffer every day along with million others out there who is going thru the same thing It's like I came down with the flu and never got rid of it, He wants our lives back and I keep telling him there is no going back, that person is gone forever, it has taken e along time to accept it, this is my life I didn't choose it , it chose me and I am doing the best I can
So true...unfortunately!
Hi
I really feel for you. I'm very lucky to have such a great support network and all of you on here. Could you show your partner some of the posts in here then he might not be so quick to criticize. Sending love and lots if healing hugs your way. Love and hugs Lynne xxxx
Hi Panda,
It is easy for folk to misunderstand just how bad we feel. Fibro is currently the condition which many like to denigrate as 'Whinging and imaginary', just as M.E/CFS has been in the past.
It is due to general ignorance, both by GPs and the general populace, not helped by the term used for many disabled folk of 'scrounger'.
It will get better, there is information out there. Have you read the NHS's info on Fibro? If your partner has read it and is still being nasty, he could be gaslighting you. It is a form of mental abuse often used by controlling people.
If it is intolerable see your GP and get help. I am not sure what is out there in the way of help for abused folk nowadays; there was little when I was in the same position, but I know there is more now.
Hi Midori, thanks for your message. I sent him the NHS information in a msg a while back. I asked him yesterday if he had read it and he said no. I'm not sure why. As I recall it was an easy to understand short read.
because, I think, he would prefer to remain as he is and not be educated in what is wrong with you....it suits him. Some people are like this...they don't want to change, it is too hard....much easier to berate and be nasty than to show compassion and understanding.
I think you may be right. Thanks for the message.
Oh Panda,I am so sorry that you are having to go through this. Fibro is bad enough without being mocked and ridiculed. And actually he is abusing you with the poking,I can only imagine how much you must hurt,emotionally as well as physically. He needs to go along with you to your GP and be told how fibro affects people. I am hoping for your sake that he has some redeeming quality as I would be smashing something over his head if he poked me! Seriously though,you need to get some support from someone,a friend or someone at the hospital or doctors surgery who can explain to him how much he is putting you under mental and physical stress. Xx
Hi Kate, thanks for your message. It was a different person who wrote about being poked.
My apologies, I hope whoever is being poked finds the strength to get out of the way of the nasty man! Even though you’re not being poked I can only suggest that you try and show him some of the posts on here. And point out that some people who are suffering from the hell that is fibro deserve respect and empathy from their family and partner as it’s all too hard to find in the wider community. Take care of yourself. Xx
Get him to read The Spoons
arizonapain.com/fibromyalgi...
It explains it in everyday simple terms and really gets the message across.
Good luck.
Hi, thanks so much for this. I have just read it and it makes so much sense.
Bless you hunny because its an invisible illness he doesnt see it its same of most people unfortunatly sending hugs hun xxxxx you ll get loads of support on here these people fibro warriors are amazing xxxx
How much help around the house and grocery shopping does be do??does he put his laundry in the machine, does he eat some of your shopping,does he cook any??sounds like lazy is being pointed at the wrong person..
Keep an eye on his reactions, Panda; gaslighting is insidious, it gets worse over time, until you feel too ground down to escape.
Does he control your money, constantly make you feel bad about yourself, expect you to look good for him all the time, complain about things left undone?
It progresses to tantrums, isolating you from family and friends, constantly undermining your confidence, and eventually, active violence.
I am speaking from experience. My husband was a driven workaholic, and expected me to be 100% ready at all times for him to bring somebody home unexpectedly for dinner, to sleep over, and other things. On the face of it it, it wasn't too unreasonable, but it didn't allow me any life of my own, and the two children were suffering too, as they had to be quiet when visitors were at home. I could never relax.
He used to drink too, and wasn't above throwing full plates of food at me if they didn't please him. On more than one occasion he wrecked a room if he found something out of place. I was assaulted many times, and going to work with a black eye as a nurse was not well received, I was also raped.
Eventually, we escaped, and went to Womens' Aid, where I stayed for 6 weeks.
Finally, he committed suicide after I told him we would not go back until he had received psychiatric help.
Even in death he tried to control us, he had written to his parents saying our son was not his child (he was), that I was unfaithful and profligate with his money; so they went to the police and accused me of killing him. It all became a bigger nightmare than before.
However, what they didn't know was that, as I had a restraining order, the police accompanied me to the house, and had to break in as all the secondary locks were on (he was also paranoid about security), and found him in bed, dead, with half a litre of whisky, and a new prescription of my antidepressants by his side. He'd found a prescription which I hadn't had filled and got them from the chemist.
After the six months it took to get the Inquest over and done with, I could start to breathe a sigh of guarded relief.
It took nearly 20 years for me to overcome the aftermath of this; there was no support 30 years ago for abused women from anyone; now, thankfully there is.
This is only a small part of my story.
Please don't let it happen to you.
Cheers, Midori
Hi Panda, I am so sorry to hear of your lack of support, I feel very fortunate to have great support from my husband and both of my daughters. I am lucky in the respect that I work from home for my husbands business. If I worked away from the home, I would have had to give up long ago. FMS is such an invisible condition and there are people I have met that are aware of the struggles I face but always seem to say "Oh, you look well" as if they really don't believe that there is anything wrong with me. I hope that you are able to find support close by. I am new to this site and have already found it useful and feel less alone. Look after yourself
So sorry you and the others on here that have commented similar are experiencing this.
Stay strong, you know the truth that is most important, and all of us all do too. All you can do is try your best and offer information for him to educate himself. You can’t make anyone try to understand if they don’t want to. If he doesn’t want to read things maybe a yo tube video of take him to medical appointments, or yes let him read some other peoples experiences on here.
You have to put yourself first and ignore anything like that. Stress will only make you feel worse. If he wants you to feel better he best thing he can do is help you feel relaxed. You can only do what you can do and if that isn’t enough for him, that’s his issue, not yours.
Explain calmly that you are struggling with this new reality and don’t fully understand it yourself either as it’s all still quite new. Unfortunately although it might not seem to make sense it’s the cards you’ve been dealt. You are grieving your old self and life and really need him. You understand it must be hard on him too but you need his support to help you cope with the pain and debilitating nature of this condition as well as the emotional effect it is having.
Try to be positive, you can both learn a new normal for you. Things might be slower etc. But maybe try to find any positives in that you can. Wellbeing and reducing stress is so important.
You or anyone else should not have to suffer either emotional or physical abuse, so make it clear you won’t accept it, don’t deserve it and it can’t continue.
I hope you find things that can help to make it a little easier and you can find some comfort and peace.
Here if you ever want to rant etc. 
I learned that there is actually a psychological phenomenon in people who work in the healthcare field where if they work hard they believe nothing can befall them. My companion had this mind set.
These invincible feelings get projected it seems onto others i.e. if you work hard too nothing will befall you either. To me it sounds like this phenomenon applies to other occupations too.
When I myself worked in healthcare (some years ago) with troublesome patients I was advised a good response was to say “I feel bad I am unable to ... “. “I feel badly I am unable to ... “ .
The one thing I have been recently told is it is a good sign when couples are sharing their feelings together, they are talking. Once that sharing stops a counselor looses confidence.
The well off can afford maids to help get around some of these housekeeping issues. As for maid-less me only a few days ago was I able to vacuum the entire house. I am embarrassed to say how many years this accomplishment has taken me since my companion’s passing.
In a grief group after his death I heard a story about a woman complaining bitterly about her husband’s critique of her work in the kitchen. Another woman overhearing this says “I wish my husband was still alive to complain to her.” I too feel that way now.
I could never change my companion’s mindset but do regret deeply not taking him to a famous medical center for more comprehensive care earlier on, to get care together. There is a world of difference in some healthcare settings, & last I read a world of difference in cost does not often follow.
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