Struggling with Support from family and friends

This week has been very tough. Stressed out to the max also.

I've been so angry , upset and stressed its started to show up at work which has resulted negative comments from my manager.

I feel like the doctor 10 days ago said right you have fibro thats all so goodbye. I'm scared about going to my GP as I don't think he will understand what pain am in ( even though I've been telling him for 5 years before the diagnosis)

The stress has made me more tired this week and I can't even get enough energy to take a long boot off.

Not been able to get hold of the support group hasn't helped me either.

My family are like and? what do you want us to do about it. Its affecting my relationship with my long term boyfriend too , steadily noticed that getting intimate isn't as easy as it was 3 years ago as I am in constant pain.

Just feel so lonely and ashamed.

5 Replies

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  • I totally understand how you feel,but please don't ever feel ashamed,you have nothing to feel ashamed about,thankfully you have found this community which is an absolute lifeline especially when you are feeling so low,you are not alone we are all here at one time or another Is there any chance you can see another Doctor??? it's so important to have a G/P who cares and understands,you should never be left in pain,are you on any medication? It is so difficult for friends and loved ones to understand,it's not just Fibro that is misunderstood, i have asthma and my partner doesn't get it either,i can be having an attack and he doesn't even get up to help me whilst i am struggling to breathe!!! Unless people have experienced what we go through it's sometimes very hard for them to sympathise,try not to take it personally it's sadly human nature!! I think being unable to enjoy a full intimate relationship can be very soul destroying,We are all here for you to offer help and support so please don't hesitate to message me or anyone else if you need us!! Remember you are not alone Take care Gentle Hugs sent your way Love Della xxx

  • why feel ashamed sit your fell and boyfriend down but not same time and explain how it is and how much pain you are in and how extremly fatigued you are becoming.dont say tired .to them this is normal.

    fatigued i would say as i say to my family who dont get it..

    im lucky i live with a guy who has same illness so i dont get that off him.but my ex hubby didnt understand .i even put up posters and gave some to family and friends.

    i would ask your fella to maybe attend one support group with you to get him to understand exactly what its like living with this day in and day out.i do feel for you been there for 16 years and couldnt handle it.

    i tend to give my family a get out clause now.meaning i only see them when i wanna.negative people drain you.

    have you tried sitting your manager down and explaining,do you not have a union rep ?there must be someone at work that can help you out?

    your fella must love you so hes prob scared and confused by the change in the relationship.he doesnt understand hes worried he knows theres changes to you.

    go back to your doctor and maybe ask to see someone else and explain that you need some support,pain relief and understand and maybe even some c.b.t or counselling to help you through it all.

    theres no shame in this and no shame asking.you must put you and you first then fella and family.

    im sorry if im not helping but been there and you make yourself worse otherwise.x

  • Hi, I know how you feel. Im 24 and still getting my head around it.

    It is hard to explain to the family how you are feeling as I have the same problem when I have flare up's. I have times where it gets to much for me, so I usually feel better once I have it out of my system. Me I cry about it. And I speak to my brother as he is more understanding sometimes, or I speak to my really good friends and she ends up making me laugh so I don't feel so bad. Do you have a friend you can talk to? I find it really handy.

    I think Sammy and Della are right you need to find a doctor that understands more! I have seen two doctors at my place and there more understanding then others. It had taken 10 years for me to be diagnosed I went to the hospital to see someone and he told me I have fibro and hyper-mobility and then discharged me and gave me two small books on it. So when I got home I did some research on fibromyalgia. I did look for a support group for myself but unfortunately that page was from 2007.

    I have found if I try and stay calm and not get stressed I don't have many flare ups. Though I can get them if I walk to far as I suffer from pains in my hips and knees, so for example I went to a girls group on Saturday, and because it was a nice day we went into town and I had a walked around but later started to feel some pain in my hips and we were going to asda as my youth worker needed some shopping, so I used one of there mobility scooters as if I had pushed myself to much I'd be house bound for 3-5 days. So you just need to know your limitations.

    Are you on any medication?

    Hope this information helps you :D

  • When you are going through bad spells it is very easy to get very low. You start to worry that things will never get any better and the thought of living like this is just awful. I have just come out of a spell like that, I too went to the GP looking for answers yet I knew deep down that apart from pain killers there is nothing else they can offer me. It seemed to last forever, and I cried and just wanted to give up. I didn't though, and I just took it easy, I didn't push myself because I have learnt that doesn't help. Then the bad spell went, almost overnight with no explanation. The pain is still there but I can live with that. It's the exhaustion, the feeling like you have flu and the constant headache and shivers that make life intolerable. Just know you are not alone, there are hundreds of thousands of us that go through this. I have had this for four years now, you have to learn how to pace yourself and recognise that these bad spells will pass. Be kind and understanding to yourself, don't try what you know will make you ill. Acceptance is the key to control. Good luck. .

  • It can be difficult to get people to understand how you feel. My partner left me, labelling me lazy. My boss is concerned because on bad days things can be so difficult, feeling all I want to do is sleep. But you have to be good to YOU. I am lucky - my autistic son is my inspiration and he keeps me going. Realise you are not alone. Take the meds prescribed to you, don't be a martyr and accept the help on offer. With time the bad will pass and you will be stronger.

    Keep smiling!

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