Feel horrible

[Inola]

Hi, I feel like my family and partner don't understand how I feel even when they know other people with fibromyalgia, they keep saying things like you just need to do this and that and you will be fine but I have tried everything and then they say I don't give anything time to work when I give everything at least a month, I feel really down and low and I have no idea how to cope anymore

[Hazel_Angelstar Administrator FMA UK Staff]

hugs .... and sorry you are feeling so low.

I think family and friends sometimes think they are being helpful and supportive ... when in fact, their words and actions are doing the opposite for us xxx

[Midori]

We all get that from well-meaning family and friends, unfortunately. it can be demoralising. I print stuff off from this site to give them, but if they are persistently awful I get angry and ask when they qualified in medicine, because I trust my doctor more than them!

It knocks your confidence when they keep on about it and tell you this , that and the other will cure it, they are trying to help; But you are the one living with your symptoms , not them. Does your GP have you on antidepressants? It may help to ask about them at your next appointment. I don't have antidepressants personally, as I am not depressed about my Fibro I am ANGRY that my body is letting me down. My anger carries me though, although it wouldn't work for everybody.

Also, You may find the Spoon Theory helpful in helping you cope. There is something about it in the Topics section of the site

[Inola in reply to Midori]

Thank you for replying, I know they are trying to help but sometimes it gets to much haha, I'm not depressed about it just angry as you said but yes I'm on amitriptyline to help me sleep

[KnackeredKaty]

I complained for years about my joint pains around my family and didn't get much sympathy. My husband has learned to be tolerant and now I have a diagnosis he and the rest of my family now know that I had/have a genuine condition. I was diagnosed with arthritis at the same time as fibromyalgia. I learned that if your family don't believe you, don't talk to them about it. Stay on this site and we'll support you. Sometimes families are too close to be objective and often try to protect you by dismissing what you say. They don't mean to disregard how you are feeling/suffering they just don't know another way of dealing with your pain and suffering. Try to stay strong, we'll support you. 😁

[waylay]

I've recently let my father back into my life after 3 years of no contact. He finally seems to believe me, which is helpful, but now he's doing research and suggesting all kinds of things: get new people to look at my MRIs so hopefully they can do more surgery, have I heard of implantable spinal stimulators, have I tried swimming, etc.

It's nice that he cares (or whatever a narcissist does that approximates caring), but I've had my chronic pain for a decade now, been at one of the best pain clinics in the country, and in my pre-disability life I was a scientific researcher, so I've researched the hell out of my condition.

I developed chronic pain after surgery for a herniated disc, after which I grew massive amounts of scar tissue, which is wrapped around my spinal and sciatic nerves. There's no way to remove it without a high chance of damaging those nerves (no thanks!), and going in there again would almost certainly result in more scar tissue. All the docs I've consulted have said that further surgery or implantation of a spinal stimulator are not a good option for me, which is the same conclusion I'd come to on my own.

In addition, chronic pain is often perpetuated by central sensitisation, which is a malfunction of the nervous system. It has very little to do with the tissue damage from the original injury, so surgery wouldn't help.

I keep telling him this, but he doesn't listen. Why don't people get it? We're suffering! We've tried everything, including some really weird and silly stuff (just in case). We're desperate to get rid of/lessen the pain. Do they think that something they heard from a friend of a friend, or looked up online in 5 minutes, is a miracle cure we haven't heard of?

ARGH.