Unfortunately as you say, at present there is no cure and I'm sorry to hear that life is so difficult for you.
I'm fortunate that medication helps take the edge off which then allows me to use other pain management tools - pacing, exercise /activity, heat (or cold), mindfulness, meditation, holistic therapies, weighted blankets, cbd, supplements, homeopathic remedy, distraction etc
HiApart from historic fibromyalgia I have historic chronic prostitus, chronic pelvic floor nerve pain & chronic wide spread pain syndrome to add to my medical shopping list.
I hate the way I feel & living with it is a nightmare.
All the medication I've tried just makes me feel like a zombie and so tired.
I absolutely appreciate your words of wisdom. I'm like you and have given up on medication because of the side effects. Everyday is a struggle. Take some comfort from this group of people who do understand. All the best to you.
I'm with you, was diagnosed with Fibro in 2008 but was obviously suffering with symptoms well before that. I've tried all of the standard Fibro meds, Gabapentin, Pregablin, Amytriptyline etc, but had to stop either because of side effects or because they didnt work.
Its a wretched condition because I've found the meds are often worse than the Fibro.
You say you were ‘kind of diagnosed’ with Fibromyalgia in 1996, have you never had a confirmed diagnosis?
I must admit I find your post quite depressing, we all know there is no cure, we all know how painful & debilitating Fibromyalgia is, I have many severe illnesses and don’t have ‘flares’ I have constant daily intense pain, raised children while suffering with it too for over 20 yrs, but we all have to find a way to muddle through and get through another day of pain, as exhausting as it is.
Trying to get help from our Gp’s and various health professionals, but also doing our own research and finding what may help us individually to learn to live with our health problems. Some amazing people on this site often put positive suggestions over what has helped them, so with you being a new member only yesterday, hopefully some of their suggestions may be of help to you.
You say pain clinics don’t work, there are many things that they offer & what works for one doesn’t necessarily work for someone else, so to completely dismiss their work is a bit unfair. As with medication, some things work for some, not others.
I wish you well & hope you can find things to help ease some of your pain. Fibromyalgia is indeed a frustrating debilitating illness to bare, but we have to muddle through somehow & find ways no matter how small to help us.
pain clinic didn’t work for me, I am on 300/day Pregabalin and 100/day Sertraline for my depression some days I am ok but most of the days are a nightmare for me. Unfortunately because of the pain , fatigue and everything else I had to stop working and I feel useless most days. Honestly I have been to the gp so many times that I think they had enough of me. I don’t want to do with myself 😞
They said to me to try water exercises, yoga and stretchings. Any idea if working?
Just a thought but try to give up gluten for a week or so and see how you feel. For me...it's an amazing improvement but as I'm ill-disciplined I find it hard to go gluten free completely.
Did that help your fibromyalgia substantially? I know when I eat certain foods it can make a huge difference to how sluggish my body feels, this is a small example but if I eat digestives or hobnobs I’m doubled up in agony, but if I eat the gluten free version I’m fine🤔
My son tries to eat gluten free if he can, as he notices a huge difference to his well being.
Yes DoubleMalibu, gluten free makes me feel like a different person with far more energy and mojo than I have when eating glutenous foods. As I said, my problem is self discipline. I like my food too much.
Yes I too love my food and a lot of gluten free is an acquired taste unfortunately🥴but I need to try and find some gluten free recipes for making more myself, it’s just lacking energy & finances most of the time.
I completely understand re relationships and how this awful illness impacts them.
I also went through 7yrs of domestic abuse and violence.
I feel the impact of that and a car crash I had years later, possibly resulted in the fibromyalgia.
I’ve had M.E since my teens and I learnt to manage that to raise my children, but fibromyalgia seems to be more gangsta in its impact and difficult to manage.
I will privately message you later if that’s ok?
with you being new, you will find the message on lower tool bar under ‘chat’
I had a call to collect my youngest son, as he wasn’t well.
Hello, does change our lives for sure 😞and yet we fight on and take each day as it comes, I do find home is my comfort zone (especially now it’s cold I’m like yep back foot out and back indoors ) what I find hard is looking forward too doing something and your body dosent play ball ,the events I’ve missed over the years Weddings, special birthday parties etc but I know so many here can relate too that feeling of disappointment and frustration . I get fatigue as I’ve CFS as well , the two conditions can be similar , so feel free too have a good rant ,sending my best wishes I a,m currently tucked up under my Winter quilt with a hot water bottle x
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