First post! Rant, moan, cry!

[FibroMummy]

Hi everyone!
I’m new here, single mum to a 3 yo daughter, 25 years old myself and falling apart!

My diagnose is coming up to 2 years shortly, it took me over a year nearly 2 just to get diagnosed. I’ve been on amitriptyline since the start and now I feel like it’s ran it’s course. I still take two tablets every night consistently, but majority of the time it feels like it’s making no different and I’m forever topping up on painkillers!

My legs randomly go numb, I fell down the stairs last week and twisted my ankle; I just laid there on the floor crying for 5 minutes thinking to myself “why me? I’m meant to be fit and healthy, I’m still young!” My back is always sore and throbbing, feels like it’s snapping in half. Always got headaches, my wrists go numb too. I’m forever tired, never any energy and my iron levels are terrible.

Does anyone have any home remedies or ways to cope? I soak in the bath with deep heat bubble bath, I’ve tried rock salts too.

My daughters dad and I broke up 6 months after having her, this was when majority of my pain started. He doesn’t understand it and thinks I exaggerate my pain and symptoms. How do I explain the realness of the everyday struggles we live with with fibro?

Yours sincerely,
A really tired mum.

 

[sunkacola]

hello FibroMummy, and welcome to the forum. This is a very good place to come for support, encouragement, information and just not to feel alone in this.

I want to address some of the things you said in your post.
You are very strong. I know I don't now you but you are carrying on and raising a three year old and doing it in pain. So, start with that. You are not collapsing, you are being a human being under hard circumstances and being a mummy to boot. This strength you have will take you far in dealing with fibromyalgia.

If the amitriptyline is really not helping, I strongly urge you to stop taking it - with your doctor's supervision, because it's never good to come suddenly off a drug that you have taken for 2 years. You will want to wean yourself off it carefully.
My best advice is don't replace it with another drug.
There are many things you can do that will help you, without resorting to drugs that, in the long run, don't help and often make things worse. Many fibro symptoms are aggravated by the very drugs the doctors give us. Others are addictive, so that's clearly not a good path, and others have bad side effects.

At the bottom I link to my advice post. check it out and see what you can try to get yourself going on a path to feeling better.

One thing I want to say is that "why me" thinking will not only get you nowhere, it will truly damage your ability to cope with this syndrome. There's never an answer to that, anyway. The universe is not punishing you, it doesn't run on a merit system, and things happen to people all the time. While I fully understand feeling frustrated or angry that this is happening to you so young, it is so much better for your health if you don't spend time lingering on those thoughts.

I'm not telling you to just have positive thoughts and you'll feel better because that's bunk. But fibro, as you know, saps your energy terribly. If you waste some of the energy you have saying "why me" and other defeating questions and emotions you will simply have less in order to deal with things.

We all have days when we feel like that, but you will be better off to try not to have them. And if instead you focus on what you can do to help yourself you will feel empowered rather than helpless. This is a big thing. I know, having experienced it. I felt helpless and overwhelmed and frustrated and angry and depressed at first. But information is power, so I started researching and trying out everything to see what helped me. Just the trying alone helped me to not feel helpless, and of course finding things that worked was even better.

As for explaining things to others, ask yourself if that person really needs or deserves an explanation; if you really owe that person an explanation. Anyone who refuses to believe you or puts you down for something you cannot help and would change if you could is not good for you. I personally have removed all such people from my life and am better off for it.

There's whole thread (or more than one) about how to talk to people about this if you choose to. I bet someone here will have a link to that for you.

Focus your energy and thoughts on the fact that there are things you can do to feel better and to cope, and on doing those things. You can do this, and we are here to support you.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[sweetkamie20]

Hello, fibromummy. Given how you feel, what you're managing to do is remarkable.

For others to really understand fibro is a mini miracle so I was happy when they simply accepted my word about the severity of my pain. The thing that actually seems to work is to point out to people that people with FM are 10 times more likely to end their lives. Here's an article that very simply states the fact in paragraph 3 Fibromyalgia comes with a suicide risk: study. There are several others. Most people fear being the straw that breaks the camels back and once they hear that fact they seem to snap out of denial mode. I'd recommend handing your husband some article or quoting the fact to him urging him to think about how much pain someone must be in to do that. Or even an article of someone with FM trying to explain their pain, perhaps a famous person he respects...Furthermore, if you can find a good article explaining the science behind fibro in simple terms, that might help him, too.

Not sure what you believe about the cause of FM but to me it seems best explained as a central nervous disorder. In my experience focusing on calming/improving the central nervous system's performance is most beneficial for pain management. Particularly I supplement my parasympathic system (the "braking system" for pain) and adrenal glands. I avoid loud, over stimulating environments...The less activity in my environment the better!

I use a weighted blanket to calm my nerves. Perhaps a weighted blanket/vest would help you, too! Those could make a big difference! Since you've got a little toddler, I'd encourage you to try the vest first - it would prevent the pain. The blanket helps to ease it but how often can you spend 20 minutes under a blanket? The vests prevent it.

If the journey seems long, do come back and check in. It's tough enough as it is. At least here you have 100% validation of what your life feels like and you'll get more ideas on f what to try next

 

[Auriel]

Hugs for fibromummy welcome to the forum ️ (I get headaches too, daily), I changed my diet and added a bit of exercise too, it helped a bit (avoid people that stress you out intentionally , stress makes it worse)