Just diagnosed....alot to take in

[Audigirl]

Hi everyone,
I have just had my diagnosis and finding it very difficult to cope with. I have gone from an active person to what feels like a shell of myself. It's been a long and very tiring journey and I am not sure what to make of everything. I have been in chronic pain and experiencing bouts of extreme tiredness. Some days I can barely walk and feel like I can't cope anymore. My relationship has suffered although I have to say my partner has been fantastic since he has been reading information on fybromyalgia. I just wonder why so many people don't understand how dibilitating and difficult this condition is. I have been told now that emphasis should be on learning to live with it, but if I am honest I am not sure I want too. I am desperately trying to make sense of things and stay positive.... I would be grateful for any pointers from this wonderful community x

 

[sunkacola]

Hi Audigirl, and welcome to the forum.

What anyone feels they can live with or not is a deeply personal thing, and I feel strongly that each person has the right to decide that for themselves. Dying on purpose has a lot of ramifications, however, and needs to be very carefully considered, including all of the effects it will have on those who are left here. Fibromyalgia is a debilitating thing, but you can, if you are willing to put in the effort, learn to live a good life in spite of having fibro. Most people on this forum are doing that, including myself.

My life is not what it used to be. But no one's life is what it used to be. Things change all of the time. It's the only thing you really can count on - that things will never stay the same. That's life. How it changes is not in your control, but there are things you can do that may very well have an influence on how you are living, in a positive direction. I wrote a post on that, and it's linked below.

Millions of people have to face a life that changes in a moment from one thing to another, without warning. Other millions face a life that changes more gradually, but in a way they don't want and over which they have no control. There are thousands of different ways this can happen. I always encourage people to find their inner strength and courage when faced with this. That's what I have done, and done over and over in my life. Now, just because I've done it doesn't mean that everyone can do it or will even want to, and this is your life and your choice. But it can be done.

If you have a supportive partner, you are more fortunate than you can possibly imagine, because those of us who do not would give almost anything to have that.
If you have a place to live and clean water to drink and enough food and any money at all to spend you are among the 5% of most fortunate people on the planet.


Why don't more people understand how difficult it is? Because they've never had any experience like it, and people really only understand something if there is a way they can relate to it either through their own experience or that of someone close to them. And, too, people don't like even to be near another person's tragedy or illness or disability. They don't literally think it could rub off on them, but if they really face it they might have to face the fact that it could happen to them, and most people are not willing even to think about that let alone deal with it.

You can find the strength to live a good life even with fibromyalgia, and we are here to support you if that is what you want to do. Read my post and consider trying out some experimentation to find out what will help you.
We are here for you, you are not alone.

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

 

[Audigirl]

Thankyou for your kind words, I guess I am still trying to come to terms with everything. I have put myself forward for counselling in a bid to manage things better hopefully and try and get things under control. The awareness for this condition is lacking and you are right, unless you live with it you have little understanding. The amazing thing is I spent 30 years of my life caring for others. I am going to try the following mantra..... okay, I am in alot of pain today, so what can I do to make it better? Swim for 30 mins maybe . I do still go to work although this is becoming more and more of a struggle even though I have changed job roles. I think I will look at the external factors in life and try to sort them one by one to make them more manageable, I just get so frustrated with myself. I guess it's a bit like a grieving process? I look forward to my journey with you all and God bless you. X

 

[sunkacola]

It's a lot like a grieving process, because in fact you are grieving the loss of your life as it was before. An important thing is to be kind to yourself. When you start getting frustrated with yourself, think about how you would speak to one of the people you spent 30 years taking care of. You'd probably say gentle things, reminding them of the progress they have made, and that it is OK to be the way they are. If you speak to yourself the way you would another person, or a child, or a beloved pet, it will help. You are as deserving of that kindness and respect as anyone else, so be kind to yourself.

One thing I did at first was I made sure that every single day, no matter what, I accomplished something. Even if it were something very small, I did it. And then I praised myself for getting it done. Sounds silly, maybe, but again think of how you'd treat someone else. At first it seemed ridiculous to me, but it really helped so I kept doing it. If you are working, praise yourself for having gone to work and done a good job today. The kinder you can be to yourself the better you are likely to feel.

Make sure if you get a therapist that they are a person who is kind to you and doesn't push you on any level.

 

[JayCS]

I am in alot of pain today, so what can I do to make it better? Swim for 30 mins maybe . I do still go to work although this is becoming more and more of a struggle even though I have changed job roles

Sounds like you're already doing well with your new life, and sunkacola's recommendations will help improve that even more.
Swimming for 30 mins can well greatly increase your pain, esp. if your pain is overall from overdoing it. If at all very gentle, slow swimming in water which doesn't cause problems from the temperature and "additives" (chlorine, salt, air, sun). Starting low and going slow is something we have to re-train ourselves to do if we come from a very active lifestyle and personality. If I have to push thru what helps me for many symptoms even at night is a quick cold shower (30 seconds).
On the other hand for more localized pains which might need stretching, back / tendon exercising, temperature challenges, I can imagine swimming helping.
Personally from swimming I'd get skin problems for hours to a day after 20 mins at the latest, even if I still had the energy. I'd love it and could do it, but it'd now lead to overexertion with at least a day to week of post exertional malaise, i.e. severe Ache from overdoing it, probably also nausea, headache and sinus problems, maybe histamine problems, maybe something else. And overdoing it/PEM can be like the shoots or snakes in the game snakes/chutes and ladders, as I just heard a doc (Dr. Lapp) describe it very well - I'll be testing that image in future - I spose I try to avoid the snakes/chutes and keep in the medium area without overtaxing the ladders, which often turn into chutes.

 

[sunkacola]

I think it's a good idea to try anything that you think might help, including swimming for a half hour if you think that's a good idea. It may help or not, but don't be afraid to try it. Don't be afraid to try anything that comes to you, but while you are doing that train yourself to pay very close attention to your body. If you do that, you can notice the first little twinge, or even the shift of your energy that comes before that physical twinge, and you can stop right that moment. By doing that, you learn what is possible and what is not, what helps and what does not.
Just make sure that you listen closely to what your body is saying, and never ignore it or think "oh, I could do one more lap". Stop as soon as your body tells you it's getting tired or stressed. You won't know what increases your pain and what helps unless you do your own experimentation, and no one else can tell you what those things will be. You have to, carefully, find out for yourself.