Hello

[feefee1968]

Hi my name is Fiona and I'm 55 from the UK and New to this. I was diagnosed in November with fibromyalgia and severe chronic fatigue. I've had symptoms for 3 years but my GP surgery messed me about referring me to the wrong clinics. I am so down and depressed with everything, it seems to have been going on for so long and I'm getting no help or advice from anywhere, I hope all of you in this community can help me. Thank you

 

[sunkacola]

hello Fiona, and welcome to the forum. We certainly will help you if we can - that's what we are all here to do, help one another.

It is not only common to be down and depressed about this condition, it is also entirely understandable, and many of us have been there, so we can relate to what you are saying. I can tell you this, though: you can learn to manage this, and empower yourself in that way. And, you are not alone. We may not be there next door to you, but we are here to support you in whatever way we can.

There are many things that you can do to help yourself deal with this, and some of them can even ease your symptoms. I wrote a post about that, with many suggestions of things that you can try. Don't be overwhelmed by it -- you don't need to do everything at once! But I can assure you that if you try some things that might help, and find a few that do, you will not feel so helpless in the face of this. And, not feeling helpless will help you not to be so depressed about it. You do not have to be a victim of fibromyalgia. You can live a good life, even with fibro. I know this, because I wrote the post after going from depressed and helpless feeling to a much better feeling about my life myself.

Many people here will step up to answer questions and to help you if you ask for help.

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

 

[BlueBells]

Hi @feefee1968

Welcome to the forums

I've found just being around people who actually understand from experience makes me feel less alone, it sort of 'normalises' the fibro, by just being able to understand we are not the only one with this.

I've lived with the "it's all in your head/imagination" for so many years, it's a true breath of fresh air on these forums

 

[feefee1968]

Thank you so much for your kind words.

 

[BlueBells]

@feefee1968

Thank you

Something I was told when I joined, adding the @ symbol in front of the user name will alert an individual member if you want to. We all browse around a bit anyway , but I like to share the little hints I've learnt

The main thing is, keep in touch, communicate, and the interaction is how we all support each other. It's a very friendly, understanding and supportive mob (group, community) on here

 

[SBee]

Hello Fiona @feefee1968
Just wanted to say hello as well. I am new here too and have had some great replies already. I know this is going to be a helpful forum.
I totally get the being messed about bit. It seems in my experience there needs to be a lot of elimination tests before fibromyalgia seems the answer. Spending a long, frustrating and exhausting time while looking for an answer is so hard, and feeling down and depressed is a sad but natural response to some. ( me too)
I am hoping to work positively now I have a diagnosis, find as much info as I can to work with this condition. I won't lie, I am not Miss Happy and Optimistic every day, or every hour. But I take a lot of comfort knowing this is not all in my head and others here can identify.

Sorry, I never manage short posts and ramble a bit

 

[feefee1968]

Thank you for all your replies.
I was actually referred to haematology by the GP secretary in September 2022, I found out by my NHS referral letter, the GP denied this for over 6 months even though I had the letter to prove it, eventually I was referred to Rheumatology but then cancelled and then referred again, no apologies or anything from them. I was then diagnosed in November and was also checked for auto immune disease which revealed I did have antibodies in my liver but retest was negative but needs checking yearly. The Rheumatologist said the worse my fatigue is then the worse the fibro flare up. My problem that I would love to know the answer to is how the hell can I control the fatigue. Some days its just tiredness and half an hour nap can make me feel better, if I fight the tiredness then I go so cloudy headed, my eyesight goes sort of blurry but fuzzy. Other days when it's severe tiredness I can lose all strength in my body, I stop completely if I'm outside, I feel really heavy and can't function at all. My male GP said get up and go for a walk when it happens typical man who doesn't believe fibromyalgia exists. Sorry for the long reply but I feel so trapped and no help from anyone. Suppose to of been referred to the fibromyalgia clinic in the hospital but heard nothing yet and been 2 months

 

[Auriel]

Hi feefee, welcome to the forum
️ (I am sorry you experienced this, fibro diagnosing can get dragged out) my first diagnosis of my symptoms were "they were all in my head" and me taking things literally thought the e.r dr meant it was head related (till I realised the meant I was "imagining" it all ) I think it's standard depression is gonna come with this (we're always here if you wanna talk, the fact we're from all over means someone's usually gonna be here) it's a challenging/ very painfull/energy draining condition (and it doesn't help that other people think you look/seem fine, so that must mean you are! No, no, no) we're glad you found us (and we're glad we've found you too)

 

[sunkacola]

My problem that I would love to know the answer to is how the hell can I control the fatigue.

Hi feefee,
The problem with a question like this is that, very unfortunately, there really isn't an answer.
That doesn't mean there's absolutely nothing you can do that might help, but it does mean that no one can tell you, "just do this" and it will help with the fatigue. Most of us experience unreasonable fatigue with fibromyalgia. I know I do, and it is hard to take because I used to be a person with more energy than anyone else I knew.

there are two things I can tell you, and can only hope that it might help.

The first is, the healthier you are overall the better off you will be. this doesn't just mean eating what people think of as a healthy diet, it means eating the most healthy diet for you. Whether this mean more meat, less meat, no sugar, more vegetables, a plant based diet, no gluten, certain grains but not others, ......only you can find that out for yourself and the only way to find out is to experiment. Generally cutting out all processed foods and sugar and alcohol is a very good first step if you haven't already done that. After that, doing your own experimenting with your diet will show you what foods give you more energy and which ones deplete your energy. And of course, doing your best to get enough rest and removing toxic people and circumstances from your life can help as well.

The other thing is hard. It's acceptance. This is something that we all need to come to one way or another because the more we fight against the facts of our diminished levels of energy and the more we hate it and feel bad or sad or guilty or any other negative emotion about it, the more of our energy is being used up with that and that is a waste. Acceptance doesn't mean complacency or giving up or approval, it just means that we accept what is, in this moment. And if that is something we don't like, then we accept that we don't like it.

There's no way to "control" the fatigue. But we can do everything possible.....what is possible to do today, which might be different from yesterday or tomorrow.....to accept it and to take the best possible care of ourselves.

If you haven't read that post of mine yet, I do recommend it. There are a lot of ideas there to get you started.

And of course, telling someone who has extreme fatigue to go take a walk sounds completely crazy, and there are times when that is literally impossible. But actually, if you can get yourself out for a little walk whenever you actually are able to do so, you may find that the effects carry over in a positive way.

 

[BlueBells]

@feefee1968

Suppose to of been referred to the fibromyalgia clinic in the hospital but heard nothing yet and been 2 months

Ahhhh, but now you have us

 

[SBee]

One of the most useful things I have learned,especially in the bad days ( which is most of them some times) was reading

"Think movement rather than exercise."

i try to do as much as i can each different day, trying to stop before I know it will affect the fatigue even more. And thinking of exercise in the formal sense can overwhelm me. A two hour walk is 100% a huge impossibility! so I have refrained my thoughts regarding this. I can't do a fraction of what I could a couple of years ago.
My parameters have altered. So on a good day I do a very slow 20 minute walk, and I try to do some chair yoga.

I feel anything is better than nothing but still need to learn when to stop.

 

[sunkacola]

"Think movement rather than exercise."

^ This.

It is very important to keep moving, to whatever degree we can on any given day. It sounds to me as if you are approaching this in the most healthful way possible, SBee, and I would like to encourage everyone to follow this example.

I feel anything is better than nothing but still need to learn when to stop.

Exactly.

 

[feefee1968]

Thank you to everyone who has given me help.
I have a dog and I take him for a walk every day, how far depends on how I am feeling. Some days I don't feel like walking but I make sure he gets out. When you get that feeling of pure exhaustion then there is no way I could get up and go out.
I do have a friend who has fibromyalgia but she doesn't get out of bed days at a time when she has a flare up,. I do have days when I feel like this, but I refuse to let fibromyalgia beat me, and give up of even trying day to day things.
I have changed my diet completely and I only cook from fresh, no processed or frozen microwave meals in my freezer at all, in fact I'm struggling to fill it lol it's mainly filled with my dogs food delivery. I am trying whatever I can think of, multivitamins, B12, cod liver oil capsules but to no avail.

 

[Auriel]

Dog's are really good motivation to go out in fresh air, (when I had mine it gave me that, then I felt good after going out when I'd come back in, plus they're just lovely anyway) aw at least you've got a friend who "gets" it + how hard it can be sometimes (such a weird thing to feel stripped of all your energy, I really hope in the future there's more knowing + research on this and what more can be done about it) in the meantime you take of you and dog

 

[sunkacola]

@feefee1968 , all I can say is GOOD FOR YOU!
I have dogs also, and I know that having them makes all the difference in my life. Knowing that, if my dogs don't get taken outside for their walk, they are missing the most exciting thing that happens for them all day, and their only chance at something different, is a great motivator for me. Sometimes it is easier to do something for someone else than for yourself, or at least it works that way for me with my dogs.

Your friend is doing herself no favors staying in bed for days at a time. Although I know I have a day here and there.........we all do.......when doing even the basic things is truly more than I can manage, those days are rare. Most of the time it's a matter of getting myself going, and I can at least take the dogs down the road a quarter mile or so and back, and that's something. Doing what we can do each day is what matters.

Keep trying what ever you think of to try, and stick around here. We are all here to support each other, and a positive attitude like yours is always especially welcome on this forum.