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Just been diagnosed
4 Replies
MsAndrea77 - August 20

Hi everyone,
I've just been diagnosed about two weeks ago but the more I read on fibro the more I realise I've had this condition for years. Part of me is relieved as it explains all these different symptoms I've had for a long time under one diagnosis, but another part of me is concerned about what the future will hold.

I read a lot about the pain people experience and that scares me- I get very sore legs which make it hard to sleep some times, pain in my chest/ribs and all my shoulders/neck are very tense and sore. But even though I've been in pain, I just ignore it and get on with things.

This year being exhausted all the time and having flu/sinus infections frequently is what has lead to the diagnosis. The doctors did every test under the sun and couldn't find why I was so sick other than iron, Vitamin D and magnesium deficiencies. Finally, a few different people- including one who had Fibro- suggested a particular doctor to me, and after telling her what I've been going through, she listed out a whole heap of other symptoms I hadn't spoken about but have been experiencing for years and diagnosed the fibro.

I guess this year is when I really started to see that whatever this flu thing I had was, it wasn't going away- and the exhaustion had gotten to the point where I was falling asleep all the time- when driving, when sitting down for more than a couple of minutes- and so forth. The pain in my legs ebbs and flows- but when it is bad, it is very bad- and whenever I do too much- or even just a little- the pain and the exhaustion come back in abundance.

I make the most of when I have energy. And even when I am tired, I find if I can break things down into little tasks and have a rest in between, I can get a few things done. I am a single mother, working part time and studying part time. I am lucky because I work split shifts, so on a bad day, I can go to work for a couple of hours, come home, sleep and then go back in he afternoon for three more hours. I also have a really good assistant who steps up when I am having a bad energy and pain day.

But yes- the diagnosis has helped and enables me to feel justified that there is something wrong with me- I felt like for years the doctors I went to did not take me seriously. I ended up in hospital because of a very high fever that gave me rigors- they couldn't find an infection to cause it- and from there all the testing started- but it was the first time anyone had taken me seriously enough to say hang on, she's only 35 and in good health otherwise (except for being overweight), why is she sick all the time?

But even with the diagnosis, I feel incredibly lonely with all this. Not only do I feel unwell but people do not seem to get it. My mother keeps asking me if I am feeling better- as though this is just going to go away in a few days. Other people ask me if I have tried this or the other to get better quicker. Just hearing their suggestions and the lack of compassion makes all this harder. It scares me I am facing a life time of illnesss- manageable to some extent but unpredictable in others- and am alone in all of it. A couple of friends took time to read up on Fibro, and that made me feel better because atleast they are wanting to understand, but will it always be this isolating?

I guess the fact that I can't visit with friends at all at the moment because I'm too weak doesn't help the sense of being alone. I'm so exhausted most of the time that even talking on the phone is too hard and listening to people and trying to focus on what they are saying is a struggle- let alone pretending that I am interested when all I want to do is lay down and sleep for a few hours.

Do other people feel this way?


January - August 20

Hi MsAndrea. Sorry to hear you are feeling so miserable. Yes, I think a lot of us on here have felt the same way. I would normally jump in with a lot of suggestions, but...

You said something that really hit me, you get sick of suggestions and want more compassion. It's true, when you just feel so sick that you can't deal with things, you don't want suggestions, you want understanding. It's very hard to get from people who don't have this disease. You look fine, yet it's a chronic, disabling disease. People can't understand how you can look OK and be so sick. And they don't get it when years go by and you're still sick - but you still look fine. You're lucky you have a few friends who read up on the disease and tried to learn about it. Yes, it is very hard to feel exhausted and sick for years. I just want to say that there are a lot of things you can do to help yourself feel better. YOU will have to do most of it though, the doctors are too busy to take care of you like that. A good counselor might help you deal with the grief of being sick like this.

When you are ready to fight, you might want to read some of the suggestions here. Because it really will come down to you. You will have to figure out what your symptoms are, communicate with your doctor, read new research and ask for tests. You said you had a viral illness. Sometimes fibromyalgia follows an illness, and if you can treat the virus, you might feel better. But I'm going to refrain from "advice" right now - there's advice all over the place - and just say welcome to the site. There are lots of people here like you, who really do "get it." I hope you feel better soon.


nikita3 - August 21

MsAndrea77, I can totally relate to how you feel and all of the things you have said. I am 35 as well. I was diagnosed with Fibromyalgia last year, but believe I've had the symptoms for eight years.

It is really hard to maintain friendships because it takes so much energy to go and visit a friend or even to phone someone after doing all the every day chores and maintenance tasks we have to do. Then there is dealing with people who don't understand fibromyalgia and how hard it makes these 'seemingly normal' things to do.

There is also the isolation that comes when you can't go out to different events because you just don't have the energy for it all and when people don't understand they can take it the wrong way. Because you can't give so much time and energy to all relationships, peripheral relationships go into decline and then what's left are just a few really important ones. The good side of that is that you end up with just the people that love you for who you truly are; that's what I've found.

At the moment my biggest problem is fatigue. I am scared though that as I get older the pain aspect will get worse and worse. It seems that older people with fibromyalgia have a lot more trouble with pain, but I don't know if that's right. Anyway, I'll stop rambling now and leave you with what's hopefully a helpful tip. I used to get these frequent flu/sinus infections you are talking about. Once I started taking 500 mg of vitamin C a day they went away and now I rarely get them.


MsAndrea77 - August 21

Thanks January and Nikita3 for your responces.

It helps to know other people feel the same and have similar thoughts.
January your words were very encouraging- I understand about needing to fight this but also know that it might be a while before I am ready to fight. At the moment I just try to get through each day- I have exams for uni next week so I want to find a way where I can study and prepare even though I've had a major flare up of symptoms this week.

Thanks for the tip on Vitamin C Nikita. I'll give that a try.
At the moment I've got a chest infection and sinusitis which has made me super exhausted, and the pain in my legs and arms is quite severe. I saw my doctor today and she has given me some sort of mega dose antibiotic and also explained to me about triggers for fibro. She's been good- I have other friends who have FM and she has helped them immensly so when I went to see her I felt I'd be in good hands. From what she has told me it sounds like she has the condition herself, so that is always reassuring as she has been through this.

I better get to sleep. Thanks again Nikita3 and January. The information on this website and the posts have been really good.


January - August 26

Hope you are feeling better MsAndrea! Sounds like you have a good doctor, and that is something a lot of us have trouble finding!



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