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I am new, but no diagnosis
1 Replies
Anna1981 - June 10

Hello
I have had the symptoms for years (I'm 27 at the moment, 28 in September). Some years ago I went to a doctor that students at the university could go to. She had probably never heard of such an illness before. They just took some blood and other tests and she told me everything was normal. So I asked, is it normal to have so much pain in your legs that you can't sleep at night? I didn't get an answer. But she did send me to a rheumatologist. I told that doctor I might have fibro. "Oh no, no, it only affects middle aged women. You are way too young." was her answer to me. By that point I had read quite a lot about fibro and knew that old and young, men and women can get it. So I stopped going to doctors.

First, I thought I'd make a list here of all the symptoms I have been feeling throughout the year. But why would I? I am sure most of you have the same symptoms yourself. Just check the list on this site.

As I wrote, I have had it for years (difficult to know when it changed from pain because I was growing to pain because of fibro). A couple of years ago I was a member at a Yahoo group for people like me. I stopped because I felt tired of reading about other's problems and I didn't want to be reminded that I probably have it. 

Recently I have once again started to read more about it and I realize that I have to do something to get rid of these symptoms. Exercises, yes. But it hurts. I am sure that what 99 % of you will agree with. I have been dancing folkdance for more than 10 years. In the last two years I haven't been as interested as in previous years. I don't know if I will continue in the autumn. I like cycling, and it's actually something I can do without it causing more pain the following day. In the summers I usually go for a long cycling ride that last for an hour. A few days ago I went to the swimming center. The result after a little more than an hour in the bubble pool and a few strokes in the big pool: really bad pain in my right arm. I usually don't take pills, but this time I had to because of the extreme pain. I also rubbed my arm with a gel a few times. It's much better now, but I still feel some. Walking is a no no for me. 10-15 minutes and I already start feeling pain under the feet and between the knees and ankles.

I'm at the library at the moment. Thought I'd borrow some books about something you can do at home. Once I borrowed a book about yoga for stiff people. That sounds like something for me. There's no way I'm going into some of those positions that other yoga people get into. The last time I borrowed it I didn't have time to try any of those, but I will now. I'll also see if I can find something to strenghten my muscles, especially in the stomach area. As I read on this site, I'd better start slowly. But at least I am doing something.

I was pretty schocked that the scales showed 62.1 kilos today. I am 157 cm (I think), so I calculated my BMI to 25.1! Overweight! Probably 9 years ago my BMI showed underweight. But I don't look at my self as fat. I mean, my arms are pretty thin, I'm just thick around my waist and the thighs are pretty big. Thought that was muscles, but who knows. So I'll be checking what I eat more closely now and avoid candies, cookies and sodas and see if the weight will go done with the excercises that I'll try. I got some good ideas from this site about eating.

I know family and friends are important when you have fibro. But I am sorry to say that my dad is dead, I can't talk to mum about it or my siblings and I just have one so called friend that I meet may be twice a month. We can't talk either. So I am on my own. Unemployed, living with mum (just because I can't afford to live alone), depressed, low selfconfidence, social phobia... Sometimes I hate my self, whishing I had been born with another soul and another body.

Well, my biggest dream is to be an author and publish books. But with the selfconfidence I have to day I don't know if anyone wants to read my books.

Better stop here. Another person wants this computer. I hope I get some responses at least.

 

axxie - June 11

Hello Anna1981

You are feeling down and think the whole world will collapse on your shoulders. I know the feeling I had the same and feel much better now that I am on medication.

Looks like you need another doctor who will help you and not block your path of getting better.

On this site you can look for friendly fibro doctors, I would make an appointment as fast as possible.

If the mind doesn't go anywhere then no amount of physical activity or sheer power will help you. I do believe you might be somewhat depressed.

While you wait to see a fibro friendly doctor, take a few moments everyday and write your feelings and how you are feeling physically. This is a form of therapy but also a tremendous help to the doctor, in understanding how you are feeling.

Your diary should go something like this.
June 10, feel depressed, pain in shoulder 8 out of 10, took a long hot shower, pain diminish but returned, took tylenol or whatever you take for the pain and now feeling 6.

June 11, painful in shoulders, pain feels like a 10 - laid up in bed, feeling depressed, tried sleeping had 2 hours of tossing and turning.

Bring this diary to the doctor for him/her to look at it, it will help the doctor diagnose you and probably want to run a few tests. If you have your last medical report and tests, then I would also bring those, so the doctor doesn't have to start from scratch with the testing. Before a doctor diagnoses you with fibro, they will need to elliminate many other health problames that you may have.

Don't be afraid to be your own advocate, if not you then who will, doctors only treat symptoms, y ou must give the doctor as much information as possible. Ask the doctor to do the fibro tender points, (you can find this on this site also).

At last tell the doctor you are feeling depressed and ask that you get something to help you manage the pain and depression until they find out what is wrong with you.

Don't forget try to go out and take a slow walk around the mall, or around the block, try to think of something else then your pain.

If you want to sleep, for now I would advise you to get some benadryl, this will help you sleep, it's also an antihistamine, which will help you with the pain, it won't take away, but might help you in managing it, at least until you see the doctor.

It's ok to talk about your feelings, if mom has too much on her plate, she might not be up to listening, but you can always write here and many of us will try to help you as much as possible. We will listen and give you our free advice based on experiences.

Now that the good weather is here, if you have a yard, get some flowers and plant them, you might find therapy, and sunshine helps with the moods.

Are you taking vitamins to help you, such as a women's complete vitamin, B6 - B12, iron, folate, and a fish oil, you might want to try greens for energy this will also help you with your moods.

Come back in a few days, and tell us how you are feeling and if you have gotten an appointment for a doctor. Don't despair, we were all in the same predictament as you at one point.

:)

 

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