Newly diagnosed

General
1

Hello all!

I have had widespread pain, among other debilitating symptoms such as over 100 pound weight gain and never ending fatigue, for the past 8 years at least. I went from doctor to doctor, and was met with "eat right and exercise and your weight will go down and your pain will go away"...Basically telling me I was fat, and if I lost weight I would be fine.

I finally took matters into my own hands and made an appointment at the Mayo Clinic in Arizona. Best decision I ever made, as they were able to diagnose me with Fibro, Chronic Fatigue and Sleep Apnea - things other doctors did not even consider.

I am finally ready to face this disease head on. I have literally spent the last 3 days in bed, not showering, not doing anything. I think I went into a funk when I was diagnosed this past Friday, as I had known little to nothing about fibro before. Once I was diagnosed, and I began to look into it more, the more I became overwhelmed and depressed. I never knew what exactly fibro was, much less what it was doing to my body. I think I was hoping for an "easier" way out of my medical issues, and having to live with this for the rest of my life had not even crossed my mind.

I am so glad I found this site, as I can use all the support and understanding I can get right now. My family is supportive, but I KNOW they do not understand that I may look fine, but I don't FEEL fine a lot of the time.

2

I was diagnosed thursday. I am currently going through the same emotions. I too am so happy I found this site. Its overwhelming to have to accept that this is life long. I went to the doc hoping for an easy answer too. I just can't believe that i'm stuck like this. I'm currently about 100lbs overweight too. I hope that with awareness there may be something discovered about this syndrome. I am 32yrs old and have many years left to live and the medical is always making break throughs. That is the only hope that i've found in this week of being diagnosed.

3

Hi Blondie,

Good for you to go to the Mayo! With those diagnoses, you should be able to start with getting some restorative sleep, can't do much successfully unless you can sleep! I still think walking is one of the very best things for us, and hopefully the weather will soon be allowing us to be out. A hot shower or bath is a good way to get 'loosened up'. We had a hot tub when we bought the house, but it did not last long, and it had no temp control, the water was far too hot to use in the summer, and being outside in the winter in it was no good for me, so my husband bought me a tub insert, when I decided that I did not want another hot tub. It is especially good for me as the jets hit my lower back, which is my problem area.

http://www.amazon.com/Turbo-Spa-bblspa-Portable/dp/B002WDXGCC

I know this info is hard to process, I'm sure it hit you hard, and it really is a process, and on-going one, but knowing is also very freeing, I think. It's the justification that it's not your imagination, it's illness.

You are so right, knowledge is power, find out all you possibly can. I am not sure if you are interested, but we had a Rheumatologist/Pain specialist join the group who wanted to share his findings on fibro and chronic pain. He placed this info in a 'Dropbox' and if you are interested, just click on my photo, leave me a private message of you home e-mail address, and I'll send you the access link. Your e-mail address is safe with me, if will not be used for any other purpose and will be destroyed when we burn the bills. We do try to pay them before we burn them! ha! My grandson was fascinated with the shredders, we have gone through several, my husband is always burning a stump, so this insures that no account numbers are accessible to undesirables.

In these files from Dr Quintner, there are also some good exercise suggestions.

I'm glad you found the site too. We'll help get you though this, Blondie, and surely you will help us too! We hold each other up.

Wishing you well,

SK

4

Hugs, I can't say it gets better cause I still have those spells, curl up in a ball and do nothing but think for a few days I know it isn't productive but it feels like the only thing you can do. With weight, don't worry yourself too much hun, you have a ton to learn about your body right now and once you have gone through the lesson then look at the weight in greater detail but doing it before will not be productive. And one thing that helped me when I first learnt about fibro is it is not life threatening, it will be there for life but it won't be the reason for its end. Hopefully what I said makes sense and helps.

Another Member suggested this site as a letter to describe fibro to family members and it does one amazing job!

http://www.alaskanmalamutesoftherockies.com/invisible_illness.html