according to mayo i do have fibro. im really scared and panicked-never been sick in my 63 years. i wonder how im going to make it. at least my hubby belives its real-not just in my mind. he doesnt know how to deal. i did call uc davis for a dr appt. did everyone have alot of fear right after diagnoise? how did you deal-what worked and what didnt? i know stress makes it worse. any sugestions woul be helpful.
Hi Rileybug,
I'm so sorry that you have fibro. I know you were hoping for some better news. And it's just nuts that the illness can strike out of the blue after all of those years. But it must be lurking inside those of us who are predisposed to it, just waiting for the right stressor/accident/injury/overwork/surgery in order to strike.
But the good news is that it's causing our bodies any damage, that the doctors know of, and its not fatal. I often reflect upon those points as I realize my situation could be much, much worse.
I was both peeved and in complete disbelief when I first got the news because I expected a REAL diagnosis for a REAL disease and here was my doctor telling me I had some housewife's fake neurotic "illness?" Yep, that's what I thought of it at first and it's taken me many months to finally really "see" how much my symptoms fit in with fibro symptoms.
BTW, you have every reason to be angry! It's an illness that will make you change many ways of doing things. You'll tire easier and need lots of rest. Your thinking is foggy at times and you hurt a lot. No, it's not a rose gardem.
BUT we can offer you support and knowledge. For instance there are several good fibro books out there that our members have recommended in the past. I know that Eeyoreluver has spoken of them, as have others, and I'm hoping they'll pass the titles on to you.
I dealt by staying in denial for many months. I got a part time job and tried to carry on as normal. It worked ok over the summer months but by the autumn months, I was in terrible pain and could barely do the job. I had to accept that my particular case of fibro was messing with my ability to walk and to work effectively. And yes, it really was fibro and I couldn't outrun it. In fact, the harder you try to outrun it, the farther you will fall behind.
Pacing yourself is extremely important. You may have to sit down every so often in order to get up the energy to finish a task. You may have to change routines in order to simplify your life, like taking the car to the post office instead of walking or using an electric can opener instead of a manual one. These sound like insignificant things but they aren't. Learning easier ways to do things without expending much energy is a big plus in fibro-world. I finally granted myself permission to use the mobility scooter in the grocery store as I was leaving it feeling like death warmed over while still pushing a cart on my own.
Having your husband in your corner will help a lot. He can always read the discussions on this site or read letters written to explain to families what it's like to have fibro. One such piece is called "Letter to Normals," while another is "The Spoon Theory." We've also included a list of fibro symptoms on this site; I'll see if I can find it. If I can, I'll bump it to the top section of the discussion board and it'll hopefully stay up there until you have a chance to read it. I think it's important to read this list and keep a copy of it. Also let your husband read it. That way if you start experiencing something that seems weird, you can look at the list and see if it's a fibro symptom. That doesn't mean that you don't discuss it with your doctor, though, obviously.
Stress doesn't kick my fibro off but cold weather, snow storms, rainstorms, low barometric pressure and high humidity certainly kick it into high gear!
Well, that's all I can think of for now. I'll take a look for the fibro symptom list now.
My best to you,
Petunia
thanks for your support.how long have you had fibro? i havent had time to wrap my head around it yet. did you ever had chest/stomach pain? i wonder what symptons are anxiety vs fibro? ive had anxiety about health for a while. mayo scanned everything,so at least i dont have any cancers. my cousin had fibro 20 years ago-but does really well now. she doesnt even take meds and she has a normal life.
Hi Rileybug, now take a few deep breath, you need to get rid of that stress
You need to remember that fibromyalgia affects individuals differently; some can continue life fairly normally with meds pacing themselves and changing some things; others are hit a lot harder and it affects them significantly every day often in combination with other diseases; and others are sort of between the two.
I realize that it’s scary although I had no idea what It meant when I was diagnosed 15-16 years ago. I found it scarier when I found out what some of the forum members had gone or are going through, but as Petunia said “it’s not fatal”. I expect it is even scarier for you if you’ve never been sick before. Don’t let the list of fibro symptoms scare you, it’s an aggregate of symptoms from numerous fibro patients, I don’t think any of us have all of them, but it helps in identifying things for your doctor.
I’d suggest you take it one day at a time, see your Doctor and find out what meds and therapies he/she recommends. You’re definitely going to make it, and as time goes on your husband will learn how he can help you. Remember members on the forum will be here to provide advice based on their experiences and will support you through this. You are not alone.
I think you’ll find the documents Petunia refers to very helpful. Please take care of yourself, you are important to us.
Sending gentle hugs your way.
thanks for the kind words-im still terified. im sure thats everyones first responce. i try to stay away from dr google-since that makes it so much worse. i have a doc appt nexr week with my internist-he doesnt know i went to mayo. so i will talk to him and go from there. i worry 24/7-hopefully that will improve with time.
My Rheum just told me that my Psoriatic Arthritis caused my fibro, but the fibro is NOT doing any damage, the autoimmune arthritis IS, it eats away at everything. Fibro was my FIRST diagnosis, but as the years went on, the diagnosis progressed into other things. Autoimmune things.
Were you examined and tested by a Rheumatolgist, was one recommended for you to see on at least a yearly basis?
I know you are upset, it is upsetting, Rileybug, but with the right Dr, the right meds, it can become more manageable. Just have to make sure there is nothing else there.
Sending big hugs your way,
SK
first trip to mayo in january-tested for everything-12 different docs/various ct scans. all normal including a zillion blood tests for every. this trip was the fibro clinic for a diagnoises of fibro. i feel they covered all the bases. in the last 2 years ive had everytest except a pet scan.
I know that having fibromyalgia is no picnic, but thankfully no autoimmune or neuro diseases showed up! Sounds like they really did a thorough check, Now it's time to learn all you can about Fibromyalgia.
Here are some places to start right here if you like, I used the search engine at the top of the discussion page, typing in 'definition of Fibromyalgia':
http://forum.livingwithfibro.org/forum/topic/search?q=definition+of+fibromyalgia
Rileybug, Sounds like Mayo covered everything, wow !!that has to be somewhat of a relief … I say that because so many fear it’s something else, including myself… I often wonder if they are missing something ?
It just sometimes is so hard to understand how symptoms can be debilitating one day & better the next
I would say take it slow, let your brain digest what you have learned and go from there…
Everyone is different, but once you understand how your body reacts to certain things, the fear of the unknown gets better…
For example… I know if I experience a stressful situation, I kinda know how I’m going to feel, if I don’t get the sleep I NEED, I know what I can do that day or not do that day.
You just become very in tune with your symptoms & what your body is saying
Hugs & blessings
dee
Fibro is scary. You have a right to be fearful or angry. On the othe hand, you have a companion who is sticking by your side. Which is more than some of us. There are some great books avaliable, in human terms like fibro for dummies etc. educate yourself. We all have different triggers and symptoms. My words to you are be strong, and if your a Godly lady pray. Have your PCP watch your vitiman D and B-12 our bodies seem to completely deplete those literally. And watch vitiman supplements now, even daily multis. We are different. Seems our bodies are at war, with what? Who knows. Best wishes.
Well first step you did right is being in this group when I joined a couple months ago I really feel I have people who understand me.Thank God you have a husband who is by your side an is trying to help this disease is a rough one to deal with but first thing you must do is put yourself first an everything thing else second which I have hard time doing lol this is new to you so take it easy read up on it as much as you can an most important listen to your body . An always know you have us here to help you .I’am still learning things hang in there hugs melissa