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Pegleg84

Active member
Joined
Mar 8, 2017
Messages
82
Reason
DX FIBRO
Diagnosis
05/2017
Country
CA
State
ON
Hi all,
Fairly new to the forum (been poking around since I realised I probably had fibro). I saw the rheumatologist yesterday and it's more or less official: I have Fibro. He checked for tender points (didn't get a count, but I have a bunch) and the symtoms questionnaire all came up positive. I'm already on 30mg of cymbalta, which seems to be helping. I'll see my family doc in a couple weeks to discuss treatment.

Even though I've suspected this would be the outcome for a while, it hit me pretty hard yesterday. I have Celiac Disease, some food intolerances, and mild IBS, so I already have to pay constant attention to what I'm eating. Now here's another lifelong condition that I'm going to have to alter my activities to accomodate. Will it get worse? Will I be on drugs the rest of my life? Will I not be able to do things I want in the future because my body won't be able to handle it? It's pretty overwhelming.

In any case, I'm feeling better today and am trying to focus on what I can do. My pain is relatively mild in the grand scheme of things. The drugs are helping. I just went on vacation where I walked a lot and biked and climbed a million stairs, and aside from legitimately sore muscles I felt pretty good. Maybe it's catching up with me now, but it was worth it. I have to keep on with my life and do whatever I can instead of telling myself that I shouldn't or I can't. I'm not about to run a marathon or lift weights or climb Everest or anything, but I can still go for walks and work in the garden and play my cello. The more I keep my mood up, the better things seem to be. I'm also grateful to have a supportive partner, and glad to have found this forum.

So, what helped you after your diagnosis? What has helped the most in the long run? What should I expect in the short/long term? I know everyone is different, but any advice or stories are helpful.

Thank you,
Peggy
 
First of all welcome to the forum. You are among people who know first hand what you are going through.

When you first realize, you have been diagnosed with a 'chronic' illness, the idea of it being a lifelong, everyday battle is indeed a very scary one.

The key of fibromyalgia (and most illnesses really) is to really listen to your body. Know your new limits, lead a very healthy lifestyle, staying away from stress as much as possible. This therefore includes things like saying no, taking things slower, paying attention to your mental health, finding new hobbies that calm you and make you happy.

You seem in a pretty decent athletic condition, so keep that up as much as possible. A fit body is so very important. Doctors say that fibro is not a progressive illness and this is the case for many. Sadly for some of us here, we do notice that it gets tougher and tougher as years go by - getting old is not helping condition either of course. The important thing to remember is that you will have good days and bad days. So make the best of the good, and on bad days, give your body the break it needs.
 
Hi Peggy. Vickythecat gives good advice. I'm still adjusting to being diagnosed and usually end up doing too much instead of listening to my body. One of these days I'll realise my own new limits and not ignore them! I did far too much yesterday and now can hardly walk with a flare up of trochanteric bursitis and extensor tendinitis, it really wasn't worth all this pain!

You sound like a really positive person which definitely helps and keeps stress levels down ��
 
Thanks, guys. I am trying to stay positive, though it's hard. I'm having a rough time adjusting to the Cymbalta, which is helping with the pain somewhat but also making me extremely tired all the time. Last week was pretty rough, I slept most of the weekend, hopefully this week will be a bit better. I am starting to increase my dosage tho, so probably some more rough days to come.
I am definitely not in any kind of "athletic" shape, but I can still walk a good distance most of the time. Climbing stairs is the worst right now. I'm trying to do tai chi stretches once a day. The doctor recommended aquafit so might look into that.
I have Celiac disease, and it took me a few years to really get used to that: being extra vigilant about what I buy, cooking all my own food, researching carefully before going out to eat somewhere. Now it's just second nature. Fibro seems to be a bit of a different animal though. I can't just stop eating a thing and feel better. It's going to take a lot more trial and error.
However, I know I'm not alone. This forum will be helpful, but also a friend of mine (also Celiac) was just diagnosed with Fibro too! (We swear we must be twins or something), so hopefully we can help each other along.
So for now I just have to force myself to keep going through the pain and the fatigue and the other stupid things.
Thanks for the support!
 
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