HI There! I've just been diagnosed

longtimer

New member
Joined
Feb 5, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
02/2020
Country
CA
State
AB
I've just been diagnosed with Fibromyalgia - though my doctor did suggest this last year to me, but I was busy getting spinal surgery and put it off till just recently when I had my yearly physical. The surgery went well last summer, but in the last 3 months my pain has flared all over my body along with bad IBS, terrible fatigue and poor sleep. My doctor told me to exercise every day, and to practice relaxation. I am finding the exercise to be exhausting and making me more sore, but am continuing - please tell me it gets better...
 

sjbrown

Active member
Joined
Jan 27, 2020
Messages
49
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Hello :) Sorry that I can't tell if it truly gets better or not. I was just diagnosed 3 weeks ago but believe that is what I have been battling for over a year and a half after numerous dr visits and tests etc. I am still learning to cope and adapt. Site like this sure help!! It helps to find others who have it, see the struggles and success. Sharing of stories. To know we are not alone but each of us has a different symptomology as well as many similairities. People sharing what has worked for them. Together we help each other :)
 

longtimer

New member
Joined
Feb 5, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
02/2020
Country
CA
State
AB
Thanks for your reply - I'm sure there's a lot to learn from people who've been dealing with this condition. It helps to find that you aren't alone.
 

sjbrown

Active member
Joined
Jan 27, 2020
Messages
49
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
I joined this forum and another support group on Facebook so that I could try to get a grip on this thing. It certainly does help to know we are not alone in this for sure :)
 

CJSkippy

Member
Joined
Jan 20, 2020
Messages
25
Reason
DX FIBRO
Diagnosis
11/2001
Country
US
State
CA
Hello Longtimer and SJ Brown. Glad you found us, but sorry you have this disorder. It is very variable. Some people can exercise a lot, some not so much. Then are are, "flares," which may have identifiable pre-cursors, such as stress, illness, lack of sleep, etc. Sometimes it makes no sense, just happens.

My suggestion is you find a good doctor who understands the disorder and is empathetic. Then get the right balance of meds for you. My doctor told me that people with this do not get deep sleep, although they might not wake up at night. This makes it worse. I do not go to him anymore as I moved out of area, so I am looking for another doctor. My primary is sending me to a Rheumatologist. I need to get on some meds again.

As with all disease process of any kind, taking care of ourselves helps. Of course we don't feel like cooking nutrias meals or exercising a lot of times, but it does help. I wax and wane on taking care of myself. Oh and do not try to push yourself too much. One thing that might help is a whole foods diet. You can google that easily. It is too involved to explain here, except to say it is not eating any refined foods. There is a whole foods diet and a whole foods 30 day diet.

That is all I can think of right now. Good luck and let us know how you are doing.
 

longtimer

New member
Joined
Feb 5, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
02/2020
Country
CA
State
AB
Thanks for your comments CJSKippy - I appreciate you taking the time to answer my post - I trust my doctor and am already on several meds for chronic pain, so am wholly dependent on managing the condition right now with food, exercise and rest. It will be hard to find a balance in daily activity and fatigue but I will try and keep positive and moving.
 

sunkacola

Senior member
Joined
Dec 2, 2016
Messages
403
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Longtimer, no one can tell you how it will go for you with certainty. But some things are going to be helpful pretty much for everyone, and others harmful for everyone.

What is helpful is eating a really good diet, and that is different for everyone. I eat meat, don't do well without it. Others swear by a vegetarian diet, and that is what works for them. You will only know this through your own experimentation, but whatever you eat make it nutritious. Severely limit sugar, and even more severely limit your alcohol intake, as that will make things worse.

The other helpful thing is exercise. I personally think exercising outdoors is the top way to get your exercise, but admit that may not be practical for everyone. Taking walks or, if you can manage it, hiking, is probably the best and easiest (and least expensive!) thing you can do. I found that I had to work up slowly. I had always been an avid hiker, but when I developed Fibro., I stopped feeling like going. For a while there all I could do was try to manage the pain with medication. But I found that when I pushed myself to get out and start working up to hiking again, things really got better. I suggest that you try doing whatever outdoor activity you like best on a regular basis.

finally, I want to clarify that I don't eat anything fancy! I am on a budget, and also I don't really like to cook. So what I have done is work out meals that take the least amount of time to prepare, and are highly nutritious, and that is what I fix for myself on a daily basis. Make everything you need to do for yourself as simple as possible, so you will do it regularly. Best of luck.
 

longtimer

New member
Joined
Feb 5, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
02/2020
Country
CA
State
AB
Thanks Sunkacola - I try to eat well, and try to cut out sugar as much as possible - I find it particularly hard to avoid sweets or carbs when my pain is bad, but I am trying. I used to hike a lot (we live near the Rockies) but in the last ten years or so, have stopped - but perhaps will be able to get back to it this summer. I do find being outdoors to be most healing - why I love my garden, but it is difficult here in the winter with all the snow and ice so I am limited to indoor activities. I am hoping to get back to swimming again - but anything I do, I will have to do slowly as I am really out of shape from years of pain and surgeries.
 

sunkacola

Senior member
Joined
Dec 2, 2016
Messages
403
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Thanks Sunkacola - I try to eat well, and try to cut out sugar as much as possible - I find it particularly hard to avoid sweets or carbs when my pain is bad, but I am trying. I used to hike a lot (we live near the Rockies) but in the last ten years or so, have stopped - but perhaps will be able to get back to it this summer. I do find being outdoors to be most healing - why I love my garden, but it is difficult here in the winter with all the snow and ice so I am limited to indoor activities. I am hoping to get back to swimming again - but anything I do, I will have to do slowly as I am really out of shape from years of pain and surgeries.
You do have to build up slowly, and take care you don't over do things, as that will set you back. Consistency in working on that build-up is very important, I have found. You gotta just keep at it regularly.

I fully understand about Alberta winters, as I lived there myself at one time! Where I live now, the winters are perfect weather, but the summers are too hot to go hiking unless you go up into the mountains pretty high. No place is perfect, but I am glad I don't live in the cold any more. You will have to figure out what to do indoors for the winters, for sure. I know--- Calgary can get so sold that taking a walk can be dangerous!

One thing that helped me at one time was working out with a video at home. It's great - you don't have to go anywhere, no one sees how you are dressed, no one showing off like at a gym. There's a company called Collage Video online, and they have videos for every single fitness level, and you can choose different kinds. The DVDs are returnable if you don't like it.

I trained myself to eat fruit instead of sugar when I am craving sugar. Not that I never eat sugar, but I keep it to a minimum most of the time.
 
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