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howlinwoolf

New member
Joined
Sep 28, 2015
Messages
3
Reason
Undiagnosed
Diagnosis
09/2015
Country
US
State
OR
Hi all!

I guess I fall into the category of "recently diagnosed."

The condition is not recent though. I have been suffering from fatigue, pain, restless legs and cognitive symptoms for a couple years now. Recently, I had the opportunity to see a rheumatologist who suggested that it was fibromyalgia. I have been having extreme difficulty healing from an injury and there is referred pain as well as widespread pain of no specific origin throughout my body. That plus unexplained tenderness in those familiar points seem to add up.

I had a "duh!" moment when the doc gave me her opinion. For some reason, even in the depths of my symptom-googling, I neglected to see how exactly my symptoms fit the syndrome.

Now I am looking for people who have navigated fibromyalgia with some success. I really need some hope because I'm running on fumes between the actual injury and my brain's perverse way of dealing with the pain. I also just feel so tired all of the time.

Anyway, hi everybody!
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
Hi howlinwoolf, welcome! I had a similar experience - I was diagnosed after a terrible flare up. Most of the pain was in my hands, so I was very suspicious I had rheumatoid arthritis. It was only after all the tests came back normal and the rheumatologist said it was fibromyalgia that it clicked. The more I learn about fibromyalgia the more I realize it fits my symptoms.

We are all finding our way through this together. Please feel welcome to ask questions, share information, make friends or just vent. People here are understanding :)

Keeping a logbook of how you are feeling is a good idea. The logbook will help you figure out what causes improvement and what triggers worse symptoms.

I am extra foggy tonight. I keep catching myself switching words tonight. I think I got them all... I hope... :eek:
 

Getemgirl

Active member
Joined
Sep 8, 2015
Messages
98
Reason
DX FIBRO
Diagnosis
06/2015
Country
US
State
Utah
Success is a relative term I suppose with this illness. There's good days and bad days. From what I gather there's even good months and bad months. Trying to manage is the key it seems.

Like DK_Engineer, I'd had growing symptoms for a while and was finally diagnosed when I had a bad flare up. Started with my hands, but it was my knees that brought me to a standstill, literally. Reducing my stress and giving myself the allowance of doing nothing was key to managing it for me. I think. I'm still pretty new to this. I never know if tomorrow will be the day I get knocked flat again.

Some things that work for me is keeping a consistent dose of meds in my body. Try not to skip dosages because you feel better. Having a steady stream in your body is what is recommended to prevent flare-ups. Use internal imagery (is that a term?) to look inside and identify the painful areas and help them to calm down. Note when you start to get tired and honor that feeling by stopping. Laugh off the small stuff like the brain fog. Start a journal as DK advised. I think it is brilliant DK suggested in a different post to use this journal with your doc to discuss possible treatments, etc. try to stay a bit active as the blood flow seems to help. Massage. Some have done water therapy (this worked the one time I had access to a pool this summer. I have to figure out how to get more of this.) Do whatever seems to work for you.

Keep a log of what works so when you have a flare up, you can go through the list of possible remedies and try them all. If you think you might forget to look at the list, write it on your bathroom mirror :)
 
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