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bgregoire

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After 4 months of waiting to get in, I finally got to see a rheumatologist yesterday. During the appointment the Dr said that fibro is always a secondary symptom of some other issue that she suspects that she can treat. This would be great news if there is something else that can be treated and then the fibro symptoms went away. I am a little skeptical as in research I have done, I haven't seen where it is always secondary to something else. Has anyone else heard of this? She seemed confident that she would be able to find the root cause. Is this just false hope or is what she said sound like it could be true?

She is running some more in-depth tests for some autoimmune diseases that she said were treatable and testing again for inflammation in my muscles. She said that my GP might not have been able to know to look for other markers in some of these tests that may have looked normal to him.

She also told my wife and I that she has lupus and that she knows what it is like to be in my shoes before so I am a little hopeful. After how an awful last month I have had some good news like this would be great.
 

katydid

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It's definitely possible that your fibro could be a secondary ailment. I have seen research on this. In my opinion I think it really just depends on the person and every situation is different... Until they can give us more definitive answers on what causes fibro specifically, testing, and proof, anything is possible!
I'd see what she has to offer and at the very least, she can rule out other health issues! Good luck! Keep us updated!
 

bgregoire

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There was more testing done, but the results were normal. I was hoping there was going to be something that was missed but that is not the case. Kind of a disappointment as I was hoping I was going to get my life back
 

bgregoire

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She is going to start me on Savella, and she thinks I should do some reflexology physical therapy for the fibro symptoms. I don't know how well they will work, I'm hoping for the best.
 

kmpisces

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I think there are times when Fibro is not secondary to something else. I know they often say that an illness or a trauma can be the triggering factor. Fibro sometimes shows up after things like this.
 

Trellum

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Well, thing is there are several health issues that can mimic fibro's symptoms perfectly. Your new doctor actually did the right thing by running those tests! It's good you don't have Lyme disease or lupus! I know you were hoping to find answers, but believe me, it's really good you don't suffer from lupus or Lyme disease! Hopefully the Savella will do the trick, and if it doesn't you just have to keep trying until you find the right medication for you.

Best of luck and keep us posted :)
 

bgregoire

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I have been on the Savella for almost a month, it seems to be working as I feel better than I did a month ago. I still don't feel great but I am happy it is better. Right now I think I have the right mix of treatments, I am seeing my therapists both mental and physical, yoga and light exercise, hot baths, special computer glasses for working and Savella. I can say that with these things I am feeling much better than I did 6 months ago but still not great. I still have bad days but I am hoping they will become less frequent.
 

Trellum

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Oh, so you are back to work?! Those are awesome news! Glad to read that, some months ago you seemed so down because you couldn't use the computer for too long at work because your eyes were bothering you a lot. What was it in the end? Was it related to fibro in one way or another? Glad to hear that was finally solved and you are working again :)
 

bgregoire

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I am back to work now and it still is a struggle with my eyes on bad days. I know that its fibro because when my pain and fatigue are worse my eyes hurt as well. I use my computer glasses and taking breaks seem to help. I'm still far from feeling 100% and I may never get back to that which is sad but I am trying to redefine my limits. I think it will take some time for me to adjust.
 

1sweed

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Just wanted to say I am very happy for you in regards to your doctor being so concerned for your welfare and running the necessary tests to determine if there was another illness and while these tests were normal, it is good to know that the doctor cares. That is a big plus in my book. I hope you continue to do well on the medication and please let us know how things go from here. :)
 

bgregoire

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Messages
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Diagnosis
11/2013
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Thank you everyone, I hope in the future that there will be a definitive test for Fibro, so others don't have to go through this much testing or experimenting to starting getting treatment. I know that from when I started feeling bad to getting better was only 10 months and some of you that length of time was much greater but I can say that it was without a doubt the worst 10 months of my life. I wish there was a simple blood test that could say, your XYZ units are through the roof and it is Fibromyalgia. That would remove the friends and family members telling me its a garbage diagnosis and that the doctors are just giving up on you, "if its not anything else they can test for they say it is fibromyalgia" is what they say and its pretty irritating. I have done a lot of research of what fibromyalgia is and its current status and I know that isn't true but I tired of dealing with that part of it as well as going though the gauntlet of tests and ideas of what it might be would have been a lot better.
Hopefully all of these treatments keeps working and I don't go backwards. It would be ideal if I would be able to go back to my routines of running and cycling again but I don't see that happening anytime soon, at least not at large distances. It was a bit of a downer over this last weekend seeing all of my friends compete in the Fargo Marathon or last week when my coworkers ask me why I'm not running this year. I miss being apart of it and it feels like I am losing that part of my identity. My therapist says I need to redefine my limits so that might be the hardest part of coping with this now. It is something I will have to keep working on and I guess eventually accept as reality.

Thanks for all of your support and I hope you all are having a good day.
 
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