Been Awhile.....

[flcrakar]

Just dropped in to say hello. It has been some time since I posted anything here. YUP, still have Chiari :-/  Nothing seems to help and surgery is a last resort for me. But I am still trying to find the happy medium between the NL and Reumatologist diagnosis of Fibromyalgia. I still keep my chin up, but with this cold weather it is tough. I can't seem to stay warm.

Hope all is well for everyone and :-)

[selmaS]

  Have u looked at the testing they describe online....to see how u "fit"....and if I am wrong didn't u go to TCI?...they should have checked u for this if u went there....odd....

And r u sure it is fibro...I was dx'd with it and now I am told I do not have it, that it is the EDS causing the pain....

I do not understand y they can not or will not test u....I am preplexed.

   "selma"

[flcrakar]

:-) Sorry it has taken me so long to reply, lot has happened . I still can not get a Dr to do the test for EDS, they blow it off because my flexibility is shot from the CM and Fibro. My muscles stay so tense and the nausea all the time. My headache is still here 2+ years later and I am so tired of feeling like the Mack Truck has run me over :-/   I am so sensitive to all the meds they make me sicker.   Oh well, I am taking each day as it comes and enjoying all the time I can with my daughter. :-)

[seamatty]

Just wondering what your symptoms are? I was also diagnosed with fibro and chiari and have a difficult time not blaming chiari for it all...

Do you take meds? Which ones have helped?

Thx

[linnielou232]

I'm so glad to hear that you are handling this with no surgery.  I have also been dx with firbro.  The doctor put me on Lyrica, but insurance co wouldn't cover it, so the pain clinic just this past week has switched me to Keppra which now since it is in my symptem it does seem to be working.  Maybe you should look into this to see if it would help you also.  I'm just glad to be on a med that the insurance co actually cover's.

[selmaS]

  Hi...good to hear from u again!!

  May I ask, did they rule out Ehlers-Danlos?...it can be very painful and present like fibro...I was dx with fibro and then my NS and NL said it was EDS and not fibro......

    "selma"