Horrible Flare up lasting more than 2 weeks! Help!

[Devin215]

Hi Everyone its me again I am back! I know it has been a long time but just need your help please! I have been pretty much stuck in bed lately for the last 2+ weeks because I have been having a horrible flare up with pain in my legs, back shoulders, and neck and weakness( the the point of giving out )in my legs and numbness in my hands and feet. Dizziness where I cant walk straight or crash into things and Also today I have been getting the numbess in my scalp that I had post surgery which I haven't had since a few weeks after my surgery. I have been in urgent care 3x and visited my PCP 1x all with no new results. They did a ct scan of my brain nothing new except for the post operative changes....remember After my surgery in october of 09 I am the one who had my brain swell up a week after my surgery and start hemorrhaging and they had to re-admit me and put me on steroids to stop the bleeding for a week....they did hip xrays last week ...nothing new.....blood work...all ok normal... I keep getting random spots of tingling and numbness and i am on very strong pain meds and they keep wants to add more to it when some of them I have already quit. Currently I am on ativan. Topomax, zanaflex, dilaudid, ibproufen 800mg, and my birthcontrol and they want me to get back on my fentanyl patch and noritryptolyne which doesn't work for me....the noritryptoline gives me headaches and i feel the fentanyl patch with eveything else is just too much.... any advice?

[selmaS]

Oh I know what u mean I had a HMO yrs ago and I hated it....but it is better than no ins, I think....lol.....

Keep pushing as much as u can to rule out the EDS and other things...it can make a diff.....I am sure u feel the same as me on the med issues, I was sure of that, just had to post my thoughts for ne one else reading....

I really think the more they give us the less they work so u feeling u r resistant is a good observation and a reason I dislike meds ....

   Keep us posted and know u r in my prayers

            "selma"

[Devin215]

Trust me I understand what ur saying about the meds I'm not trying to add anymore either I'm actually more resistant now... I wanna find why Im I'n pain not cover it up

[Devin215]

Hey selma! Yes they supposedly have ruled out tethered cord and yes I do have excesises I do from physical therapy. They cause more pain though but I still do them. I have asked them to do the hashinotos at first they refused but then I got my rheumatologist to do it abs it was negative . I haven't been able to get them to do the ehlers danios yet it's like twisting their arms to get then to test for any thing else I had to ask for a year just for them to xray my flipping legs stupid HMO I hate then now. The urgent care drs last time I saw them 1 laughed at me and said pick 1 symptom u want me to try to figure out, another walked out and didn't come back and another said I'm a tough case go see ur pcp and gave me a script... I'm losing steam and getting mad now and trust me they don't wanna deal with me when I'm mad cus heads will fly and complaints will be filed!

[selmaS]

  Hi Devin, I am glad u r back, but not for the reasons that brought u back....ouch....!!! : (

  I have to ask a few questions...did they rule out tethered cord?Ehlers-Danlos?
Then out side of the bed what do u do?....have u been going to PT...exercises?


   U have so many meds,I would be cautious about adding to them...finding y u have the pain would be more on my mind than masking it.....and the fentanyl patch is not always the best thing to go with.....

  I pray u can get to the bottom of all this soon and u r no longer in pain.

      "selma"

[Samanthab259]

I also had the problems with my hip & legs. They did a ctscan all it said was maybe bursitis. It  gets really worse i have notice when my period comes. Im still wondering it all myself. Sorry for the pain u are in.