bursitis

[Rylanesmom]

I just went to see my rheum Dr.  I haven't seen him since January and it was preop for Chiari Surgery.  Really I left the appointment feeling hopeless and thought he was mean.  He had said that the chiari surgery would not fix everything and I was still going to be in pain.  Based on his letter my NS had cancelled my surgery which ended up being a big misunderstanding and rheum Dr. said no you need the surgery it is not going to fix everything.  So long story short I have been in a lot of pain from EDS and fell really hopeless as nothing helps.  I recently went to NL...nightmare she basically told me to exercise and didn't feel problems were neurological and when I tried to explain anything was EDS she would tell me to quit talking about it that EDS means nothing to her.  I left there crying and more hopeless.  I have been on celebrex by PCP for the last month due to bursitis in hips and heels and it is not helping.  Today after laying in bed for 2 days decided what do I have to lose I will call rheum and make an appointment.  I thought maybe he did not want to treat me preop as I was on so many meds and getting ready for brain surgery and after all he was right the surgery did help but did not fix my overall pain.  Today I saw my rhem and he was very nice.  He said quit the celebrex it is not working.  He put me on tramadol and said take 2 extra strength tylenol with it and he feels it will be better for my overall pain.  He took xrays of ankles and said that heels have spurs, bursitis, and tendonitis.  He said that we need to try shoes that stabilize the heels (said my dress shoes are bad for work and really need to wear high tennis shoes and gave me a note) and tramadol and if it does not improve I will need to see orthopedic foot surgeon.  He said often they will cast ankles to improve this issue but we need to try this other route first.  He injected my hip with steroids and pain meds to see if that will help the bursitis pain in hip.  He did a large enough injection (actually multiple in the hip) that he could only do one today.  He said if it works I should know in 2-3 days and then it would be okay to do the other in 2 weeks.  The injections can be done every 3 months.  He said he could not inject my heels as it would cause the achilles to rupture.  (ouch)  So here we go at least with something else to try:)

[selmaS]

  Sleep has always eluded me too....I always fall asleep just as it is time to get up...hate that...ugh....the taking of antihistamines  has helped me BIG time.

   What about a nice ankle boot...there r some nice ones u could wear  that r fashion forward....???? My DD just bought a cute pair....

[Rylanesmom]

New treatment has me cautiously optimistic!  This was the best pain day I have had in a long time!!!

[Rylanesmom]

hmm new meds and worrying about friends on east coast has me awake...can't stay awake when you should....can't sleep when you should go figure

[Rylanesmom]

I'm researching ankle braces he thinks the heel problems is from the lax ankles..said to wear tennis shoes that come up high...but I work in the fashion industry.  

[Rylanesmom]

He was much better today :) I recapped where I have been yet am hopeful today will help.

[selmaS]

AS with Chiari there r many Drs that do not know or understand EDS much the same way...how it affects us or that it can...and they r all too close minded to even consider it and look it up....ugh I am so sorry u went thru this.

Did u try those gel pads for in ur shoes to help with ur heals....I did all this yrs ago for my feet...I bought the gel pads for toe shoes....lol...I knew I needed something and I wasn't getting help either....I am not on my feet that much so I do not have those issues that much nemore.....