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Ehlers-Danlos Syndrome User Group
bursitis
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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bursitis

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:)
25 Comments
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1903798_tn?1333908888
Oh and I failed to mention that rheumatologist told me exercise will make me feel worse as my joints are unstable and unlike NL told me not to stretch!  Thank you because when I am told to exercise I want to cry because if I could exercise I would not be at the Dr.  My husband keeps telling me I need to sell my bike and I keep saying no I want to ride it LOL.
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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.....
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He was much better today :) I recapped where I have been yet am hopeful today will help.
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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.  
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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
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New treatment has me cautiously optimistic!  This was the best pain day I have had in a long time!!!
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  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....
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Yeah I'm going to have to shop...the foundation has to be really good too...I get that shooting nerve pain between toes and arches are collapsing
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  I always liked White Mtn shoes....and another brand I can not remember the name but a nice soft spongy sole....perfect for my achy feet....lol....airesoles or something like that....

When I was young, teens I used to wear boon-dockers...high top work boot...they were sooooo comfy but not fashion forward at all.....
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yeah I have tried white mountain, born, and last is clark...nothing helps but Dr said it is because loose ankles have caused heel tendonitis, bursitis, and I have heel spurs.  I did buy ankle "braces" today that can go down in my shoe to see if that will help....
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Okay so "high" I was referring to ankle and that is not how the tennis shoe supports the ankle.  Next time I need more clear pictures.  I decided to buy ankle supports and wear my dress shoes.  Well that didn't work and ankle supports were pushing on Achilles and tearing skin...no good.  Then I was trying to get out of my car and Achilles hurt so bad that I rocked back and smacked the back of my head on the car door frame...not good for a chairian...it hurt so bad I thought I was going to throw up!  Well I went to Elite shoes that specializes in watching you walk and fitting shoes the day before I hit my head.  When you go to this type of store they recommend shoes and you loose the option of looking for certain colors or cute shoes.  I left there with Brooks Dyad being the best option and wanting to cry over how ugly the sole was and that it was going to look horrible with my dress clothes.  It is not the highness of the ankle of the shoe that supports the foot but the way the base supports your foot.  I know now that my ankles roll on the outside.  The base of this shoe is wider and very supportive.  (it does feel nice to walk on)  So after hitting my head I went to another store that specializes in the same thing Gary Gribbles...guess what it came down to the same darn recommendation.  So I bought the ugly shoe.  Since my Dr wrote a note for me to wear them to work I did yesterday...1/2 way through my work shift I wondered where my ugly shoes had been my whole life.  It even felt like my hips were staying in a better location probably since the ankles were staying in a better position...I just wanted to share an update:)
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Ugh it seems like there is a period with every medication change that there is a couple days where there is great improvement and back into the pain cycle...
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I am not familiar with either of those shoes...I will have to google them as I have searched high (sorry about the pun) and low for shoes that would help me as well as help my poor feet....lol...I would always carry a bag with a 2nd pair of shoes to work to change them...thinking I just needed to change them during the day to help....ugh...what a going on...as a child my mom hated taking me for shoes they all hurt....lol....

  SO which brand did u get?
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The company is Brooks and the style is Dyad
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  SO they r sneakers?
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Yes my rheumatologist said with my foot problems .... Sneakers .... wonderful with dress clothing
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  aww I thought I was looking at the wrong shoes,...lol....

Were they expensive? I have a pair that were $300.00....I did not pay for them.....but was happy to accept them from someone that could not wear them.....only I can not stand the tight feeling from tying the shoe, the tongue bothers me...always has with sneakers....not sure y....
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No they only are $110...the key is they were recommended for me based on the way I walk.  They might not be good for someone else.
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  Gotcha.....so where do u go to find out the way u walk and the best shoe?
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I found them on the internet and then made some phone calls.  Punch in the city you live in and running shoes and make some calls:)  I hope that it helps!  I'm so tired...having a rough week.  It is really hard to mentally make yourself get up and go when your body really is telling you to lay down and quit.  Yuck!  Time to get in the shower and go to work:(  I want to pull the blanket over my head and cry.
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  Are u back to full time? The job u have is so demanding, I know I worked retail in a dress/coats/swimwear dept...it is crazy hard work....just the dressing rooms alone, then days u get in new stock...ugh....I remember how hard it was for me to push thru back then, I can not imagine doing it post op.....even if I had the surgery when I was younger....

I meant how did u find out which type of shoe was best for u.....did a Dr tell u?
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He told me I need supportive tennis shoes and I went to the store that watches how you walk and make recommendations (2 of them).  I have been full time since April when I went back 8 weeks post op...so last 7 months.
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  well what store does that??? There r no real shoe stores nemore, it is all self serve....not sure there is one here that would do that ....is it a chain?
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The 2 I went to are elite feet and Gary Gribble
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  DO not think we have either of those around here.....lol...as I never heard of them
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