Saturday, November 27, 2010


Okay, this is going to be a very very bad weekend!!  I took my Actonel today which means starting any time now I am going to be in a lot of pain and in pure agony tomorrow no matter how many pain killers I take.  Also my 'brother' is supposed to be coming out tomorrow with his girlfriend (her first visit, his first in a few months) and that is a very stressful time for me and means hiding out in my room the entire time trying to stay come so the autonomic issues don't flare up big time.  Third is what I am really pissed off about.  A group that I made a website for decided to switch to some one else doing the updates.  I stated that was fine, I didnt like the behaviour of one member but let that go, but that if I was not doing the updates then they weren't going to be using my pages.  After not having heard anything about the site in close to a month as in what they wanted done with the forum, the email address and what they wanted as a temp page, I went to go on today to erase my files to find out that they somehow got the ftp password changed and have gone in and edited my pages.  I wrote to the three people in charge stating I was not happy and that I wanted my files removed and got a very hostile email from the one I was having issues with stating that I should stop bitching, they own the files not me and that he didnt think I should be getting paid anymore after this.  That if I had of been paying attention I would have noticed that he switched the passwords a while ago and something along the lines that if I had of been paying attention I would have noticed this but that was the problem with me doing the site anyways.  I could go on and on about this but it's just getting me even more pissed up thinking about it and I need to at least try to calm down a bit so I can get to sleep.  Good luck though as stress makes my heart and nerves and autonomic issues just skyrocket!!!!

Tuesday, November 23, 2010

New Joint Issues

Well since I have yet to bring over important posts from my old blog or set up pages describing my health and pain issues, here is a breif backstory about my bad joints.  I have not included the minor issues.  I consider minor issues as ones that I have not had to bring up with my rheumy, have had no tests done about and haven't gone for any testing, imaging or physiotherapy for.  Here's my list:
  • Right Knee:
    • 3 surgeries - Lateral Release, Scope & Debridment & a Lateral Reconstruction
    • Chondromalasia Patella and Severe Mal Traking
    • Chronic Tendonitis and Bursitus
  • Left Ankle:
    • Very unstable, flat feet, lack of ROM (pointing toes up only non-hypermobile joint)
    • Tendonitis and Bursitus
    • Ganglion Cyst on the Tendon
  • Left & Right Wrists:
    • Very Unstable, constantly dislocating wrist (left wrist being worse)
    • Carpel Tunnel Syndrome
    • Frequent dislocation in thumb (again mainly left wrist)
  • Right Shoulder:
    • 4 Corisone Shots (AC Joint twice, once for bicep tendonitis one for bursitus)
    • Bicep Tendonitis and Bursitus
    • Unstable, occasional subluxations possible dislocation a few times
    • Severe muscle spasms and 'pulling'
  • Cervical Spine:
    • Herniated Disc (non-surgical at this point but is causing lots of my pain)
    • Bone Spur / small bone fragments
    • Cervical Stenosis / Low spinal fluid
Well over the last month or so, most of these joints have deteriorated and pretty fast which is scarey.  The  right knee is as 'grumpy' as normal but thankfully no new issues.  My left ankle has also been causing issues, it feels so 'weak' that it feels like it's just going to crash out from under me one of these days and I'll be sitting on my butt when that happens (and hopefully dont reach to grab something to prevent my falling or that will just mess up my arms!) My left wrist is in a very bad state.  Had emergent xrays for possible fracture as pain has been so severe for such an extended length of time (going on a few months).  I have to have it braced at least part of the day and am starting to come to terms with that the wrist might just be unfixable at this point.  It doesnt stay in much (thankfully I can reduce it on my own so far!) and is just constantly in some state of pain.  What concerns me is that I have been using my right wrist so much that it is now starting to go our a few times a week (the right one goes out a few times a day!).  Right shoulder has been just as painfull as normal but sleeping on my nan's hard bed and the 3.5 hour travel on friday and sunday have not left it where it wants to be.  I am having severe muscle spasms right along the edge of the shoulder blade and keep feeling like I have to pull it up and forward to get it to feel 'right'.  The OS I saw about it stated that there was nothing wrong with the shoulder, it was all my neck.  My cervical spine is basically the same as well.  The long trip last weekend really did screw with it and I was in massive pain after the bumpy ride on friday (took max does of pain meds a few times as well as some OTC meds) and my bad headaches are coming back but that is to be expected.

No, what is really bothering me is the 'new' joints causing problems.  I was always happy to say that my elbows were perfectly normal and never caused problems (besides the obvious hypermobility) or pain.  Well in the summer I moved some weird way and heard a pop then I couldnt straighten out my arm.  Lots of ice, some Robax and some time and I was able to move it again and the pain was short lived.  Now this has happened quite a few times and is now causing some pain (minor compared to the other joints, but still hurting) with some movements and during pain flares.

The other main issue is my hips getting worse.  I have always had trouble with them, it just never surpased the other joint issues I had.  When I first met my Rheumy and told him that I had hip pain he put me on the spot saying "Where do you think your hip is", I showed him and he got surprised as apparntly most people with hip pain aren't actually having hip pain, however it showed us that I had legitimate hip pain.  Again with the traveling and hard bed they have been bugging me on and off for about a month (we did that same trip in october so had the traveling and bad bed then).  Well last night I was in bed after taking my pain meds and just couldnt sleep.  I went to move and heard a very loud 'pop' followed by tingly feelings down my left leg and up into my back.  It scared me! I didnt move for a good 5 minutes as I was worried what would happen.  I then slowly moved it and realized that the pain that I normally would have got from that movement didn't happen and when I woke up this morning I realized that all the normal day to day pain in that hip was also gone!  I dont think it has been fully dislocated this length of time but something was obviously not where it was supposed to be!

Well that ended up being a LOT longer than I had anticipated!!  But probably a good thing to have written down all together somewhere.  I will probably use this as part of a page of the different health issues I have.  In regards to this blog, if you know of someone who might be interested in it please feel free to pass it on to others.  I would love to get it into an EDS 'blog-ring' as it might help others, give me a place to vent about things that normal people have no clue about and just maybe there might be someone reading this that could have a few tips to make things better.

Monday, November 15, 2010

Neurologist Appointment

Well I saw the neuro (Dr. K) last tuesday.  It was not the best appointment but I guess, in reality, it wasn't the worst either.  Nothing figured out, just a few things ruled out and a suggestion.

Mom and I were called into the room and he sat in the little adjoining room and I joked that he was googleing EDS then we hear typing lol.  He comes in and asks about my neck and tinglingn etc.  He asked about tingling in my hands and I said that I did but it was hard to tell as I have also been diagnosed with Carpel Tunnel Syndrome.  He immediatly asks when I had the EMG done and I said never, it was just diagnosed with a physical and history as well as it being very common in EDS and that if I need surgery for it, I will be the third generation to do so (mom had both wrists done as well as my grandfather, my nan had surgery too but I am not sure if it was the same issue).  We then asked him if he had ever heard of EDS and he said that he knew it was a musco-skeletal disorder that didnt have neurological issues.  I brought up the chiari, tethered cord, autonomic issues as just some of the EDS related disorders that are neurological in basis.

He then wanted to do a full neurological work up.  Tunning forks, pricking the skin, rubbing something rough over my skin, checking my reflexes (he was very nice when he went to check the reflexes in my left knee and I quickly reached down to cover my knee and said no, when I explained about the bursa he said it was okay to skip the one joint (unlike the other neuro before)).  He had me follow a light with my eyes and then started 'manipulating' my neck and kept asking if doing something caused tingling or any changes.  I dont know how many times I told him that movement does not create any symptoms and most likely wouldnt becasue of the EDS (I had my full ROM almost the instant the knee imobolizer was taken off after surgery and had full ROM when I broke my finger).  He checked my wrists which was a bit of a sore spot for me as he had just seen that I had my wrist wrapped up, we had discused carpel tunnel and the dislocations and let me tell you, his full physical work-up was not gentle in the slightest!!

He then took me into the small room and showed me my MRI scans.  He showed me how there is no sign of chiari (very common in EDSers) and that yes I had a pretty bad herniated disc but it was not surgical at this point and the only treatment for it is to treat the pain that it causes.  There was mild stenosis near the herniated disc but not that would cause problems and there were no nerve impingments along the spine (cervical and thoratic was scanned).

So there is absolutly no structural issue that is causing the sweatings.  He also said that it was most likely autonomic but that he doesnt treat it.  He suggested trying Klonopin (sp?) for the sweating but I would have to be very carefull as it could drop your BP in sudden spikes and cause blacking out with the low BP issues.  He things my temperature issues are 'perceived' feelings and not 'actual' feelings.  Like my body perceives that it is cold but my body isnt actually cold.  He doesnt thing its the Hypothalomus (wow murdered that spelling!!) but never told us if anything could be done to check and make sure its a perceived thing and not a brain thing.  Regarding the swallowing issues, he did another work up of my gag reflex and stuff like that and said he saw no reason for it and if it was worrisome to me that he would suggest an barium swallow done.

The strange and unsettling thing though was that he would not write down the name of the medication that he was suggesting or the dose (thankfully I have read enough online to know which medication he was talking about), didnt even tell us why he wouldn't perscribe it and made no suggestion at all of a follow-up appointment.  When we asked again (you had to keep redirecting him as he was focusing on the herniated disc and not the sweating and possible other neuro issues) as to why I was only sweating from the waist up he gave the ultimate answer.  Ready for this.... I sweat only above the waist because that is where most of the body's sweat glands are!?!?!?!  We kinda took this as an answer until we got out and started thinking about it.  I know for sure that when I get hot I sweat behind my knees, and my feet sweat as well as my legs.  And when I get one of the weird sweats I don't sweat under my arms anymore than normal.  By the sounds of it he just thought I was having 'hot flashes' for some reason.  At this point I realized that he didnt really know what was going on so I just smiled and nodded a lot.

So, not much helped.  However, I was so resigned about this appointment, figuring that he would have no clue what EDS was or what was going on with me that I was able to walk out of the appointment with dry eyes and then mom and I picked apart what he said for the ride home.  So for now we aren't doing anything.  I am going to stay on the SSRI med for another 3 - 4 months to see if it kicks in and if there is no help then I will stop it and try this new med.  I figure there isn't much point to trying two new medications within a few months of each other and then not know which one (if any) is working.  We have now ruled out any structural damage causing the sweats, it may be contributing to it but it is not the cause so at least we have crossed another possible cause off the list.  I just wish we could circle that one cause so we could work towards a treatment and hopefully getting back to a semi-normal life.  Also going to ask my internist if she thinks if there is a benefit for me to have the swallowing test done.  I think I would like to have it done (even though I have heard its horrible) but it would put my mind at ease that there isnt something bad causing the decline and it would also serve as a baseline for later if it gets worse.

So now we are still up in the air.  Even though I am not going to try that med until later (if I acutally try it, from what I have breifly read it's in the same class as valium! as if I don't sleep enough!) I still need to discuss it with a doctor.  My internist (and now cardio) doesnt like perscribing non-heart related medications (she doesnt feel comfortable giving out medications that she is not up to date with, which I completely respect! I would rather that than some dr shoving unknown meds down my throat) and the reason that I am going to all these specialists is that my GP has already dropped the ball on this issue and I dont know if I want to rely on him for an issue he has no clue about. The one thing mom and I dont get is that we thought the body's nervous system was dealt with by a neurologist but this guy made it sound like that wasnt his area.  I guess it's just back to the internist to see what the next step (if we even have one) is.