Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Thursday, February 3, 2011

Dislocations, anxiety...and am I a wimpy EDSer?

When my ankles first started subluxating bad enough hat I couldn't walk from where I was and I couldn't get them back in myself, I started going through a lot of anxiety.  If DH isn't home then what do I do?  I'd have to sit there waiting for him to come home so that he can get my put my ankles back where they are supposed to be.  I had a complete dislocation at my knuckle of my ring finger the other day.  I couldn't get it in myself, in fact I couldn't look at it for long because it made me quite nauseas.  DH looked up on the internet how to put a finger back in.  So far my only finger dislocations have been the first joint toward the end of the finger.  They were easy to get back in.  This time my finger came out when I was trying to make the Vulcan sign.  Ah, just another reason why Star Wars is better than Star Trek!  lol  DH put my finger back in while I turned my head and then he described what he did afterwards.  What kind of EDSer am I?  I not only can't get my joints back in but seeing one out makes me want to throw up!  I don't know if all EDSers feel that way at first or not.  I'm really worried about the time when large joints start dislocating.  My small joints are doing it now.  A year ago I occasionally had a small joint subluxate.  Now I have them dislocating and large joints are subluxating.  Why is it speeding up so fast?  I really want to get into my PT program (I am supposed to do hydrotherapy) but I want to wait until the blizzards are over.  Last time they said I only needed 30 days of PT and if they canceled on me or if I moved my appointment because I was in a flare then it still only counts as 30 days.  At the end of those 30 days you are cut off from PT.  From what the doctor said, most PT office's don't do things that way.  I do kinda wonder at the assessment they gave me...30 days?  I mean come on!


  1. I don't understand the point of short term PT for EDSers and other chronic pain patients. It makes sense to do a month or two of PT to recover from an injury maybe... but for us PT needs to be a life-long thing! I know that no insurance company is going to pay for that, but what are we supposed to do?

  2. My fiancée, who also has EDS type III hypermobility, was fortunate enough to be able sign up for a "transitional swim" program at a local physical therapy facility. The "transitional" means that she has transitioned from being under the supervision of a physical therapist and now does self-directed exercise in the (heated) pool. The pool has a rope divider down the middle and the transitional people do their thing on one side while the therapists work with patients on the other side. She still has access to all the equipment, as well as the staff for any questions she may have.

    She gets financial aid from the program and pays $25 per month. She gets two time slots per week of one hour each. It has helped her enormously to have this exercise that is appropriate for her condition. It gives her stamina she wouldn't otherwise have, and benefits her psychologically as well. Perhaps there is a similar program available to you?

    It's very important to be your own advocate and be clear with the medical/therapy system what you need from them. Stand up for yourself and find allies (family, friends, partners, doctors, therapists) who will also stand up for you! This is YOUR life, afterall, not anyone else's. Other people don't know what your day to day suffering is like. It is so easy for those who do not really understand EDS to dismiss it. (She looks fine, she must not really need physical therapy!) We, however, know it is very real.

    Doctors and physical therapists are there to serve YOU. Tell them what you want and need. Be polite, but also be firm and find a way to make it happen. If you make it clear to your doctor that you need extended physical therapy, then she should be happy to help you get it. Remember that not all doctors are created equal. If your doctor is not going to bat for you, find a better doctor. We found it really paid to find a more sympathetic doctor than the one we started with. You may also find better help from specialist doctors. My fiancée has better rapport with her rheumatologist and OB/GYN than her GP.

    I wish you all the best. From a fellow Star Trek fan, live long and prosper!


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