Ouch!
I've dislocated ankles, wrists and even a hip before. My mom even referred to one shoulder as "permanently dislocated." But this is the first time it has ever hurt THIS much!!
Looks like what happened is I weakened the elbow doing yard work, such is the nature of spring. Then I made the mistake of reaching for something on the table and was hit with an amazing wave of pain! I iced it, rested it, checked it out and knew it had dislocated and managed to reset it a day later, but the pain wouldn't go away.
After another day I called my Dr, and he sent me to an orthopedist. The ortho found that I had reset the elbow but managed to seriously pull the muscles and tendons around it until the elbow was so weak it keeps slipping - hence the continual pain.
He wrapped it and had me measured for yet another brace. This time it is a compression brace, from the same company that makes the shoulder brace I have had wonderful luck with. I'll wear the brace (once it arrives) for several weeks so the elbow can start healing, then begin yet another set of strengthening exercises. At least it wasn't too serious (I was afraid I was finally facing surgery and pins - pushed that one off a while longer :-) )
Wednesday, April 29, 2009
Friday, February 6, 2009
Taking Winter One Day at a Time
I wish I could say that things are getting easier. At least it seems that EDS is getting more manageable.
I think the biggest help has been in the area of pain management. If I can keep my pain under control then I don't seem to have as many episodes of clumsiness or exhaustion. What is seeming to help the most are little things that I wouldn't have expected to make such a big impact.
For example, keeping a pair of thin knit gloves around and remembering to wear them whenever I go out (even if just to take out the trash). For longer excursions outside or even driving I have found that Isotoner gloves are amazingly comfortable, keep my hands warm and even help stabilize the loose finger joints. Now, if I could just find a pair of gloves that allow me to operate the latch on my dog's leash!
Another thing that is helping is to remember to rest. Sounds silly, but the little change of stopping and lying down for 30 minutes instead of pushing through until I complete something works wonders! I am only able to do this on the weekends, but it helps enough right now that my pushing through the work week isn't leaving me as worn out by Saturday as it used to.
I think the biggest help has been in the area of pain management. If I can keep my pain under control then I don't seem to have as many episodes of clumsiness or exhaustion. What is seeming to help the most are little things that I wouldn't have expected to make such a big impact.
For example, keeping a pair of thin knit gloves around and remembering to wear them whenever I go out (even if just to take out the trash). For longer excursions outside or even driving I have found that Isotoner gloves are amazingly comfortable, keep my hands warm and even help stabilize the loose finger joints. Now, if I could just find a pair of gloves that allow me to operate the latch on my dog's leash!
Another thing that is helping is to remember to rest. Sounds silly, but the little change of stopping and lying down for 30 minutes instead of pushing through until I complete something works wonders! I am only able to do this on the weekends, but it helps enough right now that my pushing through the work week isn't leaving me as worn out by Saturday as it used to.
Wednesday, June 4, 2008
Another Fall
I fell again yesterday. This time I landed on the inside of my left knee and managed to damage not only that knee but the ankle, hip, left hand and elbow. I thought I didn't hurt too much this morning, but became light-headed at work and was sent home by the nurse. I see my doctor in about a half an hour to see if I did more than just bruise and to figure out what to do about the pain.
Wow, I hurt! I braced my ankle to try to stabilize my knee and hip (since my latest new knee brace slips after less than an hour of wear). I am limping a bit straighter, at least. If I sit too long my back hurts. If I stand my leg, especially the knee, hurts. Lying down causes all of the joints wrenched in the fall to throb. Any suggestions?
I have also started writing about EDS (as well as other topics). I had this need to spread the word, and was accepted as a writer for an online magazine called Suite101. You can read my EDS articles (yes! I'm a published author!) here:
and here:
Wow, I hurt! I braced my ankle to try to stabilize my knee and hip (since my latest new knee brace slips after less than an hour of wear). I am limping a bit straighter, at least. If I sit too long my back hurts. If I stand my leg, especially the knee, hurts. Lying down causes all of the joints wrenched in the fall to throb. Any suggestions?
I have also started writing about EDS (as well as other topics). I had this need to spread the word, and was accepted as a writer for an online magazine called Suite101. You can read my EDS articles (yes! I'm a published author!) here:
and here:
Tuesday, March 4, 2008
I'm Still Around
Winter is an interesting time. I find that days and weeks literally disappear. I realized today that it is March, and am not really sure where January and February went! Much of it is due to keeping busy with children and the seemingly endless array of winter storms, but I know now that pain is a major factor.
When you hurt and, like me, become very good at ignoring it your days become a blur. You do what you have to do and occasionally realize that the world is continuing around you. From time to time I realize it is happening, but feel helpless to do anything about it. Even resting can be a challenge when lying down becomes uncomfortable after about 8 hours.
With EDS if you fall or even just slip then you are risking soft tissue damage. One doctor described it to me as microscopic tears in the muscles and ligaments. Once this small damage occurs the pain can set in, and without lots of sleep and rest your tissue is going to take longer to heal. What a catch 22 that to heal you must rest but resting is so uncomfortable you must get up and move, thus leading to potentially more damage! Let alone the fact that your collagen is genetically damaged and it takes longer for your body to heal (even with rest).
Laughing at the irony is sometimes my only defense.
When you hurt and, like me, become very good at ignoring it your days become a blur. You do what you have to do and occasionally realize that the world is continuing around you. From time to time I realize it is happening, but feel helpless to do anything about it. Even resting can be a challenge when lying down becomes uncomfortable after about 8 hours.
With EDS if you fall or even just slip then you are risking soft tissue damage. One doctor described it to me as microscopic tears in the muscles and ligaments. Once this small damage occurs the pain can set in, and without lots of sleep and rest your tissue is going to take longer to heal. What a catch 22 that to heal you must rest but resting is so uncomfortable you must get up and move, thus leading to potentially more damage! Let alone the fact that your collagen is genetically damaged and it takes longer for your body to heal (even with rest).
Laughing at the irony is sometimes my only defense.
Monday, October 15, 2007
Yoga Therapy
Some of you might think I am a bit crazy but I am really enjoying yoga therapy! I did not know what to expect, but now that I am in the midst of it I really like it.
Most people know yoga as stretching. I knew it as stretching, strength, and breathing. I now know it has a meditation and healing side as well. My therapist, Mary, is trained in using the Chakras for healing. Chakras are the seven energy points formed by our own energy (or conciousness) according to ancient teachings. She is helping me to balance my Chakras through meditation, mantras, and relaxation. If you want an idea about all of this, try this youtube link for a video of Yogi Bhajan: http://www.youtube.com/watch?v=3gG2jBJgkK4 .
I am, today, 18 days into a 40 day cycle. So far I am not experiencing less pain but am finding that I am managing it better. I am more relaxed and more aware of what is going on around me, especially more aware of what triggers the discomfort. The breathing exercises really have helped - especially when my shoulder brace broke and several days later I was in so much pain I went to the hospital. I find that I am now more inclined to slow down and relax instead of becoming tense and upset. I know this is just a start and there is much more for me to learn and try, but if all I get out of the therapy is the ability to manage the discomfort and pain without resorting to pain killers, then it is definitely worth it!!
Most people know yoga as stretching. I knew it as stretching, strength, and breathing. I now know it has a meditation and healing side as well. My therapist, Mary, is trained in using the Chakras for healing. Chakras are the seven energy points formed by our own energy (or conciousness) according to ancient teachings. She is helping me to balance my Chakras through meditation, mantras, and relaxation. If you want an idea about all of this, try this youtube link for a video of Yogi Bhajan: http://www.youtube.com/watch?v=3gG2jBJgkK4 .
I am, today, 18 days into a 40 day cycle. So far I am not experiencing less pain but am finding that I am managing it better. I am more relaxed and more aware of what is going on around me, especially more aware of what triggers the discomfort. The breathing exercises really have helped - especially when my shoulder brace broke and several days later I was in so much pain I went to the hospital. I find that I am now more inclined to slow down and relax instead of becoming tense and upset. I know this is just a start and there is much more for me to learn and try, but if all I get out of the therapy is the ability to manage the discomfort and pain without resorting to pain killers, then it is definitely worth it!!
Sunday, September 16, 2007
Physical Therapy
I went through 6 weeks of physical therapy for my major joints (shoulders, hips, knees, elbows). I had detectable improvement in most joints - including my ankles. My PTs and I decided to brace one shoulder and one knee since no matter what we tried I could not keep my shoulder in place nor my knee from bending backwards.
The braces are interesting to live with. The shoulder brace is designed for stroke patients who have lost the use of an arm and need to keep from subluxing the shoulder. It works really well, and even (almost!) eliminated the tension and pain from my neck and shoulder blade! Problem is, since I can still move my arm, it has started to rip. The knee brace has special straps we adjusted to keep my knee from bending backwards. It was interesting to watch me walk for the first 4 weeks of use; I felt like I was learning to walk again.
Though the braced joints are strengthening, I have had problems with my skin. If a brace slips and pinches, then I have bruising that not only hurts under the brace, but seem to not want to heal. On two separate days the heat index climbed past 100 F and I developed a heat rash under both braces. I have started going "brace free" on Sundays to try to promote healing of my skin because in both areas it is now red and blotchy and not wanting to heal. Realizing that the rashes are also itchy and when braced you cannot reach the skin to scratch . . . I've started looking for other options.
I could continue with PT, but it is impossible to go while holding my job. I would have to take a day off twice each week for a half hour PT session. Since I have participated in Yoga on and off since college I know that it is not just about flexibility but many forms also promote strength. I started calling around to find a studio that had an instructor who held afternoon or evening classes and would be comfortable working with my challenges. One of my PTs suggested a studio his wife recently started at, which is actually located between my work and home. The head of the studio had me speak with one of her guest instructors who is a Yoga Therapist. I had not previously heard of a Yoga Therapist, but called and was impressed. This woman specializes in using Yoga to heal the body and believes, with the help of her colleague who is a doctor who specializes in naturopathy, that she can help further strengthen my joints and significantly reduce the pain and fatigue. I've agreed, and will have my initial session next week.
More later!
The braces are interesting to live with. The shoulder brace is designed for stroke patients who have lost the use of an arm and need to keep from subluxing the shoulder. It works really well, and even (almost!) eliminated the tension and pain from my neck and shoulder blade! Problem is, since I can still move my arm, it has started to rip. The knee brace has special straps we adjusted to keep my knee from bending backwards. It was interesting to watch me walk for the first 4 weeks of use; I felt like I was learning to walk again.
Though the braced joints are strengthening, I have had problems with my skin. If a brace slips and pinches, then I have bruising that not only hurts under the brace, but seem to not want to heal. On two separate days the heat index climbed past 100 F and I developed a heat rash under both braces. I have started going "brace free" on Sundays to try to promote healing of my skin because in both areas it is now red and blotchy and not wanting to heal. Realizing that the rashes are also itchy and when braced you cannot reach the skin to scratch . . . I've started looking for other options.
I could continue with PT, but it is impossible to go while holding my job. I would have to take a day off twice each week for a half hour PT session. Since I have participated in Yoga on and off since college I know that it is not just about flexibility but many forms also promote strength. I started calling around to find a studio that had an instructor who held afternoon or evening classes and would be comfortable working with my challenges. One of my PTs suggested a studio his wife recently started at, which is actually located between my work and home. The head of the studio had me speak with one of her guest instructors who is a Yoga Therapist. I had not previously heard of a Yoga Therapist, but called and was impressed. This woman specializes in using Yoga to heal the body and believes, with the help of her colleague who is a doctor who specializes in naturopathy, that she can help further strengthen my joints and significantly reduce the pain and fatigue. I've agreed, and will have my initial session next week.
More later!
Thursday, June 28, 2007
Update
It has been a while, but I now have some more information. Unfortunately answers will probably never be available due to how little is known about EDS.
It is now believed that my sister either had Vascular or Classical. I present with either Classical or Hypermobile. My test for Vascular came back as negative, but there is a 1 to 2 percent chance of error. This leads my geneticist to believe I most likely have Classical since types run true in a family. Also, Classical can present differently in family members - with stronger manifestations in different affected areas. That would allow my sister to have more vascular symptoms and myself more flexibility. Problem is there is currently no way to genetically test for Classical and, until another family member has a diagnosis, no one else to whom I can be compared. So, we decided to err on the side of caution and list me as EDS-Vascular (just in case that 1 to 2 percent chance has hit me).
What does this mean? I am ordering a new ID bracelet and will notify my local EMS services of my condition since I will need special treatment in a trauma situation. I will have an echocardiogram every few years. I have been instructed for specific vascular complications to watch for - especially pain in my chest or between my shoulders - and to get myself immediately to an Emergency Department if it happens. I have to work on strengthening both my heart and my muscles. Yea for physical therapy! Since I am still considered young and my heart shows no complications I am to push myself so that, if complications arise, I will be better able to survive. My children show mild signs and we have decided not to diagnose them unless these signs and symptoms are more persistent.
Well, that's it in a nutshell. I'll be posting less frequently now but will still use this blog to post anything interesting or newsworthy about my progress.
It is now believed that my sister either had Vascular or Classical. I present with either Classical or Hypermobile. My test for Vascular came back as negative, but there is a 1 to 2 percent chance of error. This leads my geneticist to believe I most likely have Classical since types run true in a family. Also, Classical can present differently in family members - with stronger manifestations in different affected areas. That would allow my sister to have more vascular symptoms and myself more flexibility. Problem is there is currently no way to genetically test for Classical and, until another family member has a diagnosis, no one else to whom I can be compared. So, we decided to err on the side of caution and list me as EDS-Vascular (just in case that 1 to 2 percent chance has hit me).
What does this mean? I am ordering a new ID bracelet and will notify my local EMS services of my condition since I will need special treatment in a trauma situation. I will have an echocardiogram every few years. I have been instructed for specific vascular complications to watch for - especially pain in my chest or between my shoulders - and to get myself immediately to an Emergency Department if it happens. I have to work on strengthening both my heart and my muscles. Yea for physical therapy! Since I am still considered young and my heart shows no complications I am to push myself so that, if complications arise, I will be better able to survive. My children show mild signs and we have decided not to diagnose them unless these signs and symptoms are more persistent.
Well, that's it in a nutshell. I'll be posting less frequently now but will still use this blog to post anything interesting or newsworthy about my progress.
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