More poison

Last Wednesday we did another round of Botox injections. On an (high) average I'd say I got about 30-40% improvement during the middle bit. The first two weeks were horrid and after a few weeks I started to get bad again.
I've also discovered that I do much better when I'm not sitting in front of a desk all day. Anyone hiring tour guides for England? I felt pretty good when I was over there moving around a lot more during the day. Granted I was extremely blessed with optimal weather a well.
Anyway the Botox. We did three vials instead of two this time, seven injections total into different areas in my neck an shoulder. After I felt like I still had the needles in me for hours. The injections are pretty deep at least they feel it. They also anger my muscles and I've been getting progressively worse since Wednesday.
Last night was the worst so far. Complete meltdown with the pain. I kept trying to do all normal things as if I wasn't in tons of pain this weekend so perhaps that didn't help. I did go to the gym on Friday and actually felt a litle better after though it didn't last very long. I tried heat and ice yesterday bit I don't know if they helped or hindered. I also used the massage chair when I was getting a pedicure. It was mostly on my lower back and it felt good. No idea if that helped or hindered or had no effect at all.
At present on my way to work with the intention of going to the gym at lunch. Even if it is only for a bit I have to try.
Going to try to keep a better record this time because I didn't last time and it was hard to recall things months later.
Also my right hand where my last surgery was has been inflamed the last few days. Perhaps it's all connected. If only my right side felt like the left side of my body. It's so strange how one half dying in pain and the other barely so.

Having a rough time of it and came across this site. Seemed to have some good advice even though I know it good to refresh.
http://www.overcomingpain.com/10steps.html

So You Think You Might Have EDS?

After reading this I was amazed how many things add up. Before my diagnosis I was made to think I just had tons of random things wrong with me, but when I look at this, it all fits together like a puzzle. But if you do have many of these, or even some, you must get diagnosed by a genetic doctor. If you need a referral for one in NYC I have a great one.

By Sue Jenkins RN with contributions from Liza Sauls (from www.ednf.org)

It has been the experience of many of our members that a final diagnosis of EDS is the result of 'connecting the dots' of a person's history and a comprehensive review of the constellation of all symptoms; and includes, for many, thorough review of the medical histories of their families as well. Finally getting the diagnosis can be a relief to know that the symptoms are real and have a name; however limitations occur here as well. There is no cure, no 'fix', simply because the collection of experiences and symptoms now has a name and identity. But it does allow the patient and their families to know what they may be facing and allow them to become educated and proactive about the care they seek and require.

Based on the accumulated experiences of our members, the following essay is an overview of many of the symptoms and conditions that can be associated with EDS. It is not meant as a substitute for thorough medical review and care and supervision, but to help to view some aspects of EDS. Not every patient will have every symptom, as you will see, EDS can manifest in many different ways.

The challenge of EDS is not to be able to identify each symptom, but to be able to see a pattern among several.Early diagnosis and intervention are the keys to living the best life possible. With the recent TV programs on Ehlers-Danlos Syndrome, many people are coming to this website with questions about having EDS. Here is a list to help you determine if you need to see a geneticist who can correctly diagnose you.

Caution: If after reading the following article, you think you may have EDS, be sure to seek medical advice.

Please do not rely solely on this article or end your search with a self- diagnosis. EDS is a genetic syndrome and is diagnosed by a specialist, usually a geneticist or rheumatologist with extensive knowledge about EDS and its types:

• Classical
• Hypermobile
• Vascular
• Kyphoscoliosis
• Arthrochalasia
• Dermatosparaxis

Ehlers-Danlos Syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, eyes and other organs. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos Syndrome, which vary from mildly loose joints to life-threatening complications related to tissue structure and fragility.

A physical examination is required, including taking an extensive family history and using the Beighton scale, which measures Hypermobility. Depending on which type of EDS the physician believes you have, eithera blood test or muscle biopsy will be taken.

How You Get It:
EDS is a genetic disorder, a mutation of one or several genes that make different types of collagen in your body, producing a defective tissue. A mutation in a gene on one of the first 22 nonsex chromosomes can lead to an autosomal disorder. Genes come in pairs.

Some types of EDS are autosomal dominant and others are autosomal recessive. Differing types of EDS affect different types of collagen.

• If a disease is autosomal dominant, it means you only need to get the abnormal gene from one parent in order for you to inherit the disease. One of the parents may often have the disease. Each child has a 50/50 chance of inheriting this disease.

• Recessive inheritance means both genes in a pair must be defective to cause disease. People with only one defective gene in the pair are considered carriers. However, they can pass the abnormal gene to their children.

Wrong Diagnoses:
Most people diagnosed with EDS have come the same long road where it seemed that nobody knew what was really wrong with you. Diagnoses of

• osteoarthritis
• fibromyalgia
• lupus
• rheumatoid arthritis
• rheumatic fever
• multiple sclerosis
• “growing pains”
• and “it’s all in your head” are just some of them

Often people get several misdiagnoses before finally being correctly diagnosed with EDS.

Symptoms of EDS:
Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type and severity. An unusually large range of joint movement, hypermobility, occurs with most forms of Ehlers-Danlos syndrome, particularly the HEDS (hypermobility) and CEDS (Classical) types.

Below is a listing of symptoms that persons with EDS often have. These symptoms are broken down according to body systems. This list is not all-inclusive, but include those most frequently encountered.

Not everyone with EDS has them all and if you have some of them you may still not have Ehlers-Danlos Syndrome.

Joints:
• Different types of EDS have differing degrees of joint problems. Joint dislocation and incomplete dislocation called subluxation is common and recurrent.
• Spontaneous easy reduction or replacement of the finger digits and shoulders occurs.
• Hypermobile joints cause pain, and sometimes the "cracking" or "popping" of them feels like it relieves the pressure.
• ‘Pes planus’ or being flatfooted is common and feet can flatten even more as one ages.
• EDSers can develop osteoarthritis earlier than typical, and they often have difficulty or pain walking. They can appear klutzy.
• Some EDSers’ hands collapse from the pressure of a simple handshake. It is difficult to write, and often finger splints help a great deal.
• Cervical (neck) instability occurs in some types, and some people may have trouble holding up their head.
• Another frequent joint problem is fluid effusions into the knees, ankles and elbows, primarily in Classical or Kyphoscoliosis types. (effusion: The escape of fluid from the blood vessels or lymphatics into the tissues or a cavity)
• In the Kyphoscoliosis type, many infants have severe muscle hypotonia (floppy babies), generalized joint laxity and scoliosis at birth, or develop a progressive scoliosis (a curvature of the spine) within their first year of life.
• With Vascular EDS, joint hypermobility may be limited to the small joints of the feet and hands or may be very lax all over. As with other types, VEDS patients often are first diagnosed as hypermobile, only later learning that they have VEDS!

The range of hypermobility differs greatly among EDSers, even within types. The loose joints throughout life are unstable, prone to subluxation and dislocation, cause chronic pain and early-onset arthritis. Some people are only mildly affected by their EDS; others are completely debilitated.

Orthopedic procedures to stabilize or improve the joint's function sometimes put more than expected strain and stress on adjacent joints, leaving many EDSrs disappointed with the results.

So your back, hips, shoulders, knees, elbows, and other joints go out more often than you do, you might have EDS.

Skin: General EDS skin traits include:
• Easy bruising, delayed wound healing, differing types of scarring.
• Thinner skin than normal, especially in the Vascular type.
• Those with VEDS have translucent skin where the blood vessels below are clearly visible.
• Soft, velvety skin that is fragile and sometimes highly elastic (stretchy) is found, especially in the Classical type.
• Classical type EDS may experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic shallow "cigarette paper" scars.
• Surgical incisions may present problems with healing, with stitching EDS skin sometimes described as "like sewing butter." Often requiring sutures being closer together and left in for a longer time than usual.
• With severe CEDS, even just leaning on the table with your elbows can cause the skin to split or may have molluscoid pseudotumors on elbows and knees. (molluscoid pseudotumors are small, spongy tumors consisting of fat surrounded by a fibrous capsule found over scars and pressure points).
• Skin that sags and wrinkles is characteristic of the Dermatosparaxis type of EDS. Extra (redundant) folds of skin may be present as affected children get older.
• Skin hyperextensibility to some degree occurs in all types of EDS except Vascular.

So your skin has so many bruises people think you earn your living as a boxer, you might have EDS.

Cardiovascular:
• People with EDS tend to have low body temperatures, may have trouble controlling their body temperatures when exposed to heat or cold, and many have blood pressure problems.
• Some have dilated aortic roots, incompetent heart valves, and autonomic dystonia or POTS (a syndrome where you have wide and serious blood pressure swings with position changes).
• Many people with EDS bruise very easily and often severely. It can be difficult for a medical professional to "feel" their pulse.
• Mitral valve prolapse is not a sign of EDS, though someone with EDS may have MVP; it is not diagnostic for this syndrome.

In some types, arteries including the aortas are very fragile and can rupture causing a medical emergency.
Note: IV (intravenous) access and even sometimes simply drawing blood for testing may require multiple attempts; using a "butterfly" needle and syringe is much more successful than the use of a vaccutainer which draws the blood rapidly by the use of suction. People with this concern must use extreme care and inform their healthcare providers of these possibilities.

Neurological Symptoms:
• Poor balance, severe headaches including migraines .
• Decreased deep tendon reflexes.
• Intracranial vascular abnormalities.
• Brain "fog", a sense of not being present; absence of focus or a lack of clarity
• Spinal stenosis (narrowing of spinal column) and/or scoliosis.
• Chiari malformation (the brain tonsils protrude down through the forum at the base of the brain) occurs in some EDS patients.

So you had a school report card that said you were fidgety, uncoordinated, lazy, under-developed, and a complainer, you might have EDS.

Dental:
• Half of all EDS patients have a hypermobile tongue, and are able to touch at least the end of their nose with it easily.
• A high palate and crowded baby and adult teeth are common, even though many EDS patients have smaller than normal teeth. The high palate and smaller teeth can make fitting dentures very difficult even when explained to the dentist prior to the dentures being made.
• Pre-molar and molar teeth often have high cusps and deep fissures with root problems, and enamel hypoplasia can cause decay and possible early extractions. Sometimes teeth actually crumble when losing the enamel.
• Patients with Classical type offer suffer with juvenile periodontal disease. All EDSers are cavity prone, and have increased bleeding from anywhere in the oral cavity due to the fragility of tissues. Braces can cause problems as they can damage the gums and tongue while moving teeth quickly.
• TMJ (tempomandibular joint) pain and clicking occur in about 30% of the general population, and about the same incidence occurs in EDSers. Often if in a dental chair with your mouth open for an extended period of time, the joint will repeatedly sublux. Taking a pillow so you can prop your hand up to support your jaw during the procedure will prevent it from happening and also reduce your pain level from TMJ.
• Studies have proven that lidocaine (a local anesthetic used during dental procedures) often works poorly or not at all with EDS patients.
• Some people with EDS complain of always feeling like there is a lump in their throat when swallowing, and often have other swallowing and voice problems.

So a dentist ever gave you so much Novocain that his thumb was numb, and you could still feel everything, you might have EDS!

GI system:
Gastrointestinal complications of EDS run literally from one end to the other. Frequently EDSers suffer from reflux and GERD, stemming from an incompetent esophageal sphincter that allows stomach acid to backflow up the esophagus and cause burns in it. Diverticula have been seen throughout the G.I. tract.
• Tissue extensibility and laxity can also cause lack of contraction of the stomach, causing food to not move down into the intestines.
• Megacolon and rectal prolapse may also occur, primarily in childhood but megacolon is also seen in adults. (Megacolon is an abnormal dilatation of the colon (a part of the large intestines) that is not caused by mechanical obstruction. The dilatation is often accompanied by a paralysis of the peristaltic movements of the bowel.)
• Irritable bowel syndrome is a common co-diagnosis. Constipation can result from the flaccidity of the large bowel, more water being pulled from the stool the longer it remains in the colon, and from pain medications.

So your favorite foods are your digestive system’s LEAST favorite foods, you might have EDS.

Eyes:
An EDSer may have many different eye problems depending on the type of Ehlers-Danlos they have including blue sclera, microcornea (very small cornea), epicanthic folds, and wide-spaced eyes. Other common problems are:
• Many EDSers are photophobic, some squint causing an "angry" appearance and angiod streaks.
• Loose tendons and ligaments around the eye create hard working muscles that get tired. Strabismus is the medical terms for eye conditions commonly called by these various names: eye turns, crossed eyes, cross-eyed, wall-eyes, wandering eyes, deviating eye.
• Myopia (near-sightedness), astigmatism, and early presbyopia (a vision condition in which the crystalline lens of your eye loses its flexibility, making it difficult to focus on close objects.) occur often in EDS patients.
• Dry eyes are a common and uncomfortable problem.
• Other EDS related problems are detached retinas and ectopia (displaced) lenses.
• Persons with Ehlers-Danlos syndrome should see an Ophthalmologist annually so the internal eye can be checked for retinal and lens problems among other things. This is not an O.D, a Doctor of Optometry, but an MD with a specialty in eye issues.

Even during an eye exam, the exam itself can cause vertigo, nausea and headache feeling much like carsickness in some people.

* So you change your eyeglass prescription more often than your wardrobe, you might have EDS!

Pain: Pain with Ehlers-Danlos syndrome can range from none to chronic debilitating pain. It is subjective, individual, and different for each of us. For many patients, this is the worst symptom of all!Causes of this pain can be repeated trauma of constant instability from recent subluxations and dislocations as well as degenerative joint disease. Sometimes poor posture brought on by lax ligaments and weak abdominal muscles cause increased pressure on the spinal joints. Some with EDS do not have pain; others develop it later in life, and others begin to suffer severe pain as children.
• Many things are useful in treating EDS pain such as heated pools (92-94 degrees), gentle stretching, walking (if your joints allow), and emotional support that recognizes the degree of your pain and is non-judgmental.
• Occupational Therapists who make splints and assess what you may need may help to make daily life easier. Heat and cold packs help a lot. Always use cold for the first 24 hours after an injury to decrease swelling and limit bleeding into the area, and then switch to heat.
• Other possibly helpful things are yoga, relaxation therapy, massage, acupuncture or acupressure, diversion, TENS units and chiropractic maneuvers by a knowledgeable chiropractor.
• Common pain management problems are related to medications either in a too low a dose or prescribing the wrong medication, overemphasizing risks, using a "cookbook" approach, patients refusing helpful medications because they worry about addiction, and doctors afraid of prescribing because of their misunderstanding of the DEA laws.
• Often pain is undertreated in children, the elderly, and minorities. Less than 2% of all chronic pain patients (not just EDS patients) using pain medications correctly for pain become addicted. One can become dependent, but can be easily weaned off narcotics in a short amount of time.
• Medications often used with EDS are: muscle relaxants, NSAIDS, steroids, lidocaine patches, antidepressants, narcotic and nonnarcotic pain medications. Remember that over 4,000 mg. of Tylenol daily causes liver damage. Different combinations of medications work for each individual.
• Pain can be completely debilitating and keep you from needed sleep. Often family and friends don't believe you ... the worst part of all.

So you have days when you need a nap to rest up from the effort of getting out of bed in the morning, you might have EDS.

Emotional Effects of EDS:
Should either physical disability or chronic debilitating pain make your life feel destroyed, feelings of worthlessness and profound depression may set in; often talking to a counselor or medical professional will help. Regrettably, a tragedy occurs when we not only have to contend with no longer being able to do the things that we have loved doing, but also has to battle for family and friends' belief, respect and understanding. It appears that everyone with an invisible disability sadly experiences this.

While someone with EDS is mourning their loss of ability and freedom, others often accuse them of just being lazy, malingering, or becoming an addict to the pain medications that allow them to live their life. Because of this, we should not confuse their endeavors to live life and be positive with assuming they are feeling well or doing better.

Knowing you have EDS doesn't suddenly make things worse for you physically, but may allow for better physical management, and ideally allow for the prevention of any real problems, even if none exist currently. So knowing you have it is not necessarily a bad thing.

Personal doubt about one's mental and physical abilities can add to the fear that others can't possibly believe or understand what you're going through. Inability to cope with daily tasks or mental confusion can have a demoralizing effect.

But there is hope and help. You can join EDNF and learn how to help yourself, your doctor and your future. You are not alone.

So you are searching for knowledge, learning about EDS and educating others, you might have EDS!

www.ednf.org

Physical Therapy Management of the Hypermobile Patient

Terry Olson, PT, MHS, FAAOMPT, received his physical therapy training at the University of Iowa and he has an interest in the manual treatment of the muscular skeletal problems. He subsequently received his Masters Degree in orthopedic physical therapy and he developed a post graduate program in exercise and manipulative therapy. Mr. Olson is a fellow of the American Academy of the Orthopedic Manual Therapists and we would like you to welcome Mr. Terry Olson.

I am going to present this from the standpoint of looking at hypermobility. We are going to look at a definition of hypermobility, its relationship to EDS, then talk about the role of exercise and joint protection, and a short case study that I thought I would present.

Okay, what is hypermobility? There are quite a few definitions, but the one that seemed to be the simplest was that it is a connective tissue disease, where connective tissue proteins, such as collagen, which give the bodies its intrinsic toughness, are differently formed; the results are mainly felt in the moving parts, that being the muscles, joints, tendons, ligaments, which now are more fragile than is the case for most people. The result is joint laxity with hypermobility and with it comes vulnerability to the effects of injury. The young girl presented here is the one on which I did the case presentation.

Quick review of the categories.

*
Classical: Looking at skin hyperextensibility, tissue fragility and joint hypermobility.
*
Hypermobility: again, joint hypermobility is the dominant characteristic, may have joint subluxation and dislocation, limb and joint pain.
*
Kyphoscoliosis: generalized joint laxity and severe muscle hypotonia, scoliosis, tissue and organ fragility.
*
Arthrochalasia: congenital hip dislocation, severe generalized joint hypermobility, recurrent subluxations, tissue fragility, and muscle hypotonia.
*
Vascular: organ fragility with the possibility of arterial or organ rupture, tendon or muscle rupture, joint hypermobility primarily in the digits.
*
Dermatosparaxis: severe skin rigidity, skin soft and doughy and may have large hernias.

Of all of those categories, the dominant feature from a physical therapy perspective is hypermobility and joint laxity, so those are the primary considerations for a therapist when treating patients with EDS; and that means that treatment needs to focus on joint protection and dynamic stabilization of those joint structures.

Muscle stiffness is a term that is used to describe the spring-like quality of muscle. When a muscle has high stiffness, increased force is required to cause lengthening of that muscle or to perturb it. Muscle stiffness has been described in the biomechanical and neurophysiological literature as one of the most crucial variables in joint stabilization; and in the knee a link has been established between receptors in the ligaments of the joint and muscle stiffness. The slide includes a few of the references for that.

In the residency process (I went through post-graduate residency training in manipulative and manual therapy) you are primarily moving joints that are stiff. Switching to talking about joints that are not stiff, which is the case here, takes a bit of a shift. One of the things taught in the residency process was that you cannot distinguish a problem as being a joint problem or a muscle problem. The structures are so closely interrelated that the feedback between the two is critical to the integrity of that joint. If you have problems within the joint; because the joint provides feedback to the muscles, you are going to have muscular weakness. If you have muscle weakness, again through association with the joint structure, you are going to have impact on the stability of the joint. Thus, any treatment needs to be directed at all of those structures.

It is possible that the sensory properties of structures within joints can be modified by the contraction of the local, stabilizing muscles, and this is usually the proximal muscle groups. If you are looking at the shoulder, you are talking about the scapular cervico-thoracic muscles and the large shoulder muscles themselves. If you are talking about ankles and knees, you are looking at the muscles in the trunk and the pelvic girdle.

Besides providing mechanical stability to the joints, these muscles can contribute to the sensory feedback mechanisms associated in the joint structures themselves. A study done by Blazier, Carpenter, and Houston showed that tightening of the joint structures with active muscle contraction increases the acuity of that shoulder joint. That means if the muscles are functioning properly, then they are going to provide feedback to the joint which, in turn, makes a more stable situation for that joint and the joint has the ability to have feedback as to where it should be positioned.

Dynamic stabilization, or the use of exercise to promote joint stabilization, occurs when tonic (postural and slow twitch muscle units), are activated. These tonic motor units are activated during tonic continuous low load activation of muscle, maximizing muscle stiffness. What we are talking about here is asking the muscle to contract gently, not maximally, and to be able to sustain that contraction for a period of time. This can be influenced by the speed of the activity or exercise, as well as the type of muscle contraction you are trying to acquire. Muscle contractions that are performed in the shortened range of the muscle length are going to be critical in establishing the sensitivity and optimal functional capacity of the sensory feedback system in the muscle.

All that says is that when you are exercising - for folks that are afraid to exercise, for folks that have an inherent increase in mobility - exercise needs to be done in a very small controlled range of motion. Dr. Unger and I have had discussions about patients that we might see commonly as well as the patients I have seen from Dr. Mark LaVallee. One of the things that I have seen somewhat consistently is that the patients who are stretching don't need to stretch. They will tell me about being stiff and they will take their leg and wrap it around their head and it is just difficult to relate to that as being stiff. Now you can have a feeling of stiffness, if the muscles are fatigued or overworked, which to me then relates back to weakness.

Co-contraction and co-activation of muscle groups provides the biomechanical forces for joint stabilizing and protection, especially if they are performed in mid-range or neutral joint positions. Every joint, in its ability to move through range, is going to have positions that are inherently more stable because you have joint surfaces that have better contact with each other. You also have a point in that range where the muscle has mechanical advantage. If I am bending my elbow, the biceps will do that. When the bicep is in its lengthened range (elbow fully straight), I am going to be much weaker than when I get to a point (elbow fully bent) when things are going to shorten or come closer together. Mechanically this is much stronger. And, so, when you exercise EDS patients, you need to make sure you attend to placing them in those mechanically advantaged positions to work and exercise.

This is not just with EDS, but with many of the patients I see that have weakness or hypermobility. They do not exercise their full range of motion, they do not have the control to do so, and building the ability to exercise to the greater range is the goal. So, you start where the patient can perform in a pain-free and stable manner. Closed chain exercise is superior for muscle protection of the joint, although open chain exercise is also beneficial and necessary, especially again if it is performed in the protected range of motion.

When we are talking about open chain exercise/closed chain exercise we mean the following. Open Chain Exercise: if I want to exercise my quadriceps, that is the muscle that straightens my knee out, that is open chain, just moving my leg through range of motion. Closed Chain Exercise: if I stand here and do a squat, I am still working that quadriceps muscle, but by virtue of contact with the floor, we now have other muscles that act to provide increased stability. So a lot of times, starting these patients with exercises that are more closed chain, enhances that ability to stabilize muscles around the joint.

Case presentation

We take a body chart that the patient marks when they come in - and again, typically, when I get a body chart on a patient from Dr. LaVallee, that whole body chart may be colored in - it looks like they have a suit on.

As a therapist, where do you start with that - you cannot treat everything. In this case here, the young girl, the primary complaint was the mid lower back, and the other complaints were part of her overall problem; but in this case not the primary reason for presenting to therapy. Primarily, it was because of back and hip trouble. She had a diagnosis of lumbar back pain, left hip pain, and EDS multiple areas of pain complaint and again those were most notable in back and hip. She described pain complaints of an 8 out of 0-10, (0 being no pain, 10 being like a wild animal tearing your leg off).

She described her pain at her worst as being an 8 on that scale with standing for more than one hour being a provocative activity, as well as her activities of daily living. One of the things that were important at that time was that she had a baby, and that holding her baby was enough to provoke a lot of these pain complaints. She had objective signs of multiple joint hypermobility with back pain reproduction.

In her case, initial emphasis was on symptom alleviation using modalities (heat and cold, TENS units, electrical stimuli), gentle joint mobilizationand biomechanical correction, as well as performing assisted exercise in protected asymptomatic range of motion. We also provided biomechanic counseling on joint protection, as well as back care education regarding lifting, sitting, and performance of her activities of daily living.

Over the course of treatment, as her symptoms decreased, we progressed into more dynamic exercise, dynamic stabilization, and that become the crux of her home program.

One of the things that we can use in the setting that I work in, at least in the acute phases, is equipment designed to start exercising folks at less than full limb loading. If you have someone that has an injury or problems with - as in this case - knee and hip, and those problems occur when they are weight bearing, then the idea is that exercise has value because if we exercise, we have the ability to increase blood flow and circulation, increase oxygen, all of the things that are essential for healing, as well as building blocks for laying down stronger tissue. The problem is bringing that load to an acceptable level for that person.

So, in this case, this patient is just doing a bilateral squat activity and the slide board allows her/him to exercise anywhere from less than 20% of body weight taking it all the way up to 70% of body weight and then we know how to graduate that into a gym exercise. We try to exercise people as functional as we can, so if people have complaints of “when I stand too long or when I walk too long, when I bend is when I have my complaints,� I am going to try to set my exercise program up so that they are standing, walking, bending, but using the equipment to again decrease gravity, or their body weight, so that they are exercising with less body weight on those joints.

In this case, with walking, we use a treadmill system that has an overhead pneumatic assist and that harness allows us to hoist someone up. We can take that person, take as much as 70% of body weight (essentially the weight of the trunk - you go any higher than that and you are like Peter Pan and you are unstable, and you are ready to fly) then you are still getting input into the joints, but not full load.

I had a discussion with one of the participants who asked me about Pilates - I am going to beat people to the punch - I don't know. Pilates makes sense to me that it can be of value, but I don't know enough about it and I might make an idiot of myself trying to tell you the value of it.

Not for purpose of this talk, but if it gives any rationale to why; the approach that we use is a system called "medical exercise training". That approach is based on specific tissue exercise, and so we work from a standpoint that muscle requires a different muscle stimulus than does tendon, than does cartilage, than does disc. All of those structures have a different metabolic requirement, so those exercises have to be different, and when you are working with folks who have tendonitis, we try to work out an exercise program that allows that person to go through anywhere from 150 to 200 repetitions - because that seems to be the adequate number of repetitions to get an adequate increased blood flow to the area to promote a healing response. When trying to address structures such as ligament, cartilage, disc, those structures require upwards of 1,000 to 1,500 reps. The problem is taking someone who hurts and tell them you are going to put them on an exercise program of 1,500 repetitions and then say I will come back in an hour and see how you are doing. So to do that, you need to take load off, and the purpose of the equipment is to assist that part so that person can perform repetitions without pain. And then as the structure begins to heal, we gradually put load back on.

So this was the initial phase. In addition, we started to work on trunk. With Pilates or with other approaches, their value is core strengthening of the trunk - because your arms and legs attach to your trunk and if your trunk is not stable, then it is difficult to promote stability into those joints. Oftentimes the trunk is the most logical place to start, and is probably the easiest because everything else has to function off of it.

A simple leg raise will require activation of the transverse abdominal muscles if they are activated and used. The fact that her back is arched and she is unable to keep it from arching is indicative of the fact that a good exercise becomes a very poor one because she doesn't exhibit the ability to recruit enough trunk muscles to actually handle the weight. Here, she is able to keep the trunk stable (you don't see that hollow) and so she is performing that exercise actually really well with good trunk control.

Exercise is controlled trauma. When we exercise someone, we are inflicting trauma - the idea is to control it. If you exercise adequately, you are going to break down tissue, then let it rest and in this phase it recovers and lays down stronger tissue - if you adequately stress it. If you overstress it, then a good exercise becomes a bad exercise pretty quickly. All day long I see patients come in who are failures at exercise programs and it is not because exercise is not a benefit to them, they have just not been trained to do it with good form and to work in a range where they have control. You need to understand what is safe.

I had actually treated Erika about 9 months ago and she did well. I asked her to come back to see how she was doing but also to take some photos for this presentation and it was a good chance to take her upstairs and see if she was doing what we had instructed her to do 9 months ago. She demonstrates incredible form. Her elbows are going the wrong way and you would think that would make sense, but when we first went over her exercises and she did things, a lot of the things she was performing, a lot of work was in an unstable range and it was causing a lot of pain. It was just a matter of again making certain that her trunk was active and then worked in the range that she could exhibit control.

The exercise doesn't matter - when I set exercises for people, it doesn't matter, pushing up, pulling down, pushing away, pulling into them, I do a variety because life is made up of that. You need to be able to do all sorts of things but in a stable manner. The exercises need to be changed and modified as long as the patient understands stabilizing well, good trunk improvement, and that the joints are working in a range where they were stable.

I saw Erika for 9 visits over a 5 week period. Initial treatments consisted of gentle treatment to relieve symptoms coupled with assisted exercise utilizing the assisted treadmill walking and total gym. The patient then progressed to a stabilization and progressive strengthening exercise program. Her symptoms decreased, her discharge pain complaints were decreased, and she was able to stand and sit for more than two hours without symptoms, as well as lift her baby without increase in symptoms.

The final slide provides some excellent overall points in your therapy process. All of these things can be used in treatment and pain reduction. What I have seen with pain reduction, if you are heating people or icing them or electric stimuli, you are doing things that are temporary. Long lasting change is only going to come with making a change in the body, to the extent that you can. So, exercise with emphasis on controlled range of motion or working within a range of control. Pool therapy is beneficial and we use a pool at our facility also. Pool therapy takes the body weight off much the way the harness mentioned above does. Massage certainly has value, but again I think you need to be careful about monitoring skin integrity, especially if you are doing friction massage which is one of the therapy modalities often used in treating tendonitis. Use of splints or bracing - those are done supportively. Annual therapy, manipulative therapy, chiropractic therapy - it is not contraindicated, but you need to make sure you are addressing treatment to a joint that needs to be moved, not the joints that already move excessively. As a general rule, you want to be cautious of vigorous stretching secondary to inherent hypermobility. Again, I don't teach people to stretch, but they do need to strengthen because they have all of this range of motion that they don't have control of and that is painful. A lot of patient education, regarding ergonomics, joint protection, body mechanics, is required.

There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS. More detailed information can be found in our Medical Professionals Section.

General Frequently Asked Questions
Hypermobility (Formerly EDS Type III)

Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees)and small (fingers and toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella, and temporomandibular joint dislocate frequently. The skin involvement (hyperextensibility and/or smooth velvety skin) as well as bruising tendencies in the Hypermobility Type are present but variable in severity.

Chronic joint and limb pain is a common complaint amongst individuals with the Hypermobility Type. Skeletal X-rays are normal. Musculoskeletal pain is early onset, chronic and may be debilitating. The anatomical distribution is wide and tender points can sometimes be elicited.

To date, no distinctive biochemical collagen finding has been identified by researchers. The Hypermobility Type of EDS is inherited in an autosomal dominant manner.

Ouch!

I haven't taken the anti-inflammatory in a couple of weeks b/c my acid reflux has been so bad, and now my hip, the right one, the post-op one, is not happy with me at all. I went to the pool yesterday, but it was hurting before that. I guess I need to start taking them again, but then what am I going to do about my stomach? The pain is getting bad there and I'm thinking I probably have some damage, so I've been taking the Protonix 2x/day. Why is everything always a catch 22? Frustration!!!

At least I have received a happy surprise. My sister in law is bringing in my nephews tonight and we will hopefully get to see the balloons being blown up and then go to the parade tomorrow. Any time with them is the best!

Oh, and I heard back from two of the people I emailed yesterday so will contact them on Monday after the holiday for further information and decide who I want to see. That is definitely good news! They said they both do the dry needling! YAY!

coincidence?

I was going through some old medical files that I had accumulated from when I was trying to figure out what was wrong with my hip. It was a very interesting list - I wrote down some things that might fit:

?Myofascial pain syndrome (neuromuscular disease; affects fascia; trigger points)
treated with PT, massage therapy, trigger point injection
?RA (inflammation of joint and tissue around joints; auto immune disease
?polyenthosopathy
-pinched nerve in cervical spine? feels like pinching/pressure in neck and shoots down right side of body
-Ehlers Danlos Syndrome -unstable joints; dislocating shoulder

What I find most interesting about this list is that I a)had this pain in my neck and arm longer than I can remember, it just wasn't as constant, and b) I think I am more qualified than most doctors. No doctor had mentioned anything about Myofascial pain until quite recently, and that was only because it was a physio in Holland. I knew I didn't have RA as I've never tested positive for it, but I guess I wanted to cover all bases. I was diagnosed w/ EDS after this, by a genetic doctor. And now I have been diagnosed with herniated, bulging discs and stenosis. I really should be a doctor.

Yes, I'm going to rant. And then rant some more. My major problem with the medical system in this country, well, one of them, is that all doctors are trained in parts. There is no doctor that I have found - if you know of one please tell me - that treats a body as a WHOLE. You have to go to a million different types of doctors that specialise in very specific things, and whilst that is good on one level, it is bad when they forget that that part of the body they focus on is actually CONNECTED to the rest of your body!

Where is this all going you ask? Well I had my appointment on Monday with the neurologist, Dr. Fatimi. Please don't go to her, she is dafter than a plank of wood. Perhaps she is just too young and clueless but she really doesn't have any idea what she's doing. My mother came with me to this appointment as I was to have the EMG test. Once we finally got into her office, she said - I thought you were going to have the EMG already? I couldn't believe it. I explained to her how I had had a whole long conversation with her assistants and we rescheduled the visit and the test to that day, from the 3rd. She said yes, I saw you were scheduled and you didn't come. I had to explain that I received a call from her office whilst I was away, and as I didn't return until midnight on the 2nd, I could not ring her office until the morning of the 3rd, and then tell the office that the appointment had been cancelled and rescheduled, which they said oh yeah, we have you for the 17th, for some reason it was still on the 3rd as well. This has to be one of the most disorganised offices ever. It drives me barmy. She didn't apologise or anything. Finally she arranged for the test to be done then, after she kept us waiting in the test room for ever. She didn't really explain what was going to happen, thankfully I had done my research, and did the electrode part first. They write on you for the measurements and then stick electrodes on you and zap you with electricity. This is not fun. I was trying to stay calm. It was extremely painful. Then it got worse, she did the needles. It was like medieval torture but with electricity. At one point she stuck a needle in my hand, in a v. sensitive post-surgery area of my hand that is extremely sensitive, and I lost it. She didn't warn me when she was going to do it or where, and just randomly kept stabbing and zapping. I hope whomever is reading this never has to have this test, but I won't lie. It was horrific.
After she was done, she said - wow you're so sensitive. Gee, a normal person would be in pain, but factor in the fact that I have fibromyalgia and my brain processes pain differently, then of course I was sensitive! That's what I mean about her - completely daft.
We then reviewed my MRI where she didn't even mention half of what the report said, until I brought it up. She then said she thought PT would work and gave me a prescription for that. I had brought along copies of some articles I had read about myofascial pain and dry needling, and gave them to her and explained that I believe (as my chiro does) that I have myofascial trigger points and that they need to be worked out before any PT can be done, because you can't strengthen a muscle that has a trigger point in it. I swear this went in one ear and out the other, then she seemed bothered that I was talking, wrote down the name a physiatrist, and said that I would need to talk to that person about treatment as she doesn't know anything else. What kind of doctor is that? Definitely not the kind that is concerned about a patient. I understand that with the way insurance is set up it is not to benefit the dr or the patient and they all have their numbers to do so they can make money, but if you don't want to treat patients then you shouldn't be a doctor. Period, case closed, regardless of the money. I have been to too many doctors to put up with this kind of crap. I am so fortunate that my primary, Dr. Rosen, takes the time out to talk to me, answer my calls, look into things when I need her to if it's something I can't do myself. And yes, I'm spoiled, but that is what a doctor should be like.
Ok, well, enough about that, sorry, I am just so frustrated.
After the lovely EMG I was in a lot of pain, stabbing, stinging pain. We had some wine and I thought I would be fine by the morning. But I was wrong. I woke up and could barely move my hand and everything was hyper-reactive in my body. The test inflamed everything and set me off down another spiral of bad pain all over my right side. I couldn't even go to work. Yesterday I was still pretty bad, and then I went to the chiro at lunch. He couldn't believe how tight my neck/shoulder area was and said there was a lot of Myofascial stuff going on. So I'm going to see him again tomorrow.
I did make an appointment with a physiatrist, Andre Panagos, at NY Pres who does dry needling, but it's not until the 29th. I heard back from Norman Marcus' office and will see about possibly going there. He doesn't take insurance and the first visit is $465, which I guess is better than $1200. I still can't get over that one!
So, onwards and upwards. My head is spinning from all of this and throbbing as well.

post Holland

The flight to Holland was pretty uncomfortable. I used my neck pillow to keep my head up so I wouldn't lean it in any funky position if I fell asleep. It was quite a bumpy flight over there as well. Thank goodness I had the wheelchair pick me up when we landed. There was no way after that long flight I would have been able to walk to miles to the bus transfer for the other terminal. I'm not exaggerating, if you've never been to Heathrow - it is HUGE and it can take you ages to get from one part to another, and that's just in one terminal. They have 5 now, so there's a whole system of transferring and buses and walking down endless corridors.
Terminal 5 is the newest though and quite nice actually.

When I arrived at AMS thankfully my friend picked me up - saved me a lot of pain. The next few days I was a bit of a pretzel and T suggested I see her physio. Thankfully he was able to squeeze me in, and I went on Tuesday afternoon. His name is Remco and I am madly in love with him. He made me feel better than any other person has since I can remember. No miraculous healing or cure, but after what he did, I didn't have pins and needles down my arm for 4 days, and now it's only just starting to get constant again. After having a lengthy discussion with me about my various bodily messes and asking me lots of v. good questions, he examined me. He made some v. interesting insights, like EDS and the neck disc issues are closely related, my C2 is super tight because it's over-compensating for my TMJ on my right side (said that looseness in tmj on right side affects tightness around c2/c3), which is beyond loose and constantly clicky. He asked if my neck cracks when I wake up in the morning, which was funny because it's usually the first thing I have to do before I can get moving. He also said to stay away from surgery and do pt/chiro and keep swimming.

This is what he did:
*adjusted c2/c3
*used manual traction on neck
*adjusted middle back
*three dry acupuncture treatments in right shoulder muscle -said needles would take 2-3 days to really have an affect

He didn't want to do too much work as everything was so irritated already. He also said he wished I lived over there - and I said of course, you want me for your guinea pig - to which he laughed and admitted it. He said that my case was so interesting and I wish the doctors over here looked at it like that. He seemed to really want to help, not fob me off on someone else, which seems mostly the case over here, with a few exceptions.

Since I've been back I spoke to Dr. Rosen and she thinks I should look into the dry needling, although she cautioned nothing is a cure-all, which I know, but heck - I'll take any relief I can get, especially if it's not drug related. I also spoke to my rheumatologist, Dr. Meng and whilst she does basic acupuncture, she's not familiar with dry needling, but also agreed that it was something interesting to look into.

I am going to my chiro shortly and will tell him what the physio said and see what he thinks as well. I did come across a name of a doctor at NY Presbyterian that does dry needling in one of the articles I printed out, so may ring him later and see what his office says.

I definitely am back to bad pain in my neck now and the pins and needles are not 24/7 yet but they are getting back to that level. My TMJ is a mess, and I get my night guard next weekend. I really hope that helps.

Saturday morning

I woke up and my bum was burning. So I looked. Seemed after the torture of the cauterization the day before - it hadn't even worked!
Just my luck.
I'm not even going to bother to ring the doctor since I'm seeing him on Friday. There is no way I'm letting him cauterize anything again as it was so painful and no success.
I'm pretty much hitting bottom right now.

Missing the everyday

I made it to work today! Even though I was an hour and a half late, I still made it, and that is what counts. I don't think I could have taken another day sitting at my flat, no matter how much pain I'm in. I've cut out the pain tablets as I'm so done with feeling wonky and dizzy and sick to my stomach. I'm just on Tylenol now. It helps, but I still feel pretty weak. I took the bus and subway this morning. I had to wait for a bit, and there was a taxi in front of the stop, and for one second I thought I'd take it, but then I came to my senses and realised what a nightmare that would be, with all the bumps and potholes! I had left a pillow at work from the last surgery and glad I did. My bum definitely needs it. My bosses have been v. understanding, I'm v. lucky with that.

So, here I sit, at the office, still feeling like crap but really wanting to get back to my regular life. (But I do miss all of my mother's yummy home cooking!). I hate boredom and being cooped up, so time to make some plans! Well, not bike riding or anything, but something to get me out and about.

(Again, just want to say how amazing my family and friends are. Even when they are busy packing and then about to hop on a plane to S.A. find time to check in, or so busy with their three kids and birthday parties, ring me to say hi, and those that just have v. busy single lives and still find time to check in regularly. I hope you all know how much I appreciate you! It does mean the world to me, and I just want to say thank you!)

Good news are my bug bites are all gone and no more itching!!! (I probably just jinxed myself).
Bad news is that we've been through about 3 or 4 fishes in the last week. Martin died over a week ago, I got a replacement, and in two days he was gone, so brought him back to the shop, and they gave me a new one. That happened two more times over the last 5 days. I went in yesterday to tell them the latest had that cotton-like fuzz on it and they then mentioned something about air conditioning, and if it had been on. Seems that Bettas are v. sensitive to water temp and even if they're not near the a/c, it can cool the water, then bacteria or fungus grows, and then they're a goner. Wish someone had said something sooner. It does make sense though because Martin had been doing fine until the air was turned on. I think I will wait until the fall to get a new one! I can't take anymore dead fish!

boredom and general icky-ness

Yesterday was quite a day. I had brecky with my parents, then passed out on the couch for an hour or so. I had taken a pain pill when I ate and I guess it hit me pretty hard. It's definitely true that these things build up in your system, because the more I took, the quicker the effect was. When I woke up I took a shower and my mother wanted me to try to walk outside. We went pretty close, just to the food store, but I felt really queasy and dizzy and was wiped out by they time we returned. I ate again because we thought that might help, and then I fell asleep for a few hours. In the interim they had left. I was woken up around 19.30 by the phone and thought that I should eat something. I tried to look at some menus online but still felt ill, so just had a little cantaloupe that was cut up. I tried to sit in the other room for a while but just felt horrid so came back to bed and eventually fell asleep, on and off, for the night. I am glad that I didn't go to work today because I would have been a wreck.

This morning I still felt horrible, even though it had been about 24 hours since I had taken a pain pill! I decided last night that no matter how much pain I was in I was just going to take Tylenol because I hated the haze I was in. After I took a shower this morning and still felt ill, I thought some fresh air might help, so went across the street to Starbucks, where they have outdoor seats (I brought my own cushion - and it was still pretty painful). I was out there for an hour or so and it seemed to help a little. Then it started raining - just my luck. So I came home, ordered some lunch, and made myself eat. Since then just been vegging on the couch, trying to sit on my bum, and feel less sick. I think some of the meds are finally leaving my body. I truly hate feeling like this, like I've no control over my body.

I have to say this is a pretty horrible recovery and I wouldn't wish it on my worst enemy. I can't begin to describe the pain. I have decided I am going to go to work tomorrow and am hoping to make it through the day, with just Tylenol - at least that's the goal. I am beyond bored. It's dull just sitting around with no company, so at least there I will (hopefully) have things to do. I am really bummed (no pun intended) that I will be missing the concert in the park tonight - it's perfect weather! Oh well. C'est la vie.

Home bound

Today I stayed home from work as I was in too much pain this morning. My whole right side was just flipping out. The weather was bad yesterday and add the lack of sleep and stress, it's the "magic" combination for a flare-up.
I actually went back to sleep and slept till about 11.30! Guess my body really needed it.

I did go to the pool yesterday, and it was good. I stayed in for a little longer, almost 30 minutes this time. At one point my right hip started to hurt whilst I was in the pool but then it went away so I just kept on plugging along. Last night when I was in bed watching telly my left hip started a stabbing sort of pain right in the joint. Such fun! But I finally did fall asleep, sans drink or my sleeping pill, so that was an accomplishment.

I am meant to go to PT later, but am going to see if I can go in earlier as I don't really feel like going at all, so if I have to wait till 6 I can't see it happening. We'll see if they can accommodate me.

The Daily Update

Ugh, I just typed a whole post and it somehow got deleted! How frustrating!

Well, the long and short of it is that I'm very sore and achy today, especially in the front of my hips. I feel that is mostly from bending down and picking Jack up yesterday. I don't normally squat that much. I also had a v. bad night with lack of sleep from an over-active memory and a little pain thrown in. I just couldn't seem to get comfortable no matter what I did.

I am still going to go to the pool after work and hopefully that will push me into the exhaustion state so I will be able to pass out for a good number of hours tonight. Fingers crossed!

To add to the fun, those of you who remember the root canal debacle in November, the pain is back. It's nerve pain, shooting in that same area. How can it be since I had a root canal? Good question. It started on Friday and hasn't let up since. Perhaps it just wants to distract me from the other pain?
I will have to see the dentist if it keeps up though because it's really, really uncomfortable.

I will be keeping myself distracted with more research about computers and businesses in the meantime though.

11 week post op update

Yes I am late again, but that's because I didn't go to PT on Monday. To be honest, I did not go Wednesday last either. I was letting some semblance to a social life start to creep in again.

So, last week, after PT on Monday, where we did leg lifts with NO weights, I still ended up in agony for a few days after. This is really getting old. And boring.
For the most part when I walk around I am okay on my right side. The right can get a little unhappy if I do much walking, but I am starting to think that is because I am leaning on it more than my left because my left is hurting so much. I try to ice when this occurs.

Yesterday am I woke up with horrible pain in my left hip. I was so uncomfortable that I rang Dr. Kelly's office and left a message. I have been thinking that since PT is so difficult on that side, and my leg is clearly getting weaker (it's weaker than my right now), some sort of evasive action needs to be taken. Other than this inhibiting me from walking more and seeing how I do without the crutches, and making my right side get irritated, it's most importantly going to ruin my trip to London in a few weeks! I can't have that. I discussed with my PT guy all of this last night and he agreed with everything I was saying, and said that (the dreaded) injection may be a good idea. For those of you that do not know me well, I absolutely dread the thought of putting that poisonous rubbish in my body. But...(there's always a but) it did work from 3-4 weeks on my right hip over the summer, and if I can somehow be fortunate enough to have it done and it works whilst I'm in London, I'll be a much happier person. Also it will help me take the pressure on my not-to-be-abused right hip.
I heard back from Dr. Kelly's office today. Arianne went on holiday so it was some person I don't know which meant going through the whole song and dance about what has been going on. (It's been short of a few days from a year since I first saw Dr. Kelly). I filled her in on all of my left legs loveliness (ie my IT band pops constantly and pain is more so on the outside of the hip), and she said that she thinks an injection might be something Dr. Kelly would want to do, even though I've not had an MRI yet on the leg. She was going to speak to him and would ring me back either tonight or tomorrow.

So, there we are. Oh, and to add to the fun, I think I've caught either a very bad cold or the flu. Ain't life grand? Still, off to see Tom Stoppard's "Rock n Roll" tonight, so perhaps that will cure me???

Happy Hanukkah!!!

Catch up

I will try to make this as quick and short as possible. Last time I wrote I was going to get antibiotics for my root canal that might have been infected. We're still not sure if it really was or not.

The meds did not work at all. By Friday I was still dying and my dentist asked me to come out to the island so he could take a look at the tooth. He took out the temp filling, upped the antibiotics even tho he didn't see any signs of an infection in there and left the hole open. I was to put cotton in it when I ate but other than that leave it out. My dentist also was going away. Never good when you may need him, and need him I did. Saturday I was in misery and there was nothing to be done - my dentist rang me from his trip and I tried the endodontist I had used last year in the city but he didn't get back to me, even when leaving a message on his emergency number - lovely! Sunday I spend the day trying to find someone to see me and even rang NY Hospital. Just for your fyi - they DO have a dentist on call, but on Sundays the dental clinic is closed, so all they can do is prescribe pain pills. How daft is that??? I wonder if you go needed emergency surgery they tell you all the rooms are closed and to come back on Monday???

Finally Monday I went to see a different endodontist in the city recommended by my parents neighbour - he cleaned out the canal again and said it all looked fine, was prob just some tissue in there that was hard to get out - supposedly this occurs plenty, and of course the tooth I had done is the most troublesome tooth in your mouth! I was numb for a few hours and fine, then when it wore off thought I was going to hit the roof. I had sharp nerve pain in the whole lower right jaw, stabbing away at my jaw. I was crying at my desk it hurt so much. I can handle pain, I mean, I live with it 24/7, but this was no ordinary run of the mill type of pain. When I rang the dentists office, his receptionist kept saying you're to expect pain and soreness after a procedure, blah blah blah. I kept trying to explain to her that I am not a person who just hurts a bit because they are uncomfortable. She finally started to understand what I was going through and had the doctor ring back. I went back to his office and he gave me marcane injections to numb it for long term, which only turned out to be about 5 hours but at least by then the anti-inflammatory meds had started to work.

I am still really really sore and can't open my mouth too much, and it's actually hurting more than yesterday so I'm a bit worried. I took another anti-inflammatory pill about an hour or so ago so hopefully that will help. Touch wood. A lot of wood!

To return to the point of this blog - my hip - all I can say is that with all the craziness going on I had to cancel my third PT appointment in 3 weeks so am v. v. far behind w/ that and not happy about it at all!!!

Meltdown

All of this non-hip related stuff is going to be the end of me yet. I must whinge for a bit, so please skip this bit if you're bothered by it.

First my acid reflux was killing me and my throat was on fire, then it turned out I have one heck of a head cold. I must have looked quite the picture today as both of my bosses insisted that I leave work as soon as they saw me. So I've been sitting on the couch, watching the telly and relaxing.

Then, to add to this joy, my tooth that had the root canal on Saturday became more painful so my dentist is putting in a prescription for antibiotics because he thinks there's an infection. Which means I have to go out again, feeling like crap and being in more pain than anything. I'm almost on the verge of popping a pain pill, which is a desperate measure. But as they say, desperate times call for desperate measures.

Please, whomever put this curse on me, enough is enough, I can't take it anymore.

Stoned

Well, at least that's how I think it would feel, as I don't really know. I had to take a pain pill today - not because of the hip, but my fibro if flaring up big time. Between this crap weather and lack of sleep I feel like I've been run over by a mack truck, who then reversed, did it again, and once more for good luck.
Good thing it's relatively quiet at work because I don't know how I'd pull it off. I actually cancelled my PT for this evening. There is no way in hell that I am going to be tortured by someone else anymore than I am being at present by my own body. Oh well, I guess sometimes you have to just say WTF and take some rest. I just hope the weather improves quickly, and that I get some decent sleep tonight. I hate taking these bloody pills!

4 weeks post op

4 weeks later and here's the scoop...

*I am still (frustratingly) on crutches. Most "normal" people would be off them by now, but because of multitude of issues, I am to stay on them for longer, though no one can seem to say when. The dr says "when I can walk with no pain and no limp". That being said, I have been wobbling around my flat w/o the crutches, and even did a silly thing and climbed the step stool so I could get my electric heater as it's been freezing in my flat. Stupid, yes, but I was desperate. One cannot describe how much I hate those bloody crutches, there are no words for it.

*Because of the crutches, my knees, shoulders, left hip and my hands/wrists have been beyond unhappy. This should not be taken by the average person as something they would experience, again it's just because of my other medical issues.

*Carrying packages is an issue when shopping, and I have been fortunate to have someone to help the last few weeks. This week is my first all by myself, and so far I have not had to go to the shops. My advice is to have someone stock up for you when they can.

*I can finally get my socks and shoes on w/o the assistance of the sock puller thingy and long shoe horn. I count this as a great accomplishment!

*I am still wearing my brace to and from places, but take it off when I am at work. The dr said that I should use this as long as I feel it is helping to support me. I had that reinforced on Friday night when I decided I was NOT going to wear my brace out, and only had a couple of blocks to walk. Unfortunately I had the wrong street in my head and we had to walk an extra long block up a hill. I was shot all around after that and my hip did hurt me for the rest of the weekend. To make up for it I stayed in and did nothing all day Sunday!

*Sitting all day is difficult, and I am meant to get up every 45 minutes to walk around. Getting up to use my crutches is the least appetizing thing I can think of, so it gets spaced out a bit more. I brought two ice packs with me to work and use them on and off all day long on both my hips to keep the swelling down.
*This week I start PT twice a week. I went last night and was pretty sore from the exercises and manual manipulation. The good news is I did 20 minutes straight on the bike!

*I was going to try to take the bus to and from work, but to be honest I have not made the best start with that. I am constantly exhausted so have been taking cabs, which is tres expensive, but sometimes more convenient than waiting and getting on and off multiple buses.

*Sleeping is still not great, but for me it never was. I have been taking pills to help sleep the last two nights, but on Fri and Sat did not need to as I was so tired, and had also drunk wine which helped!

That's about all I can think of now.

PS-I want to say a HUGE thanks to my friend T who spent last week looking after me, and was in all the way from Holland! I'm very lucky to have a friend like her.

Just finished reading this interesting article

Pain & the Hypermobility Syndrome by Prof R Grahame CBE, MD, FRCP, FACP University College Hospital, LONDON.

When the Hypermobility Syndrome was first put on the medical map in 1967, it was defined as the presence of musculoskeletal symptoms (predominantly pain) occurring in otherwise healthy individuals. Thirty years down the line we now think that there are probably two types of hypermobility.

The first is a milder type occurring in people whose joints are just like everyone else's but which have the capacity to move more than most people's joints. The other, a more marked form, has features that suggest that it may be part of an inherited connective tissue disorder similar to the hypermobile form of the Ehlers-Danlos Syndrome, formerly called EDS III. It probably is EDS. At the present time we simply do not know for certain whether or not HMS is merely a less severe type of EDS III. Pain can occur in other forms. For the rest of this article, in order to avoid confusion, I will refer to it as one condition, the HMS/EDS. There are many people with joint hypermobility in the community who experience no (or very little) pain. Most of them probably do not even know that they are hypermobile at all. Then something happens, and they start getting pains for the first time in their lives. Usually unexpected exercise or a change of job or lifestyle provokes the onset of pain. When ever symptoms commence, and irrespective of the cause of the hypermobility, the term 'Hypermobility Syndrome' is used to describe the condition. Hypermobile people without pain are just called hypermobile people.

A little known fact is that hypermobility occurs in many individuals in a few joints only. It does not necessarily have to affect all one's joints. Even hypermobility in a single joint can cause pain and/or instability in that joint; the diagnosis is still Hypermobility Syndrome (HMS/EDS).

People are born hypermobile. It is in their genes. It is the way they are made. So how is it that people with hypermobility can be literally fine for decades, only to be laid low from widespread pain, often out of the blue, which may make its unwelcome appearance during childhood, adolescence, or adult life? To explain these curious and seemingly inexplicable happenings, we postulate that the affected person, in this case the hypermobile person, had an inbuilt weakness of her (it is usually a 'her' but not always) strength-providing collagen or similar protein. This weakness renders body tissues less robust and hence less able to stand up to the physical strains of everyday life. We can explain a lot of the pain that arises on the basis of a series of (often quite minor) injuries that occur whenever there is a mismatch between the physical demands on one hand, and the strength of the parts being asked to perform them on the other. There is a whole host of painful injuries that can result, ranging from dislocations to fractures, disc prolapse, ligament sprains, muscle strains, pulled tendons (like tennis elbow or plantar fasciitis), etc.- conditions that can happen to anyone, but which occur more easily in those with the HMS/EDS. If one only knew one's strength (or lack of it), one should be able, in theory at least, to stay within the safety margin and thereby protect oneself from injury. Up to a point this is so. Many people with the HMS/EDS are able to modify their lifestyle and do just that. Others find it more difficult.

A joint that is beginning to wear starts to lose its cartilage or gristle, which is essential for the smooth movement between the adjoining bones. This wear heralds the onset of osteoarthritis, a condition painful in its own right. It is a very common form of arthritis in middle and old age, and one to which hypermobile people seem to be prone, in many cases at an early age. It is important to establish as far as possible to what extent the pain is due to trauma/overuse or to early onset osteoarthritis, as the treatment is very different. The emphasis with the former is on prevention, while with the latter it is on treatment by one form or another.

However, neither susceptibility to injury or overuse (repetitive injury), nor osteoarthritis, explains all the pain that is felt in the HMS/EDS. There is more to it than that. And here we get into a rather grey area, where there is more speculation than fact.

Let us try to piece the jigsaw together. Pain is something we feel. Even if it has a physical cause, as it undoubtedly has in the HMS/EDS, it is still a subjective experience. It is often accompanied by an intense sense of exhaustion. the severity of the pain we feel is greatly influenced by our state of mind. If we are upset or agitated it tends to increase. If we are content, relaxed or just happy it tends to diminish. The HMS/EDS people are often in the former category, and for good reason! Lack of understanding of the condition is widespread, and this, coupled with failure to receive adequate treatment for relief of symptoms, leads to frustration, resentment, anger (and lots more emotions which I could list but readers know them all only too well!) and, ultimately depression. These emotional influences can amplify pain, but they do not cause it.

Another piece of the jigsaw is a mysterious condition called fibromyalgia. This condition causes widespread chronic pain in muscles and is identified by the finding of multiple 'tender points' at specific sites in the body. For years the debate has raged as to whether it is a physical disease affecting the muscles, or whether it is an emotional disorder. The prevailing view is that it is probably some form of distress signal that can arise in people with a number of different and unrelated conditions. How this relates to hypermobility is that it has been shown that hypermobility and fibromyalgia occur together in the same person more often than one would expect on the basis of a chance happening. It does not mean that they are part of the same condition. It would, indeed be very unlikely that what is clearly an acquired disorder (fibromyalgia) could be an integral part of what is clearly a genetic one (HMS/EDS). More likely, the fibromyalgia should be regarded as a signal emanating from a distressed HMS/EDS person. But fibromyalgia occurs only uncommonly in the HMS/EDS. We must look further afield.

It seems quite likely that there may be a totally different explanation for the burden of pain borne by people with the HMS/EDS.

Here are two clues:

The first clue relates to the sense called proprioception, which means knowing where parts of one's body are in space. If you close your eyes and somebody bends your finger for you or picks your arm up, you know immediately how far your finger is bent or where your arm now is. That is because you have good proprioception. Scientists have shown that people with the HMS/EDS are not quite as good as other people in knowing exactly where their fingers or arms etc are in space. This could lead to a further increase in the risk of injury.

The second clue is the discovery that patients with the HMS/EDS for some
reason do not appear to experience the full anaesthetic affect of lignocaine injections when these are given for dental purposes, minor surgery or for epidural anaesthesia (I wonder how many readers are nodding their heads as they read this!).

At the present time we do not know quite what either of these clues means or whether they relate to one another. But they do suggest that people with the HMS/EDS, in addition to their proneness to injury, dislocation and osteoarthritis, may also have a fault in the way their pain signals are picked up for onward transmission to the brain, where they reach consciousness. Research work is in progress to try to sort out this enigma. Much more needs to be done. Watch this space!

Readers will know that many conventional methods of treatment, of the kind offered for rheumatic complaints in general, are not particularly helpful in the HMS/EDS. Physiotherapy still carries the best prospect for pain relief, and it is encouraging that more physiotherapists are training in methods that are helpful in this condition. Another noteworthy development is the network of units throughout the country that are offering pain management programmes, an approach which has been shown to be beneficial in the HMS/EDS where intractable pain is present.

Source: http://www.hypermobility.org/