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/

Again with the lack of sleep

Yesterday I had another PT appointment. I was pretty knackered before I even got there. I sit mostly at work but was told to move around every 45 minutes, which I am sure has stretched out to longer. I just don't have the energy as the crutches are wiping me out and killing my hands. When I left for PT, the timing was bad as all the cabs were "off duty". I was ready to cry until finally a nice cabbie that was off duty stopped to ask where I was going and he was kind enough to give me a lift. The walk to PT from my office is about two long blocks and four short blocks, but there is NO WAY I could have made that on crutches. I am so tired from the crutches, I think you really expend a lot more energy with them than just walking normally.

Pain and torture was excruciating yesterday. I did the bike for 15 minutes, and then some internal rotation and kneeling on the table. When K, one of my PT's, came over, I told him that my psoas has been REALLY tight and driving me nuts. His response was that we have to keep it tight per the Dr. I said yes I know that but the Dr also said that he wants it to move smoothly, not just get stuck with extremely limited ROM. I understand it's a fine line, but I can't have this feeling forever because it will drive me nuts, but I also don't want the laxity to get to where it was before the surgery. I'm losing my mind. So K massaged the psoas and then all of the scars, and started stretching me A LOT more than has been done. It was uncomfortable but bearable, until all of a sudden I had a shooting pain down the outside of my hip. I don't know what triggered it but it lasted about 5-10 minutes as was horrible. After that and some manual resistance exercises with K I did the electrical stim for about 10 minutes and then iced. I am spending about 2 hours from start to finish there.

After I finally changed and got all of my things together, I went down to go home. I didn't even entertain the thought of a cab as it was rush hour so was beyond pleasantly surprised when I reached the corner and saw an available one. He was so nice he even got out to open the door for me. It was such a relief to not have to take the bus home. I was a zombie by the time I got back to my flat so ordered some (not very healthy) dinner but I didn't care. I spent the evening on the couch and then decided to take a muscle relaxer for my psoas. I must have been in more pain all over than I thought because that didn't even knock me out. My fibro is flaring up something awful with this crappy weather and my whole body is aching, which is why I didn't sleep. When the alarm went off this morning and could barely move. I can't say "when I woke up" because I had been up for ages. It took me an hour or so to just get up to get to the loo. Thankfully my friend T is staying with me this week and was able to help get me sorted and then we took a cab down to work.

So I am sitting here taking a break and have ice on both my hips, but wish I had more ice packs for my hands and shoulders. I wish I could have just stayed in bed today but will go home straight after to rest and will try my "magic pill" tonight so hopefully some sleep will be in order.

Next week I start PT twice a week, G-d give me strength!

Snail

Today was my first day back at work. I am not even done with the day but am pretty wiped out. NYC buses really need to get their act together. Why do they all have to hang out for a coffee klatch and then at the same time all arrive? I waited for almost half an hour for the 5th ave bus today. During that time my left hip started to kill and my back hurt from my bag, which has turned into an intense neck pain now. So frustrating. At least it didn't rain on me, though it looks like the heavens are going to open up at any time. But I still feel like a snail going at this pace. I am normally a very quick walker, so it is so frustrating!

My office is being amazingly understanding and letting me come in a little late this week, which helps to take the pressure off. And most of the bus drivers, whilst they can't tell time, are very patient with me boarding the bus. I am hoping each day just get a bit easier.

Pain in the right hip has been tolerable, and I haven't (touch wood) had the need to take a pain pill in a few days. I did take a muscle relaxer last night because my psoas has been so tight for the last few days. I notice it especially when I walk.

As for PT, they couldn't get me a late appointment for this week, so I rang yesterday to see if they could squeeze me in, but no luck. I rang back asking if there was anything all week, and they said possibly on Wednesday but they'd get back to me. I still haven't heard so will ring them shortly. I don't really want to miss PT at the fourth week out. I did have my appointments booked for the next four weeks so at least I don't have to worry about that.

PS - just heard from the PT dude and thankfully they can get me in tomorrow at 4pm, so am relieved about that.

The Surgical Record

The HSS Operative Record

Patient Name: Me Date: 17 September 2007

Attending Surgeon: Dr. Kelly
Operating Surgeon: Dr. Kelly

Preliminary Diagnosis: Right hip labral tear with snapping psoas, Synovitis, Combines Cam and Pincer Impingement

Postoperative Diagnosis: Same

Name of Operation: Right hip arthroscopy, Labral tear, debridement, synovectomy, partial psoas and acetabular rim decompression with labral re-fixation and a cam decompression.

Anesthesia: spinal
Estimated blood loss: less than 20cc
Inoperative fluids: one liter of ringer's lactate
Drains: none

Indications: The patient is a 37 year-old female with progressive right hip pain, right worse than left. The patient had combined Cam and Pincer impingement with snapping psoas and inflammation. The patient had persistent symptoms despite non-operative measures and given these persistent symptoms, the patient was indicated for right-hip arthroscopy and associated procedures.

Procedure:
The patient was correctly identified in the Holding Area and the patient was brought to the Operating Room. The spinal anesthesia was administered. The patient was placed in supine position and approximately 10mm of distraction was achieved from the acetabular joint. The right hip was prepped and draped in the standard surgical fashion.

The lateral portal was established under fluoroscopic guidance using the Seldinger technique. A distal lateral accessory portal and a posterior portal were both established under direct visualization. The arthroscopic examination of the central compartment demonstrated a labral tear anteriorly with a significant synovitis with areas of early delamination of the anterior and superior cartilage consistent with Cam impingment and crushing of the synovium and labrum anterior, superiorly consistent with Pincer impingement. There was also extensive tension on the psoas anteriorly consistent with psoas impingement.

The cartilage on the femoral head was otherwise in good condition. The ligamentum teres was in good condition. The patient had a (looks like a word was whited out) injury posteriorly. At this point, a wide synovectomy was performed using the Tac-radio frequency probe starting posteriorly and working our way anteriorly. The labrum in the front where it was torn was debrided gently preserving the majority of the labrum. A capsular cut was then made connecting the anterior and anterolateral portals for elevation of the capsular tissue off the acetabular rim lesion.

The acetabular rim lesion was identified and then a 5.5 mm high speed bur was used to recontour the acetabular rim. The fluroscopy confirmed the appropriate resection. At the completion of the acetabular rim decompression, the psoas was partially released over the front of the joint where it appeared to be compressing the labrum anteriorly. The labrum after it was debrided was stabilized through the transition zone cartilage using the radio frequency probe but no suture anchors were required.

All cartilaginous loose debris was evacuated from the central compartment at the completion of the synovectomy. A partial psoas release, acetabular rim decompression and labral debridement. The scope was placed in the peripheral compartment as the traction was released. The hemi hip joint was placed back in the socket. A Cam lesion was identified and then a Cam decompression was performed using fluoroscopic guidance to confirm the appropriate resection.

The dynamic arthroscopy was performed demonstrating the absence of any residual impingement. At the completion of the Cam decompression, no further pathology was identified. The instruments were removed from the joint and the arthroscopic portals were closed with 3-0 nylon sutures and a marcaine cocktail was placed into the joint. The wounds were cleaned, dried. Sterile dressings were applied. The patient was awakened from anesthesia and brought to the Post Anesthesia Care Unit having tolerated the procedures well.

One step forward, two steps back

At least that is what it feels like at times. I have slept the last two nights but only because I've taken my "magic" pills. I am trying to get as much sleep as possible to get ready for next week.

My mother and I did a 'test run' to the office on Friday. I was originally going to do it during rush hour, but since I hadn't slept that night and was so sick from the pain killers, it was delayed for a few hours. We ended up leaving about 12.10 pm from the flat. I had to walk one block to the crosstown bus, take that to 6 long blocks to the Park, and then switch to a downtown bus. There was a lot of traffic from road works. We finally reached my stop, got off and walked a block and a half to the office. The whole trip took over an hour. I was pretty wiped out when we got to the office, but at least I made it. I waited there for a bit to see one of my coworkers who was out to lunch, and also thought to ring Dr. Kelly's office to see if they had the surgical report yet. After a couple of calls they finally faxed it to me. I will see if I can post it as the PDF or will have to retype it all. I was also extremely relieved to find out that my bosses will be out on Monday and that M arranged for me to work from home. It felt like a stay of execution - not that work is horrid, just getting there at present is quite a workout.

After we left the office we stopped to get something to eat, I had just a little as I was still queasy from the pain meds, and then we took the bus up Madison. It was not even rush hour but the bus, when it finally did show up, was absolutely packed. No matter when I take this bus line it seems to always be delayed and always be packed like a sardine can. I had to ask a not very happy looking girl to get up so I could sit down. Unfortunately my mother had to stand and I felt so bad, she was getting jostled all about. Some woman decided to step on my right foot with all of her weight for a minute or so, she seriously wouldn't move, put all of her weight on it, till I finally let out with an expletive! My toe throbbed for over an hour. It's like constantly getting beat up, no matter how hard you try.

Yesterday was a bit of a late start, but we didn't have any place to go so it was ok. I had some pictures from my Gran's flat that we needed to hang so we did that. A friend was meant to come by but never heard from her so we went across the street to Starbucks and sat outside for a couple of hours, then I tried to walk around a little bit. I am still wearing my brace as I feel much more secure with it and the doctor told me that I should wear it as long as I feel so. We ended up going to a German restaurant near me, and even though it was early the place was very crowded as it is Oktoberfest. It was pretty good but very expensive. And it also delayed my return to my flat. I normally love my flat but am so tired of it.

Think I will go eat some breaky and do my PT. I have to go shopping later to get lunch supplies for the week also. My mother is going home today and I am stressed about that. She has been a life saver these last few weeks. I wish I had some dosh so I could send her on a well deserved and earned holiday, this year has been rough for her, not even including my surgery. I should start playing the lottery! My friend T is meant to stay with me tonight and for at least part of the week, so I won't be completely alone which is good. I am getting around better in the house but I still feel better if someone is around for the time being. It's all so stressful.

On one other note, this has been a very difficult recovery, not just the hip itself, but all of my other body issues (hands, shoulders, etc). I would like to thank those people who spent time with me. Even a brief visit was such a welcome break from the monotony of this slow recovery - so just wanted to say thank you.