Friday, February 25, 2011

Hypermobility and Pregnancy

I am starting to think Elastigirl has nothing on me!
There are certain things I expected during pregnancy - weight gain, aches, tiredness, and the normal pregnancy things.  I didn't expect my joints to go nuts!  I thought I was getting a reprieve from the joint pain because the RA is in remission during pregnancy (that alone calls for a happy dance!).  Well, I was wrong.  Enter the hypermobility.

Officially it is called Ehlers-Danlos Syndrome type 3 (EDS-3).  Basically, it is a biglong name to say that under normal circumstances my joints are very loose.  "Hypermobility just means that you can move some or all your joints more than most people can."

I have know my whole life my joints were very flexible.  I always did great on the flexibility parts of the PE classes - which confused the teachers because I am not an athletic person at all, but I could beat most of the other kids scores on the "sit and reach" box.  I could almost fold in half as long as I didn't let my knees bend backwards on me and kept them flat.  I also knew I had weird knees because other kids would make fun of mine.  They have always bent slightly backwards unless I am paying attention to get them to stop at the normal mid-line point.  My ankles have always been a source of amusement for me because they can fold flat on the floor if I am sitting on the ground, but they are very prone to breaks and sprains, too.

Honestly, I never realized these traits were so weird because my mom has them too (and I recently found out my dad has some of them, just not as many and as crazy).  It wasn't until I went to the rheumatologist and he said something about it (as part of the RA craziness), and my niece was diagnosed with it that I started looking into it. 

The way they diagnose  hypermobility is through the Beighton score.  I will honestly admit, I have no clue what score my rheumatologist gave me, but considering I can do almost everything on this chart, I would say it is pretty high. It is one point for each trait you have on each side of the body, with a total of 9 points possible.  You also have to meet a set of criteria and there are various combination of them.  


Major Criteria

  • A Beighton score of 4/9 or greater (either currently or historically) 
  • Arthralgia for longer than 3 months in 4 or more joints

Minor Criteria

  • A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+) 
  • Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis. 
  • Dislocation/subluxation in more than one joint, or in one joint on more than one occasion. 
  • Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis). 
  • Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactily [positive Steinberg/wrist signs]. 
  • Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring. 
  • Eye signs: drooping eyelids or myopia or antimongoloid slant. 
  • Varicose veins or hernia or uterine/rectal prolapse.
The BJHS is diagnosed in the presence two major criteria, or one major and two minor criteria, or four minor criteria. Two minor criteria will suffice where there is an unequivocally affected first-degree relative.
One of the criteria is ruptured spinal disk (hernia), so I have wondered if the hypermobility didn't contribute to some of that.  Along with all the sprained ankles and wrist problems, too.  Looking at the signs and symptoms is a fun list, too:


  • Highly flexible fingers and toes
  • Loose, unstable joints that are prone to: sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness)
  • Flat feet
  • Joint pain without inflammation
  • Fatigue, which can be debilitating
  • High and narrow palate, resulting in dental crowding
  • Vulnerability to chest and sinus infections
  • Easy bruising
  • Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
  • Velvety-smooth skin which may be stretchy and is often translucent, with blue veins clearly visible on limbs and particularly in the hands
  • Abnormal wound healing and scar formation (scars may appear like cigarette burns)
  • Low muscle tone and Muscle weakness
  • Early onset of osteoarthritis
  • Cardiac effects: Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse)
  • Unexplained "pins and needles" or numbness in extremities
  • Difficulty regulating own body temperature, resulting in a vulnerability to the cold and heat. Many patients suffer fatigue and dizziness when exposed to hot conditions, eg. having to sit outside on a hot day
  • Severe mouth ulcers. Many patients complain of having several mouth ulcers at any one time. This is believed to be due to tissue fragility and vulnerability to infection
  • Food allergies and intolerances are very common
  • Sensitivity to medications. One of the cruelest aspects of EDS is that many patients experience bad reactions to medications, such as pain killers, making it very difficult to find safe, effective pain management[citation needed]
  • Migraines and headaches
  • Fibromyalgia symptoms: Myalgia and arthralgia


Over Thanksgiving last year we were talking about it at AJ's parent's house and I said something about my thumb will bend to touch my wrist, couldn't they do the same?  None of them could.  Apparently, that was an abnormal thing.  AJ had never seen me do that and his eyes got huge.  Now, I am not allowed to do it in front of him because it freaks him out.  He is scared I am going to really hurt something by doing it, but it doesn't hurt to do it.  It only hurts if I was to leave it like that and have the muscles get tight from staying in that position.

That is where the pregnancy problems come in.  With the pregnancy hormones (relaxin) making everything more stretchy the muscles are being forced to accommodate the joints going crazy.  I had an appointment two weeks ago with the rheumatologist and talked about all this.  I told him my joints were really floppy.  He nodded, examined me, and then chuckled.  He said they were really loose and the would probably get a bit more so as things keep going. Oh, yay!  He also found it interesting that at 6.5 months pregnant I can still lay my hands flat on the floor standing up because my hips and spine are that loose. There isn't anything we can do about it but splint the ones that are really painful - which means I am sleeping in wrist brace at night to keep me from contorting my hands into unusable claws when I wake up. 

I have learned some very interesting things to keep my eye on though for the rest of the pregnancy.  The Hypermobility Syndrome Association has a fun sheet just on pregnancy:
  • Joint and spinal pains may increase during the course of the pregnancy.
  • There is a tendency to premature rupture of the membranes and thus of premature labour and delivery.
  • There is a tendency to rapid labour.
  • There is an apparent resistance to the effects of local anaesthetics is seen in about two thirds of patients and can cause problems for the unwary during epidural anaesthesia or infiltration for repair of a tear of episiotomy.
  • Healing of tear or episiotomy may be impaired and/or prolonged and surgical technique may need to be modified accordingly.
  • She may find lactation and care of the newborn baby more taxing than most.
  • Pelvic floor problems (uterine prolapse etc) may occur in later life so that the practice of post-natal exercises is particularly important.
  • Since JHS follows a dominant pattern of inheritance there is a 50% chance that any offspring will carry the gene, although this does not mean that he/she will necessary develop symptoms of tissue laxity subsequently.
I am worried about the premature labor aspect.  I was born early and luckily, I didn't have any crazy health problems (the kind that put a baby in the NICU), but I was still about six weeks early (and I was a very early surprise to the point that my parents didn't have a crib, diapers, or anything ready).  We are praying Bug stays in until he is already to come out on his own.  I am also worried about the epidural.  I am trying to prepare myself not to have one by using Hypnobabies birthing.  Though, they say not to take the anesthesia class I think we are still going to because I want to know how it will work with the ruptured disk (the ones that are ruptured are the ones the normally put the epidural into), the fact that pain killers don't work on me very well at all, and I just want to know how the heck they work.

I have read several sites and forums about breastfeeding and EDS-3.  I wish I had booked marked them, but it seems to be a consensus that it is going to be a bit more difficult.  Great. Not exactly what I wanted to hear on top of the RA very probably making its ugly return.  I am working on surrounding myself with other moms who are breastfeeding and working on staying very positive about the whole thing.  I even got the track from Hypnobabies about Breastfeeding Success.  Like everything else with this pregnancy, I am not making any firm commitments on how things are going to go.  I am working on setting myself up for a successful birthing and breastfeeding, but I am still going to have to give in if my body says, "Hey, this just isn't working right."

I have had to be really careful about certain things lately.  I can't put my hands at certain angles or they get really stiff. My knees are going further back than they normally do and it is causing pain in the knees, hips, and back.  If you see me looking like I am about to topple over it is because my knees and hips aren't locking in place, frustrating, but normal.  It has also meant that walking really hurts and is exhausting!  Some days it is all I can do to get around.  I am very thankful that AJ is so supportive in all of this because he really helps me get around.

I am also really really tired lately.  I am not sleeping well because things hurt, but not sleeping makes them hurt more. It is a fairly vicious cycle, but luckily my OB is really working with me and trying to find something to help me sleep or stay asleep.  I have been listening to a Hypnobabies track for sleep and even made a playlist from Baby Einstein: Lullaby Classics.  These things help to get me asleep, but I can't stay asleep. 

EDS-3 isn't that uncommon.  The statistic I have seen is that 1 in 10,000 to 15,000 people have it.  I just feel like there isn't much known about it.  Also, all the really informative sites seem to be out of the UK.  I wish there was more information, but because it isn't a treatable condition with some very expensive drugs it seems to be mostly ignored.  I guess this post has two purposes : education and to remind me what will probably happen during any future pregnancies.  

I am very thankful for this pregnancy and for the doctors who have been working with me during it.  It is very easy to want to whine and complain about things going on that aren't fair, but these things are part of life.  I am thankful that things have been as easy as they have been because they could have been a lot worse - RA flares and wobbly joints on top of the crazy 20 weeks of severe morning sickness.  Pain I am learning to handle, or at least deal with.  

I know there is a very high likelihood that Bug is going to inherit the hypermobility (hopefully though not to the extreme), and I want to know as much as I can on what to look out for.  I will probably be a little fanatical about having him checked for different parts of it just so we know, especially if he starts having certain symptoms on the main list.


ashley @ twentysixcats said...

Thanks for this post! I am trying to read more so that I can know how to raise a daughter with hyperflexibility. How did you get the diagnosis of EDS-3? Is that the same thing as Savannah, or are there different types of hyperflexibility? Do you also have low muscle tone (hypotonia), like she does? I know the two combined are what is giving her such a hard time.

Please keep me in the loop of what you learn. :-) I think Paul has this, too, to a certain degree, but it seems to not mess with him as much as it has with you and Savannah. I wonder if it's worse in girls? Wouldn't it be funny if all my parents grandkids had EDS-3? Hehe :-)

(I do think it's so funny that our kids have/may have this hereditary thing, and something that neither AJ nor I have!)

Achelois said...

I have EDS Hypermobility Type (formerly known as Type III) I wasn't diagnosed before I became pregnant for the first time, over 20 years ago now!

Being informed helps. In my first birth I was not belived when I had stitches and the local anasthetic did not work. Second time round I was much more in charge.

Good luck with everthing from a fellow EDSer.

Samantha said...

I have EDS-3 and had my daughter almost 8 months ago.

I actually found your blog by Googling. I was on partial bedrest from 4 months on because of the SI joint issue you're having, had my membranes rupture 10 days early, and had a wonky epidural (took fine across my trunk, but nothing below my pubic arch, legs included). I have, however, been able to breastfeed successively and exclusively.

Please feel free to email me if you want to know about any of my experiences. I had an OB who had no idea how to work with an EDS patient and it was a scary experience.

Good luck with your pregnancy! I hope it goes smoothly.

TheKrystalRose said...

Thank you for your info. I recently discovered my children and I have this. For years we had no idea what was wrong with us. I have had spinal arthritis since I was 20. My son has 3 herniated discs and 4 protruding, he is only 27. The doctors could never figure out why we have these issues. Finally my spine surgeon diagnosed me. Even though they cannot help us it is nice to finally have answeres. I was diagnosed with fibromyalgia years ago but the sypmtoms did not match completely or explain everything.

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