Living with Miserable Malalignment Syndrome

Miserable malalignment syndrome almost sounds made up.  When  you first say it out loud to someone they may give you that look like you are talking a different language.  Unless you have it, then you know that the pain is very much real.  There isn’t much information on Miserable Malalignment syndrome, which is very frustrating for a person who has it.  

FINDING OUT WHY

I started suffering from leg pain that was unbearable.  It was sometimes knee pain that felt like my kneecap was going to explode out from under my skin.  But I also got leg pain that radiated down the front of my shins, feeling like shin splints 24/7. I could barely bend my knees without feeling like the pressure behind my kneecaps was going to make my whole knee pop out off of my leg.  Walking around the neighborhood, or even walking around a store would be miserable. With my malalignment you can visibly see the turning in of the kneecap, and how my knee does not align with my thigh, or my lower leg. Now if someone passed me on the street and I have shorts on my legs aren’t a freak of nature.  That’s why until I had actually been consulted on my leg pain I didn’t think anything was wrong physically with my legs on the outside.

When I first started having these symptoms I had a job where I mostly sat all day. My first thought was it was pain from lack of moving around.  When I would get home from work I would try and take walks or stretch out but nothing seemed to help it.      

I had played basketball for about ten years but when my leg pain started I hadn’t been playing basketball for almost six years at that point.  I went to multiple Orthopedic doctors who told me that there wasn’t much they could do. The first one asked if I had ever been in leg braces when I was a kid.  The answer to that was no, I hadn’t had any of these symptoms till my early twenties.  He also stated that he could break my legs and reset them to correct alignment.  No thank you. The other one suggested physical therapy to help strengthen my upper leg muscles to take some of the stress off my knees.  The physical therapy exercises that I did, did not help.  The pain was still there and constant. I did the physical therapy exercises for about two months before throwing in the towel.  Pain medicines started not having any effect, and I was taking a lot.  I didn’t want to continue to pop pills constantly.  After the lack of helpful advice and the pain medicine not working anymore, I had come to realization that I just may have this pain forever.  I felt defeated. The doctors weren’t helping, I did not want to have my legs broken on purpose, nothing or no one had answers as what to do.  My leg pain lasted for two years.

I ended up switching to a job at a hospital surgery center. I started asking a lot of the doctors who came through to see if they had any knowledge or suggestions.  Orthopedic doctors just wanted me to set up an office appointment so they could charge me and take new x-rays.  I was too cheap to agree to that.  I finally stopped a pain doctor and after talking with him, he told me that since I had a slight curvature of the spine, nothing major and not diagnosed scoliosis (lateral curvature of the spine), but enough of a curve you can notice it. And I have given birth to a baby. Those two things together could have caused the misalignment to get worse which would be the result of why I have constant pain, and the visible turning in of my kneecaps.  That made sense.  My leg pain really didn’t start until after my daughter was born. None of the Orthopedic doctors asked me either of those questions.    It’s amazing but just knowing why I had this was somewhat of a relief.

MY FIXES

I asked the same pain doctor if he thought pain injections would work.  He described how he would take this giant needle and stab it into my leg in two different places.  Did not sound very appealing to me.  He could not guarantee that it would work, or for how long it would give me relief of pain.  Being a afraid  of giant needles I decided to not try it.

My first fix that seemed to really help was I got a job away from a desk.  I am now up and moving eighty percent of my day.  I also went and bought all new athletic shoes.  I tried a bunch of them on and found that Saucony running shoes felt the best for me.  They are the only type of athletic shoes I wear now.  I have a pair for home, and a pair I wear at work.  I have found that I do have to replace them every six months or so depending on how often I wear them. My work shoes that I wear eight hours daily, definitely get replaced every six months, but I can stretch my home shoes out out about a year.  At my previous  office job that I had I wore high heels every day.  Decreasing the amount of time I am in high heels has also really helped.  The more support my shoes give me the less my shins hurt.

My second fix is I started exercising.  Now I am not a big girl, tiny at about 115 lbs and 5’5”.  I didn’t start exercising to get rid of my knee pain.  I started exercising doing full body workouts.  I do Jillian Michaels Kickboxing video, and I have done the 21-day fix videos.  The consistency of working out has greatly decreased my pain.  Where the physical therapy exercises focused on leg exercises, these other exercises do a lot of full body training.  So my legs aren’t overly tired on top of being in pain.  The stronger my body was getting the pain was starting to fade.  I can now fully bend my knees without feeling like they would just rip apart and I now don’t have the leg pain from the malalignment after I exercise.  Running is still a big no for me, the pain gets worse with long running.  But I don’t have any lingering pain if it’s in small amounts of running around the backyard with my daughter or casually playing basketball or soccer.    

Sometimes at night I cannot fall asleep due to my leg pain.  Some quick fixes I have to just alleviate the pain without taking pain medicines are Icy Hot and R.I.C.E.  Icy Hot is nice at night when you can rub it on and you feel the relief instantly.  It does not last for a very long time on me, so I use it mostly before I go to sleep just to get myself to relax and not dwell on the leg pain so much.  R.I.C.E: Rest Ice Compression Elevation.  I ice my knees on days when they really hurt or feel like my kneecaps are going to explode out of my legs.  The ice numbs my knees and gives me relief that way.  Neither are life changers but with my other fixes to just take the edge off on bad days without having to take medicine I like to keep these on hand.  

RESULTS

I still have pain on occasion.  And I have noticed that the weather sometimes plays affect to how my knees feel.  When older people say things like, “Oh it’s going to rain my knee is acting up.”  Yes that is now me.  When the atmospheric pressure is up  I can almost directly feel it in my legs.  I continue to do lots of activities; basketball, soccer, dance lessons.  Where before I would come home from work ready to weep from the pain my legs were causing me, I now only maybe have a handful of days where the pain gets that bad. With my Saucony shoes and my exercises I can walk around Disney World amusement parks walking 10 miles a day and not have any discomfort.  Where my pain was when I first started finding out things about this five years ago I could never imagine walking that far. Miserable malalignment syndrome is miserable to say the least but it is also manageable.  

Share

HealthStatus has been operating since 1998 providing the best interactive health tools on the Internet, millions of visitors have used our health risk assessment, body fat and calories burned calculators. The HealthStatus editorial team has continued that commitment to excellence by providing our visitors with easy to understand high quality health content for many years.

Dulcie Walters
20. March 2021
Dulcie Walters
20. March 2021
It's not often caused by running, normally its a genetic predisposition or can be created by the way you sit from ages 1-5. I'd ask your mum if you used to sit with your legs in a 'w' shape as this is often a presenting idea of MMS

Wilson
1. November 2020
Wilson
1. November 2020
I’ve been living with this condition first started to effect my life when I was twelve ( I had noticed something was off about my knees a few months previous after a PE lesson.) At first I thought the pain was from a previous ankle injury I sustained in cross country the previous year. After I told my parent that my pain in my left knee was getting worse, we went to see the GP. The first one we saw said ‘this is just growing pains’ and ‘you’re not walking properly.’ My mother wasn’t to sure about this as non of my family have ever had growing pains. After about three months from that visit, my left knee started to ‘drop’, buckling every time I took a step, my hip would make a clicking noise and I could feel like a ‘pop’ . I was scared. I constantly felt like I was going to fall over due to the instability. My parents told me to stop walking like that, I was just trying to get ‘attention’. This caused me to become very frustrated and confused. After my parents finally believed me, we went back and forth from doctors to doctors for a year until I was finally seen by an orthopaedic doctor. I got an X-ray and an MRI. The X-ray showed nothing wrong with my legs. After discharging me, I got sent a letter 2 weeks later saying I have Miserable malalignment syndrome. A few months later I went to another Doctor to get a second opinion, he said ‘you will need surgery when you finish growing.’ I went to more Physio. However, after some miscommunication, nothing was done for nearly half a year. I have finally come to terms with the surgery. I actually want the surgery as I have had to stop all sports and limit my activity due to the pain getting worse. Both knees are buckling if they are too tired, the pain has spread to my lower back as well as my hips and feet. However, my new doctor said I ‘didn’t need surgery as people with my condition can continue with life as normal, pain can be managed by ibuprofen and People with this condition can just have physio.’ I am mentally and physically drained by doctors telling me to just ‘go live my life as normal.’ Well, I’m not normally a complainer or a pessimist, but I just need this to be said. This condition effect everyone with it differently. It doesn’t show up on X-rays which lead people to be frustrated, confused and want someone to believe them. I’ve only been living with this for a few years, but the aching, stabbing and just general discomfort can have a detrimental impact on day to day life, especially young and active people. I have not played any sports since I was twelve and have to watch my classmates run and jump around, walk normally. This condition needs to stop being dismissed and needs to have more research or support out there for people with Miserable Malalignment syndrome.

Paul Daniel
2. September 2020
Paul Daniel
2. September 2020
I'm not sure but I think I also have this condition. For years I've never actually noticed that my knees does not align with my lower legs or thighs until recently. It felt like forever since I had these leg pains, stabbing knee pains have just started to happen about 1 or 2 years ago (I don't much remember). I am only a 13 year old filipino whose trying to find out the causes of these pains and abnormalities. I've never seen a doctor for this condition and my mom's currently saving up money to get a doctor to check me up. So in the meantime, I'm trying to research on internet about this. I don't play sports, I don't run that much, I can't find anything that might've caused this. I did played running games when I was 6-9 years old though. But i don't think that's enough to do this to my knee's'.

Erin Li
6. January 2020
Erin Li
6. January 2020
I have had miserable malalingent syndrome since I was 10 and now I’m 13. I have had to travel over and hour just to see what my problems was. For 3 years my doctor told me the only was to stop pain was surgery but being ten I wasn’t so sure. I did physio therapy for a year and I got a second opinion for another hospital. In a few weeks I have to choose if i want the operation or not. I am. The condition has affected me in so many ways. I had to stop ballet (one of my favourite things). I had to sit out of some active lessons at school. This condition is such a pain and unless you have it others can’t fell the physical pain and mental pain.

Emma Paulokso
7. October 2019
Emma Paulokso
7. October 2019
My daughter has Miserable Malalignment Syndrome. She was very young when we found it, but we waited on the surgery and she is now 11. She had to quit playing cello because of her pain and degree of rotation. One of the things that we learned early on from her specialist was that there are both surgical and nonsurgical treatments for the root cause - rotational deformity. The right treatment for each patient depends on the type and severity of their deformity. Her degree of rotation was too severe, as seen by the proper test of a laying down MRI (Other studies recommended may include CT or ultrasound of the hip, and for the lower leg, even between types of CTs there is a discrepency, so you have to know exactly how it is done see article about the femoral readings and variance here: [Link deleted]) was too severe for exercise alone to correct or relieve the pain. In fact, the ball in her hip was already causing damage to her labrum, and exercise aggravated this injury. You need to push for the proper imaging, because they don't always do that for a variety of reasons, the imaging is more expensive than x-rays alone, most cases don't need the detailed imaging to start therapy, but it's always best to get a clear picture before you begin any treatment so you know exactly what you are dealing with. At most places that don't specialize in this type of condition - or who have not seen it a lot, you will have to literally DEMAND the additional imaging. Make sure that you ask them if the insurance is a hang up or preventing a imaging study, and if that is the case you can decide if you are willing to pay for it out of pocket. Insurance wouldn't do it and making sure we knew what we were up against was important for us. So, it was the right decision for our family -- if we had not more exercise would have continued to do damage. Surgeries have high success rate.

Eden
27. October 2018
Eden
27. October 2018
I?m 15 and have this but it?s not a major issue in my experience. I swim and play waterpolo cause the doctor told me it was best to stick to water sports. I honestly don?t have much pain even while playing sports. Sometimes I feel pressure in the back of my knee when I walk and even when I?m sitting but idk what it?s from. So yeah.... I?m not getting surgeries because I?d rather live with pain then not be able to play sports. Sports are litterally the only reason I want to live. It?s really degrading have miserable malalignment and seeing everyone running miles for PE and not being able to join them.... it?s also degrading benign teased about it. But whatever wadya gonna do???

Michael Broderick
2. June 2018
Michael Broderick
2. June 2018
I was 12 when this condition first took it's toll on me. I was okay for a year, and then at 14,it came back with avengence and never left. This was in 1995. My mom took me to so many specialists. None of them could help me. Some theorized that my pain was being caused by water in my knees, or juvenile arthitis. I've been through a lot in the past 22 years. The consequences were devastating for me, and on my life I had to give up sports, etc. I just learned about the name of this condition today, through research. The internet is such a blessing. It wasn't around at the time, and hasn't evolved into what it is until now. I think your grand daughter has a really good advantage in that she is not yet fully grown, there may still be time to correct her problem without surgery. As for me, 22 years later I'm still trying to find a solution. I gave up hope many times over the years, It's been like trying to solve a cold case; but now for the first time in a long time; I feel like I may be starting to uncover the problem and solution.

Stephanie
25. April 2018
Stephanie
25. April 2018
Hi! I have miserable malalignment as well. I?m 22 years old. After dealing with the pain and trying physical therapy I decided to bite the bullet and get the surgeries to rotate my bones. It was the best decision I?ve made. The pain is doable and I?m currently recovering from surgery on my second leg. If you have any questions let me know!

Darlene Rutledge
12. January 2018
Darlene Rutledge
12. January 2018
My 12 year old Granddaughter has been diagnosed with miserable misalignment syndrome. Our orthopedic doctor said just as well therapy you?re going to do physical therapy but I am thinking also of haveing a personal trainer to help her. What shoe is good for a 12 year old with this condition. and is there any advise for us .She is in pain all the time too young

Reply

Your email address will not be published

20 + seven =

Written by HealthStatus
Medical Writer & Editor

HealthStatus has been operating since 1998 providing the best interactive health tools on the Internet, millions of visitors have used our health risk assessment, body fat and calories burned calculators. The HealthStatus editorial team has continued that commitment to excellence by providing our visitors with easy to understand high quality health content for many years.

View all post by HealthStatus