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My Pain Story- Part One

I have had a very slight worry in the back of my mind for years that one day my posture issues would get a lot worse.  Having had previous issues with my posture in various ways I knew that it was only a matter of time before they would flare up again.  So I kept up my physiotherapy exercises for it even after my previous shoulder and back issues had died down.

Previously in my mid-twenties I had a frozen left shoulder that caused me some real problems for a couple of months or so.  Weekly physiotherapy including the use of an ultrasound machine used for massage helped a great deal, alongside doing daily exercises.  Since then I have been back to physiotherapy for shoulder and neck pain that I wanted to prevent from getting worse. 

However, the exercises only keep the problem at bay for so long before they flare up again.  Now I have major pain down most of my left side.  I have had minor twinges and aches most of my life, but last June was when I noticed things getting significantly worse again.  I was having more than my usual amount of sore hip muscle issues and the pain was a little different to just muscle weakness.   Then when my back became agonisingly painful on my usual walk home from town I knew that something was not right.    

So I booked an appointment with my GP.  She thought it could be the curve in my spine pushing on a nerve sending pain across my left side.  I was told to book with physiotherapy and to come back in if I felt I needed stronger pain medication than over the counter stuff.  Even booking with physiotherapy was easier said than done, with the self-referral system we have in our area, and when I did get an appointment they were so busy it was a wait of almost a month to actually see them.

Meanwhile my pain issues were getting worse.  Not only did my lower back and hip area hurt, but the pain was spreading.  Firstly down my leg to the ankle, then to my shoulder and neck and then my arm and even my left hand started to hurt.  The last straw was when my left hand became so weak I could no longer fully use it without pain.  This was the point I decided I needed stronger pain medication and went back to the doctor.  I was given Gabapentin tablets, which are specifically for nerve pain. 

I eventually had my physiotherapy appointment.  The physio agreed my posture is bad, but was unsure that I actually had scoliosis and was not sure that it was a nerve issue.  She referred me to orthopaedics since I had never actually seen them about my back and posture specifically before.  That meant more waiting for another appointment. 

I knew Gabapentin tablets take a few days to have much effect, but after nearly two weeks I still had no relief from them.  I decided the physiotherapist was probably right and it might not actually be a nerve issue, as the pills do not work on other types of pain.  I managed to get a phone appointment with a GP for different pain killers.  I ended up with prescription strength codeine based medication, which is helping my pain, although not as effectively as I would like.  I also worry slightly about being on them too long as they are an opioid and opioids are seen as quite dangerous to be left on long term. 

By the time I had my orthopaedic appointment it was September.  The orthopaedic specialist confirmed it is definitely not nerve pain and not scoliosis.  He suggested one of my issues could be tennis elbow, which to me sounded a bit odd as my elbow is one of the few places I do not have pain.  He seemed to think I have a series of different things which may be triggering each other.  He told me I have over reactive reflexes, but never told what, if anything, this could mean.  So after a thorough examination from both a physiotherapist and an orthopaedic specialist I was left with tennis elbow and over reacting reflexes, not really all that helpful.   

I was advised to attend the pain clinic.  However to do that I needed a GP referral, which meant waiting two and a half weeks.  What was even more frustrating was when I finally did hear from the pain clinic I had to ring them just to confirm I still wanted an appointment and to pick the hospital I wanted it at, then I was finally put on what I gather is a rather long waiting list to see them.  So I still do not have my appointment with them yet!

Then my right shoulder started to hurt.  I put this down to either sleeping on it badly or over compensating for the left, but the pain did not go away.  When it spread down the arm and to my right hand, with pain exactly like my left side I knew my pain was no longer isolated just to my left.  As frustrating as having a painful and weak left side was, now both sides are bad it makes daily functioning really tricky.  So far my right leg is pain free, and hopefully it will stay that way as my left leg has always been worse due to my hip issue and tends to be more sensitive.

Most recently I went back to physiotherapy as advised by the orthopaedic specialist.  I have been given some wrist and hand exercises to do to try to tackle my possible tennis elbow or whatever it is causing me pain in that area.  So now I do three lots of exercises that I have been given over the years for posture, leg strengthening and now hand and wrist.  If nothing else it could help to keep me functioning somewhat even if the pain is not lessoned.

I am pretty sure my posture issues stem from my hip issue causing me to walk with a limp and rather turned out gait for years and having spent a long time using walking aids in the past.  Perthes Disease might be described by experts as a childhood hip issue, but it has definitely affected more than just my hip and has left me with life-long issues.-

I am still waiting on my pain clinic appointment and will see my GP again next week.  It is all rather a tedious lot of waiting for appointments and so far not much progress, but we will see.  I will be coming back to this topic again when I have more to tell you.

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Perthes, Long-Term Effects

‘Perthes is a childhood disorder which affects the head of the femur (the ball of the ball and socket joint of the hip). In Perthes disease the blood supply to the growth plate of the bone at the end of the femur (called the epiphysis) becomes inadequate. As a result the bone softens and breaks down (a process called necrosis). Over several months the blood vessels regrow, and the blood supply returns to the ‘dead’ bone tissue. New bone tissue is then laid down and the femoral head regrows and remodels over several years. This is similar to how bone reforms and remodels after any ‘normal’ fracture or break to a bone, but takes longer,’

(https://www.perthes.org.uk/what-is-perthes-disease/)
As this quote says Perthes is a childhood condition that affects the hip in growth. However, I often come across adults talking in various social media groups as if they still have Perthes and some even swear blind they still do have it. Technically no one can have it as an adult, but you can have the after effects of having had it as a child. The after effects for me where Justas bad as the Perthes itself.


Not everyone who has Perthes will go on to have such bad after effects; some will have very little at all. It is said that the younger someone has Perthes the better the chances of a full recovery with less side effects, particularly those aged under five. I was diagnosed aged seven and my hip never seemed to grow back fully in the right shape or size.


Pain and hip replacement


I almost always had some kind of pain coming from my hip area, be it the hip itself or the weak muscles. The pain did not go away after the Perthes was said to have run its course due to the damaged state the hip was left in. Not all Perthes patients carry on having pain like I did; it depends on how well the hip grows back to its proper shape. In a lot of cases the ball of the hip does not reshape to fit the socket well, which can lead to a faltered ball, creating significant problems later.


It is said that patients who had Perthes are at higher risk than most of having osteoarthritis, one study of sixty people with Perthes put it as high as over fifty pecent and often at a younger age than normal. I was told I was developing the early stages of osteoarthritis in my early twenties. This eventually led to me using crutches on a daily basis as weight bearing on the hip became too painful. Then aged twenty-five I had a total hip replacement.

According to a fairly recent study ‘LCP patients had a significantly higher risk of THR surgery compared to sex- and age-matched control persons’ (https://online.boneandjoint.org.uk/doi/abs/10.1302/0301-620X.92BSUPP_IV.0920594c)

After my hip replacement I had a lot less pain from the hip area, but my muscles were very weak from lack of use over many years. Once I started doing more with the leg the muscles became sore. Pain after Perthes is very common in muscles suddenly being used more than they are used to. I have found physiotherapy very helpful for strengthening my muscles again.


Leg length issues and posture


Leg length discrepancy is common amongst those who had Perthes due to bone growth not being complete or loss of height due to flattening of the head. Also, some surgeries such as femoral varus osteotomy can contribute to leg length discrepancy, making it a now less preferred treatment for some surgeons.


I had a 1.5 cm difference in leg length before my hip replacement which caused me to limp. A long term limp is not good for your posture. I ended up having posture related issues. I had back pain off and on since about the age of eleven, nothing server, but early signs the way I walked was not good. Then in my late teens I started to get neck and shoulder problems which gradually got worse, till one day aged twenty-four I woke up with a frozen shoulder, which took weeks to get back to fully functioning again and still has twinges now and then.


Physiotherapy has helped a lot with my posture issues. Initially several sessions of massage using ultra sound with the physio gave me great relief, followed by doing the exercises she gave me every single day. I still do some of those exercises years later. The exercises prevent my posture issues from getting even worse and help a lot with the pain.


During my hip replacement my surgeon made sure to correct my leg length difference as much as possible, this has almost removed my limp entirely (apart from when my hip muscles are very sore).


Another thing that can be done is to have an orthopaedic lift fitted to your shoes or an insole used for less server discrepancies. An orthopaedic specialist can advise on this.


It is important to make sure any walking aids such as sticks and crutches are the correct height as this can also be a contributing factor for posture issues. I feel that years of using a cane did not help my back, leaning to one side.


Fitness and fatigue


Due to pain when using my hip much before my replacement I had a poor level of fitness. When you struggle to even walk well it can make exercise tricky. Swimming was about the only proper exercise I found that was not too painful. It made recovery from my replacement surgery slower as not only were my leg muscles weak, but I had become used to not walking very far at all. I had to build up my fitness levels again. Physiotherapy, aqua fit classes and walking more helped with this.


Another reason I was so unfit was the fact that I was tired most of the time. Constant pain is exhausting. Pain can affect your sleep, making it hard to get comfortable and fall asleep. I found when very tired my hip hurt more, making it even harder to get to sleep. I was also on some strong pain medication which probably contributed to how tired I was feeling. Fatigue made getting much exercise and doing much at all hard work.


Surgery outcomes


According to my research it does not seem to make much difference if Perthes patients have surgery as a child or not long term. Recent studies are now showing that surgery seems to be a short term solution and that in fact some surgeries such as osteotomies can make later surgeries trickier. In a lot of cases it is hard to know if the hip would have grown back and recovered anyway given time as it sometimes does in those without any surgery.
http://www.harboursidephysiotherapy.co.uk/Injuries-Conditions/Hip/Research-Articles/Hip-Replacement-for-Adults-who-had-Perthes/a~4365/article.html

Perthes Disease Frequently Asked Questions

These are some of the questions I get asked most on my Facebook page Adults with Perthes Disease and have come across on other Perthes related pages and groups.  I am answering them as best I can from the research I have done on Perthes over the years and on my experiences of having had it myself.  However I am not a medically trained expert in anyway and advise you listen to your doctor and medical team first and foremost.

Is pain down the leg normal?

Referred pain down the leg is common often to the knee or even feet. As a child I sometimes got shooting pains down the leg from my hip.  As an adult I get a dull ache down the leg possibly due to my bad walking style.  My feet turn out too much as did my knee before I had my hip replacement.  I have found orthotics (insoles inside my shoes) from podiatry helpful.  Mine have a slight slope on the heal to help turn my feet forward a little.

The non Perthes affected hip and leg sometimes hurt, should I be worried?

No, this is fairly common.  The good hip often has to compensate for the Perthes side by taking more of the body weight meaning the muscles sometimes become rather sore.  Perthes can affect both hips, known as bilateral Perthes, but this is quite rare, occurring in only about twelve percent of cases.  If the pain in the non Perthes hip occurs frequently and becomes really bad it is worth mentioning it to the doctor just in case to get it checked out.

How much should my child be non-weight bearing on the Perthes hip?

This is something you must listen to your doctor and physiotherapist about.  It depends on what stage the hip is at during the Perthes and re-growth.  Whilst non-weight bearing swimming is usually advised by physiotherapy as a good way to keep the muscles from getting too weak, so that when full walking does resume the muscles are not too sore.

What pain medication seems to be the most affective?

I will never advise specific drugs and you should never take drug advise online for safety reasons.  Without knowing a persons medical history it is not a good idea to suggest medications. People can have allergies to certain medications or find that the side effects outweigh the benefits for them.  What works for one person may not for another.  If you wish to try pain medication, talk to your doctor who can prescribe something for you.  A good doctor should keep an eye on you with regular check-ups when on any new strong pain medication.  There is a place for pain medication if used sensibly and they help a lot of people.

Any ideas on non-medication pain relief?

I found a microwave wheat bag very helpful on my hip.  When sitting or lying down it kept the hip warm and unlike a hot water bottle it bends around the joint.  When moving about a stick on heat pad can help, but must be stuck over the underwear and not directly onto the skin or it can burn.  A TENS machine uses mild electrical impulses to help with pain.  I found one somewhat helpful, but it took some getting used to the electric pulses.  A warm bath is great for any muscle or joint pain, especially with Epsom bath salts.

Is a chiropractor a good idea? 

A chiropractor uses their hands to help relive problems with bones, muscles and joints.  According to the NHS website they are considered an alternative and complementary therapy.  They are not widely available on the NHS and private treatment can cost anywhere between £30- £80 a session.  A chiropractor should by law be licensed, but is not medically trained as a doctor.  I have never been to a chiropractor myself and can’t say they are good or bad for you, but I would suggest trying a physiotherapist first as they are recommended by doctors far more often.

Would a memory foam mattress help?

I think a memory foam mattress might help a tiny bit, but not a great deal.  An orthopedic mattress is very expensive and night time pain can be helped in other ways, such as a microwave wheat bag or a cushion or pillow under the hip.  If a new mattress is needed anyway it might be worth asking your doctor what they suggest, but I would not rush out and spend a lot of money on one without some research first.

Is bed wetting Perthes related?

Not directly.  Many children wet the bed and it varies as to when they start and stop doing it.  It could be that the hip pain is causing anxiety which is in turn causing bed wetting.  Also getting up in a hurry for the toilet when in pain can be tricky.

Does Perthes lower the immune system?

No, some children get more ill than others with or without Perthes.  There is so far no link to Perthes and the immune system.

Is Perthes Hereditary?

Research on the causes of Perthes is being done.  In the UK an ongoing study suggests there maybe a hereditary link in a small number of cases, but not in most.  There does not seem to be a high chance of passing it on to children if you had it yourself, but I gather there is more research results to be published on this fairly soon.

As an adult I am experiencing back pain, is this related to having had Perthes as a child?

It could be, limping for years, long term use of crutches or a walking stick and walking with a bad gait can affect the posture.  I have had back, neck and shoulder pain on and off all of my adult life.  I have found simple exercises from physiotherapy help me a lot if I keep them up regularly.  A shoe raise in childhood can help to prevent limping all the time.

How can I get a buggy or wheelchair for walking longer distances or bad days?

Physiotherapy can provide wheelchairs, but are often reluctant for children as they think it will cause the child to become overly reliant on it and not walk as much as they should, but I found a wheelchair very helpful on my worst pain days and for days out with more walking involved.  You can contact your local Red Cross centre who often have wheelchairs and buggies to loan out on short or longer term basis.  The Perthes Association in the UK have good advice on where to get hold of any equipment you may need.  There are various local charities that help disabled children to get equipment; an internet search can often provide a link.  Some larger tourist attractions also have wheelchairs you can loan for the day, often worth asking at the ticket office or checking online before you go.

 

For more information on Perthes Disease the Perthes Association are very helpful and can answer a lot of questions you may have.    https://www.perthes.org.uk/

Another site you may find helpful, especially if you are in America is Perthes Kids Foundation http://www.pertheskids.org/