23 May 2015

My Life with Freiberg's Disease

My Story

Many people who follow my Youtube channel may be aware that for quite some time now I have mentioned that I been waiting for surgery on my right foot. What I have not discussed before is what that surgery is for. 

For the past 17 months I've been living with a condition known as Frieberg's Disease. Freiberg's Disease or Freiberg's Infraction as it is also known as - is a rare condition characterised by osteonecrosis of the metatarsal head. This condition is usually prevalent in the second metatarsal head and is generally associated with a growth spurt or a trauma and is primarily diagnosed in young women. My condition however is a little different.

After spending months and months researching I have found that there is very little information available about Freibergs disease. Many websites tend to give a quick summary of the symptoms and presentation of the disease in the joints but none have yet seemed to touch on the subject of living with the disease.

While many cases tend to resolve themselves with quick diagnosis and specialised orthopaedic insoles, there are more severe cases which require surgical intervention.

It was December 2013 when all of this began for me. A stumble on New Years eve proved a lot more sinister then expected and I and was forced to rest at home until I could get to doctor the following Monday. When I got to the doctor she was concerned about the swelling and lack of feeling I was showing in my foot and sent me for X-rays to rule out a fracture a few days later. Following some x-rays I received a call to say that I had torn scar tissue around a previous fracture I had endured to my third metatarsal almost 7 years ago. I was prescribed rest and paracetamol for a period of 6-8 weeks. I was devastated! I had so much planned for the new year and now everything had to be put on hold. I admit at first I felt incredibly sorry for myself and spent most of the 6-8 weeks sulking and watching Netflix!

During my follow up visit in early February my doctor examined my foot which was still very swollen and tender despite absolutely no weight bearing for the 8 weeks I had been immobilised. During these eight weeks I kept my foot elevated and used crutches to get around. I was sent for another x-ray and it was during my checkup that I heard the term Freiberg's Disease for the first time. At first, I was terrified! I had no idea what that meant and I could not stop crying! To make it worse my doctor had no easy way to describe this disease to me. So I took to the internet. 

I found so many websites that gave brief descriptions of the disease but little to no concrete information after that. Everything I read made me feel so hopeless!

After another 6-8 week period of rest I returned again for a checkup. My doctor, concerned that my foot has still not improved decided I should visit a specialist to get a second opinion. It was during this time that the walking cast was suggested to me and I purchased one in an attempt to try and regain some normality in my life. 16 weeks of immobilisation, lack of exercise and lack of sleep had already started to take a toll on my body. I began to gain weight and feel incredibly down in myself. I felt like I was letting everyone around me down, most of all my husband who now had to try and provide for both of us.

The dip in my foot is not always a symptom, but a very obvious result of Freiberg's Disease following metatarsal collapse.
It wasn't until June that I was finally able to secure an appointment with the specialist orthopaedic surgeon my doctor had suggested I attend. During the consultation and following another X-ray the surgeon confirmed that I did indeed have Friebergs Disease, late stage IV with avascular necrosis in my third metatarsal. I was incredibly upset and he begged me not to worry. After much conversation he was able to put my mind at ease and assured me that this could and would be fixed. During the 6 month wait I had not been given any form of pain medication. I had massive problems sleeping and constantly woke up in agony. Sometimes my foot would actually lock and cripple my whole body. This consultants main concern was assessing me for  pain treatments.  Less than two weeks later I was admitted into the day theatre for a corticosteroid injection into the joint. This procedure was intended to alleviate my pain but sadly I got less than a week of pain relief after going through what I can honestly say was the most painful procedure I have ever endured. 

My first procedure for pain management failed to provide me with any relief.
On returning to the clinic in late August, the doctors told me they had been doubtful about the success of the procedure but wanted to try it as an option for me at least. An appointment was also made for me to meet another orthopaedic surgeon who specialised in performing surgeries for my condition. At this time I was put on a course of very strong pain medication to which I am still on today.

It wasn't until late September when I finally met my surgeon. He was so wonderful, so knowledgable about the condition and so reassuring that this would go ahead without a hitch. The only issue is that I am currently on a backlogged waiting list. What was an exciting prognosis in September has quickly lost it's momentum. 8 months on, several intensive physiotherapy courses later and still no surgery date. 

Every single day is like walking on glass.I have gone through three walking boots at this stage. I have gained 2 stone in weight due to a combination of lack of exercise, diet changes and stress. I am unable to put any pressure on my forefoot and heavily rely on walking aid to be able to try and function normally. Even lying down relaxing is agony for me. I am constantly in pain, constantly sleeping and constantly waiting for the post man to ring the bell each morning and deliver my surgery date. 

Living with Freiberg's Disease

While the combination of medication and walking aids has been effective, it is also mentally and physically exhausting. Anyone who has suffered from any form of chronic pain will tell you just how exhausting it is. I have been trying to keep myself distracted and motivated lately by blogging, filming for my channel and embarking on a healthy eating regime. I will admit - this has been hard as somedays all I want to reach for is comfort food and other times I just can't seem to shut down the worries that go on inside my head.

My first boot from PhysioRoom / My second boot from PhysioRoom / My third boot - Hospital Issue / My newest boot Physioroom
I think the worst part for me has been the fact that I cannot enjoy simple leisurely strolls like I used to. I often reach my limit even in the walking cast and a crutch for balance within 30 - 40 minutes. The rest of my body has obviously been affected by the change in movement to compensate for the immobilisation of my foot, as well as my obvious weight gain. In addition, I often find myself having back pain, hip pain or knee troubles. Most worryingly for me is sometimes considering if the longer I wait for this procedure is making my condition worse despite constant rest and lack of weight bearing.

Living with freiberg's disease has been a frustrating journey so far. I think one of the saddest things about this experience, apart from the constant pain obviously, has been people's lack of understanding. Freiberg's is essentially an invisible illness and some people find it hard to comprehend that the pain never really "goes away". 
I get comments like:
- Oh so obviously your foot is just broken?
- But you're only young - how can you have a joint disease!?
- Well you LOOK great!
- Can they not just do the surgery now?
- Why do you need to sleep all the time - its only your foot - can't be that bad!
- I would love to sit at home and do nothing all day.

While I appreciate people's concern, sometimes comments like that can be incredibly insensitive and upsetting to hear. As a person suffering daily with this condition I can assure you that no stone has been left unturned in my daily struggle to have this corrected. Why on earth would anyone want to continue to suffer with this? Saddest of all - I have no choice but to sit and home and rest because the pain is so exhausting - especially if I over exert myself. I deliberately avoid pushing myself too far because I know that I will pay for it in the days after. Even something as simple as travelling in a car is agonising. I also feel like if I tell people the truth, that I'm not "feeling great" or "doing better" when they ask me, that they simply won't understand. I've been in many positions where this has been the case. 

It is hard to explain the pain the Freiberg's inflicts, all I can tell you is that it can be anything from a mild dull pain to an unbearable debilitating, stomach churning ache that does not go away. 

While many cases of Freiberg's can be treated in the early stages with orthopaedic insoles and physiotherapy, I am one of the few that require surgery. 

I have been lucky enough to come across several people who have gone through something similar to me, and have been in and out of operating theatres with great success stories, so overall I am pretty confident that this surgery will go well. 

Right now, my concern is learning to love my body again. To treat it right and to motivate myself to lose some weight in the hopes that when I do finally go into that theatre - my recovery afterwards will be a speedy one. 

For anyone else out there suffering from Freiberg's there are several things I have learned to help me cope and deal with living with this condition:

- Take it easy. Don't feel guilty for needing to rest.
- If you can still walk without aid, invest in a good supportive pair of shoes.
- Take breaks as often as you need them.
- Put your feet up whenever you feel the aches starting - elevation really helps. 
- Hot water bottles / cold packs work wonders for my swelling.
- Don't push yourself. If you feel you have reached your limit, trust your instincts. 
- Seek medical advice if your pain becomes too uncomfortable or unbearable.

Rest and elevation is important. Here you can see the swelling around my metatarsal area which has pushed my third toe uncomfortably behind my second.
As well as this I have found support has been invaluable to me. I consider myself very lucky to have such a wonderful and supportive husband, family and friends who have helped me to realise that I am not defined by my pain. I would be completely lost without them.

Every day I hope and pray my surgery date will come soon, I cannot wait to literally be back on my feet again!  

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  1. What an ordeal you have been living with. I did a quick search and you are right, there is very little information available about your condition. I think it is very fortunate you were able to find the right doctor to be able to diagnose you and tell you what you are dealing with. Good luck and hope you find relief.

    Jacqueline Hodges @ Dr Koziol

  2. So sorry to hear about the journey you have had so far. I also hope and pray for you that the surgery date comes soon. My husband had an injury on his foot that put him into a lot of pain and agony. So I can only imagine what you are going through right now. Speedy recovery and great post.

    Agnes Lawson @ Pain Relief Experts

  3. I was just diagnosed with Freibergs disease today. I have been living with the pain for over 8 months and was just finally correctly diagnosed. I don't feel like the walking boot helped me, I just try to walk through the pain because I have two children to take care of, a husband, and am in law school. I also have a severely inflamed nerve in the same foot that I will start injections on next week. Hopefully we both get treatment soon as I know first hand the pain you are dealing with.

  4. I am so sorry to hear about your ordeal. I too have been living with foot pain and have been in a walking boot for a year now. I just had surgery on my right foot to repair a fracture and to reattach my dislocated second toe. When i was in the recovery room the doctor had told me that he believes i have the beginning stages of freibergs. When I asked for more information he was very vague and just said there's nothing to do and to just continue living my life. The whole idea of it worries me and i feel like i should be doing more then 'just living my life.' I called another doctor to get his opinion and i'm just waiting for a call back. Do you have any advise for me?

  5. I too have the same disease, but I dont have this much pain, I am living with that from last 3 years. Doctor has suggested a surgery to me, Dont know how successful it is.

  6. Amy, I do hope things improve for you. I developed Freibergs a couple of years ago in one foot, then managed to trigger it in the other one after tripping over- my previously healthy foot objected to hopping around on crutches for a few days! Currently both feet are relatively pain free; and I hope this will continue.
    Good Luck!

  7. I had surgey last month on my Freiburg infraction. Sunday will be a month. Recovery stinks, still lack of sleep. I have 3 cuts from surgery. My dr also found a floating bone the size of a quarter while doing surgery. I waited 2 years to have surgery after going through the boots, pills, creams and whatever else. I have crutches with my tall boot. One of my wounds opened and I have burn cream to put on twice a day. Lyrica and/or Gabapentin for the nerve pain and minocycline for infection. Oxy was horrible pain meds as I hate the fuzzy feeling. I have tremodol pain pills but again hate to take them. I'm hoping another 4 weeks and I'll be able to have somewhat of a life again. Trying to stay positive but the pain and recovery is still depressing.