Please excuse the length of this post but I’m desperately seeking answers.
Back in 2015 I was trying on a pair of trousers and my left ankle gave way as I lifted my right leg. The pain came completely out of the blue like a bolt of lightening and was excruciating! I was convinced I broken my ankle although I knew how ridiculous it sounded when comparing the method of injury.
I went to the hospital and had an x ray and was told everything was fine it was just a sprain. I was in bed for 8 weeks literally unable to put any weigh on it, with everyone reminding me it was just a sprain and I needed to get in with it. After 8 weeks I went back to my Doctor insisting there was something wrong because I was still in agony but he insisted It was just a bad sprain.
At this time I was due an appointment with an Eds specialist to confirm my diagnosis of Eds. I felt the injury must be Eds related and was sure he’d know what was wrong. He sent me for more x rays and declared it was just a symptom of Eds and nothing more.
By 12 weeks I was still in agony when trying to walk. I’d purchased a space boot of amazon to help me get around. I was in bed feeling sorry for myself and suddenly realised I couldn’t move my toes or bend my ankle side to side or up and down. I was terrified!
The next day I went back to the doctor insisting there had to be something they were missing. I was then diagnosed with Peroneal nerve damage (drop foot) the Doctor referred me to a physio and eventually I was able to move my foot again but the whole experience was terrifying.
Since that incident 2 years ago my ankle/ foot hasn’t recovered and each time I’ve seen my doctors or consultants I’ve raised the issue of the problem with my foot but they’ve basically ignored my protests and insisted I’ve had the necessary tests and there’s nothing wrong.
I’m only able to hobble around for a very short period of time before I’m in extreme pain and need to rest and ice my foot. After a couple of days I’m able to repeat the process and that’s been my life for the last two years.
I mentioned to my rheumatologist that the only outstanding issue relating to my health that I couldn’t get any answers for was my foot. I told her the whole story and she arranged an MRI. She agreed there was definitely something more going on and was confused why no one had done an MRI and why the issue had dragged on for so long. She arranged a scan and referred me to the podiatry unit, she believed that the foot specialists at this unit were more likely to solve the riddle of my foot.
Yesterday I finally got the results of my scan. I have two serious fractures and a ruptured ligament. He said the injury is extremely unusual The consultant says he doesn’t understand how I could have such serious injuries from the method of injury I described he insists there must have been some other type of injury prior to the one I describe. He is at a loss what to do and is going to arrange a case meeting with the consultants at the hospital to discuss the next steps. He said from a consultants point of view my injury was exciting in the sense that because it’s so unusual it will be something they can learn from.
Has anyone else had a serious injury which has been caused by a low trauma incident? I’ve lost two years of my life to this injury and I’ve suffered the looks and the comments from all the people who thought I was making it up or exaggerating the injury. If this is something other Eds suffers have knowledge or experience of I would be grateful for their stories.
💐
Written by
rosserk
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I’m sooo sorry about your injuries and the length of time it’s taken to get it sorted. You poor thing.
I have 2 odd stories about my EDS journey.
In May and June of 2014 respectively while in bed I pulled on a pillow to rearrange it and damaged ligaments and nerves in my right arm. The other incident I was in bed exercising my feet ankles doing light stretches up down right then left when my left ankle made a very loud popping noise followed by excruciating pain. Long story short extreme swelling edema constant excruciating pain inability to use it for 6 months. I went to our established foot doctor who isn’t good and we had been trying to find a new one for years. He misdiagnosed mistreated my ankle which caused complications with my other leg which is shorter and my scoliosis sciatica spine.
I suffered with this for almost a year and found another foot doctor. She is fabulous and got my MRI results back. My talas bone dislocated resulting in torn ligaments and tendons. I spent 4 combined months in a moon boot and my leg braces to prevent the proposed surgery. A few months later it happened to the right ankle from having to overuse it during the recovery of the left.
I must be very careful how I move as now my rib cage tends to slap my ribs together and during my virus violent coughing spells a rib bounced up and hit my heart and the right side the ribs moved so much that the connective tissues were injured too.
I KNOW from these experiences that injuries DO occur from low level trauma. You are NOT crazy...don’t let them convince you otherwise.
I’m still having problems with my ankles because the talas bones dislocate easily.
I hope you will be able to recover from your injuries and prevent future incidents. Take care and best wishes dear.
Thanks Honeybug my current injury is to my left ankle but over the last few days I’ve had a lot of pain in my right ankle. I thought it was due to the strain of me limping but I’m more inclined to think now that I have the same problem with my right foot. I definite haven’t fallen or injured it.
It’s interesting that you mentioned lying in bed exercising your ankles because I’ve been doing exactly the same thing and noticed lots of clicking and crunching and pain!
They didn’t give me anything for the pain or recommend any support they basically just sent me on my way and it’s extremely unlikely I will hear anything from them for months. I have an airboot which I purchased myself when I initially hurt mysel so I’m going to wear that as much as I can to protect from further damage but I really don’t think it will heal without intervention.
The consultant talked about drilling holes in the talas bone to encourage the formation of new bone and cartilage. The thought makes me feel 🤢
I was on an aerofit, makes a skiing motion back and forth, stepped off and there was this agony. Could hardly walk. 9 years later I still favor it and look after it. Not the magnitude of your pain and experience from the sounds, but the exact same experience that very little happened at all, if anything. I pray God gives you strength for your journey. He is all my strength and who carries me when I cannot walk further. Hugs and love
I’m sooo sorry about your injuries too. Isn’t it amazing that something we were doing to improve our health caused us such agony while others can do anything and take it for granted too.
I too am totally dependent on Him for all things. Wouldn’t be able to endure the lifetime of bad health and experiences without His tender mercies.
Please continue to be very cautious and take care.
I read others found genuine comfort here. I joined and hoped to give some. I'm shocked at what I've received. Thank you so very much sweet sister for the precious comfort you bring. Stay safe also! Xxx😘xxX
Thanks Saassii, I wish Doctors were more knowledgeable about EDs i think it was the mechanism of injury that threw the Doctors. If I’d told them I’d been hit by a car they might of done more to find the source of my pain, they are less likely to do so when they’ve been told something snapped when I stood on one leg. 😭
Just be on the watch for any type of mold/bacteria. EDSers are the most susceptible people of all. Fragile skin is easy work for mycotoxins. The "dreaded gene" rendering those most susceptible are described as extremely tall with hypermobile joints. Stay safe! 😘
I unfortunately learned this the hard way. Most people take viruses seriously, they're aware they make people sick. They'll even take the concept of bacteria quite seriously, knowing there may also be dire health ramifications. But generally people don't tend to take mold seriously. They just think it's so common, a bit in the shower, maybe some on a ceiling here or there. But it's deadly. Especially to those with EDS. Google eds/mcas and you'll find info. Ultimately once you can see mold, bacteria was already long present. Nasty combo. The mycotoxins that ensue cause debilitating illness the patient is so often not aware of the cause. They present with multi system illness. It's because they're genetically more susceptible and don't detoxify it as easily, but rather recirculate in their system. Once you see dust, mold is present, bacteria also. So if you can see it, it's a problem. Especially to those with EDS.
Saasi: your words are vvv wise. I wonder: do you know your immunoglobulin levels, especially IgG, IgA, IgM? If these are low, this can compound hEDS suseptibility to infection (bacterial, viral, fungal) big time. I kniw because mine have been chronicall below range (hypogammaglobulinaemia) all my life. My Immunologist helps me manage this
I my case early onset consistently way below reference range IgG, IgA, IgM...+ in my case also chronic early onset lymphopenia and nelow range complements (i forget if you know i have infant onset systemic lupus).
BUT there are casees of temporary secondary hypogammaglobulinaemia etc, eg due to long term immunosuppression drugs (my case is not due to my meds)
Hi rosserk,
I think your first injury was the ruptured ligament which EDS can explain. Because that was not diagnosed and treated you may have fractured your bones.
I had a partial ruptured knee ligament just because I stepped outside a porch and miscalculated where the floor was. I didn’t even feel pain on my knee, just my ankle!
Have you ever had a DEXA scan to check your bone density?
I think you might be right, that was always my initial thoughts. I expected the Consultant to say you’ve ruptured a ligament/ s. I never expected a fracture let alone two! 😭
Great discussion rosserk! So glad you posted! Just want to say: YES! During my 64 years this has happened several times...so i’m v much relating to dear honeybug EJ’s replies!
The latest hughly unusual low impact fracture to elude diagnosis & fascinate my consultants was in the big toe of my right foot which has Complex Regional Pain Syndrome (the CRPS Ground Zero is in it’s metatarsals). Because the fracture set the CRPS flaring agonisingly, we all MISSED the fracture for 2 FILPPIN YEARS, while medics’ xrays failed to see the fracture so i was tested for gout (neg) etc etc. after 2 years of CRPS horror, i saw a podiatry surgeon privately, who orderd an MRI (without contrast due to my allergy) and had his most expert radiologist study it...he found ALL SORTS of significant sinister long term stuff in both feet that all previous NHS MRI reports had quite simply chose NOT TO MENTION...and of course he identified the fracture. My hero podiatry surgeon said neither of them had ever seen anything like it...this was last winter...since then i’ve been seeing the podiatry surgreon’s fav podiatry colleague privately (she also works for the NHS at the same top ranking specialist Diabetic Feet Service Clinic), and together we’ve managed to settle the CRPS down enough so my sad debilitated feet are more able to bear weight.
Having read through this discussion, i know i need say no more...we are not alone...we need to stay very vigilant and be very well informed + proactive! There are medics out there who can help us, but, as you’re experiencing, sometimes finding these special ,edics takes a lot of time and effort, during which we struggle big time...it is what it is...thank goodness for the solidarity on this wonderful forum
Thanks for sharing your story BarnClown I hope you’re feeling better soon. I have my fingers crossed I don’t have to wait too long for the surgeons to sort my foot. 💐
Thanks for sharing this. My son has similar problems so are you able to give me the name of the private podiatry surgeon you saw as he needs to see someone who might be able to help. Thank you
Hi. I have been out of action so only just read your post.. As I was reading it I, recognised it and thought that I could have written it myself!. I don't know if you have read any of my posts regarding my ankle/ foot, so do forgive me if you already know this.. But in 2015 my ankle problems came on suddenly while I slept in bed at night. I screamed in agony with the pain, it was unbearable. Days after my foot and ankle swelled like a balloon. I felt 'fizzing' and 'tightening' sensations in my foot and the other foot had similar sensations but to a lesser degree..
I argued with Doctors and the rheumatologist I saw who did not believe I hadn't fallen or banged it. He tried convincing me I must have had some accident during the night, which made me question if I had been sleep walking.. I hadn't!.. I was in agony and unable to weight bare. I had to use two crutches for many months...It was discovered my 'problem' foot has a weak pulse at the ankle, and so I was sent to a vascular surgeon. But due to my immobile ankle and severe pain in it, I was advised a rheumatologist was my best option at which I agreed seemed more appropriate..
An mri scan detected tendonitis, tenosynovitis of the peroneal tendon. The rheumatologist ignored all my other symptoms and discharged me.. Still in severe pain and becoming increasingly more disabled, unable to flex my foot or rotate my ankle, I sought a second rheumatology opinion. It didn't give me any answers.
A year later, still in agony and barely able to walk at all by then, I was referred to a trauma surgeon.. Another xray and scan showed nothing other than inflammation. Despite the pain I was suffering, which increased by each step I took and put me back to square one if I placed my foot on the ground at a slightly wrong angle, the surgeon could only tell me that my ankle didn't warrant an operation. This was a relief to me, I wanted to know the reasons for it and knew any operation may have patched it up, but without knowing the cause, I felt it could happen again.. With now having more understanding of hEDS, I am thinking that I was likely to have been getting micro tears which are not detectable on xray or scans...At that time I had researched EDS and planned to see Dr Hakim next, and it was there that I received my diagnosis..
My specific ankle, foot -and also my painful heavy legs that prevent me standing or walking easily- has never been addressed properly. When ever it is discussed, the GP's and nhs Doctors I have seen are at a loss as to the reasons for it, and now I have my hEDS diagnosis it is assumed to be because of that, -even though they don't understand hEDS-and GP's are quick to ignore any mention of it... I think It most likely is all hEDS related, but when you have nothing confirmed it makes you wonder. I hope I will one day get to find out for sure, and I would like to be able to manage the pain better.. I continue to feel almost constant pain in my feet and my bad ankle, it has lost all mobility. Physiotherapy has not helped.
I am so sorry to hear of your pain and suffering, I know how awful it is and I hope you are able to receive good support and correct treatment from your medical team. At least they are taking an interest in you which sounds promising and I wish you every success.. I would like better understanding, help and support for us all from our local GP's and nhs medical professionals, so that we can better manage our conditions and live happier lives.
Thank you Tillray, sounds like you’ve been through the mill too! I hope you’re having lots of good days at the moment and managing to stay injury free.
I’m still waiting for an appointment at the hospital to see a consultant. My daughter works at our local hospital and apparently they have one surgeon in orthopaedics that deals with feet for the whole of my County so I’m guessing I’m going to be waiting a long time before my problems are addressed. The podiatry unit said my foot definitely won’t heal in its own and I will need an operation to repair it. I’m just hoping I don’t damage it any further in the interim, while I’m waiting! 😭😭
Thank you rosserk . I'm finding it a struggle if I'm honest. Hobbling around uses so much more energy, and I have to plan everything I do for it to be the least walking, standing and tiring. Whether I'm making a meal or going to the shops, my brain is constantly scanning for a place to sit and the quickest way to do it, or shortest route to take. My ankle is painful all the time and soon becomes severe with movement-or even just resting- and standing, walking causes pain in both feet and heaviness and pain in both legs which is exhausting and it renders me immobile. No one can give me answers which fills me with dread for what else it might be. I just wish I knew what was going on...Sorry to go on, its just a difficult time at the moment with my son experiencing a lot of pain and symptoms and now my lovely mum has been diagnosed with Alzheimer's. I so need to be in better shape than this right now!
I hope you get your appointment soon. I never understand how we can be left waiting for so long with such pain and injuries, but I expect its because there are just so many patients and few Doctors..
If you do have to have an operation, please be sure to give the surgical team all the information on the measures and safeguards that need to be applied for hEDS. This mostly applies to the skin to avoid scarring and also for Autonomic dysfunction, POTS. All info is on the EDSUK site and in Claire Smiths book.. I passed all necessary info onto everyone involved in my sons surgery. It helped them safeguard against potential complications while being prepared for others, and scarring was avoided. I am happy to say that It was a success🙂 .. Good luck with everything.💌 xxx
Omg, scanning for somewhere to sit! I know that one the other is the look of sheer panic on my face when I realise how far I have to walk! I know if I take a 500 steps today I won’t be taking them for another week or more because I will be laid up with ice packs wondering how long it’s going to be before the pain eases!
Think it’s a waste of time giving my Doctors any instructions they don’t take Eds very seriously even though they can’t explain the cause of my current injury! 😭
It sounds like we 'struggle' with the same issues. Whenever I've done any walking, my legs can take days, weeks to recover from it and my ankle is as bad as ever.. While fighting off Autonomic dysfunction symptoms or coping with the flare that leaves me ill and in bed sometimes, I try on better days to plod on regardless. And It is my legs, feet and ankle to stop me in my tracks. As painful as it is, its also frustrating and annoying! Surely someone, somewhere knows why and can help this?.. I hope you can get some real, lasting help to make it easier. Do let me know how things go.
I’ve finally had my appointment through to see the orthopaedic surgeon about my foot injury. It’s the end of January! It will be almost twelve months from the date in February 2018 that my rheumatologist said she would refer me to the podiatry unit and nearly four years after the injury. I am in constant pain and can only walk/ limp around for a limited period every day before I have to stop. If I walk to much I can’t walk for days without wearing an air boot which I wear on and off for days weeks at a time. The way things have been going I’m going to end up wearing it all day every day until January! 😭😭
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