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Ehlers-Danlos Support UK
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I can’t walk I’m in agony! Please help?

Hi

I did a bit more walking over the bank holiday than I’m used too and now I can’t walk! I literally can’t put any weight on my left foot it’s agony. I injured my left foot 18 months ago and it’s never completely recovered, I had a suspected Lisfranc fracture which was never confirmed. I feel as if my ankle is broken but it’s not possible because I haven’t injured it. I have been referred to the podiatry unit but my appointment is 9 weeks away. I can’t go to the hospital because I haven’t had an injury, I can’t get an appointment at my doctors for at least two weeks. I can’t believe there’s no help available for someone who physically can’t walk and is in excruciating pain. Can anyone shed any light on what’s going on?

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Sounds awful. My gps also have a 2 week wait, but if you say you need an urgent appointment, will often give you the option of the first cancellation which comes up. Also, if you phone up first thing each morning, sometimes they can juggle things round to give you a slot.

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Spoke to a ruse at the podiatry unit and she’s going to speak to a consultant on Monday hopefully he will agree to see me. 😟

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Am 64 with hEDS + infant onset lupus, both of which have made weight bearing on my feet & lower legs a lifelong nightmare.

When i’m your situation (and i have been quite often) i self refer to my NHS physio clinic where i insist on seeing a senior expert hEDS physio...the relatively young guy who has been caring for me through years of sinister severe stuff is good at helping me manage my issues while am waiting to see a consultant etc...and once i have convincing insight re what is causing the flaring awful stuff, he is good at prescribing rehab etc and preventative measures etc

🍀🍀🍀🍀coco

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How on earth do you manage to self refer? Not sure that’s possible where I live. 😟

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Am in East Anglis...our GP surgery reception has the NHS physio contact info...usually we have to go online and complete a NHS physio clinic’s self referral form...then they get back to us...i was lucky to get self referral to the same univ hosp i have my rheumatology & immunology + other clinics...this hosp has a v good physio dept...and the physio i got has been brilliant.

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I am so glad for you to have access to these services Coco. As we have discussed before, it is soooooo helpful, as well as being very reassuring to know that these knowledgable Doctors and medics are there, to care and manage the complexity of symptoms that are present, and which may suddenly arise..However, I have found that unfortunately for me and my son, knowledgeable EDS Doctors -and those with knowledge of related conditions- are thin on the ground at my local hospital.. I am no longer prepared to be passed around to no avail, so In the meantime I am managing everything by myself as best as I can, and holding off on seeing about some things until I can find suitable specialists..On the up side, I have found a podiatrist who appears to be clued up -I hope- with ankle joint problems being a speciality. I will at least be going there soon. Fingers crossed for success. Best wishes xxx

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Well Done 👏👏👏👏😘🍀

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You are so lucky that’s definitely not an option for me. 😩

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Am so sorry...well, you have got some really good replies...i hope you’re beginning to see a way forward...i do know how tough this is....i spent many years in constant pain, unable to stand & walk...i never imagined things could eventually improve as much as they have for me...take care 😘🍀😘🍀

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Depends entirely on where you live as to whether you can self refer - I live in an area covered by a weird Yorkshire rural health system and they do self referral.

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Hi rosserk... You have my total sympathy and understanding... I have lived with pain and heaviness in my legs for over ten years which has gradually got worse. This alone has always limited my walking ability and I am unable to stand for long without awful pain. In recent months I have began experiencing hip problems too. But two years ago out of the blue I developed ankle and foot problems..

I awoke from sleep in agony. I could not weight bear and the pain was excruciating. Like you, I couldn't get seen for several weeks despite being in agony unable to walk at all. When I finally had an MrI I then had to wait again for an NHS rheumie to tell me results. It showed tendonitis/ tenosynovitis in the peroneal tendon of my left foot. This had occurred without any strain or injury, completely unprovoked. There were complications as I was not given any treatment or help at the time. I was referred to a physio who said 'it wasn't a physio problem and so couldn't treat it'. No GP at that time knew what to do. (I didn't have hEDS diagnosis then. Although I am still finding it difficult to receive help from GP's or local nhs services)..

The ankle problem has caused me further disability in my lower limbs. I have an increased lack of mobility with not being able to flex my foot/ toes or rotate my ankle. I feel severe pain at all times along with all manner of strange sensations i.e ice coldness, vibrations,numbness etc. Walking is almost impossible because of ankle & foot pain and my painful 'lead' legs. My right foot and ankle is also painful. I have to strap my ankles up every morning before I get out of bed due to my ankle joints frequently subluxing. This might well have been what initially caused the tendon injuries? and micro tears happening since?

I am planning to see a private podiatrist (nothing available in my local nhs services of course) as bespoke orthotics were recommended to me by EDS specialist. I am hoping it will go some way to helping..I am looking to buy my first pair of smart crutches too ( its lucky I'm not well enough for holidays so can spend it on appointments and such instead!)

I know just how scary it is when something like this happens, and then when you feel as though no help is being offered quick enough only adds to the worry. I can only suggest you ring your GP and ask them to push for you to to be seen urgently, stressing the seriousness of your pain and disability. I did do this however and the waiting list was as it was, but might be different in your area?. I didn't go to A&E as I thought like you, but I wish I had gone. I think that way you may get seen sooner. Good luck and very best wishes xxx

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Thank you Tillray that sounds exactly like me although I think mine was possibly triggered by a little too much walking. I knew it was wise to stop and kept going anyway! I have a surgical boot and have worn that for the last two days and today the pain is bareable. What are smart crutches?

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I'm glad its a little easier for you at present. I hope things get better for you soon. smartcrutch.co.uk

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Silly me I googled it straight after I posted a response. I was considering an electric wheelchair but it’s not really a road I want to go down because I think it will be the beginning of the end. I have crutches but it’s a trade off between my shoulders, wrist , hands and elbows. I know if I use them I’m going to pay later! These look interesting but I’m not sure my right shoulder would take the strain? Let me know how you get on if you get some. Kindest regards 😃

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I know what you mean. Normal crutches strain my wrists and cause subluxations. My elbow is also really bad and the cuffs add to the pain and discomfort. Open cuffs are better for that and I use one or both around the house.But even with crutches I'm still in pain and can't go far, yet I'm hoping these will be better for when I use them out. They've had good reviews.

I understand your considerations about a wheelchair. I've been pushed in a manual one when has been necessary - and someone available- and for now I will wait before making this a regular aide. Although I have felt, without having to use energy which brings pain, and suffer to walk in so much pain which brings on illness, a wheelchair would be a cure to those and maybe then it would be possible to live life more and easier?..

I do have a road worthy mobility scooter which seems to be the best option for me right now to get out and about when able to -it requires maintenance and is out of use at present☹..Like me🙃..I must get it fixed- Cherrylee Houston off Coronation street has hEDS and obviously her wheel chair enables her to get on with her life🙂 It's definitely worth considering for when at that point - and I will- because living life the best way we can is what its all about after all...I guess the question is "when is that point"?..Best wishes xxx

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Hi there - oh my, this sounds SO familiar to a situation I encountered years ago. I finished work (worked at that time in the operating theatres) and came home only to find I kept "snapping" a tendon in my foot. Fortunately, I asked one of the orthopedic surgeons I worked with and he said - "how did you hurt your foot?" I told him I hadn't done ANYTHING but all of a sudden, part of my ankle kept giving out and was very painful and difficult to walk on. Because an MRI would be weeks/months away, he put me in a plaster cast right away to stabilize the joint until the MRI. He couldn't believe that I hadn't rolled my ankle, tripped or something else. I think he hadn't seen an ED patient before, As it turned out by MRI, I had somehow torn a tendon completely in half which required surgery (ruptured peroneal tendon). It's so easy for us ED folks to easily injure something without being able to relate it to an accident, etc. You may want to go to A&E to get it checked because I hate to think of you walking on your poor foot if there is something badly damaged in there. Sometimes WE have to be the ones to educate the medical "professionals" since a lot of them aren't all that familiar with our health issues. Good luck and let us know how you get on! A friend in Canada!! ; )

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Hi thank you, that’s really interesting

About 18 months ago I was standing by the side of my bed trying on a pair of trousers. As I lifted my right leg to put my foot in the leg of the trousers when something snapped in my left ankle. I fell onto the bed in agony. I went the hospital and doctors but no one treated it seriously probably due to the mechanism of injury. Eventually I managed to persuade doctors to order an X-ray but nothing was found. They sent me home with a suspected sprain.

After about three weeks I was laying on my bed with my foot uncovered when my daughter noticed a large bruise on the bottom of my foot there was no swelling or bruising to the top of my foot but it was literally impossible for me to stand and bare weight on the left foot. After 6 weeks in bed I suddenly found I couldn’t move my left foot at the ankle or wiggle any of my toes and it was still extremely painful to put any weight on the foot. I went back the doctors and they diagnosed ‘drop foot’ which is caused by damage to the peroneal nerve. I was eventually sent to physio and after a few months the nerve recovered. The injury lasted about 16 weeks, 12 of which I was completely unable to bare weight nd bed ridden. I later discovered the dark bruise on the bottom of my foot was indicative of what’s known as a Lisfranc ligament fracture.

My foot never recovered from this injury and the pain and problems I’m having now are the same as the previous injury. I think I definitely tore a tendon when I originally injured my foot and the doctors missed it. I had to buy an orthopaedic boot to wear until I was finally able to walk again. Over the last 18 months I’ve walked with a limp and my foot has been extremely painful at times. I just excepted I wouldn’t be able to walk about to much anymore but now it appears I will be walking even less than I thought. I am waiting for the podiatry unit to call some time today. The nurse is speaking to the surgeon to see if there’s anything they can do to help. I will let you know what happens.

Kindest regards from Blighty! X

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Sorry to hear you're another of the ED sufferers who isn't taken seriously. At times, we're almost tempted to lie about the cause of our injuries, otherwise, doctors won't even listen to us. I hope you've heard back from the podiatry unit and you make progress with them. Good luck and let us know how you get on!!

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Absolutely couldn’t agree more! I have heard back from podiatry and they have managed to fit me in on Friday. The problem is I’ve been wearing all orthopedic boot and my foot is much better than it was, which is another thing with EDs that makes us look like hypochondriacs! I’ve taken the boot off and I’m walking around hoping it gets really bad again so they can see what actually happens but it’s likely to cripple me for next week because there’s usually a delay from trauma to symptoms. 😭😭😭

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