Tag Archives: knee pain

Foot pain

Jaysus, I had no idea how painful it is to walk when your feet hurt and mine have been hurting  for some considerable time.  I first started having problems in about 2011 – not with my feet but with the inside of my knees.  I have high foot arches at rest, but when I stand and bear weight my weak ligaments cause my arches to collapse which makes me flat footed.

Photo of high foot arch

High arch at rest

Photo of collapsed foot arch

Flat feet on standing

When you have flat feet, your ankles roll in which means your knees and hips also roll in, causing a variety of problems from bunions to pack pain.  I have ‘knock knees’ because of my poor arches and this eventually caused strain, and therefore pain, on the inside ligaments of my knees.

Image credit Gait Doctor

I asked for a referral to my local Podiatry department and they gave me some basic Slimflex insoles to try, to which they added an arch support.  These support the ligaments so that the arches don’t collapse and help correct the position of the feet and consequently ankles, knees and hips.  They did help but didn’t eliminate my knee pain.

My original insoles had a 3½ degree arch support, so this was increased to 5 degrees.  It’s then that my ankle pain started and for a good hour each morning my ankles were so stiff I could barely walk, so the Podiatrist changed my basic Slimflex insoles for something more cushioned which frustratingly made no difference.

The following year I developed upper leg pain.  It was a hot, burning pain which started on the outside of both thighs and travelled both into my groin and down both legs.  This was eventually diagnosed as Greater Trochanteric Pain Syndrome and ended up with me being on crutches for 9 months.  I couldn’t stand, sit or lie without pain and barely slept as I couldn’t find a comfortable position in bed.

Image credit Mr Ilan Freedman

I wondered if this new hip pain was down to my orthotics so was referred for custom made insoles.  I waited 10 months to be measured and for the insoles to be made on the NHS, and they made my feet so painful I couldn’t stand it (‘xcuse the pun!).  How on earth insoles moulded to the shape of my own feet could make the situation ten times worse astounds me and it was after that the foot specialists gave up saying there was nothing more they could do.

Picture of an orthotic custom made insole

Look how curvy my feet are!

I paid privately to see a biomechanics expert, who turned out to be as much use as a chocolate fireguard.  She gave me some super duper shock absorbing insoles which helped my knee pain but gave me ball of foot pain which I’d never had before and charged me £80 for the privilege.  Holy schmoly it was like walking on the tip of a red hot poker!

If I didn’t wear orthotics my knees, hips and SI joint killed me and if I did wear orthotics my feet and ankles killed me.  Rock v hard place.

I was convinced there must be some insoles, somewhere, which would cure all my pain and eventually settled on G8 pros which are worn by cyclists.  They had adjustable height arch supports (v. clever!) which could be moved either up or down the foot and I had great hopes for them but frustratingly they didn’t help either.

Once my body gets an injury it tends to never fully go away and I develop a weakness there.  I’ve gone from having no foot pain, to having ball of foot pain, which migrated to outer foot pain which migrated to pain on the top of the first joint of my 2nd toe.  If I wear an insole which cures my ball of foot pain it causes either outer foot or toe pain and visca versa.  It’s soooo frustrating.  My inner knee pain has never fully gone and my greater trochanteric hip/outer thigh pain still comes and goes for no reason I can put my finger on.  In addition I’ve had morning ankle stiffness now for several years and I have no idea why.

This year, my outer foot pain has been the most troublesome and I’ve now bought myself some Salford orange flex gel insoles, to which I’ve added my own 4 degree arch support.  They’re one of the best insoles I’ve tried for my foot pain but have increased my knee pain (I’m sitting here with my inner knees on fire and I haven’t gotten out of bed yet!).  So I’m now wearing Boots knee supports which help my knees.  You can guarantee though, that now I’ve corrected my feet and knees my sodding hips or SI back joint will start to hurt – I cure one thing only to make something else worse!

It doesn’t help that I am receiving no help or guidance for my EDS and am just having to muddle along myself.  I’m not a biomechanical expert, a podiatrist, physio or orthotist and haven’t a clue why my body is packing up on me.  I also pay for all my orthotics, aids and joint supports which, when you’re on a low income, is bank busting (my new insoles were nearly £50, my knee supports £40, the G8 insoles I tried were £80, my crutches were £70 because the NHS ones crippled my wrists, and so on ad infinitum).

Y’know the story ‘The Princess & The Pea’?  I’m convinced me and her are related.  The teensiest tiniest thing seems to set my pain off and I wake each morning feeling like I’ve gone 10 rounds with Amir Khan.  The only difference is at least she got a freakin’ Prince at the end of it 😉




Biomechanical Assessment

Yesterday I had a biomechanical assessment at a sports injury clinic.  I chose them because they mentioned both hypermobility and marfan’s on their website, so at least they seemed to have some idea of the kinds of problems us bendies encounter.  They also work with professional dancers, who often also tend to be hypermobile.  The assessment lasted 90 minutes and cost £48 so wasn’t cost prohibitive.

The reason I went is that, over the past 2 years, I’ve had both hip and knee pain that I haven’t had before and I wanted to know what the cause was.  When I see the podiatrist on the NHS all she talks about is my foot arches, and when I see the Physio she treats me but doesn’t diagnose.  No-one diagnoses, probably because they’re clueless – not having an EDS specialist in the north of England is a pain in the arse.

There was more talking than actual physical assessment which was a tad disappointing, although she did fully take on board my mast cell issues (ie no manipulation, massage or drugs were on the cards) and my skin fragility (pertinent when using braces or insoles).  Having said all that I totally disagreed with her conclusions, so feel I’m not much better off than before I saw her.

She thinks that it’s the looming menopause causing my joint problems and my EDS is largely irrelevant.  Hmmmmm.  She’s just gone through the menopause herself and told me “her joints fell apart” which I’m not disputing.  But was she on crutches for 9 months?  Did she have to use braces on her knees?  Did she dislocate anything?  Of course not.  So how my EDS is irrelevant is hard to understand.  I know my fluctuating hormones are causing havoc with my body in all sorts of ways.  I also understand my collagen is buggered.  But I still want to know exactly what’s going on with my joints because until I understand why my joints are playing up I won’t know how to either stop the rot or manage it properly and I can’t see how anyone else could know how to manage the situation either unless they understand the cause.

She did assess my feet and concluded they weren’t that bad.  She did slate my current insoles, however, which I’ve known for some time aren’t right.  My NHS podiatrist has referred me to orthotics to have a moulded insole made, but the woman yesterday says they won’t be suitable for me because they’re made of very hard material (which to be fair the podiatrist had warned me about too) and will simply rub my skin off.  One of the reasons I went to the sports clinic is that I knew they did a much wider range of insoles and I wanted to see if they had something more suitable.  Which they did.  So I had a mould taken of my feet, using a foam box rather than plaster of paris as she was concerned that the force used to remove the plaster mould might affect my joints, and am having some custom made insoles done which are super shock absorbent which should minimize the impact trauma of my weight bearing joints, eg. hips and knees.  They cost £40 per pair, which isn’t too bad considering I pay £16 for my NHS ones and they’re next to useless.  Buying my own insoles also means I can get as many pairs as I like.  The NHS provide one free pair and after that you have to pay, if you can get them at all – I requested 2 pairs last year, waited 3 months, and then only received 1 pair!

She felt my knee pain, which is on the inside ligament of both knees, is due to my knees rolling inwards and, although insoles help, they don’t cure the problem.  She has given me some minimal exercises to do to strengthen the muscles on the inside of my thighs which are very weak.  To be fair she was very cautious and appreciated I can’t do normal exercises because of my ME which was great.  I have to sit in a chair with a soft ball or towel between my knees, raise my legs no more than 40 degrees and at the same time squeeze the ball or towel for 5 seconds.  I do as many repeats as feels comfortable, never getting to the stage that my muscles or groin area ‘burn’.  I then have to rest for 3 days to allow my body to heal (it’s the healing process which actually strengthens our muscles, not the exercise itself) before repeating the exercises.  It will be a very long process but at least it’s better than doing nothing at all.

I have been icing my knees at night and taping them during the day and have found that this is helping the pain, so she just said to carry on with that for the time being as the ligament is obviously inflamed and supporting it should help it to heal.  I struggle with regular joint supports, as the pressure sets off my dermographism (mast cell hives), and proper physio tape makes my skin itch like mad, so use a self sticking bandage from Boots which works for me as I can alter the amount of pressure applied and also means I can bend my legs without the support digging in the backs of my knees making my skin raw:

Photo of knee tapingThe clinic offer a 3D gait assessment which I thought would be really useful, but after chatting to the woman I don’t think she has enough knowledge of EDS to make doing this worthwhile.  She just seems to think that once I’m through the menopause everything will settle down and has no concept that I could actually end up in a wheelchair if my joint pain progresses much further.

So, was it worth going?  I think yes, if for no other reason that if I hadn’t explored this avenue I would always have wondered if it would have been helpful.  I also think the insoles will be great and just what I need.  However, I’m no further forward in finding out the cause of my progressively painful, stiff and unstable weight bearing joints or what to do about them.

Weekly roundup

I’m starting off with an apology.  I realized yesterday that I’d missed a step out of the recipe instructions for my Leek & Ricotta Cannelloni – ooops!  It’s now been rectified 🙂

My new (2nd hand) scooter has had to go back to the shop this week as it was losing power and I need it fixed before the warranty runs out.  I still have my little scooter, but it crawls along at a snail’s pace in comparison and of course can’t go over any rough terrain *sob*.

I had a follow-up appointment with my physiotherapist on Friday re my hips.  She was actually quite pleased with my progress, as I’m now not subluxing (ie partially dislocating) my hips willy nilly 10 times a day and my acute pain has gone – it’s only taken 3 months of doing absolutely nothing!  She now wants me to start some gentle water exercises to re-strengthen the ligaments, starting with just 10 mins and working my way up over the course of several months so as not to exacerbate my M.E.  I had planned on hiring a private pool with my neighbour, but she’s notorious for getting all excited about things but never actually following through and being as though she’s already cancelled on me once I decided to just use the public pool.  They do a special Disabled Swim for an hour on a Sunday morning, so I’m going to go along to that – the good news is it’s right opposite my Mum’s house so I can drop Bertie off there first.

We chatted about whether I could resume some short walks over level ground, and my physio said it was worth a try.  But she suggested I wear 2 pairs of Spanx (ie body control cycling shorts), preferably a size smaller than I actually am, which should hold my hip joints and ligaments in place and give them less chance to slide around.  As my big scooter is being repaired, and it was snowing in any event which means going out on a scooter isn’t do-able, I decided to walk Bertie this morning.  I got the spanx on, then my jeans, wellies and waterproof over-trousers and waddled my way like a constipated duck to the car to drive to the woods, in the hope the trees would shelter us from the worst of the weather.  Only when I tried to sit down to drive I felt like the spanx were cutting me in half and I needed a crane to get me back out of the car at the other end.  They might help my hips, but in the meantime my torso is going to die of oxygen deprivation 😉

The bad news is both my knees have now started to play up and tonight they are seriously painful 😦 . The physio was gobsmacked and has no idea why.  I’m just totally pissed off with sorting one issue out only for another issue to take its place.

My Physio is a senior specializing in Rheumatology at my local hospital.  My GP was very reluctant to refer me initially, as we have a physio team at my local health centre, so to make a point I tried them for 3 months and it was a disaster.  They knew nothing about EDS and the standard exercises they gave me made everything worse.  After that my GP agreed the rheumy physio might be a better option ;-).  Fran is lovely and just admits when she doesn’t know something or is at a loss about what to do, which sounds rubbish but is such a refreshing change.  I feel like we work as a team and she really listens to me.  She knows I know more about my body than anyone and just accepts it if I tell her I can’t do an exercise due to my ME.  She has several EDS patients and admits she gets really frustrated at not being able to help them more.  She’s going on an EDS training course at the end of Jan being run by Rheumatologist Dr Hakim, one of the UKs leading hypermobility specialists and medical advisor to both the HMSA and EDS UK.  It shows she’s really interested in EDS and genuinely wants to learn more about the disease which is wonderful :-).  We both agreed it’s diabolical there are no hypermobility specialists in the north of the UK (there’s a clinic in Manchester but that’s 100 miles south of us) and the situation desperately needs to change – I hope she brings this issue up with Dr Hakim when she sees him!

As I stated in my last Weekly Roundup, Wednesday night was results night at my Camera Club for the annual Millennium Trophy.  It has a set theme, and this year’s was that of a Composite image.  I knew I wouldn’t be placed, as the competition was open to the whole club which includes professional photographers, but it’s still nice to see everyone’s pictures appearing on the big screen and hearing the Judge critique them – you learn all sorts.   My picture of the flying boot was awarded 17/20 which to be honest I was dead chuffed about being as though I had no clue what I was doing.  But as the end of the evening approached my Couch Surfing picture hadn’t appeared and my heart sank in case my email hadn’t gotten through and the club hadn’t received my entry.  But, as it turned out, there was a reason my photo was last………….I only went and won the entire thing!!!  Yes my friends, I bloody well WON!!!!!  I get a trophy and everything, which apparently is awarded at the annual dinner in April.  I was so elated I can’t even remember the 7 mile drive home and didn’t come down off the ceiling until well past midnight 😉