Trying to understand...

[Brunneria]

Hi Brunneria, you mention hyper mobile joints in your post above. I have recently been diagnosed with sudden onset hyper mobile joints and no one is able to give me a reason for it. I started off with pain in my muscles, pins and needles and a burning sensation in both my hands back in 2011. At that time there was no hyper mobility in any of my joints. Now I have sublaxation in both my thumb joints elbows wrists and ankles I'm in constant pain because all my joints move beyond the normal range and are not supported by my ligaments and tendons. The pain has improved significantly since I started a low carb diet and if I do eat carbs the pain comes back with a vengeance!

Can I ask if you've always had hyper mobile joints and if not what have you been told is the cause? Sorry to be nosey but I am desparate to learn as much as possible.

Hi, no worries! I will try and give a full history.

As a child i dislocated bits of me regularly - ankles, thumbs and elbows were favourites.
When i say 'dislocate' i mean that the joints would pop, look a slightly different shape, have restricted movement and HURT. I don't mean they would flop about like a broken toy.

Trips to docs and A&E led to xrays and disinterested shrugs.
Trips to an osteopath led to instant across-the-room diagnosis, a manipulation, another 'pop' and the pain would magically disappear.

When i reached adulthood, i developed a small tumour of the pituitry gland which is benign, but pumps out extra prolactin. Prolactin is the hormone that softens ligaments and tendons just before childbirth. So all mine are permanently soft and stretchy which means that my joints are unstable because of that too. Sudden sharp movements (tripping, falling, lunging to catch a falling object) will often be outside the scope of my joint-muscle-tendon capacity, and the joint shifts out of true, rather than pulling a muscle. So i get a dislocated ankle rather than a sprained ankle.

The more often, and longer a joint is 'out' the easier it is for it to go 'out' the next time.
My left ankle must have gone about 30x , the right maybe 20x
Nowadays, with the left one, i can reset it myself - i just flick and waggle it around, preferably in a swimming pool, and feel it crunch back into place.

However, as i have aged (nearly 50 now) my joints are a bit stiffer, which has made the injuries less common.

So the overall effect is still unstable, but not as silly-unstable as before.

I have to be very careful walking on uneven surfaces. Always wear DMs laced tight around the ankles, for walking the dog. Have dis-connected my sacro-illiac joint sitting down awkwardly into a chair. Elbows go bad if i carry heavy shoppng. That kind of thing. My neck went once with an emergency stop, while my head was turned. The impact with the head rest is what did it.

I have also learned to shun ANY sport. What is the point, when it is going to cost £40 a session at the chiropractor to repair the damage?

Interestingly, i have found the joint/tendon pain is MUCH reduced on low carb. I think that my body finds carbs very inflammatory.

 

[Lamont D]

Wow!

 

[rosserk]

Hi, no worries! I will try and give a full history.

As a child i dislocated bits of me regularly - ankles, thumbs and elbows were favourites.
When i say 'dislocate' i mean that the joints would pop, look a slightly different shape, have restricted movement and HURT. I don't mean they would flop about like a broken toy.

Trips to docs and A&E led to xrays and disinterested shrugs.
Trips to an osteopath led to instant across-the-room diagnosis, a manipulation, another 'pop' and the pain would magically disappear.

When i reached adulthood, i developed a small tumour of the pituitry gland which is benign, but pumps out extra prolactin. Prolactin is the hormone that softens ligaments and tendons just before childbirth. So all mine are permanently soft and stretchy which means that my joints are unstable because of that too. Sudden sharp movements (tripping, falling, lunging to catch a falling object) will often be outside the scope of my joint-muscle-tendon capacity, and the joint shifts out of true, rather than pulling a muscle. So i get a dislocated ankle rather than a sprained ankle.

The more often, and longer a joint is 'out' the easier it is for it to go 'out' the next time.
My left ankle must have gone about 30x , the right maybe 20x
Nowadays, with the left one, i can reset it myself - i just flick and waggle it around, preferably in a swimming pool, and feel it crunch back into place.

However, as i have aged (nearly 50 now) my joints are a bit stiffer, which has made the injuries less common.

So the overall effect is still unstable, but not as silly-unstable as before.

I have to be very careful walking on uneven surfaces. Always wear DMs laced tight around the ankles, for walking the dog. Have dis-connected my sacro-illiac joint sitting down awkwardly into a chair. Elbows go bad if i carry heavy shoppng. That kind of thing. My neck went once with an emergency stop, while my head was turned. The impact with the head rest is what did it.

I have also learned to shun ANY sport. What is the point, when it is going to cost £40 a session at the chiropractor to repair the damage?

Interestingly, i have found the joint/tendon pain is MUCH reduced on low carb. I think that my body finds carbs very inflammatory.

Thank you
You discribe the problems I'm having perfectly but mine only started to manifest over the last 18 months. Prior to a low carb diet I was taking a massive amount of medication which barely masked the pain. Someone only had to brush up against me gently and I'd yelp, the pain seemed to vibrate like a tuning fork and it was at least 30 seconds before it would subside. My husband would say don't be daft that can't possibly hurt. Since low carbing I've stopped taking all the pain killers and sleeping pills, the difference is phenomenal. I read about the two week carb challenge and tried it and it worked for me. I reintroduced carbs to test the theory and the pain came straight back! I'm still not totally convinced the effects will last and I'm terrified It will keep progressing. At its worse I had days were I could barely stand my ankles were so painfull and my balance was shot to pieces. The arches in my feet have dropped and I'm now completely flat footed. I've been waiting to see a neurologist for the last 4 months and haven't even had an appointment through.

How did you discover the problem with your pituitary gland?

 

[Brunneria]

Have you seen orthotic insoles? They are a wonder!
Available at all good chemists.
Nowadays, i don't wear any footwear that doesnt have arch support, or orthotic insoles. Makes such a difference! Pain at every step (without) or no pain at all (yippee!).
Try the chemist ones first. Referrals and expensive nhs insoles made for your feet would mean waiting for months and bankrupting the nhs.

When i was 16 years old, i had size 6 D width feet. By 30 yrs, i had size 8 EEE. All due to stretched tendons in the feet.

How did i find out about the tumour? Around 2000 i went to have a coil fitted, and my answers to the normal screening questions (when was your last period? 1981) made the lovely consultant (she was covering a shift at the clinic) start investigating. The clues had all been there for 20+ years, but no doc had ever picked up on them. A lot of women with prolactinoma (prolactin tumour) lactate, but thankfully i have always been spared that one!

 

[rosserk]

Thanks for taking the time to respond. At the moment I can't wear a closed shoe, I have a large ganglion on the top of my right foot which makes closed shoes really uncomfortable. The ganglion is pressing on nerves in my foot but is ok as long as you don't apply any pressure to it or bang it. I have seen the insoles and as soon as I've had found a pair of shoes that don't aggrivate it I will definately be getting some. At the moment I'm walking around in flip flops which is now starting to look ridiculous in the rain! Im constantly looking for shoes, I must of tried on hundreds!

Interesting that you say your feet are bigger than previously, mine are smaller! They have gone really skinny, boney and flat! Lol

 

[Brunneria]

Try birkenstocks. They have the support footbed and are open on top.
I live in them all summer.

 

[AndBreathe]

Thanks for taking the time to respond. At the moment I can't wear a closed shoe, I have a large ganglion on the top of my right foot which makes closed shoes really uncomfortable. The ganglion is pressing on nerves in my foot but is ok as long as you don't apply any pressure to it or bang it. I have seen the insoles and as soon as I've had found a pair of shoes that don't aggrivate it I will definately be getting some. At the moment I'm walking around in flip flops which is now starting to look ridiculous in the rain! Im constantly looking for shoes, I must of tried on hundreds!

Interesting that you say your feet are bigger than previously, mine are smaller! They have gone really skinny, boney and flat! Lol

I have no idea about hyper-mobility, so forgive me if my question leaves you thinking, "Are you insane woman?"

Could your Doc not drain your ganglion? It's just a gell filled sac.

I've had lots of ganglions. Indeed, I have one recurring one now on my left wrist. It gets bigger, then sorts itself out, if I give it enough of a decent ignoring. I've had one excised on my right wrist, and I'm pleased to say it hasn't recurred. It used to present and react differently to my left wrist. I've always declined the offer to drain my various lumps and bumps, as for me (once my right wrist was done) they're rarely troublesome in terms of my day to day living.

 

[rosserk]

I have no idea about hyper-mobility, so forgive me if my question leaves you thinking, "Are you insane woman?"

Could your Doc not drain your ganglion? It's just a gell filled sac.

I've had lots of ganglions. Indeed, I have one recurring one now on my left wrist. It gets bigger, then sorts itself out, if I give it enough of a decent ignoring. I've had one excised on my right wrist, and I'm pleased to say it hasn't recurred. It used to present and react differently to my left wrist. I've always declined the offer to drain my various lumps and bumps, as for me (once my right wrist was done) they're rarely troublesome in terms of my day to day living.

Yes I'm waiting to see about it being removed but my doctor wants to sort the other issues first rather than mess about with my feet and perhaps cause more damage with the hyper mobility. Hyper mobility makes the stability of my feet unstable so I'm always going over on my ankles. The support structure is weaker because the tendons and ligaments become over stretched and lose, any type of excision would further weaken the structure. I have been told it can't be drained and needs to be removed surgically and they don't want to cut open my foot at the moment. I have also had one removed from my hand surgically which has re-occurred and was a lot smaller than the one on my foot.