Food & Hand Pain

[candy176]

Since I was very young (as long as I can remember), mainly my feet and sometimes my hands would hurt. It feels like it's in the nerves, bones, or blood--nothing too physical. It's sometimes a blunt pain and sometimes extremely sharp, and usually goes away within several minutes. As I've been getting older, it's been getting more severe. I used to sometimes have to sit down after jumping on a trampoline for too long or running too much because of the pain, but now I can't run or jump more than a few steps/times without my feet starting to hurt almost instantaneously.

Then, I got dehydrated, and we found that when I get sick, especially dehydrated or feverish, my hands and feet start to hurt very much nonstop. Tylenol works, but not completely. Often it hurts a lot more if I lightly trace my finger on my feet when they're in one of their episodes. Now, if they are in shoes that are too tight, too cold, too hot, or in the slightest discomfort in any way, they start hurting. It's mainly in my toes and has almost never traveled to my heels. If my hands hurt, it is accompanying the foot pain and is on a more serious scale, and it's my fingers that hurt.

And, even when I'm perfectly comfortable, sometimes my feet start randomly hurting. I'll be sitting down, lying down, standing up, and all of a sudden it'll start, and I will immediately start to squirm. It stays on its own time, and I haven't found any way to reduce the pain or make it go away completely. Once it starts, however, there is no point in taking medicine as it just goes away in a minute or two. However, it basically rules my life. I have not run, jumped on a trampoline, or done any exercise in 3-4 years and I am tired of this limiting problem.

When my feet are not in these strange episodes, they are completely normal, besides for my heels pronating a lot and my feet are flat. I've gotten countless MRI's, blood tests, and foot-doctor visits, and no one has the slightest idea what it is. We haven't been able to rule anything out and we're not even sure what's causing it.

I've already visited an expert rheumatologist and an expert stomach doctor, neither of which found a single thing abnormal--so I don't have hypermobility syndrome, I guess. We have no idea what this is.

Here are my medical problems, so maybe this foot & hand pain is connected to one of them:

- I have oral allergy syndrome.

- My feet are flat.

- My heels pronate.

- I have a stomach problem that I suspect is IBS but we are not positive

[Patricia2015]

Hi, sorry to hear of all your troubles.

Just a short reaction as I have to leave house now. Have you considered custom made inlays, it sounds your feet need better support?

[candy176 in reply to Patricia2015]

I have custom inserts. Didn't do anything.

[Chris21]

I get random pain, mainly in my feet one of my problem is hypermobility and my ankles are 'loose' I have ankle braces, insoles and regular massages on my feet. Nothing makes the pain go away but they help ease it. I think the rhuemy consultant called it neuropathic?! I do also have auto immune diagnosis too oh and I too have flat feet and told not to do impact sports, ie jumping, running etc my hand also hurt from time to time but not as much as my feet.

Not much help I'm afraid.

[candy176 in reply to Chris21]

Yes, but it sounds like you have something very similar to what I have.

[Barnclown]

I too have a lifetime of very similar problems to you & chris. I'm 62 now & doing really well thanks to good physio rehab regimes & bespoke foot orthotics from my podiatrist (I think this is what Patricia means by custom made inlays) + my lupus treatment plan etc

Sounds to me as if you should be properly examined by a rheumatologist expert in hypermobility syndromes. Several of us here on forum have a hypermobility syndromes. These syndromes are not just about joint looseness, or subluxation or hyperpronation but also they are about characteristics of the connective tissues within your body - membranes etc (this is why some hypermobile people have heart, lung, nerves, gastroenterology probs including IBS issues even without a lupus diagnosis)

the website that has helped me most to understand my hypermobility & its implications for my health generally is the Hypermobility Syndromes Association's. If you're in the uk, this association can help you find the right expert rheumatologist for you....if hypermobility isn't your problem, then this type of rheumatologist should be able to suggest the type of consultant you should see next. Here is a link:

hypermobility.org

Hope you'll let us know how you get on

🍀 Coco

[candy176 in reply to Barnclown]

Thank you so much! This is really helpful!

[Patricia2015 in reply to Barnclown]

Thanks Coco, foot orthotics are exactly what I've meant by custom made inlays!

[littleeffie in reply to Barnclown]

Got there before me.

Def sounds like hypermobility type of probs and impact sport is a big no.The Ehlers Danlos syndrome site is useful too,

Hope you find some relief

[candy176 in reply to Barnclown]

I asked my mom; apparently we already saw an expert rheumatologist and found nothing. Anything else?

[Barnclown in reply to candy176]

Sorry, but you may need a second opinion....