pains in feet

[harrigan]

Hi _ I'm  awaiting diagnosis but have had blood tests with high ESR (108) each week for the past 4 weeks.  Initially went to DR with flu.  However, I have had awful sore red eyes with red veiny bits for 18 months (2 lots of antibiotic eyedrops did nothing); pains in hands and shoulder; very painful feet, especially on waking ( I have to walk downstairs sideways with my back to wall as my feet won't bend); treated for depression and anxiety since last summer; feeling slow and mentally sluggish/forgetful and struggling with work (full time teacher); pains from back of knees down to my feet and awful shooting, nagging ache or restless legs at night.

Does this sound like other people's experiences?  Also, would it make other injuries more severe?  I'm currently suffering bad whiplash after being KOd for 2 mins by a basketball to the face.  Really appreciate hearing from anyone who knows what all this feels like as I seem like such a moaner...

[Patze]

Hi harrigan,

Let me welcome you to the SJS World!  I'm sorry to have to meet you this way, but I'm glad that you've found us!

Have you seen an eye doctor yet?  How about a neuro?  Is the doctor that is treating you a rheumy by chance?  If so, what have they said about these symptoms?

Has your doctor tested for SJS?  If so, what were the results of of the tests?  Oh, that's one of my issues too, a high ESR, sero negative for everything else - amazing.

Hang in there, and hopefully your doctor will be able to figure out soon and help you. 

Again, welcome and hope that you can join us in the chat room soon; the schedule is on the homepage.

Take care -

Patze

[Scottietottie]

Hi harrigan 

Welcome to sjogrens world! I'm afraid we can't diagnose in here and there are a number of things that could cause the symptoms that you have.
As Patze said - have you been referred to an opthamologist? He/she would be the person to see because yoyur eyes sound most uncomfortable.
The other specialist to see would be a rheumatologist. He wopuld do the bloodwork for autoimmune diseases and ascertain what is going on.
I think it sounds as though your primary care doc his out of his depth.

I hope you get some appointments and answers soon.

take care - Scottie 

[Katybarstool]

Hi Harrigan

That must have been some ball game to knock you out like that! I understand that some auto-immunee conditions can be triggered by stress. Could that be what happened to you after being knocked out?

You have joined a wonderful family here, so keep in touch, and we will do our best to look after you.

Hugs
Kathyx

[wednesday mc haggis]

harrigan
welcome to the forum

hope you enjoy this place a smuch as i do

T x

[BonusMom]

I'd had painful feet for many years prior to my diagnosis of SLE and SjS.  I thought that everyone who'd gained some weight had the same thing--the heels so miserable after a short time of cleaning house or shopping, for instance, that I could barely walk.  I started Plaquenil at the beginning of this month and HOPE that it helps my sole(s)   I have discovered that flat shoes are the absolute worst thing for me--including tennis shoes!  I do better with a low heel which helps relieve some of the pressure.

Welcome aboard!

Lana

[harrigan]

Thanks Laura - I struggle to find shoes that are comfortable and acceptable to my Head Teacher.  Apparently crocs do not convey a professional image!  Hoping someone will reply to my email on 28th about how to change my name on site!!

[Chana M]

Hi

Your description of painful legs, feet, arms and hands is very familiar.  How about your upper arms too?  Once you get some treatment started you should get some relief.  Many people try a cover dose of paracetemol - up to 8 tablets a day is safe - and GPs rely on it for so many things now. Even a low dose of steroids should help with the inflammation, plus NSAIDs and/or other pain relief.  And once Plaquenil kicks in - it can take 3-6 months to take effect - you should really notice the difference.  The next few months waiting for diagnosis and treatment will be hard, but things will improve.  Even brain fog.

There's a discussion thread about comfy shoes which I think Pooh started a while ago - might be worth looking at.  I find boots with 1"-1.5" heels surprisingly comfortable.  I think it's partly because I find the pressure on my calves helps me walk better.  I also wear those slip on shoes with the chunky soles which look ugly but feel great.

I've just spent most of the afternoon with the neuro physio trying on leg braces, knee supports and other awful - but useful - contraptions.  Picture me in shorts, wool socks, clunky shoes and various leg braces strapped to me - then parading up and down the neuro gym with my trusty walking frame.  Now I know why I never wanted to strut the cat walk!  Not that it was ever likely to happen ...

Hope you're managing to rest and relax a little while you're off work.  Not long to half term either.

Chana x

[lynnmarie219]

Hi again!

I just responded to your other post but wanted to add a suggestion of writing down all of your symptoms that you mention here so you have it handy when you go to your upcoming rheumy appt. I do this all of the time as I tend to forget what questions I have or what new/changed symptoms I want to bring up once I'm in the office.....and all of my docs have been really good about my "lists".

Let us know how the appt. goes! Good luck to you!

[hoping]

I have nerve pain everywhere and very bad in feet.  Have you tried Lidoderm patches to your feet?  Have you seen a neurologist?  Is the pain a burning, pin and needles, prickly type?  If so, it would be worth seeing a neurologist too at some point.  Good luck with rheumatologist too.  No that you are not alone.  I suffer with major pain each day unresponsive to multiple meds.  I need a real diagnosis.

Karin

[harrigan]

Thanks Karin - yes, a burning pain but also feels like my feet won't bend and knees will crack!  Maybe I just have an overactive imagination!!  Hope you get sorted too - Good Luck x

[BonusMom]

I've just spent most of the afternoon with the neuro physio trying on leg braces, knee supports and other awful - but useful - contraptions.  Picture me in shorts, wool socks, clunky shoes and various leg braces strapped to me - then parading up and down the neuro gym with my trusty walking frame.

Oh-Chana, what a visual!

[Chana M]

Hi BonusMom

Sorry about that - probably too much information for your delicate frame of mind!  Shorts never did anything for me even when I was slim, and combined with socks and shoes I looked like a 'before' picture on one of those makeover fashion shows.

[BonusMom]

Hi BonusMom

Sorry about that - probably too much information for your delicate frame of mind!  Shorts never did anything for me even when I was slim, and combined with socks and shoes I looked like a 'before' picture on one of those makeover fashion shows.

LMAO!  Don't forget about the black lines over the eyes on the 'before' shots--like Glamour Magazine does to those fashion faux paus!    Thanks for the laugh today!

[ktfabian]

Hi harrigan-

I hope by now your doctor or doctors has been able to answer some of your questions for you.  I've been having terrible pain in my feet since the latest flare up of my Sjogren's in October following a surgery.  Mornings are the worst!  If I could figure out a way to get to the bathroom without having to use my feet I would do it.  I have both neuropathic pain and just regular old bone pain and it's the bone pain - where it feels like every little bone in my feet is breaking as I try to walk for about the first half hour or so after waking.  That first walk from the recliner I've been sleeping in (a long story for another day) to the bathroom are just awful.

A lot of what you describe sounds like Sjogren's, and I can certainly sympathize with you on just about every symptom you describe.  I hope you get some relief soon.  Please, if you're waiting to see an eye doctor, stay away from OTC eye drops that have preservatives and the stuff that gets the red out.  My rheumatologist said both of these ingredients may make the irritation worse.  I like the drops that specify moderate to severe dryness as they're a bit thicker and more soothing for me. I also keep those individual vials of eye drops that you can buy in the refrigerator for when my eyes are particularly irritated - the coolness feels great.

Best of luck to you and don't be afraid to ask questions, we've all learned from each other,
Tracy