My podiatry appointment saga

My only health insurance is through the Veterans Administration so the care is not so good but I expected more than what I got. I wanted a note that said my feet hurt and to limit the hours I was standing on them in pain.

He walked in and I handed him some literature on EM and said to him, I think I have this condition. At first he elevated my chair so that my feet were sticking up in the air so I told him that would make my feet better and not show them what I was talking about. So he lowered the chair and looked at one red foot and then elevated it and watched as the color returned to normal.

He asked about spine conditions, muscular weakness and asked if I'd tried aspirin, and then read my chart where the Neurosurgeon said it wasn't neuropathic pain and the EMG was normal. So then he told me that I was a once in a lifetime condition when I walked through his door. That's sad because I told him 13 years ago I couldn't wear shoes and had to wear flip flops year round. I do believe this is an underdiagnosed condition. My daughter is 19 and has foot pain already.

So he's sending me to Physical Medicine and Rehabilitation service. Not sure why, but in the meantime I need to find out if there's a doctor anywhere near me that would be capable of diagnosing EM, because I know that he's not going to know either.

Cheryl

Dear Cheryl,

I am so sorry to hear about your disappointing consultation . Is IN the only state for you? Are you able to travel out of state? I will check the directory and get back to you tmw (its 4.30 am here - cant sleep as usual ).

Physical medicine usually means physical therapy . Whilst some of us have physical therapy to help with other issues such as oedema or atrophy, you still need an official diagnosis. More importantly, you could maybe be trying some of the firstline medications such as Gabapentin/Pregabalin etc.. Probably this Dr is sending you to Phy Med and Rehab on the premise that you have plantar fascistis. Are you not on any medications at all- for anything? Your profile doesnt really give much information .I tried going back through a couple of your posts but cant quite work out whats been happening. You mention lupus, plantar fascitis. Have you had ANA tests or other tests? How long have you had EM symptoms? Maybe you could update your members profile with a few more details when you feel well enough, it helps members offer you advice and support :)

Just wanted to mention cooling strategies and minimisation of triggers.One good way of better managing EM is via minimising tactics. Alina, Nel and I often say that its easier to try to deactivate the flare than manage it. Listen to your body, keep a pain dairy, photos, and see if you can establish any particular 'avoidable' triggers, say foodstuff such as deadly nightshade family - tomatoes, peppers. You are already aware of 'known 'triggers - heat (and extreme cold), stress, anxiety, fatigue, exertion , pressure. Also stimulants (alcohol, caffeine ), diet (any toxicity, allergies?), products - creams, fabrics, activities? So- what precipitates a flare - is it just 'known' causes. Could it be a medication? Does it occur after drinking soda or coffee? EM is such an individualised syndrome with regards manifestation, symptomology, development, management and treatments.

Cooling - Whilst you may be an EM'er who responds favourably to 'climatising' , most EM'ers respond to cooling http://www.livingwitherythromelalgia.org/page/cool-tips-1 My personal tip is wrap the flaring part in a sheet/cloth soaked in cold water( wrung out) and then position yourself under a cold air fan - on full. Dampness retains coolness/moisture by 70% Other tips are bio freeze topical gel, use chill pads 'chillow' or other icy products (socks/sandals from Natracure- see Amazon ), and avoid overly hot food/drinks, spicy foods, alcohol, caffeine etc.You could even try try Nel's wine cooler pads (its on cool tips)!

Lifestyle changes are also needed - clothing and footwear, pacing yourself- rest(elevate), diet, job change, environmental issues - temperature, stay out of sun, avoid central heating etc..

So, please dont become despondent. Plenty of things that an EM can try to better manage symptoms. I know you will get there :)

Hope you have a more comfortable night

Touch base with you tmw (Saturday)

God bless

x

Sent from my LG mobile

Thank you Mads for that thoughtful post.

I'm not sure where the profile is but I'll look for it.

I found this explanation of the difference between physical therapists and physical medicine and rehab: https://www.aapmr.org/career/students/PMRspecialty/Pages/medical-st...

Odd that the Podiatrist wanted nothing to do with it, but like I said it is the Veterans Hospital.

I've had this a long time. I know because I've worn flip flops for a long time. In 1998 the Rheum thought it was Raynaud's. However I never consider myself as having a flare, which is why I thought I didn't have EM for a long time. Although I've seen my feet turn red up to my ankles in warm weather, normally it's confined to the soles of my feet and standing aggravates it, shoes aggravate it because they get too warm and also while sitting I have to elevate my feet. The all over redness goes away when I elevate except the bottom of the feet which will stay red until normally the next morning.

Putting my hands in warm water makes them turn red but it goes away shortly thereafter.

The redness plus the heat that radiates from my feet, made me feel sure it's EM. What else could it be if the EMG is normal? I'm crippled in pain with this and cannot walk. I have no life. Sadly even with a diagnosis, that won't change.

I'm not on any medicine besides ibuprofen.

Cheryl

Dearest Cheryl,

Please do not despair. I was totally disabled and bedridden with EM ,but I am now able to mobilise a little on sticks. You havent even tried any of the firstline treatments yet! Whilst you await a consultation (im putting the Dr's names up for you ), try to minimise triggers and cool. EM management is really 50% lifestyle change (minimise/cool) and 50% medication package. EM is based on clinical presentation and patient questioning - there is no diagnostic. Best way to deem whether it may be EM is heat intolerance. Does heat induce a flare? Does cooling relieve/ease? Re; physical Med/Rehab, I looked that up for you , too :). In the UK it has a very different meaning. In USA it refers to pain management clinic lol!

You are clearly exhausted since fighting to be heard since 1998 takes it toll - bless you!.

Well Cheryl, from today start to prepare your 'evidence' folder, take flare photos, keep a pain journal and get some articles printed off on EM (Look under toolbox or Alina, Nel and I can send you). I am adding two articles to this post - to kick things off.

The profile to update is on your 'my page' . Just follow the link http://www.livingwitherythromelalgia.org/profile/hayley3

Touch base and let us know who you see and how it goes.

Good luck!

Big hug

x


Dr John Kincaid,
Neurologist
Indiana
University
Health
Neuroscience
Center
Goodman
Hall
355
West
16th
Street,
Suite
4700
Indianapolis,
IN
46202-­‐2267
(317)
963-­‐7441



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