Could It be EM

Hi, I've joined this group as i am having problems with my hands and feet and the doctors don't have a clue what it is and was looking for some advice. I may talk alot about my migraines too but i think they may be linked in me.

In spring 2014 one day i just started to feel really disorientated and my hand started to swell and ache ( like a pulsing) and were really hot. after a few days i went doctors, he seemed to think that i had an inner ear inflammation but didn't know what the problems with my hands was. Take Ibuprofen was the answer he seemed to think. After a few weeks i went back with my hand problem ( by this point the the fuzziness in my head would come and go, i also had a lot of other symptoms too which came with the fuzziness. ) for my hands they sent me to a physio, who thought it was carpal tunnel, ( by this point i was constantly looking for cold unit, filing cabinet and glass windows to cool my hand in work. They sent me for test for carpal tunnel all clear, she advised me it could be fluid on my spine and i was given exercised to do.

In the Autumn of 2012 my fuzziness kept getting worse, lights made me sick and i couldn't even watch my daughter on the tea cups in disneyland paris never mind go on them, but by this time the pains in my hands had more of less disappeared unless i was exercising and putting pressure on them like press ups.

In winter 2012 after crying all the way home from work cause car lights hurt my eyes and my friend going on that i may need glasses, i booked into have my eyes check. 2 days later 20/20 vision, the optometrist advised me that it could be silent migraines i was getting. back off to the doctors, yes it was migraines changing from a common migraines and giving me these new silent migraines (i've suffered from migraines since i was 3) so i was put on propranolol, i just wanted to sleep, so after three months came off them.

For most of 2013 i lived with the silent migraines and the aching, throbbing hands( which got worst when i was on holiday abroad), until October when i had 3 common migraines in 12 days, i went back to the doctors and demanded to see a consultant. Went through everything with consultant he put me on propranolol and amitriptyline.

Started the propranolol and amitriptyline at the end of December 2013. In jan 2014 i started running, no problems with my hands, the only time i remember having problems in 2014 with my hands was only holiday when i was pushing the pram and the temperature was really high and one run in July next year and when i finished the 5k i felt my hands, feet and head was on fire, i just wanted to scratch my head it was so itchy and my feet had tingling like pins and needles.

So to 2015, a couple of months ago my silent migraines started again i had a couple of 3 day ones and each time my hands started to swell, go mottled, ache ( like a pulsating) and go really hot. then when the silent migraine stopped it would stop.

Sat in the garden at easter when it was quite warm doing nothing but sat on the floor with my daughter paint my feet suddenly started to swell and burn and throb, i could hardly stand on them, ( it felt like when you have had a pair of heels on and have been stood up all night then you take the weight off and when you stand up you can't walk cause it burns - tried explaining this to my male doctor yesterday he didn't get it ) I actually put my feet in a bowl of cold water which i read after that it was a bad thing to do.

since then i've had problems no stop with my hands, the minute i exercise or a run, my left hand flares up and then my right, when i run, my lest foot started burn then my right and i end up with stabbing pains in my feet. Its always only the palms of my hands and the soles of my feet.

went to see my doctor, i've been tested for a few things main on being rheumatoid arthritis, all clear, went back yesterday to see a different doctor, what is it, we don't know?, could it be EM? never heard of it, off he goes to see a more senior doctor, comes back we don't think it EM but we can medicate you for it if you think its that he said, I said if its not EM what is it? we don't know, i left the doctors office with feeling frustrated and with a prescription for neurontin.

Please help me people, i got to the point on wednesday that i had to drive my school (10 minute walk) as my feet was so sore and it was so warm. and even then that hurt my feet.

I have a 5 year old to look after and i'm a single mum, this poor child has been through so much with my migraines and now shes having to see my like this.

Sorry to hear of the difficulty you've been having, Leann. That sounds like quite an ordeal. One of the classic symptoms of erythromelalgia is that a flare is heat activated -- meaning, when you put your hand or foot under a blanket or in warm water, it will invoke a flare. Likewise, elevation -- placing the affected limb above the level of the heart -- will help alleviate or prevent a flare. Cold compresses or cold water immersion will also alleviate a flare. As noted, the later is not generally recommended.

If you invoke a flare in the presence of a doctor, it can better help them understand the symptoms you are experiencing. I hope this helps.

Gosh! I can sure empathise with how frustrating it is not to have any answers - being ‘shrugged off’ and being passed from doc to Doc.
EM, as Carter mentioned, is triggered by things such as heat and excercise, and is relieved by cooling.
I hope you find some answers soon :heart:
If it turns out not to be EM , you might want to look into orthostatic intolerance - that might also explain dizziness, sensitivity to lights as well slight swelling, redness and mottling and a feeling of heat around your hands and feet - which can also be troggered by hot weather.

Thank you both, i will look into that too, All i wanted from the doctors was an answer to what it could be to start ruling stuff out. There we don't know answer was useless. I am going to start keeping a diary and take pictures so i know when and how bad the flair is and take it back to them.

Taking photos to your doctor or inducing a flare by putting your hand under hot water could help to let him/her see what it looks like. The following article may also help him/ her to get information about EM or any other article from Dr. Cohen

That's great thank you Domia, if my apportionment had been Wednesday they could have seen how bad it is but yesterday was cloudy and cold and my hand were like blocks of ice instead.