Trying to nail down my situation and explain to my gp and specialist hand doctor

[fattyJr]

I don't know really where to start, but you gotta start somewhere. So i'll start from the beginning

I suffered a Road traffic accident in 2001 while riding my motorcycle to work. I was basicly fine ( as we thought at the time) apart from a broken left arm. was admitted to hospital and had a plate put in my forearm.

From then, It's slowly snowballed. fast forward a few months and was still suffering with a weak grip in my left hand. X-rays and mri scan showed a fractured scaphoid. fast forward yet again and the consultant at my local hospital basicly gave up and said nothing else could be done. So i muggled on for a year or so, still suffering with issues with my hands.

Was searching online and found out a leading hand specialist group ( pulvertaft clinic) was based in derby not far from me. So I made contact and got a appointment to see one of their doctors.

I have been under their supervision since 2009 and having had numerous surgeries on both my hands and wrists, I am coming to the conclusion I am at the point of pain management and not getting full use of my hands again. I have had numerous carpal tunnel surgeries, de-nervation of left wrist, removal of bone growth in left wrist etc. They have told me i have a high expectance of arthritis due to injuries and surgery.

Now comes to my stumbling on to this site. Since my accident, I have suffered with werid baffling symptoms that my doctors seem to ignore or not listened. When ever I try to use my hands (it can vary due to temperature, what i will be doing etc) I get what I can only describe as what starts off as a Clamping sensation on my wrists and then pins and needles with sudden increase of temperature in my hands making my hands go BRIGHT RED. This can stay like this for an hour or more. The pain i get can vary from a feeling of spiders crawling on your skin to a screwdriver stabbing into the back of your hands. I tend to get this more on my right hand (dominant hand)

Before my accident, I was just like my old man where it can be freezing outside and I would have nice warm hands (without gloves) but since accident I can't stand the cold on my hands. But I also can't stand to wear gloves.

At the moment, i am on medication for pain which is Co-Dydromol and 3 blood pressure meds (they said it was high) as they thought my pins and needles was down to this.

It's a really odd situation.

[Nel]

Just a few thoughts FattyJr: Are you on beta blockers? When I was on them I felt all my EM symptoms very acutely. When I have to wear gloves I wear fingerless compression gloves which I was given at the Hand Therapy Clinic in a London hospital. I can tolerate them for a limited length of time.
With regard to educating your doctors, take photos and print them out to take to any consultation. Also articles from reliable websites, links to which you will find here.
I had a compound fracture of my leg operated on with a plate and pins eight months ago and that leg is still deep red all the time but the other leg/foot is only red when I flare. That however was after four years of EM so not the same situation.
You could try aspirin which helps some people. Codydramol is my drug of choice for pain in my leg but does nothing for my EM. I believe that the antihistamine Cetirizine helps.
I am sure other members will have more useful information and advice.
Good luck.

[fattyJr]

Thanks for the reply Nel,

Not sure about the beta blockers. I am on the co dydromol and my blood pressure tablets which are amlodipine, ramipril and bendroflumethiazide. I had the same symptoms before them.

I have tried to take pictures but everytime i do, it not very clear. seems kinda blothy. I would have thought the specialists i see would know about this condition as they deal with cases all over the UK, But I will take them some info and see what they say as I am on the waiting list to have surgery on my right wrist. yet another boney lump and a ganlion cyst.

Like I mentioned above, I been looking to find out what could be the issues/cause and I seem to have found it.

[Nel]

Ok so it’s probably nothing to do with the medication.
It’s Thanksgiving today and our American friends are celebrating so it’s a quiet day on here. I expect you will get some replies when it returns to normal tomorrow afternoon.
I would just add that I saw four sets of dermatologists at famous London hospitals and none of them had experience of EM or had even heard of it. I was diagnosed by a neurologist who did know and saw me having a flare. He referred me back to the dermatologist with his diagnosis and they still took months to agree and could not help me because they had no knowledge of it. I was given a tube of capsaicin, without even an explanation of what it was, and sent on my way. I am still battling to find a doctor who can talk to me about EM with some specialist knowledge.

[fattyJr]

I know about the thanksgiving holiday, I have friends and family out in florida and alabama.

I got a mild flare today and hopefully got a pic. Let me see if i can post it up.

Don't know if it's very clear. when i do have a flare, the area above the index, middle and fore finger seems to swell and the blood vessels become very pronounces

[Trakat]

It also might be worth checking out a condition called Complex Regional Pain Syndrome (CRPS). My mother developed it after surgery to her hand in 2008 and still suffers with it. It's very similar to EM but in many ways more intense and painful. I suffer from EM and can control it to a degree by elevation of the limbs and temperature control but with CRPS it's quite persistent and very difficult to alleviate the pain.

[fattyJr]

it's very nice to see nice and clear information on a forum for a change. I am a member of numerous vehicle forums and some of the responses you see can make you quiver.

I will be seeing my consultant very soon so I will be taking some info with me and see what he says.

Today I had a mild flare up where just my fingers decided to be red and tingling, but the night is young and will probably have another before bedtime.

[fattyJr]

Spoke too soon. as if on a timer Both hand have decided to play up. I am going to have to buy a digital camera so i can take better pics
but here's what i got now

Right hand. Not sure if you can see the blood vessel hear index finger really pronounced.

Left hand (this one had most of surgery) same again very pronounced blood vessels.

[mads]

Hey there Fatty Jr,

Sorry its taken us couple days to connect ;)

Couple questions - you react to temperature - namely heat?. Are you in same pain without the flares i see in your photos?

This came on after surgery? Did it come on quickly?

So, this is not the first time we have heard of an injury or surgery leading to EM. Aside familial genetic ,EM may manifest randomly for unknown reasons (sporadically) or the condition may occur secondary to various underlying disorders, particularly myeloproliferative disorders, neuropathies, or certain autoimmune and connective tissue diseases. Evidence also suggests that erythromelalgia may also occur as an adverse effect secondary to certain drugs (e.g., bromocriptine, nifedipine, nicardipine) and specific antibiotics.

Abnormalities in the normal narrowing (vasoconstriction) and widening (vasodilation) of the diameter (caliber) of certain blood vessels can lead to abnormalities in blood flow to the extremities.I agree that it would make sense to assume some damage may have caused this. Must say, however, that rather infrequent that EM develops following an injury or surgical procedure(although as I say i know several people who have). Im so sorry if thats the case- thats really horrible luck.

Probably asking silly questions but could it be that you have a secondary EM to another underlying disorder or that this is medication induced? Do you have peripheral neuropathy? EM does rather mimic other illnesses such as Complex Regional Pain Syndrome/RSD. Differential diagnoses is a massive problem. How are you being diagnosed with EM? Is it based on asking you questions (symptoms/what triggers flares), clinical presentation and small fibre neuropathy tests?

A hypothesis of why some of us develop primary sporadic is stress. Im convinced that stress triggers some yet to be discovered gene variant in sporadic EM'ers and that this messes up our voltage-gated sodium channels- akin to familial genetic( ie: gain-of-function Na(v)1.7 mutations) . If you have primary sporadic EM (ie: EM that just started without any clear cause) with acute onset (ie quick and bad) you might find that sodium channel blockers like lidocaine gel compounds or patches really help.Quite a few sufferers find that they do.

You mention being on co codamol for pain ,which probably isnt really helping you much. Many neuropathic pain sufferers (EM, chronic regional pain/regional complex pain) take firstline treatments such as gabapentin(an anti epileptic drug licensed for use in chronic pain) and amytriptiline ( antidepressant that assists with pain/sleep). It is the norm that EM'ers are dismissed as most Dr's have never heard of the syndrome, let alone recognise or know how to try to help us better manage symptoms. It would be wise to ask to be referred to pain management. As Nel suggested print off some of the research and articles from the site. Go under toolbox (tab) and information new members to find.

Im going to look through my library for you to see what i have on this topic. Ill get back to you with some stuff- Ok :-)

We had some recent posts on this topic. Here are links:

http://forum.livingwitherythromelalgia.org/forum/topics/shoulder-frac...

http://forum.livingwitherythromelalgia.org/forum/topics/healing-rates...

http://forum.livingwitherythromelalgia.org/forum/topics/potential-com...

BTW: Did you want us to check our Dr database for UK. I think I remember we do have an EM aware Dr recommended by members for up North. Yes- you guessed I said up North which signifies Im more down South. But not as South as my dear Nel. Im Norfolk- so sandwiched inbetween lol!

Hoping you get a comfortable night.

We have broadcast your post so you should be getting replies pretty quick.

Big hug

mads

[Mexicanrose]

mads said:

Hey there Fatty Jr,

Sorry its taken us couple days to connect ;)

Couple questions - you react to temperature - namely heat?. Are you in same pain without the flares i see in your photos?

This came on after surgery? Did it come on quickly?

So, this is not the first time we have heard of an injury or surgery leading to EM. Aside familial genetic ,EM may manifest randomly for unknown reasons (sporadically) or the condition may occur secondary to various underlying disorders, particularly myeloproliferative disorders, neuropathies, or certain autoimmune and connective tissue diseases. Evidence also suggests that erythromelalgia may also occur as an adverse effect secondary to certain drugs (e.g., bromocriptine, nifedipine, nicardipine) and specific antibiotics.

Abnormalities in the normal narrowing (vasoconstriction) and widening (vasodilation) of the diameter (caliber) of certain blood vessels can lead to abnormalities in blood flow to the extremities.I agree that it would make sense to assume some damage may have caused this. Must say, however, that rather infrequent that EM develops following an injury or surgical procedure(although as I say i know several people who have). Im so sorry if thats the case- thats really horrible luck.

Probably asking silly questions but could it be that you have a secondary EM to another underlying disorder or that this is medication induced? Do you have peripheral neuropathy? EM does rather mimic other illnesses such as Complex Regional Pain Syndrome/RSD. Differential diagnoses is a massive problem. How are you being diagnosed with EM? Is it based on asking you questions (symptoms/what triggers flares), clinical presentation and small fibre neuropathy tests?

A hypothesis of why some of us develop primary sporadic is stress. Im convinced that stress triggers some yet to be discovered gene variant in sporadic EM'ers and that this messes up our voltage-gated sodium channels- akin to familial genetic( ie: gain-of-function Na(v)1.7 mutations) . If you have primary sporadic EM (ie: EM that just started without any clear cause) with acute onset (ie quick and bad) you might find that sodium channel blockers like lidocaine gel compounds or patches really help.Quite a few sufferers find that they do.

You mention being on co codamol for pain ,which probably isnt really helping you much. Many neuropathic pain sufferers (EM, chronic regional pain/regional complex pain) take firstline treatments such as gabapentin(an anti epileptic drug licensed for use in chronic pain) and amytriptiline ( antidepressant that assists with pain/sleep). It is the norm that EM'ers are dismissed as most Dr's have never heard of the syndrome, let alone recognise or know how to try to help us better manage symptoms. It would be wise to ask to be referred to pain management. As Nel suggested print off some of the research and articles from the site. Go under toolbox (tab) and information new members to find.

Im going to look through my library for you to see what i have on this topic. Ill get back to you with some stuff- Ok :-)

We had some recent posts on this topic. Here are links:

http://forum.livingwitherythromelalgia.org/forum/topics/shoulder-frac...

http://forum.livingwitherythromelalgia.org/forum/topics/healing-rates...

http://forum.livingwitherythromelalgia.org/forum/topics/potential-com...

BTW: Did you want us to check our Dr database for UK. I think I remember we do have an EM aware Dr recommended by members for up North. Yes- you guessed I said up North which signifies Im more down South. But not as South as my dear Nel. Im Norfolk- so sandwiched inbetween lol!

Hoping you get a comfortable night.

We have broadcast your post so you should be getting replies pretty quick.

Big hug

mads

[Mexicanrose]

Mexicanrose said: Mads...you mentioned Nefidipine....Actually, Nefidipine & Amlodipine have very much the same ingredients...they are BOTH calcium channel blockers. I'm told Amlodipine can cause burning...I've read many discussion topics on this. Also, the side effects of Amlodipine & Nefidipine are about the same.

mads said:

Hey there Fatty Jr,

Sorry its taken us couple days to connect ;)

Couple questions - you react to temperature - namely heat?. Are you in same pain without the flares i see in your photos?

This came on after surgery? Did it come on quickly?

So, this is not the first time we have heard of an injury or surgery leading to EM. Aside familial genetic ,EM may manifest randomly for unknown reasons (sporadically) or the condition may occur secondary to various underlying disorders, particularly myeloproliferative disorders, neuropathies, or certain autoimmune and connective tissue diseases. Evidence also suggests that erythromelalgia may also occur as an adverse effect secondary to certain drugs (e.g., bromocriptine, nifedipine, nicardipine) and specific antibiotics.

Abnormalities in the normal narrowing (vasoconstriction) and widening (vasodilation) of the diameter (caliber) of certain blood vessels can lead to abnormalities in blood flow to the extremities.I agree that it would make sense to assume some damage may have caused this. Must say, however, that rather infrequent that EM develops following an injury or surgical procedure(although as I say i know several people who have). Im so sorry if thats the case- thats really horrible luck.

Probably asking silly questions but could it be that you have a secondary EM to another underlying disorder or that this is medication induced? Do you have peripheral neuropathy? EM does rather mimic other illnesses such as Complex Regional Pain Syndrome/RSD. Differential diagnoses is a massive problem. How are you being diagnosed with EM? Is it based on asking you questions (symptoms/what triggers flares), clinical presentation and small fibre neuropathy tests?

A hypothesis of why some of us develop primary sporadic is stress. Im convinced that stress triggers some yet to be discovered gene variant in sporadic EM'ers and that this messes up our voltage-gated sodium channels- akin to familial genetic( ie: gain-of-function Na(v)1.7 mutations) . If you have primary sporadic EM (ie: EM that just started without any clear cause) with acute onset (ie quick and bad) you might find that sodium channel blockers like lidocaine gel compounds or patches really help.Quite a few sufferers find that they do.

You mention being on co codamol for pain ,which probably isnt really helping you much. Many neuropathic pain sufferers (EM, chronic regional pain/regional complex pain) take firstline treatments such as gabapentin(an anti epileptic drug licensed for use in chronic pain) and amytriptiline ( antidepressant that assists with pain/sleep). It is the norm that EM'ers are dismissed as most Dr's have never heard of the syndrome, let alone recognise or know how to try to help us better manage symptoms. It would be wise to ask to be referred to pain management. As Nel suggested print off some of the research and articles from the site. Go under toolbox (tab) and information new members to find.

Im going to look through my library for you to see what i have on this topic. Ill get back to you with some stuff- Ok :-)

We had some recent posts on this topic. Here are links:

http://forum.livingwitherythromelalgia.org/forum/topics/shoulder-frac...

http://forum.livingwitherythromelalgia.org/forum/topics/healing-rates...

http://forum.livingwitherythromelalgia.org/forum/topics/potential-com...

BTW: Did you want us to check our Dr database for UK. I think I remember we do have an EM aware Dr recommended by members for up North. Yes- you guessed I said up North which signifies Im more down South. But not as South as my dear Nel. Im Norfolk- so sandwiched inbetween lol!

Hoping you get a comfortable night.

We have broadcast your post so you should be getting replies pretty quick.

Big hug

mads

[fattyJr]

Thanks for the replys yet again.

To answer your questions, these " flares " only starting happening following my Accident. It's kinda hard to say what can cause the flares. Sometimes it's due to physically using my hands, but i have also had them when I have done very little.

I know when the flares are going to happen as i get telltale markers. I get some tingling to start with and then it progresses to burning hot temps, red hands and pain. It's as if someone opened a tap and dumped hot blood into your system, but only my hands. Like i said before, the pain i get is like my hand is being squashed. Sometime is comes on slowly over 10-15 mins or it can happen in 2-3 mins

Put it like this. My dad's side of the family have always had good circulation. It can be cold outside and if our hands got wet, you could see the steam coming off them. Since my accident, circulation is still good but my hands don't like the cold. They are not cold, but it's like they are oversensitive. My dad has commented when I have a flare that my hands feel hot to him and his hands are warm to start with.

I haven't been diagnosed yet, but I am gathering information to show my doctor so i can get the ball rolling. I agree that most doctors just dismiss problems (either through choice or ignorance) and want to dope you up with pain medication. I try to take just enough pain meds knock the edge off my pain.

[Brian]

From what you describe, It sounds like you might have "secondary" Erythromelalgia. Meaning it was caused by nerve damage. The most important thing is to get yourself out of pain. Find a doctor who is familiar with E.M. Eat the best diet you can so the nerve tissue will have the best chance of healing. Nerve tissue takes the longest of any tissue to heal after being damaged. Rest is also important, You won't be able to get restful sleep if you are in pain. The human body has amazing healing powers as long as the conditions are right. I hope this will help you.I agree with what Mads has written. My E.M. came after 3 foot surgeries. Hot weather makes the symptoms worse. My ears,hands, and feet turn the most red. The ankles even swelled after an intense flair-up. I also had trouble finding a doctor who knew what E.M. was. That was back in 1997, before the internet.

[Mexicanrose]

Brian...I think it a real shame that in this day & age of modern medicine, there aren't many doctors who are familiar

with EM. Yes, it's rare, but so are other forms of disease. Hopefully, more & & more doctors will learn about this, or at least be able to diagnose much better.

Cheers!!!
Brian said:

From what you describe, It sounds like you might have "secondary" Erythromelalgia. Meaning it was caused by nerve damage. The most important thing is to get yourself out of pain. Find a doctor who is familiar with E.M. Eat the best diet you can so the nerve tissue will have the best chance of healing. Nerve tissue takes the longest of any tissue to heal after being damaged. Rest is also important, You won't be able to get restful sleep if you are in pain. The human body has amazing healing powers as long as the conditions are right. I hope this will help you.I agree with what Mads has written. My E.M. came after 3 foot surgeries. Hot weather makes the symptoms worse. My ears,hands, and feet turn the most red. The ankles even swelled after an intense flair-up. I also had trouble finding a doctor who knew what E.M. was. That was back in 1997, before the internet.

[Mexicanrose]

You mentioned you were on 3 bp meds. What are they?????? One of them could be contributing to your problem!!!

[mads]

Hey, Brian and Mexicanrose- thanks for such great contributions.

Fatty Jr- are you taking BP medications?

Pain is symmetrical? Both hands right? You react to heat, fatigue , stress, exertion ?

Just thinking about CRPS and RSD which can be very similar.

God bless

[Brian]

Thanks Max , Stress, Heat, and exertion seem to be the main cause of an EM flair-up. I've been dealing with the EM since 1995. I had to stop practicing Dentistry in 1997 because the pain was so overwhelming along with the lack of sleep. EM is so rare and misunderstood. My own brother and sister think it's " all in my head". So I can certainly relate to those who are having trouble getting their doctors to understand what they are going through.

mads said:

Hey, Brian and Mexicanrose- thanks for such great contributions.

Fatty Jr- are you taking BP medications?

Pain is symmetrical? Both hands right? You react to heat, fatigue , stress, exertion ?

Just thinking about CRPS and RSD which can be very similar.

God bless

[mads]

Bless you. Know the' all in my head' feeling. Alina and I were discussing how EM'ers often considered 'mentally ill' because of our anxiety, frustration and sometimes hysteria. All this because EM is so misunderstood . I could see the flares, feel the flares but you actually start to question your sanity in those early days. Thats why this community is so important. Imperative we raise awareness, educate and offer support.

I actually have a great article somewhere called hot feet , hot brain . ill find and upload.

PS: Nice to see you Brian. Big hug :-)

[Alina_D]

I’m so sorry. I can see the pain. this is exactly what mine look like when I flare. My blood vessels pop out and there is usually a pronounced line as I see in your photo that starts around the knuckles and up through the fingers. I still get red at times all over my hands or feet but most often it is just like your picture.

fattyJr said:

I know about the thanksgiving holiday, I have friends and family out in florida and alabama.

I got a mild flare today and hopefully got a pic. Let me see if i can post it up.

Don't know if it's very clear. when i do have a flare, the area above the index, middle and fore finger seems to swell and the blood vessels become very pronounces

[Alina_D]

hello again FattyJr. One thing I notice in yyour pictures here is an all too common site in mine… your computer. I have found the warmth from the lap top is a big trigger for me. It doesn’t seem like much and most people wouldn’t notice any temperature change but with EM it doesn’t take much. Maybe try keeping a fan on your hands while on the computer. This might help some. I hope so.


fattyJr said:

Spoke too soon. as if on a timer Both hand have decided to play up. I am going to have to buy a digital camera so i can take better pics
but here’s what i got now

Right hand. Not sure if you can see the blood vessel hear index finger really pronounced.

Left hand (this one had most of surgery) same again very pronounced blood vessels.