Newbie on the block

Welcome New Member Introductions
1

Hi all.

Firstly thanks for the warm welcome. It was great to come across this site.

A little about me... I'm a 36yr old male, from Melbourne, Australia. Wonderful wife, 4 amazing kids (one who arrived Oct 1).

I self diagnosed myself a short time ago. Help with this diagnosis was based on the info from this site.

I was given the official word today. Funny how it still rocks your world when you pretty much already know yourself... but when it comes from a medical professional, that confirmation... it's just that little bit different.

A quick view of my story thus far...

I was diagnosed by a dermatologist, who I discovered had seen cases previously via her experience in the UK.

Prior to this I have had a series of symptoms that took me through a large series of tests, everything from the usual full bloods, MRI and/or CTs of brain, spine, abdomen, pancreas, liver, gallbladder through to ANA (lupus), nerve conduction study, ultrasounds, visual evoked potentials and even HLAB27 (Ankylosing Spondylitis check). All passed/negative.

The only thing that was not normal was my B6 level. Range 3-27, mine was 50. Too many supplements laced with pyridoxine.

Palmar erythema (or equivalent) set in June this year and has stayed since.

Then the feet started to flare up in June/July. Shooting pains then in hands and feet, with constant feet flares. Skin on the feet and hands have dried up terribly. I can see what seems to be like pitting in the skin.

The Rheumatologist's view was 'it looks like Small Fibre Neuropathy'. As many of you probably have experienced, when you have an early consult in a pair of Birkenstocks (or equivalents) there is a good chance it might not show the flares that you're used to. Capsaicin cream was prescribed of which I didn't take. I conveyed that "you are giving me a cream with side effects of burning, for burning. Sorry I don't get it."

Back then to the GP and convincing him for a referral with a neurologist because that the nerve conduction study that I passed, was for large fibres and not small fibres...

Off to the neurologist consult...prior to my appointment the neurologist must have seen me run back to the car to get my referral. He said based on "the way you can run down that driveway and a clean MRI there is no way you have MS"

However after some physical checks, he said I have "symptoms but not the signs". He doubted even Small Fibre Neuropathy and I was sent on my way.

This eventually lead me to the dermatologist and someone who knew what it was.

My biggest fear at this time is the chance for it to move towards myeloproliferative disorders. At this time its very uncomfortable... but the chances to move to PV or thrombocytosis scares the absolute lights out of me to be honest.

My dermatologist prescribed me with Gabapentin and to use a heel balm for the feet.

I'm tentative about taking this at the moment... I have never been one to take things unless I believe I really understand the pro's/con's.

So I assume I have a similar set of newbie questions if people don't mind... such as:

How do people deal with this? How old and how long have they had it?

Is Magnesium or other vitamins helping anybody? Is what my dermatologist prescribed working for others?

What are seen as all the secondary causes?

If people have a myeloproliferative disorder, what timeframe (from initial symptoms) was it diagnosed? How often are people having bloods checked?

Thanks in advance to anyone who posts!

Craig

2

hi craig.Welcome to the site from a fellow 'newbie' Lorraine from northern Ireland here. struck by your post as my history bearing some similarities to yours. I developed joint pains closely followed by flares of palmar and foot redness/ pain/swelling about 18months ago. I have , like everyone, been through all the battery of blood tests/ x-rays etc until I basically diagnosed myself. (cant understand how this condition is understood so little when so many seem to suffer from it!!) I am currently finding some relief with lyrica twice daily ,tramadol when things are bad. also taking magnesium supplement. have just been started on adepine so will post any improvement/ deterioration. So far bloods not showing anything to indicate any myeloproliferative disorder but what I have read would indicate that could still happen. I am of no use to you information-wise but for once I can at least be relieved I live somewhere cold- we had a good summer here this year and the heat played merry hell with me (flares were almost constant.). Australia's heat must be a nightmare at times best of luck. keep posting

3

Hi Lorraine

Thanks for the post. Yes its just starting to heat up here now after the long winter. Flares in the last week have stepped up.

You said you had joint pains, etc - I assume you haven't been bitten by a tick or have been tested for Lyme Disease? Over here in Australia, there is no knowledge of Lyme whatsoever. To have confirmed results you need to send your bloods to Germany or to the US. The lab in Sydney only does some limited testing and there is no real Lyme doctors available.

Our family spends quite a bit of time in Northern Germany and I was bitten by a few ticks, so I had to have that ruled out.

I agree its amazing how long it takes to come to a diagnosis! I see the GP as a critical piece to the story. I know I am probably being over critical, but to me they are the front line and make the call if you go proceed further (to a specialist, via their referral). I think a lot of GPs now tend to use the large anxiety 'card' for a lot of these things, prescribe some pills and out you go. I found that quite difficult to accept because I'm a very cause/effect kind of person.

My palmar erythema is on 24x7 - had it since about June and it was the first thing that really registered with me. I saw that as the first sign of something was up - the shooting pain and the burning then came in the hands and feet. Definitely think stress and/or anxiety currently play a role in the magnitude for me but my debate with a GP was that this was an aggregator and not the root cause.

It would be great to hear whats working for you and whats not. If I get any breakthroughs I'll make sure they are posted.

I saw the Rheumatologist today. I thought I had almost every single blood test done but having some more, some are repeats. I talked to him about medication and he has suggested trying Cymbalta as a doc already had prescribed it (as per GPs above) for me and what he would have prescribed would have come from the same drug class at this stage.

My dermatologist prescribed Gabapentin and the Rheumatologist saw that more of a 2nd line, rather than a first. Have to agree at the stage.

How do you think the Magnesium is going for you? I have some Magnesium Citrate on its way.

I've been reading a lot on this site:

http://www.medicationsense.com/erythromelalgia.html

I also have read about aspiring working for some people, especially with those with or potential myeloproliferative disorders?

When discussing aspirin with the Rhuematologist, he said enteric coated or not, it removes mucosal lining of the stomach and thus that's why he's not really a fan for longer use. I've had stomach issues previously so for me - beyond a small test period, it's probably a no go.

Best of luck to you too Lorraine.

4

Hi Craig - I'm also new here. I live out in the mountains of west central New Mexico. I responded just now to your reply on Gossie's discussion on cold as well as heat problems. I won't repeat that.

I don't actually know, but I thought (for all that's worth!) that myeloprolific disorders were a suspected cause, not result, of erythromelalgia. Now you have me wondering. The articles I've read (particularly by the guys I mentioned in my above response to your input on cold), on EM seem to focus on either, or, or both of the effects of Vasodilation/arterio-shunting and/or micro-fiber nerve problems (like post-ganglionic message relays?). Messed up nervous system messages could cause abnormal vasomuscular relaxing? Shunts off of capillaries could occur due to same? And hypercool tissue might finally get a message across to hyperconstrict in response? (Sorry for kind of combining and making up words here.) A potential vicious cycle? I sure don't know, but my mind won't stop trying to make sense of every possibility.

You're sure right about the jolt of getting a diagnosis, even though you long knew the truth on your own! I have to work to not get into a box of "EM is who I am".

Take Care, and also to you, Lorraine.

5

hi there craig, i have been suffering from "burning feet syndrome" for more than 10yr now and have only had it diagnosed last year. my gp has put me on lyrica twice a day. i went to see a prof at st james hospital and he has told me there is an operation now. apparently they deflate the lungs and zap the nerves behind the lungs in a certain area. i was told to go and think about it because like all ops they carry risks... im still thinking!!! but lyrica has given me some relief. all the best. isabell

6

I am also a newbie - diagnosed on April fool's day by a neurologist who has seen EM before. I had been to 3 doctors before him. At the dermatologist office, I begged for amitriptyline just so I could get some sleep. She wasn't sure it was EM but didn't rule it out either. She sent me to the neurologist b/c he was known to treat EM.

So far amitriptyline has curtailed my foot flares enough so I can sleep. It is an old drug and well known to MD's. I'm trying to NOT take stronger meds - lyrica or gabapentin - until I have to. I still get burning but it is isolated to one spot one my right foot. I quit drinking alcohol and avoid acidic foods as much as possible as these are triggers for me.

I hope this helps.

Kim from Indiana

7

Hi Ocker, I am pretty new too. In early May I had red burning patches on the inside of my left hand. But before I could get to my doctor they stopped hurting and the redness receded within 3 days. I forgot all about it until a month later a little bit of pain and burning and more redness returned. It was also on my right hand but totally without pain. My GP sent my to a dermatologist and before I saw her I had found EM on the Internet. The dermatologist just confirmed it - without any tests. Since then my feet are flaring, my chest, my throat, my face, may eyes and I believe my sometimes itching scalp is also EM related. In addition I have nightly *Heatwaves*. My whole body feels as if hot lava has been poured inside of me or as if I am wrapped in a heating pad. It doesn't hurt, it's just very uncomfortable. My skin has also become very sensitive to touch - paper, plastic, cardboard, towels, clothing - everything feels scratchy. In my opinion all of that is EM related and that's why I am now convinced that it already started a year ago and not just in early May of this year. Because that is when the feeling of too much heat inside my body and itching feet in the evening started.
What causes EM? Nobody seems to know. I think doctors are just talking about underlying causes because they are clueless and hope to find something else that they have a chance of curing and they hope that EM disappears at the same time and they can claim they successfully helped you get rid of EM. What I would like to know is what is going on in my body. So far I have only heard that Dr. Cohen had an explanation and if he is right then we still don't know the cause of it. Nowhere do I read anything about it , not even from the *The Erythromelalgia Association*.

I am not taking any meds - too afraid of the side effects and too concerned that they will not help any more once the body gets used to them. I use a fan to help cool, I have bought cooling pads for my bed and couch, cooling gel pads. Using cold water and ice is dangerous. I keep lotions in the fridge to use on my hands and sometimes on my feet.

Since last week something strange happened - a diet pill that causes serotonin to increase seems to reduce my flares.

Read what Dr. Cohen has to say, I find it quite helpful and interesting.

Good luck to you

Domina

8

Hi Craig. My name is Alina. I am 41(barely! Only by a week!) I have had EM for 3 years but I’ve only been diagnosed for about a year. So far I haven’t found a medication that has helped. I have tried gabapenton and lyrica. I know some people have had some benefits from those. It’s a strange thing what helps someone might not help someone else. It seems to be a series of trial and error. I know that sounds terrible when it comes to taking medication but for some the pain just becomes too much and trying some medication just has to be done. It’s smart you are doing your research first and not just taking anything they throw at you. Right now I only get relief by keeping cool. I have to avoid exercise and places warmer than high 60s. I tried the elimination diet through my doctors for 3 months to see if any certain foods make it worse. All I got from that is wine is no longer an option but that was pretty much a given with it being a vasodilator. I Was recently diagnosed with a connective tissue disorder but the doctors can’t say that is what caused my EM. They did start within months of each other so I’m not sold I that idea. I’ve found something called chilli pads on the internet and they help immensely but you have to wrap them snugly on the burning area so you can’t walk around with them on your feet but if you are burning that bad you probably will be resting anyway. Please let us know if you figure anything out that seems to work for you. Take care
Alina

9

I can’t believe that your neuro ruled out ms just because you can run to your car. I was diagnosed with MS 3 weeks ago but the neuro said that I had probably had it for the last 6 years when they ruled it out because of a clear MRI. Over this time I have been a runner (up until couple yrs ago)& keen cyclist. It’s only the last 5 months where I’ve not been able to exercise at all… Keep pushing if you are not totally happy with diagnosis. I do have EM but all the other symptoms were not EM related although that’s what drs (who knew nothing about EM) put them down to. Good luck