Over the last few months my symptoms have worsened, I am now finding the cold weather really hard to cope with, lots and lots of pain, icy numbness and or tingling. This then turns into a full on EM flare as soon as I go into the warm with swelling, redness and worst of all the burning.
I have noticed that the colour has gone from underneath some of my nails (hands and feet) and they're now a pale white instead of the usual pink colour they were previously. I was wondering if anybody else has noticed this too. I am waiting for another appointment at the hospital but thought I'd ask the people who know best, which is you lot..!!
I am finding it really hard to stop the icy tingling/burning without causing a flare at the minute too.
My feet get icy cold too - it is indeed very difficult to try to keep them at a moderate temperature so they're not freezing or flaring. As for the nailbed color, Mine look extremely pale to me when I'm having a flare-up, but I think it may just be that they look that way next to my bright red toes. My nails have become very flaky and have clearly visible ridges in them (going widthwise across the nails).
Do you have white areas especially at the base of your fingernails? That's a common feature of Raynaud's, according to my dad (a doctor), they're known as "half moons" after their shape on the fingernail-bed. I think it's caused by the poor bloodflow we have, coupled with pressure of the nail itself.
People with EM and/or Raynaud's can also be at higher risk of losing a nail (finger or toe) either from disease processes or from trauma (eg a blow to the nail or catching the nail and pulling it). I think that's again due to our bloodflow problems. My dad told me to try and keep the nails short, to reduce the risk of problems. If people need to see a podiatrist/chiropodist, ask to be treated in a similar way to a diabetic, in order to get the care your feet need. Hope that helps (even if you are now wincing and holding your hands under your arms)!
LibbyK, I'd suggest showing your nails to your doctor, in case you have a fungal infection or something causing the flakiness. You may also have Raynaud's disease in your feet, it's possible to have both. I'd suggest asking in the forum if someone knows of a specialist who can treat your EM near where you live.
It's great to have such a knowledgable friend on here, thank your dad too.
I do have half moon shaped white marks on the base of the fingers and toes that are affected by the colour loss but also have white areas on other parts of the nails too. I am trying to get a photo to show you but not sure if the quality wil be good enough to show the colour loss properly. All my nails seem very pale compared to how they used to be but they also have bits that are paler. My hands were hot when this was taken wbut they do go whiter when cold. This picture doesn't seem to show up all the patches on all fingers but if you look at the index finger this is just an indication,
Do you have white areas especially at the base of your fingernails? That's a common feature of Raynaud's, according to my dad (a doctor), they're known as "half moons" after their shape on the fingernail-bed. I think it's caused by the poor bloodflow we have, coupled with pressure of the nail itself.
People with EM and/or Raynaud's can also be at higher risk of losing a nail (finger or toe) either from disease processes or from trauma (eg a blow to the nail or catching the nail and pulling it). I think that's again due to our bloodflow problems. My dad told me to try and keep the nails short, to reduce the risk of problems. If people need to see a podiatrist/chiropodist, ask to be treated in a similar way to a diabetic, in order to get the care your feet need. Hope that helps (even if you are now wincing and holding your hands under your arms)!
I've been to a podiatrist and he said I definitely don't have any kind of fungus. He suggested it was Raynaud's but he'd never heard of EM (like all the other doctors I've been to around here). He also said that Raynaud's can cause ridges across the nails. My fingers do not have flare-ups as of yet, but the nail bed color looks like that of the photo above, even down to the extra paleness in the index finger nail.
starsmurf said:
LibbyK, I'd suggest showing your nails to your doctor, in case you have a fungal infection or something causing the flakiness. You may also have Raynaud's disease in your feet, it's possible to have both. I'd suggest asking in the forum if someone knows of a specialist who can treat your EM near where you live.
I had a first appointment at the pain management clinic today and FINALLY somebody will increase my gabapentin, can go up to 3600mg daily if needed and have put in place other medication just incase I don't get relief from this. He didn't however say anything about my fingers (just said we don't actually diagnose here just do treatment plans) He did however say that it doesn't matter if it's my EM or Raynauds causing the pain he would deal with it in exactly the same way.
He also wants to try and find an EM specialist in the uk to send me to but this could mean travelling right across the country for appointments.
starsmurf said:
Yes, that's exactly what I have. It seems to be part of the Raynaud's.
Laura, I can wholeheartedly recommend Prof Jill Belch at Ninewells Hospital in Dundee. There is a medical physics department which will be able to do any scans needed to diagnose, if they have any doubts about the cause of your pain. If you can't see Jill, there is also Dr John Dick in the same department who treats a lot of EM patients.
Jill has been my specialist since she diagnosed and treated my EM at the age of eight. I think an example of her dedication was in June, she stayed late to help me have a laser doppler test to see if a particular drug would help. To save me waiting for a porter, she took me up and down from the ward herself, gave me my injections and was there until ten-thirty pm, when I suspect all the other consultants had gone home, never mind a world-expert professor of medicine!
If you do need to come up to Dundee, I'm only 25 miles away and can offer a sofa-bed for a few nights in a nice cool flat, no carpets and a fan available.
Wow, what a very generous offer... Thanks, that means alot to me. The Dr I saw today is going to look into it for me but if I don't hear anything then I will do some research and send him the details of specialists that he can refer me to, and your doctor sounds like she goes above the norm :) Do you have many EM patients around your area then or are lots of them from all over the country.? I was told there is only 5/6 in Norfolk where I'm from..!! The pain I used to experience has changed somewhat over the last few months to include when I get cold too, thats the only thing thats not certain, is this part of it EM or something else... There is no doubt about the EM diagnosis I had years ago tho..!
