Erythromelalgia

[reo747]

Hi guys well it looks like I haven’t got Lupus or autoimmune disease however I’ve been ill. I got a bacterial infection and was given very strong antibiotics to make me better however it caused a serious issue with my liver.

Over the years my hands and feet have always been freezing cold. Occasionally when I got hot they swelled up a bit and went red and a wee bit sore but nothing I couldn’t handle. I didn’t even think about it.

Anyway since my illness they are swollen constantly. Painful and red. My nerves seem to be affected too I’m a complete mess. I’ve been in hospital last two days. My heart rates normally 65 it’s more like 100. They hadn’t heard of Erythromelalgia I showed them a website and they agreed it looked like it.

I’m devastated I am cabin crew I think my life is going to end I need some reassurance. My neck face ears and hands are all being affected. It seems quite severe I’m having difficulty walking. Help me please.

[Spanielmadlady]

Ok reo take a deep breath and let it out slowly.chronic illness doesnt mean the end of everything...it just means it's time compromise, adapt and do things differently.once you get your head around things and you get the medical help your condition needs you will find your coping strategies and boundaries.my advice to you is take all help offered, dont stress over things you cant change, work with your illness rather then fight it,educate yourself and be kind to yourself.we all feel abit panic stricken when we get a new diagnosis but once everything settles you will be able to take it all in your stride.im relieved it's not lupus. Big hug stay strong x

[honeybug]

Hi reo747 🌿🌸🦋

I’m sooo sorry to hear you’ve been diagnosed with Erythromelalgia.

Let me introduce myself first.

I’m Honeybug/EvaJo/EJ. I’m in the USA. I’m 69 and have the rarest form of Erythromelalgia.

Mine is inherited which means I’ve had it all my life.

I wasn’t diagnosed until 2014- which means it took me 64 years to get that diagnosis and countless doctors labeled me crazy liar attention seeking or dismissed me altogether.

I finally got medicine that works to help me.

I’ve been through everything you’ve described (and for me) it progressed to the point of affecting my breathing and my nervous system.

My IEM was confirmed by double DNA testing and conferencing other specialists in the field.

I’m one of only 3 in the world confirmed to have the rarest form of this disease. It is also effected by the sodium/salt that is in everything swallowed or absorbed in the skin.

I currently take Paxil 20mg once daily and Gabapentin 2400 mg /1200mg twice daily.

Medications have multiple uses these days. Example: viagra was originally a heart pill until the side effect was discovered to aid in erectile dysfunction - which led the manufacturers to market it instead for ED purposes.

With my IEM the worst for me is the impaired lung function, intolerance to heat, and the billions of red hot needles skewers and pokers sensations that stab my head all over. When this happens I pray for death it’s soooo incredibly agonizing.

If you’ve not had these symptoms since birth then you don’t have my form. In that you are abundantly blessed.

There is a website for our condition found in NORD.

Things that will effect our condition are:

Weather especially humidity/rain mist fog snow and the like.

Also illnesses stressors.

The Erythromelalgia Association is an organization developed by people afflicted by our conditions and when you join their organization they will send you publications that are so helpful as well as supportive to members.

Their newsletter is produced by affected members that features articles about experiences of people worldwide their personal stories. Also it allows us to see that they have careers families and active lives despite this affliction.

It gives us HOPE.

I would love to stay connected so we can help each other through our journeys with this affliction.

I hope this reply has been helpful and also given you hope.

Every afflicted person with whatever they have needs support and hope. It also helps to have a friend who understands about the affliction as well.

Take care. Be safe from the Covid virus.

Abundant blessings my friend.

EvaJo/EJ 🤗💖😘🙏🌿🌸🦋🤣

[CecilyParsley]

Bless you. You are obviously acutely unwell and that is never a good time to contemplate making life changing decisions. Take the time to rest and heal. Once you are starting to feel better you will be far more able to make decisions about your future. It may mean that you do a reduced workload until you understand your condition and limitations. I do understand totally how bleak everything feels when you are so ill. I wish you better health and lots of tlc and send big Cwtches for a better tomorrow xx

[reo747]

Thank you so much for your reply. I remember my mum always having hot hands and having to have her feet outside the bed clothes so it’s possible it is hereditary. This has come on very suddenly though I just hope it improves. It would be nice to keep in touch. Rod. X

[Hidden]

Oh dear I’m so sorry for you. I have EM secondary to connective tissue diseases, Scleroderma, Sjögren’s and others. Also Raynaud’s and small fibre neuropathy. I don’t think it’s as bad as EJ’s. But the Pain of the neuropathy has had me bawling in hospital following major surgery for something entirely unrelated.

Personally I wouldn’t exclude an autoimmune cause from all that you explain. If it’s not primary ie genetic then it stands to reason that they just haven’t found the cause yet. But there will be one.

And if you can find the cause then you might also find a treatment that works for you. You may not have to quit your job.

For instance some find infusions of Lidocaine really help. Others get IViG. And some, like me, get a lot of relief from Iloprost infusions. So please don’t despair but try to get good photos to show to a rheumatologist, Dermatologist is neurologist.

Mine affects my feet, hands, face and neck and luckily tends to flare in my face when I’m in hospital under fluorescent lighting and when stressed or hot. It makes me sweat profusely in face and causes blistering with burning pain on my fingers. This means it’s been seen first hand in my face by a consultant dermatologist and my rheumatologist - both of whom diagnosed me with EM.

Remember it’s very hard to exclude rheumatic autoimmune diseases and this can’t be done by blood work alone. Some have normal blood but still have RA, Sjögren’s or even Lupus of Scleroderma.

Best of luck getting it formally diagnosed and hopefully managed to the extent you can keep your job.

[bookish]

Hi, like some other commenters, I wouldn't rule out it being autoimmune either. Erythromelalgia can be strongly connected to Small Fibre Neuropathy. When you feel up to it, please search for Dr Anne Louise Oaklander (Oaklander, YouTube) and watch Small Fibers, Big Pain (Radcliffe). Take it gently and look after yourself. There are always things that can help us improve. Best wishes

[Goldyukr]

I’m so sad to hear that you are this miserable. Sometimes it can be so hard to see past the current pain. Please don’t give up. It may be that your virus is affecting this temporarily. That happens with me. Also, are they giving you any types of medications? I was on amlodipine for a while and the flaring was terrible. Come to find out, it aggravates erythromelalgia. So research any meds you are on to make sure it’s not affecting it as well. Please know that you are not alone.