During a recent visit to my rhumatologist for my back, I thought I would see what he thought of my feet since they were flared up quite badly. Wich we all know can be the key to diagnosis. He instantly said ooooo erythromelalgia. I was so excited to have any doctor recognize it. But he also said he would rather leave it to my dermatologist to diagnose. I got my hopes up that if he recognized it for what I’m positive it is, then surely my dermatologist would too. No such luck. My dermatologist thinks it’s chilblains because of the time of year it is now. He completely disregarded the fact that this is the first time I’ve ever presented with a flare at this time of year and the fact that other than gabapentin, cooling my feet is the only thing that actually helps. I tried to explain to him that this flare up was so much easier to manage because I had more control over my body temperature. I want going from one extreem to the other by having the roasting heat of summer/ice packs on feet. I can keep it cool in my house, wear a sweater to keep my body warm but shorts and bare feet so the warmth doesn’t radiate down to my feet. And when the burning still carries on I can stand out on the cold cement for a few minutes. All these things are much harder to do in summer. So frustrated that the whole picture is being discounted by him just because of the time of year. Last summer he thought it was polymorphic light eruption. (Sun sensitivity) now he wants my gp to take me off propranolol that I take to prevent extreem cluster migraines because I just started this med in Sept and he thinks it could be causing this. Thankfully my gp doesn’t buy it because he knows this started years before I started taking it. And he’s hoping that it might help control flares. I will be seeing the dermatologist again in a few weeks to go over the slurry of blood tests he did. I’m really hoping he exhausts the other possibilities sooner rather than later so we can just get on with things and maybe find other treatment options. Who knows, maybe something might work for me
Sorry you're still no further forward, Natalia. Any chance that your rheumatologist would write to your dermatologist recording his thoughts and observations?
That’s what I’m thinking I may have to do. I have gone over it a bit with my gp and while he wants to be supportive of me, he’s so completely lost with all this that he’s really just hoping someone else sorts it out. I don’t see the rhumatologist for another 4mths so I’ll see what happens with the other docs in the meantime. I just can’t help but feel a little angry thinking that on top of what’s happening to me, I’m being shuffled back and forth to sooth someone’s ego.
I sympathise with you Natalie, as the same has happened to me shifted from one specialist to another and not getting anywhere really. Not knowing the cause of my EM makes matters worse as it can be various things. My rheumatologist hadn't the slightest clue what EM is.
Natalia, it seems that many doctors simply don't recognize erythromylalgia as a real symptom of disease.. Autoimmune diseases are not on the radar for most, unless you are in an area where they are working toward solving these issues. Still, most treatments are the result of trial and error.. I speak from experience, of course!
What works most of the time for me is:
1. Stay off my feet as much as possible
2. Wear shoes that I can slip off easily when my feet get hot
3. Sandals all year and occasionally thin socks on cold days when I have to go somewhere
4 Keep my feet raised when I'm sitting
5. Eat nothing with sugar or fructose in it
6. Distract my mind with hobbies..mine are Solitaire, NetFlix, Reading, Ebay for buying and selling dolls, etc.., quilting small doll quilts by machine, and miniature anything for my dollhouse.. I stay really busy double tasking most of the time..
7. Short walks around our driveway.. 10 laps is equal to 1 mile.. rarely do I get in 10 laps at once tho.. and have to get off my feet ASAP afterwards
8.. Most importantly, my husband does most of our grocery shopping, etc. I can do it once in a while, but suffer the consequences, too.. He is very understanding and supportive of my frailties, so he tries to keep me from being stressed over anything..
Note: Life is full of stress, especially as we get older.. Presently, my 50 year old son is suffering from Diabetes and Parkinson's.. My 24 year old granddaughter lives with him and takes care of him.. He is mostly bedfast, only getting out of bed for dialysis 3xweek.. We are all carrying a heavy load nowdays.. My 74 year old husband is beginning to lose the words that he wants to use.. We have all relied on him for so much over the years and are frightened at him being unable to keep us all sorted out.. I don't sleep well and wake up every morning worrying.. even with antidepressant meds...
My support system is falling apart gradually... and it scares the heck out of me..
I hope you can get a doctor who will understand something about your health and be willing to provide you with the hope for tomorrow.. My doctor is an osteopath, and a very good one.. Youngish, and willing to explore and learn more about some of the diseases that are only now coming to our attention.. but believe me, it has taken me years to find him..
Hotfooted
Hey Natalia,
This sounds extremely frustrating! I can't even imagine. I was recently diagnosed, and luckily (i guess you can say luckily) both my Rheumatologist and Dermatologist concurred with my diagnoses of EM.
I would continue to encourage you to advocate for yourself. Another forum buddy on this site said, "its okay to throw a tantrum every now and then" and you definitely have my permission. It's often times easier to advocate for others rather than ourselves. I know it can be hard and this sounds sooooo frustrating and unfair.
Continue to seek other doctors, get second opinions, and ask for explanations. You deserve to have an explanation so that you can start different types of treatments.
I recently bought a pair of cooling socks from Amazon. They just got delivered today. I will try them out and if they are helpful, I'll send you a link. This might temporarily help with some of the pain you are experiencing. Any temperature above 72 seems to aggravate my feet, so I try to control my environment with A/C or a fan at all times.
You will be in my thoughts and prayers.
I would be interested in those cooling socks. One of my doctors said it couldn’t be EM as I don’t have flares now it’s 24/7. It started as flares but has gone worse over the years. Now I sit with my feet on ice packs wrapped in a towel all day but I can’t do that at night. My EM seems to be secondary to poor circulation. I have loads of ulcers on my feet and legs. The docs are thinking of amputation in a way at least I would be rid of this horrible thing.
Sheltielife,
I will provide you updates after I give those socks a try. They have pockets for the top, bottom, and heel of your feet to insert cold gel packs.
Doctors have so little knowledge about EM that it is really difficult to get any answers or relief. Your pain sounds unbearable, but at the same time you take one day at a time and look for new options, treatments, and possibly surgeries. I admire your strength and optimism. I don't know if it is comforting to hear, but stories like yours really bring me hope and internal strength to battle my pain (which sounds much less severe than what you are experiencing). Thank you for sharing it with me and so many others.
You are also in my thoughts and prayers, and I promise to give you feedback on those socks.
sheltielife said:
I would be interested in those cooling socks. One of my doctors said it couldn't be EM as I don't have flares now it's 24/7. It started as flares but has gone worse over the years. Now I sit with my feet on ice packs wrapped in a towel all day but I can't do that at night. My EM seems to be secondary to poor circulation. I have loads of ulcers on my feet and legs. The docs are thinking of amputation in a way at least I would be rid of this horrible thing.
Thanks Little K. Believe me there are times when I give up hope then something happens to give me some back! We have to keep fighting and hope that more doctors get to know about EM.
We can relate to many of the stories stated above.
Obviously each doctor has their own specialty and bias. And each one will have a different approach toward trying something new or being conservative. With EM it's really tough for them as an example there are 100 types of neuropathy and if one has a rare combination of nerve issues causing the EM it could be easily unknown and unique to the individual. And difficult to treat. I ran into two people in the course of one day who have burning toes or burning foot syndrome like symptoms. Pain flares in their feet or toes. One had it from a pinched nerve as far as their doctor could tell them. They have burning toes. We talked a while about her condition and I shared my mom's story with her. I said it sound's like the pinched nerve is giving a Tasal Tunnel syndrome like effect on your toes. Causing burning.
The other had cold feet and numb feet with alternate flares, from classic neuropathy. She also had many other health issues as well. But her burning feet were primarily from diabetic neuropathy as far as I could gather. Both people had flares for different reasons. Neither matched the cause or level of flares my mom has, which are likely from a toxic drug reaction. But also my mom has some borderline Autoimmune results which could show another factor relating to her EM which may have been left undiagnosed for the past 14 years.
It's hard to find a mix of doctors to get the best effect.
I wonder how many on this board have tried Ketamine creams reported on some studies to help. It seems that the ketamine cream approach might open up a different type of treatment options, compared to the opiod, neurontin, cymbalta approach that many have tried with limited success.
Hoping for the best for all of you, in the continued fight. And we are still trying treatments on a kind of offensive push here, to see if we can gain any more ground against chronic pain in this household.
I almost like to think of doctors like generals. We have defensive generals that hold ground with pill prescription renewals that help you have a baseline of ground without some pain. (our base is level 7 pain ground). And we have offensive generals who try new drugs, techniques and adjustments, both up and down to see if we can do better. Some take more risks than others. And we have some generals who either admit they can't help and send us away or perhaps take "do no harm" as "do nothing". Those being fearful of side effects and liability are almost useless in our fight against chronic pain.
In my mom's story we have general pain of level 7 almost constantly and flares to level 10. Maybe that's as good as it can get for us, but we have to at times try to get something better. Worn down by chronic flares here and I can definately related to the fight that Sheltielife is going through.
We hope to be trying Ketamine cream within the next week as another test medication approach to see how mom responds.
Hey Sheltielife,
I tried the socks, and I like them, but I don't think they stay cool enough on my feet for a long enough time.
There is the link if you want to look into them. If you are a size 7 I recommend going with a size large. I like how it feels on the bottom of my feet, but most of my pain is on the top of my feet- so I would prefer just laying a cool ice pack on my feet.
sheltielife said:
Thanks Little K. Believe me there are times when I give up hope then something happens to give me some back! We have to keep fighting and hope that more doctors get to know about EM.
Hi Little K,
I think that like you said the socks wouldn't stay cool long enough. Sitting with my feet on freezer packs in a towel they are defrosted after at the most 2 hours.
Thank you for the info on the socks. I’ll def have to look into those. And also thank you so much for the support. I don’t know what I’d do without this site. I’m actually crying as I type this lol. Nobody else gets it. The pain, the frustration, I’ve stopped trying to explain it to people around me because to my ears I sound like a broken record. Thankfully I have some very good friends and family who seem to sympathize. I have 4 children who try hard to understand but are disappointed allot. I’ve now realized that my dermatologist is probably going to do nothing for me so I just smile and nod when I see him and have given up hope on that front. Thankfully my family doctor listens to me and is trying different things. I have another appointment with the dermatologist in June so he can see how I am in the heat of summer but I’m not holding my breath . I think I’ll just keep contact with you lovely people because I’ve learned more from this site and gotten more relief from the info I’ve gathered here than I have from any of the specialists. I wish I could hug some of you right now.