i’m currently taking nothing to treat my EM now. off the effexor, gaba and carbamazepine
my burning has honestly lessened. it has spread to almost everywhere but i am less sensitive to my triggers.
my bigger problem now is freezing. my entire morning to late afternoon is spent burning cold. shivering. and walking on painful blocks of ice. all day. no matter if i leave the house or not. have my feet wrapped in heating blankets or massaging them… i can’t get blood flow to my feet. my hands are not far behind. i got hours without being able to use my hands. frozen solid.
still burning flares on feet during the night, knees, cheeks and ears but so far not as painful as last winter.
i saw a new derm last week. he told me to be careful, i might get gangrene. but never suggested anything i couldn’t do to prevent that. sooooo frustrating. said he couldn’t help me but be careful! ya might lose a foot there! whatttttttt!?!!
and i have instense itching where i have had bleeding wounds from scratching and ulcers breaking all over my body. just holes developing.
i’m in so much pain. looking at walkers.
Honestly if my feet looked like that I would consider going to an ER. It looks like the start or potential of gangrene to form. A strong calcium channel blocker or something along those lines to return the blood flow might be necessary. You don’t want to lose a foot.
I agree with Joe. Based off that photo, you need immediate medical attention. You can’t wait for another appointment or to find a doctor with requisite expertise yourself. You need to go to an ER today. If they can’t help you, then you ask that they refer you to another facility that can. Do not delay.
i will post an update
when i took that picture i hadn’t left the house at all that day. i just had my feet wrapped in a heating blanket… with obvious no relief.
we get so used to changing colours, unbearable pain etc that i haven’t realized the seriousness of the issue
Generally EM is not a concern with color changing because it is an excess of bloodflow but in the case of Raynaud’s or any other condition that leads to a significant decrease in bloodflow, it is a much more serious issue due to necrosis forming and this is not really easily if at all reversible if it occurs.
When tissue is turning black, that’s an emergency situation regardless of cause. Immediate, extraordinary measures must be taken to reverse it. The tissue is dying. Please seek emergency medical attention.
i have better color in my feet now. ball and toes are a dusky grey tone now. still very painful.
my physical looked them over and then suggested i increase my adalat to 120 with morphine for pain. told to keep them warm and see him next week.
(i have been keeping them elevated and wrapped inside a heating blanket for the better part of 2 weeks now. i only take off my compression hose to sleep, evening keeping them on to shower. they hurt so bad i fantasize about cutting them off and throwing them at someone - they are frozen solid or burning on fire. i can’t remember what it felt like to NOT feel intense sensations from them)
Cherry that looks better but still very painful. I’m glad you got help and that so far, you have yet to throw your toes at anyone!
WHen I tapered off effexor while back, I noticed wonky stuff happening with my blood flow + tingling. I mentioned this to my psych and she said she was not surprised, coming off effexor can do " very weird" things (her words!) I don’t know if that contributed for you… I never had to go to the ER or anything like that, though.
Glad this group was able to help you recognize the severity of your color change! I understand, we are so used to our own weird bodies we might not realize what is normal or urgent, unfortunately.
Take care + hope the drugs help.
Elevating and compression stockings reduce blood pooling in your feet which is probably the opposite of what you need. I would call your doctor and ask if you are supposed to be doing this. In terms of gravity, to warm something up and increase blood flow you want to keep your feet decline not elevated.
It’s hard to judge improvement there due to lighting changes. That still doesn’t look good. As Joe said, compression hose is almost certainly contraindicated for your condition. You need to improve blood flow to your feet. When blood starts to return it likely will burn and hurt initially.
Have they ever put you on Cialis (Tadalafil)? I knew someone who took that for Raynaud’s.
@Cheery I have both Raynauds and EM plus others. Having both you really have to walk a tight rope. Keeping warm enough to not trigger Rays but cool enough to not trigger EM. My feet seem to be the better regulator. In that if I keep core the right temp and keep them on the coolest side my EM lessens. I can be red and feeling pain and burning but hands are ice cubes to the touch. I keep my feet cool and free as possible. I pay attention to what the environmental temps are and what they could change to. Layers help with this. I know first hand that medications can cause other things to happen. My suggestions-I would be concerned about your feet at this point. Because lack of blood circulation can cause gangrene, Keep your doctor close. I push my self to move the blood around my body when Raynauds sets in hard. I walk or do floor PT until EM kicks in to gear. Then it hurts like hell, but I know the blood is returning to the tissue. Lying flat would be better then elevation of the limb for you to get the blood back into you feet. I also think that if you can figure out if your EM is constricting or dilating it helps treat the symptoms.
Take Care of your self
thank you so much for your replies
yesterday my doc did mention viagra but just as an aside, i think. he mentioned wool socks but i need more of an active source of heat: electric blanket or space heater, then and only then will they warm up - and then eventually burn with EM.
i shouldn’t have said elevated. i basically sit up in bed or lay out on the couch. my feet are never above my heart … and they hurt too much to consider dangling, sitting proper in a chair. i have a back massager i place then on to help circulation. i’m afraid to take off my compression socks. i know i won’t be able to stand at all if i do… i won’t be able to make it to the bathroom! i have tendinitis in my shins that becomes even worse with swelling.
my legs without compression socks ^^^. at least i feel there is a small part of my leg that seems normal when i wear them.
but as of right now i’ve increased adalat to 120. am waiting for a heart ultrasound in 2 weeks before my doc will consider mexeltine.
This seems like poor medical advice. The issue isn’t caused by your environment and is unlikely to be solved by modulating external temperature. Your doctor is approaching it like you have frostbite. It’s not practical to have an active heat source warming your extremities in perpetuity. You need systemic pharmacological intervention that will modulate the internal biological response to your external environment, as that is where the problem lies.
my primary doctor has told me many times it’s over his head, so to speak.
3 dermatologists, neurologist, rheumatologist, internist and ophthalmologist have all told me they can’t do anything for me… so i end up back in my pcp office.
i’m involved with the chronic pain center but all they have offered me now is physio, occupational therapist and a psychologist.
i do see my fourth derm in january
thanks all for your input
The Erythromelalgia Association has a couple doctors located in Edmonton in its physician directory. I know that’s not real close to you, but perhaps you could call them, explain your situation, and see if they know of any regional colleagues that could help you? They’re the only doctors TEA has located in Alberta in its directory.
thanks carter! i forgot about that. i called an edmonton doctor from the list last yr. i was told he only sees new patients as a walk in one morning a week. it was in the midst of winter so i didn’t want to brave the snowy highway without a definite appt!
i’ll see if my primary doctor can reach out to them.
thanks for your effort. as i suspect you have felt before, it gets so hard to keep advocating for myself. i’m already exhausted.
At minimum, to save yourself the hassle of going to a doctor who is unable to help, you should call ahead and ask if they are knowledgable of Erythromelalgia and Raynaud’s before scheduling an appointment.