painful, swollen fingers and toes (erythromelalgia/Raynaud’s pain relief/cure)
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A dermatologist diagnosed me with erythromelalgia over a year ago, and a podiatrist diagnosed me with Raynaud’s disease this month, both of which are related, with no known consistently proven cure. They are vascular, neurological conditions where the extremities get chocked off from blood flow. Erythromelalgia and Raynaud’s can attack anyone, at any time, due to hundreds of causes, which is probably why people have to suffer with it.
(To skip this article and go directly to the video, scroll to the bottom of this post to play the YouTube video I created that covers most of this information).
My horrible erythromelalgia symptoms
My fingers and toes swell, throb, itch, and burn every day with varying intensity. My normal pale-colored fingers and toes turn bright red, almost a magenta color. Clicking my computer mouse, tapping the keys on my computer, and sitting is unbearable at times, so much so, that I have to lie down. Emotional stress causes additional pain and constriction. One day I was more stressed than usual, and my pinky toe turned gray, almost black (see photo below). The skin on the edge of that toe dried out from lack of oxygen and red blood cells. This is serious stuff that can cause necrosis (skin that dies), lead to sepsis (an infection that spreads throughout the body that can lead to death), gangrene and amputations. After that episode, I told one of my difficult clients that I was too busy to take on more work, but the truth is, I am in too much pain to work more than a few hours a day, and my body cannot handle stress like it used to. I don’t want to lose any fingers or toes, or end up in the ER.
What makes erythromelalgia worse
Walking, something that everyone should do, causes my toes to swell so much that long walks are out.
I used to put Sriracha sauce, hot sauce, salsa, or red chilies in most of our entrees, but now, spicy food burns my mouth.
The slightest amount of salt is now overwhelming. My husband puts salt and pepper on our salads, but my body can no longer tolerate salt, so I have to rinse the salt off the entire salad before I can take another bite. He leaves my salads undressed now because my body is so unpredictable.
Laying in the sun used to bring me peace and make me feel happy, but now, any amount of sun, even it’s only on my stomach with my hands and feet covered, causes the pain in my fingers and toes to intensify. My cheeks are a consistent pink, without any blush. My lower lip constantly peels, and the skin below my lower lip has a burning rash that must be covered with light foundation if I don’t want others to ask what’s wrong with my face.
I have cut out all oils, sugar and processed foods since they cause inflammation. Now I put a little bit of lemon or orange juice on my salads as a light dressing.
With Raynaud’s and peripheral neuropathy, the extremities, which is any part that’s not part of the core, your heart, stomach, organs…etc., don’t get sufficient blood flow and oxygen. Since my mouth, head, fingers and toes are not part of my core, which would be weird, it’s no surprise that I’ve lost some of my locks, and the skin around my mouth is dry. (add’l source: Signs of Anemia (insider.com))
My long hot showers are no longer an option. Even short, luke-warm showers, cause additional pain. Laying in bed at night with my feet propped up does not alleviate the pain or symptoms. The pain is even worse at night. One evening, I thought I was going to pass out because it felt like my toes were going to explode.
Pain relief remedies that work for erythromelalgia
I have found relief with cold. I bought mittens and booties that have inserts for ice packs. Some nights, the only way I can get to sleep it to have those ice packs on my feet and hands.
Pain relief for erythromelalgia and Raynaud’s
My thoughtful, loving husband bought me compression gloves and toe socks (order a size up), which help tremendously
When I wasn’t working and could type without excruciating pain, I did research online and found a few wellness businesses offering red-light therapy, aka infrared therapy, to treat erythromelalgia, among other conditions. I bought a hand-held red-light machine a few years ago for my frozen shoulder pain, so I decided to try on my hands and feet.
The 10-minute infrared treatment caused a pins-and-needles sensation the first time I tried it, which freaked me out, but I’ve read that infrared therapy promotes healing, so I decided to give it a chance. When I don’t use the red light on my hands or feet, the pain is worse, so I use it every day before I go to sleep now.
If you have pain, or injuries, you might want to look into red light therapy. Here’s the link to the newer version of the infrared/red light therapy machine I’ve been using: https://joovv.com/products/joovv-go-2-0
To remedy the rash and dry skin under my lip, I’ve had great results with ProCure Hydrocortisone Cream with Calendula which you can find from the company’s website https://www.procureheals.com/products/hydrocortisone/, Amazon, RiteAid and Walgreens. I only use it when I have a flare, or if the area is red. Cortisones are not to be used daily for extended periods of time, since it’s a steroid treatment.
For my peeling lower lip, I use Burt’s Bees natural lip shine in Smooch with a lip brush. I bought a $25 lip gloss that I thought would be pretty and soothing, but, even though it doesn’t appear to have any irritating ingredients, it burns my lips. Sometimes the more expensive products aren’t the ones that work best. Burt’s Bee’s lip gloss makes my lips feel moisturized and heathy and it’s only $7, but the rose color Smooch is much too light for my pale lips, so I’m going to buy a different color next time. Here’s the link to Burt’s Bees lip shine that I like, if you want to try it: https://www.burtsbees.com/product/lip-shine/VM-02054-00.html
What causes erythromelalgia and Raynaud’s
After extensive research, I found that the inactive ingredients in my fast-acting insulin (I have Type-1 diabetes), sodium phosphate, metacrescol and phenol, cause severe destruction. “Sodium phosphate can cause serious kidney damage and possibly death” (1). Metacrescol is a phenol, and phenols are poisons that lead to cell death and necrosis (2).
Diabetics are more prone to neuropathy, which the doctors I’ve seen have said have also diagnosed me with, even though I haven’t had the painful EMG tests to confirm diabetic neuropathy. After I read that the EMG tests cause pain and can potentially cause nerve damage, I cancelled that appointment.
Diabetics are prone to nerve pain, possibly due to frequent, excessively high and low blood sugars swings, but my blood sugar has been well-controlled for the last 20 years.
Causes of erythromelalgia and Raynaud’s
My hypothesis is that injecting the toxic ingredients from the insulins over the last 20 years, into my body caused neuropathy, nerve pain, erythromelalgia and Raynaud’s. In fact, medications have been shown to cause erythromelalgia and Raynaud’s. (My podiatrist was surprised about the preservatives in my insulin because he uses phenol to deaden (aka kill) nerves!)
I stopped taking insulin altogether, with my endocrinologists okay, after we tested my beta cell count. Since I have working some working beta cells, I can control my blood sugar with a low carbohydrate diet and exercise, but sometimes I only eat 20 grams of carbs in an entire day, and I exercise 2-3 hours to keep my blood sugar stable. Eating so few carbs and exercising excessively, is hardly sustainable. Since all the injectable insulins have the same toxic ingredients, my endocrinologist suggested I try an inhaled insulin.
I’m awaiting approval from my insurance company to use Alfressa, an insulin that isn’t injected, it’s inhaled. (info on Alfressa that isn’t from the drug company: https://tcoyd.org/2020/09/inhaled-insulin-if-youre-too-high-take-a-hit-of-this/
The original request for the inhaled insulin, Alfressa, was denied by my insurance company, so my doctor has to put in a rebuttal with a detailed explanation with proof that I have negative side effects from the insulins I’ve been taking. The rebuttal was denied so my doctor is going to put in a 2nd rebuttal. Alfressa is expensive so that’s probably why it’s not widely used and why insurance companies don’t want to cover it.
A few weeks after I stopped taking my insulin, the extreme pain went away in my fingers and toes. I no longer use ice packs on my fingers or toes. I can take long walks, eat salt and spices (not a lot, but a little). I can now taker warmer showers, and can lay in the sun, as long as my hands and feet covered.
My understanding is that I no longer have erythromelalgia, but the damage from the insulin medications I’ve been taking, may be irreversible, so I’m dealing with Raynaud’s symptoms. All the treatments I used for erythromelalgia, except for the ice packs, I use for Raynaud’s, which does help.
I still have pain, swelling, redness, hair loss, dry skin, and cold extremities, but I can still function and no longer panic at night that I’ll have to call 911. I’m still on my low calorie, low carb diet and exercise 2-3 hours everyday to maintain acceptable blood sugars. Once I get the inhaled insulin, my hope it that it will be well tolerated, and I’ll be able to eat more fruit, vegetables and grains, and won’t have to exercise just because I’ve eaten food.
I’m working with a physical therapist, every week, which doesn’t seem to be helping. My physical therapist told me to practice yoga, but my feet and hands turn gray every time I’m in a plank or downward dog. I’m also trying intermittent fasting to give my body extra time to heal so it’s spending less time digesting my food. I eat three meals within an 8 hour time period, and fast the other 16 hours. The intermittent fasting appears to be reducing the swelling in my fingers, but at a really slow pace.
I’ve started meditation, to lower my stress levels, since emotional stress causes horrible pain in my extremities. Trying to meditate and think happy thoughts when I’m in severe pain is difficult, but it is helping move my body to a parasympathetic (healing) state instead of a sympathetic (fight or flight) state.
A point I want to drive home, is that all medicines are poison. Drugs don’t cure us, they kill us. If there is a way you can lower the amount of medication you can take, find a less toxic medication, or eliminate medication altogether with diet, exercise and holistic means, do it now, before it’s too late.
I had a lot more photos of my feet, fingers and toes, that I sent to my doctors, that I haven’t shared in this post. Some of those photos were horrifying and upset me so much, I couldn’t keep them.
While I believe I found the reason for what was causing my erythromelalgia and Raynaud’s, the toxic ingredients in my insulins, I’m going to keep researching, get more tests, and try new methods to heal my body. I’m not giving up. I’ll keep you posted.
Hopefully, the information in this blog post will help you figure out what’s causing your symptoms, so you can get relief.
Let me know how I can help you, and if you have tips for me, please share them in the comments below. Life has taught me that I can’t do everything by myself, I need other people to make me laugh, tell me stories, give me insight, help me, heal me, and hug me.
To watch the YouTube video I created to showcase my story, click the play button below
P.S. This is my 870th blog! I’ve been publishing blog posts on this platform, consistently for over seven years now. I can’t believe it’s been that long. To prevent burnout, and to provide helpful, interesting, educational, unique content, I’ll be posting blogs once a week from now on instead of twice a week.
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- NIH. US National Library of Medicine. Medline Plus. “Sodium Phosphate: MedlinePlus Drug Information.” Online. Accessed 3.25.21. https://medlineplus.gov/druginfo/meds/a609019.html#:~:text=Sodium%20phosphate%20can%20cause%20serious,kidneys%20are%20not%20working%20well
- John W. Downs; Brandon K. Wills. “Phenol Toxicity.” NCBI, National Center for Biotechnology Information. January 26, 2021. Online. Retrieved 3.25.21. https://www.ncbi.nlm.nih.gov/books/NBK542311/
3. “Toxicity of insulin due to phenol and metacresol” Diabetes Forum • The Global Diabetes Community https://www.diabetes.co.uk/forum/threads/toxicity-of-insulin-due-to-phenol-and-metacresol.96246/ Phenol and metacrescol: “ Both of these substances are very toxic”
4. “Phenolic excipients of insulin formulations induce cell death, pro-inflammatory signaling and MCP-1 release” https://pubmed.ncbi.nlm.nih.gov/28962351/ NIH. PubMed.com Dec 6, 2014.
5. “Peripheral Neuropathy Fact Sheet” National Institute of Neurological Disorders and Stroke https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
“Coexistence of erythromelalgia and Raynaud’s phenomenon” Journal of the American Academy of Dermatologyhttps://pubmed.ncbi.nlm.nih.gov/14988692/#:~:text=Erythromelalgia%20is%20characterized%20by%20spontaneous,followed%20by%20cyanosis%20and%20rubor.
“Erythromelalgia” NORD (National Organization for Rare Disorders). Published
March 07, 2018 https://rarediseases.org/rare-diseases/erythromelalgia/
“Necrosis: MedlinePlus Medical Encyclopedia” MedlinePlus https://medlineplus.gov/ency/article/002266.htm#:~:text=Necrosis%20is%20the%20death%20of,the%20condition%20is%20called%20gangrene
“What Is Gangrene? Types (Fournier’s, Gas, Wet & Dry) & Treatment” eMedicineHealth published April 27, 2020 https://www.emedicinehealth.com/gangrene/article_em.htm
“Gangrene” Johns Hopkins Medicine https://www.hopkinsmedicine.org/health/conditions-and-diseases/gangrene
“Sepsis” Mayo Clinic. Published January 19, 2021. https://www.mayoclinic.org/diseases-conditions/sepsis/symptoms-causes/syc-20351214
“Gangrene: Symptoms, Causes, Diagnosis, Treatment, and Prevention.” WebMD. https://www.webmd.com/skin-problems-and-treatments/guide/gangrene-causes-symptoms-treatments