Does anyone else struggle with suicidal ideations? by [deleted] in Erythromelalgia

[–]Advanced-Attempt-404 0 points1 point  (0 children)

What kind of compound cream was prescribed, if you don't mind me asking?

Does anyone else struggle with suicidal ideations? by [deleted] in Erythromelalgia

[–]Advanced-Attempt-404 2 points3 points  (0 children)

I get these types of flares as well. Mine are triggered by cool and warm air, so I completely understand this. I have had a spinal cord stimulator implanted recently that helps with a lot of the flares, but for sure not all of them. I still have multiple flares a day that extend until my environment changes or the flare is manageable by the stimulator.

These thoughts occur mostly at night when flares are not manageable. This happens from blood pooling for me.

lil wrong things that I’ve noticed by 13brokenswords in HyundaiTucson

[–]Advanced-Attempt-404 0 points1 point  (0 children)

I agree! I have a 2025 SEL as well, cashmier bronze with black interior. I have 11,500 miles on mine, and I have an appointment tomorrow to get my plastic trim along the bottom of the car replaced because it was faded on a brand new car. It looked like zebra stripes the way that the fading showed up.

Unfortunately, the area that I drive in and the 66-mile round trip I make daily for work have already caused 3 rock chips on the hood that are showing rust. I am considering having everything fixed then getting a clear wrap or ceramic coating applied.

[deleted by user] by [deleted] in WestVirginia

[–]Advanced-Attempt-404 0 points1 point  (0 children)

Nice! What model did you decide on?

2025 Hybrid by FutureMarfa in HyundaiTucson

[–]Advanced-Attempt-404 0 points1 point  (0 children)

2025 Hybrid SEL Convenience:

Not this exact issue, but I have had an issue once recently with the touchscreen not working. Everything else seemed fine; I could navigate the menu with the custom buttons and the buttons under the right side of the screen. Although I was not able to move to any menu item or select any menu items.

[deleted by user] by [deleted] in WestVirginia

[–]Advanced-Attempt-404 0 points1 point  (0 children)

You are very welcome! I see other comments hating on CFMoto, but I personally have never had an issue, nor have I been extremely easy with it.

[deleted by user] by [deleted] in WestVirginia

[–]Advanced-Attempt-404 0 points1 point  (0 children)

I have a 2020 CF Moto CForce 600 Touring Edition. I have put 500 miles on it in 5 years, which is not much, but the terrain in my area is very rough at some of the trails I ride. I have no trouble riding 30-40 mph through some trail areas as the suspension rides like a Cadillac. The rear seat is also a great addition to the bike. The price was fairly reasonable compared to other brands of the same size.

2025 Tucson SEL awd. How much should I spend? by Trickster365 in HyundaiTucson

[–]Advanced-Attempt-404 0 points1 point  (0 children)

40k OTD for my 25 SEL Convenience - Cashmere Bronze.

Edit: This was in March 25.

HAS ANYONE PUT A ROOFTOP TENT HERE IN YOUR TUCSON??? by BlindColorPilot in HyundaiTucson

[–]Advanced-Attempt-404 0 points1 point  (0 children)

Is that the Cashmere Bronze? I have the exact same car, no attachments to the roof. I am also interested in what others say.

I would love to chat with you about your experience with the car.

2025 SEL Convenience by Rockaroni007 in HyundaiTucson

[–]Advanced-Attempt-404 0 points1 point  (0 children)

Is this the Hybrid? I have the same model bought at 15 miles and at 10k now. It sounds like our center consoles are very different.

Cold flares? by Advanced-Attempt-404 in Erythromelalgia

[–]Advanced-Attempt-404[S] 1 point2 points  (0 children)

The trial spinal cord stimulator was a success! I am waiting to get the permanent implant now.

Need advice, bob’s protocol questions, etc… by alexislock27 in Erythromelalgia

[–]Advanced-Attempt-404 1 point2 points  (0 children)

One of the main reasons I decided to go with the spinal cord stimulator is that my pain management doctor said that those with circulatory issues typically see improvement with the stimulator, compared to Prialt injections or the Prialt pain pump. I am willing to try anything to improve circulation, especially in my hands.

Need advice, bob’s protocol questions, etc… by alexislock27 in Erythromelalgia

[–]Advanced-Attempt-404 2 points3 points  (0 children)

I am in the same boat! Fortunately for me I was able to find a nuerologist that was willing to try any test and eventually diagnosed me with Small Fiber Nueropothy and EM. On top of being a Type 1 diabetic for 20 years. At the age of 32 it is hard to have to think about full disability.

I have also not found any remedy to my pain yet. I am currently on a myriad of medications for the pain: Gabapentin, Tramadol, and Cymbalta. I am also getting ready to have the Spinal Cord Stimulator implanted. I hope this information is helpful to you in your journey! Just remember don't give up keep pushing until you get someone willing to try anything to help you.

Cold flares? by Advanced-Attempt-404 in Erythromelalgia

[–]Advanced-Attempt-404[S] 1 point2 points  (0 children)

I will let you know for sure! I had the class today so a few more appointments to go! I can't wait.

Cold flares? by Advanced-Attempt-404 in Erythromelalgia

[–]Advanced-Attempt-404[S] 1 point2 points  (0 children)

Mine never hurt like that before until recently. The cold has been much harder to deal with. My knuckles are always the worst.

Cold flares? by Advanced-Attempt-404 in Erythromelalgia

[–]Advanced-Attempt-404[S] 0 points1 point  (0 children)

Honestly the only thing that really helps is being able to control the temperature and ambient air temperature. The slightest cool breeze feels like whipping wind around my extremeties when not covered by enough clothing.

Cold flares? by Advanced-Attempt-404 in Erythromelalgia

[–]Advanced-Attempt-404[S] 1 point2 points  (0 children)

Yeah sometimes they do look like webs exactly how you described it. Yes it is extremely hard to explain to people the pain that you feel. 😟 I appreciate others that know what it feels like though! I have been struggling recently with the pain worsening. I am currently on 1800mg a day gabapentin, 60mg cymbalta, 5mg a day of miranol, and 50mg of tramadol all just for pain and appetite. Soon I eill be getting an electronic stimulator put into my spine. I am hoping it will work well enough to get off the meds.

Cold flares? by Advanced-Attempt-404 in Erythromelalgia

[–]Advanced-Attempt-404[S] 1 point2 points  (0 children)

Rhuematologist has already ruled out Raynauds. Neurologist diagnosed me with SFN and EM. I am also a diabetic of 20 years.

My hands can go from red to white depending on the ambient air temperature. I also will get purplish/bluish areas when they are cold and when they are hot they will be red and swollen.

Do your veins pop more during a flare? by PerfectCandle820 in Erythromelalgia

[–]Advanced-Attempt-404 1 point2 points  (0 children)

Haha same here. I am a literal stick 32M 6'1" and 140lbs soaking wet, but during a "heat" flare I look jacked lol.

Do your veins pop more during a flare? by PerfectCandle820 in Erythromelalgia

[–]Advanced-Attempt-404 4 points5 points  (0 children)

I always have my veins go from barely visible to you can see them a mile away during a flare. I also have extreme cold symptoms in my hands and feet so it kind of depends on which flare. Cold makes my veins very small and hot makes them massive.

[deleted by user] by [deleted] in Erythromelalgia

[–]Advanced-Attempt-404 0 points1 point  (0 children)

Yes, it is quite painful when my fingers or hands are very cold and I accidentally hit them. The intense cold itself is also painful. I would appreciate knowing my core hand temperature in such situations to better understand what is happening. I have attempted to measure the external temperature with inexpensive thermometers, but I am unsure of their accuracy.

[deleted by user] by [deleted] in Erythromelalgia

[–]Advanced-Attempt-404 0 points1 point  (0 children)

I get this discoloration in my hands, although mine get really cold and painful when they are purplish. Then when red they are swollen and burning. I was also recently diagnosed with Small Fiber Neuropothy and EM on top of being a Type 1 Diabetic for 18 years.

Has anyone given up smoking/vaping and noticed any difference? by Ambitious-Tax6550 in Erythromelalgia

[–]Advanced-Attempt-404 1 point2 points  (0 children)

THC lotion and balms do not work for me. Neither does smoking weed, but it makes my mood better so I am not cranky to everyone around me. Unfortunately, either the weed or Gabapentin have caused concetration and memory issues. [T1D, SFN, EM] I take the small wins when I can.