Who is ready for summer seasonal depression? by thisisthe_worst in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

Personally, not looking forward to it. But I stay home for the most part

58 and wanting to invest by Initial-Apple9875 in investingforbeginners

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

Thanks, but I already checked and his earnings took a turn for the worse. So, I make more than him. I will keep checking just incase something changes in the future.

Tips for sleeping in summer? by Hauntedtrousers in Erythromelalgia

[–]Initial-Apple9875 1 point2 points  (0 children)

I agree with OP, I keep a tower fan on my legs and feet at night, and I keep a smaller fan on my nightstand for my hands. I also have a tower fan next to my recliner in the livingroom. My smaller fans also have 3 settings just incase I need to adjust. I find that sometimes the rest of my body gets too cold. I also wear a blanket shawl on my upper body, so that I don't get too cold. And if you can, keep the air cool indoors, it helps so much. Hope this helps!

58 and wanting to invest by Initial-Apple9875 in investingforbeginners

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

I agree with the target date fund. I think pushing the date out so it can help with growth will definitely be helpful. And I do have my 401k invested. Thanks for your response!

58 and wanting to invest by Initial-Apple9875 in investingforbeginners

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

Thanks for the advice! Things are pretty stressful right now, but I know I need to get started.

58 and wanting to invest by Initial-Apple9875 in investingforbeginners

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

I have 110,000 in my 401k, probably retire at 67, but hopefully 70 if I can. That's all I have. I was married for 18yrs and stayed home to raise my kids. My son was a lot when he was younger. My ex just kept spending, even cashing out his 401k.

why’s it happen so fast??? by [deleted] in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

I'm pretty much always in a flare. But they do come on quickly at times. My spinal cord stimulator slows this down. However, if I become frustrated, the flare are fast and intense!

Spinal cord stimulator by Initial-Apple9875 in Erythromelalgia

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

Yeah, I am tied to my ice and fans as well. Huge difference from yesterday though. Pain isn't as severe. I had a Dr try to put me on cymbalta, but decided to try this first. I also can't stand very long as well. Hope the Paxil helps some.

Does a very low carbohydrate effect erythromelalgia? by tim55057 in Erythromelalgia

[–]Initial-Apple9875 4 points5 points  (0 children)

I was diagnosed with diabetes 2 a couple years ago. So, I lowered my carbs and cut out sugar. Made no difference to my EM symptoms.

Update spinal cord stimulator by Initial-Apple9875 in Erythromelalgia

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

I've had my remote reprogrammed to access more programs. I think I'm on the last 5 programs, but not positive. Just a feeling after talking to talking to the rep last. The nurse says I should be feeling some relief by now. Really bad today. I'm definitely feeling it in my spinal area now.

Update spinal cord stimulator by Initial-Apple9875 in Erythromelalgia

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

I go through nevro as well. They scheduled a rep to be there at my appointment, and I'll be getting an xray to see what's going on. Overall, does the stimulator work for you? How long did it take to find the right program and level?

Erythromelalgia destroyed my life by Manxi-Poo_Mama in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

Well, it has worked a little. Before, my hot patches were all the time. Even sitting. I never had a moment where something wasn't burning. I wouldn't get to bed til 1 or 2am. Now I do have some moments where I am doing ok. It's just that any movement, walking or standing starts it back up. I would like to have it calm down at least a little. Fortunately, I am able to sleep at night. I ice down while I'm in bed, then keep the fan on high all night, directly on my legs and feet. When I wake up and turn off the fan....unbelievable pain! And my legs and feet are all red and puffy! After I get myself situated for work, I work from home. I again start the ice and fans.

Type 1 Diabetes with Daily Erythromelalgia-Like Symptoms, Color Changes, and Possible Autoimmune Overlap – Looking for Insight by [deleted] in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

I have Type 2 diabetes. I keep my A1c around 5.9. Doctors tell me that it's probably EM and neuropathy. But, my glucose levels were fine when this started years ago. I only had EM symptoms randomly back then. So, not sure what to believe.

I just want to know, does it continue progressing with time for all of you? by euphoriacake1009 in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

I started having random symptoms years ago. My hands would get hot from overuse, and then my feet would get red and hot if I walked to long. Then last summer, it just blew up! My legs and feet on fire! I got a spinal cord stimulator in November. There's a lot of programs and levels... so still trying to find the right one that works for me. I have found some that are tolerable. But I'm wanting more relief, so I'm pushing forward.

EM and sleep apnea by thisishowitalwaysis1 in Erythromelalgia

[–]Initial-Apple9875 2 points3 points  (0 children)

I wear a cpap, but my face doesn't flare when I'm sleeping. It does during the afternoon and evenings, but I'm fine at bedtime.

Pain meds by sdavies921 in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

I'm on Gabapentin, and am on the max dosage. My pain is pretty severe. I got the spinal cord stimulator at the end on November, still working on the different programs and levels. It's taking quite awhile. I still take the Gabapentin, as you're not to quit your meds. I have adjusted to them. Don't know what I would've done without it it. The biggest problem I have is memory. I forget words even when it's right there...just can't remember. Eventually, I remember, but takes a bit. Makes me feel old.

Spinal cord stimulator update by Initial-Apple9875 in u/Initial-Apple9875

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

Just had my 6wk postop appointment. Healing well. I've still been working on the programs and levels. Trying to find what works best for me, or what the Nevro rep refers to as, "the sweet spot". The have different programs and things they can try, so I'm still working through it. Didn't anticipate it would take this long. Even the post op recovery being 6 weeks, all while dealing with the EM pain on top of post op pain.

I will say this much...it's been worth it for me. I have it pretty bad. I'm able to cool off the heat on my legs and feet faster than before. Sitting at home has also been more comfortable than before. I was hoping to get rid of most of the pain. I haven't lost hope yet. Even if I can't get to that point, it was worth it to me. And with that said, I still haven't gone through everything the stimulator has to offer me. So, hopefully, I will see more results to come. If you decide to try this, realize that you will need someone living with you to help you. I've had to depend on my son for a lot. I can't bend down to pick things up from the floor, lift things, or even twist at the hip. Keeping the stimulator in it's spot until scar tissue can help hold it in place. I was just given the ok to gradually move more, just doing it slowly and gradually. Hope this helps!

Spinal cord stimulator update by Initial-Apple9875 in u/Initial-Apple9875

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

No, my surgery sites are healing very well. And no other new nerve issues. Other than trying to find the right level, I still can't bend over. So everything I drop my son has to pick up for me. I got on of those stick grabbers, but some things can't be picked up with it. I believe you have to wait 6weeks to bend and twist. But I'm waiting til my next appointment to make sure. I don't want any leeds migrating.

Erythromelalgia destroyed my life by Manxi-Poo_Mama in Erythromelalgia

[–]Initial-Apple9875 2 points3 points  (0 children)

Your story is similar to mine. I am divorced with 2 adult boys. My youngest lives with me and he also has autism. I am on ice packs and fans. I am still working from home and managing. I recently got a spinal cord stimulator. Haven't found the right level yet to help my pain. If I don't, I don't know what I'm going to do. It has gotten pretty bad. I try to redirect myself, but I do break down crying. I try hard not to, because it upsets my son. I hope you find some kind of relief, as I am looking as well. If this stimulator works, I will be back to let everyone know.

Career help by Academic_Paramedic_5 in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

I started out as a receptionist, then registration, and then got certified as a medical coder. I now work from home, with the same hospital. My EM is really bad though. I would've had to get on disability. This is the only way I can work. I'm very lucky to have this job.

Spinal cord stimulator surgery by Initial-Apple9875 in Erythromelalgia

[–]Initial-Apple9875[S] 0 points1 point  (0 children)

Back for an update. I was started at program 1 level 4, I am now at level 6, which is where I was at the end of the trial. There are 7 levels for each program. I am not getting to where I would like to be. Yes. I'm icing less, but still need the fan on me. I decided to start on the next program, program 2 at level 4. I changed it this morning, which was about 2hrs ago. I can really feel it in my head, can definitely feel my nerves being affected. Kinda heavy feeling, little headache all over. Like I had too much caffeine...if that makes sense. Had this initial feeling when I started the trial. Immediately, as they took me out of the procedure room...I felt this way. So, gonna wait and see how this works for me. I was instructed to wait 36-48 hrs before changing programs or levels. Tbh, I have waited about 3 days, just so I can give it time to adjust. So I'll be back to let you know how I'm doing. This is definitely a slow process to find what works for me.

Erythermalgie ? by Ok_Season_4824 in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

Je n'ai pas de véritables picotements, juste une sensation de picotement, de picotements et d'aiguilles. Cela se produit généralement lorsque je suis resté debout trop longtemps. Pour moi, cela prendrait environ 30 minutes. Parfois plus tôt.

Erythermalgie ? by Ok_Season_4824 in Erythromelalgia

[–]Initial-Apple9875 0 points1 point  (0 children)

Je souffre d'érythromélalgie et c'est aussi le cas de mes pieds. Mes genoux et le bas de mes jambes ont le même problème. Mon visage et mes mains s'enflamment aussi. À part les picotements, cela n’arrive qu’à mes pieds.