I tried neurontin and I thought it was making me worse but my doctor said no up it so I did and a few months later I’m right. So lesson learned. Listen to your body first then the doctors.
I am trying magnesium. I bought Pure brand magnesium glycinate.
I’m not sure if glycinate is the correct one but that’s what I bought.
I read conflicting things on taking calcium with magnesium. Some web pages instruct not to take together. But I see those with em at you must take calcium with magnesium? Why is this? It seems that calcium interferes with the abortion of magnesium. Dr. Cohen doesn’t say to take calcium with it.
I took last night. I’m in a nasty flare today but the night was not anymire painful then normal. I only took 120 MG to start. So I think I probably have to try a few more days and suffer it out to see if the magnesium is making worse of not. Stick with it if not.
Here’s a vent! I’m sick of this! Trial and error.
At our expense of pain and burning. It’s wrong. Other diseases have medication not trial and error.
If it’s the last thing I accomplish here on earth. It will be to have medication and help for this disease so the next generation doesn’t suffer like us.
Dear Ray of Hope,
You are very brave. I suffer constantly as well. I have MS and Raynaud’s and some other autoimmune disorders. I was diagnosed with this Erythromelalgia about 18 months ago. I also have arthritis and Raynaud’s in in my hands and feet.
Also neuromas in the balls of both feet. Sometimes I just wish I could take myself out of this shell of a body that hurts all over. The flare ups are the worst.
I take aspirin one adult dose with dinner, a bunch of supplements like turmeric
and calcium.
I also was advised to turn up the dosage on the gabapentin. I take 900 mgs a day. I had already been on gabapentin for the pain from MS. I was fighting kicking it up. I did it slowly. I had been on 300 mgs a day and went up to 600 adding 100 mgs a week for three weeks and so on. Now I am on 900mgs daily. 300mgs-Three times daily along with the aspirin at dinnertime.
(also take the vitamins and supplements at that time as well)
I am so sorry you’re suffering. You’re not alone. Try the gabapentin again. Maybe you can go gradually upward with the dosage. I find it reduces the flares. I hurt constantly, I won’t lie to you. Walking hurts sitting hurts and sleeping hurts. Can’t win. But try to hang in, distract yourself from it as much as you can.
Let us know how you’re doing. I truly understand.
magnesium taken as a capsule helps calcium be absorbed. That said, Calcium cannot be absorbed without an acid environment, so take it with a swig of orange juice.
The mag. cream has absolutely no side effects. I use a dime to quarter size about 4 x a day.
I burn all the time, but unless it is a horrid flare, where all I can do is breathe and cry softly, I just feel like I am getting over a bad sunburn. I have started acupuncture which seems to calm my system down a bit.
Best to you,
Motherlove
Hey, I like your vent. Just made me feel, like, connected Me, too, flares all the time. Neurontin was a year long hell for me–took me that long to realize what was happening. I’m on Tegratol (sp?) now. More effective and less side effects, but it’s not like it’s helping decrease my flares. So, yeah, what the hell is with this trial and error b.s…
Monkey,
I think that the issue with trial and error approach is because there are no lab tests to confirm this disorder. I have recently found that acupuncture is helpful for me, even though I didn’t think it would do a thing, but…for me it is helping.
Me, too, flares all the time. Neurontin was a year long hell for me–took me that long to realize what was happening. I’m on Tegratol (sp?) now. More effective and less side effects, but it’s not like it’s helping decrease my flares. So, yeah, what the hell is with this trial and error b.s…