Still In Remission

[Kaysis]

Hi,

The forum is back! I hope everyone comes back to here. I am still doing fine. In remission still. :)

[Cutiepie]

Hello Kaysis,
What a great message to start off the forum! I know many are encouraged by reports of remission.

I'm doing fairly well as far as my RSD. Other things are a problem right now - but that's for a different forum!

The only time my RSD is troublesome is during a change in weather and when I overuse my hand. Otherwise it's only a nuisance. I'm very grateful.

I hope others find their way back soon. I've missed my forum friends.

Take care,
Julie

[Abasaki7]

Hi Kaysis and Cutiepie! It's great that the forum is back up and running. :) I was on here before but due to memory loss I can't remember my old screen name. Thankfully I saved the link.

I hope others find there way back her soon!!

Have a great day!!!

[Diamon Lil]

Hello Everyone!!!! It is good to be back with old friends. I hope you all had a good summer and have an autumn without pain.

I am sure that once the word gets out that BT is up and running again, the membership will grow rapidly. I met some great people here and I hope they all return.

I joined this morning and was just now able to log in. There is an error in my username and I did not realize it until now. My user name should be Diamond Lil but somehow the d in Diamond was deleted. Anyhow it is so good to be back.
Regards, Lil

PS my former username was L Diana

[miss irie]

Hello.

Kaysis that is terrific that you're still in remission. It's always wonderful to hear someone is doing so well.

It's nice to see some other members here. I'm looking forward to participating in this forum again.

Cheers,
Catherine

[LisaM]

How wonderful to hear. I'm doing okay. Pain doc has been wonderful. I think this is the best I've felt since starting this ordeal. Current meds are:

Duragesic Fentanyl Patch: 75 mcg/hr (I think that's how you say it???) changed every 48 hrs
300 mg effexor/day
100 mg topamax day
Vicoprofen for breakthru
1000 mg magnesium at night for spasms, restless legs/body

Currently suffering from excessive diarrhea that caused either hemmorhoids or rectal abscess though. Went to dr. yesterday and he said it COULD be a side effect of the topamax, but since I'm seeing pain doc next week, talk to him about it. It "could" go away after I adjust to the topamax (but I've been on it 6 weeks, shouldn't I be adjusted by now???). So if anyone else had this SE from the topamax, please let me know.

Having some spasms/electric shocks/restless legs and body feelings but pain doc said to try magnesium before adding another medication. Seems to be working "fairly" well, but doesn't work for DAILY restless pain. Vicoprofen helps for that. All in all, I'm fairly satisfied.

Hugs
LisaM

[Diamon Lil]

Lisa: Have you already tried the magnesium. If I am not mistaken, I think magenesium causes loose bowel movements. It is one of the ingredients in milk of magnesia? Try reading about magnesia side effects. Now may not be the time to try it unless you get yourself regular. Best wishes, Lil

[LisaM]

That just may be the culprit, too. I never thought of that. And he has me taking a high dose, also. I will have to check into that. Another thing...It's my "monthly" time, and I can barely tell.

[WellLovedMom]

Kaysis,

Congratulations on your remission! It's nice to hear positives here, giving us a bit more hope. Could I ask if you went through anything specific to hit remission? (You may have told us before, but I didn't remember :o ).

Thanks,
Maria

[Howdy Doody]

Hi,
Like Maria, I would like to know the treatment as well.

Also were you DX in a timely fashion?

I am very happy for you it is nothing short of a miracle. Big Hugs, Roz

[Michelle23]

How wonderful to hear. I'm doing okay. Pain doc has been wonderful. I think this is the best I've felt since starting this ordeal. Current meds are:

Duragesic Fentanyl Patch: 75 mcg/hr (I think that's how you say it???) changed every 48 hrs
300 mg effexor/day
100 mg topamax day
Vicoprofen for breakthru
1000 mg magnesium at night for spasms, restless legs/body

Currently suffering from excessive diarrhea that caused either hemmorhoids or rectal abscess though. Went to dr. yesterday and he said it COULD be a side effect of the topamax, but since I'm seeing pain doc next week, talk to him about it. It "could" go away after I adjust to the topamax (but I've been on it 6 weeks, shouldn't I be adjusted by now???). So if anyone else had this SE from the topamax, please let me know.

Having some spasms/electric shocks/restless legs and body feelings but pain doc said to try magnesium before adding another medication. Seems to be working "fairly" well, but doesn't work for DAILY restless pain. Vicoprofen helps for that. All in all, I'm fairly satisfied.

Hugs
LisaM
Hi LisaM ~

When you wrote about the spasms and shocking feelings in your legs, and then mention Topomax, it brought back memories for me. I was on Topomax about 4 month into my rsd, because I wanted to get off the weight producing Neurontin. At first I had no problems, just felt a little funny. Then I started to get the wierd zappy feelings, and jumpy legs, and sometimes felt like something was crawling inside my legs. That had not happened before the Topomax. I also got horribly depressed, and all food tasted like poop to me. The honeymoom didn't last very long. I knew it wasn't working well for me. I tried several other medications after, until I got on the best combo, for me, anyway... Which is cymbalta and lyrica. Lyrica actually is the medication from heaven for me. It has worked wonders. Anyway, I know that magnesium, depending on the kind, is used as a laxative. So that could be it. I read a long time ago that magnesium (epsom salts) soaks work really well for rsd. Plus, its getting the magnesium where it needs to be. My rsd is in my left wrist, and part way up my arm, I just love soaking in the tub with the salts. I do believe it has helped. So, check on the type of magnesium you are on, I know there is a type that isn't a laxative. Sorry this is so long, the Topomax got me on a roll.

[frogga]

Hi

I also found that with topomax

lyrica made my spasms really really dreadful

am now off all anti epileptics.. instead ketamine/ diazipam/ DF118/ benzhexol/ baclofen/ etc. far less side effects!

r***x