Where are they?

Post by **ViewsAskew** » Wed Sep 05, 2007 4:14 am

Bjorn's post about the memory of the first time a treatment worked for RLS somehow made me think of people who've passed through here and are no longer posting. Missed but not forgotten. Not sure the connection between these, but. . .

Maybe it's because Jan stopped by today and reminded me that sometimes those who have been absent come back again and remind us of why we missed them. Ruby does that now and then. So does Walkindafloors and Dogeyed and Mikeyvon and Penguin and Sarsdy and Corrie and others.

But Tazzer? Hos? Brandy? Randy? JanR? BeanieLee? Kwazylegs? I haven't seen posts from any of you in a long time. I do hope all is well with you. Oh, and heavens knows I could have missed someone. . .I hope I didn't as I know how hard it can be to feel left out.

I'll always miss Hazel, Em and Trev.

chefws · Post by **chefws** » Wed Sep 05, 2007 12:21 pm

They have probably found some sort of relief, and got on with their busy lives. I know that's what I did until my meds got pulled off of the shelf. I was a member of the RLS Organization in the mid 90's until I found relief. Now no longer having relief, I am back.

Walking After Midnight · Thu Sep 06, 2007 9:07 pm

Man I just haven't had much to say lately.
I don't know what it is but, still I check up on you guys nearly every day and see what's going on.

Really haven't found much relief. I'm off Hydrocodone and on Klonopin and Lyrica. Blehhhhhhhhh. I want my Vicodin back.
Although admittedly, I do feel better in ways.
I'm thinkin' of going on that patch in Oct. Maybe try and talk Mr NeuroMan into the patch and a Vicodin a day or something.

Also. I've lost about 10 lbs. even while ON Lyrica. Still too fat though.
Fat and Sexy that is.
Hee hee.
Oh boy. That was awkward.

Anyhoo.

Didn't want anyone to think I was dead. Thanks for thinking about us Ann.
Randy

jan3213 · Post by **jan3213** » Thu Sep 06, 2007 11:22 pm

To be perfectly honest, that's how I am, too, Randy. I'm in the background a lot, and I read posts, but seldom post anything myself--until this week.

And, I'm on at such odd times. I have full blown diabetes and am dealing with getting my blood sugar regulated with medication, diet and exercise (what little I can do). I usually feel nauseated in the morning from the meds, but feel better as the day goes on.

I care deeply about everyone on here--about how RLS effects us all. I just run out of words sometimes. Does that make sense?

Good to see you, Randy!

Jan

Rubyslipper · Post by **Rubyslipper** » Fri Sep 07, 2007 6:23 pm

Ann, thanks for caring about us. Same goes for me as for Jan and Randy. Honestly, I quit posting because it seems like all I did was complain. Lots of issues and dealing with them is hard (sounds like you have too many of your own, my Jannie) But I think of you all every day and I know where you are. Maybe when winter gets here I can join back in. I'll try really hard to hold up my end and not just complain :oops:

Post by **ViewsAskew** » Fri Sep 07, 2007 7:17 pm

That's what this place is for. . .complaining, I mean. And, then supporting each other because it sometimes just plain sucks.

Rubyslipper · Post by **Rubyslipper** » Fri Sep 07, 2007 8:05 pm

You are absolutely right. I certainly don't care when others vent but somehow it just seems like it's a self-fulfilling prophecy...complain, complain, vent, vent and then nothing goes right. But right now I need to vent...at least it isn't about my health!

My mother's youngest brother died last week and the funeral is tomorrow. Dad just called and said that Mom's oldest sister is in the hospital and probably won't make it through the night. So that just leaves my Mom in her family. I can't even begin to understand what she is going through right now. Both died of cancer so Mom is scared to death that Dad's cancer will end up killing him also. Life can be so cruel.

Just gotta keep on though because the good days far outway the bad.

Post by **ViewsAskew** » Fri Sep 07, 2007 8:53 pm

Oh, Susan. My heart hurts for you and your mom.

KBear · Post by **KBear** » Fri Sep 07, 2007 10:20 pm

Susan- sending prayers out to you and your family, and to the rest of you who are struggling with so many health issues on top of the RLS. May all find comfort, even those of us who only have the RLS to deal with.

MyDecember · Post by **MyDecember** » Fri Oct 05, 2007 2:15 pm

I haven't posted in a long time. I'm an old friend of the board but used to go by another nickname.

In the time I've been away, I've had many struggles. I found out through extensive testing including QST and autonomic systems testing that I have a small fiber neuropathy in addition to the RLS. This causes aching, burning pain and tingling. Some stinging. I also have fasiculations from the motor part of it and some weakness. Autonomic system seems to be normal which is good. As usual, my neurologist has no answers for me as far as the prognosis, and simply said, "You will suffer with this for many, many years". I want answers as to how long this will last and if the nerves will ever be normal again.

I feel that the neuropathy sets off the RLS. I had finally found treatment that gave me partial relief from the RLS and when the neuropathy got bad it really kicked the RLS off again. I don't know what to do. All the treatments for neuropathy make Restless Leg worse. Let me tell you, the folks with neuropathy are in a boat similar to ours- it's chronic, progressive, and there are no treatments that work for everyone, and even partial relief is hard won if achieved at all. However, having both I will say that RLS is worse- for me at least, as the neuropathy hasn't progressed to debilitating pain whereas the RLS has been completely debilitating.

I've missed all of you. I hope everyone is doing well. Any word on when the next RLS conference will be? I'd like to go this year and think I'll be able to.

Penguinrocks · Post by **Penguinrocks** » Fri Oct 05, 2007 8:42 pm

So cool! Thanks for sending! Hope you are doing well.

Keep you and the others in my thoughts and prayers, Hazel

HAZEL STITT
Audiovisual Specialist
Dwight D. Eisenhower Library
200 Southeast Fourth Street
Abilene, KS 67410
1-877-746-4453
hazel.stitt@nara.gov

just thought I'd share....

what I sent her was this:

http://www.salemnews.com/punews/local_s ... 75240.html

Neco · Post by **Neco** » Fri Oct 05, 2007 8:59 pm

Have they given you gabapentin for your neuropathy ? (Neurontin).. I took it to see if it would help my RLS and it made it no better or worse.

Lyrica seemed to help somewhat, but I couldn't even remotely afford to try it at a consistent long term high dose. Have you tried that for your neuropathy as well? I've never personally heard of them making RLS worse, or any other treatment for neuropathy... That sucks if its true for most patients :cry:

Have opiates helped you for either condition? Or will they not even go there, in all their medical greatness?

MyDecember · Post by **MyDecember** » Sat Oct 06, 2007 2:15 am

I am currently on neurontin, high dose. It seemed to help with the pain at first and then the effect dwindled over the next few months. However, it is helping me sleep which is great. I also tried Lyrica and found it had no effect whatsoever. The drugs they use as first line treatment for SFN are tricyclic antidepressants- Elavil, etc. Cymbalta, also. Big No No for RLS.

I am currently taking OxyContin 30-40 mg per day. It helps with RLS but hardly touches the neuropathy. I've heard that neuropathy doesn't always respond all that well to narcotics. I find it takes the edge off a little.

becat · Post by **becat** » Sat Oct 06, 2007 3:34 am

MyDecember,

You are still loved, wanted and needed. New name, still family. No questions asked, I promise.

I miss you and am so glad to see your name around here.

I hope that peace finds you soon and all get better with better answers.

May the moon shine brightly for you, to remind you that I will always be yours friend and that you will always be my cyber sister.

Love Lynne

Penguinrocks · Post by **Penguinrocks** » Sat Oct 06, 2007 3:37 pm

did anyone notice that i did get an email from Hazey???

anyhoo...I'm with Ruby...i feel like y'all don't need to hear me complainin when y'all got enough on your plates....

I haven't stopped loving you guys...I'm here...worried bout the shaking getting worse...but, I'm here.....

be careful of Penguins who lurk! ROFL.....