Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Thinking of cutting my legs off.... RLS whine

OK, it was just a thought. That's all. No follow-through. This is just a continuation/update of my RLS vent.

You people here are the best, most supportive, funniest people I know. Just sayin. But seriously, I love this place.

Mkay, my beef for tonight: I'm having an awful time with the restless legs thing. It's is 24 hours/day of awful, terrible pain. It's so hard to describe, but the pain, very unlinke AS pain, is really hard to handle and manage. I have to knock myself out with ... well tonight it's double dose of zopiclone. I end up sleeping quite a bit on this stuff. Whether it's restorative sleep is another story, but sometimes I can rack up 12 hours of sleepy time. And have a great sleeping pill hangover. Much fun.

Tried just about all the drugs and alternatives now, and the only thing that sort of helps is the old standby: 3000mg neurontin and a bunch of morphine.

Mirapex, parlodel don't touch the RLS stuff, and now it appears, I can add Requip to that list. The initial side effects are nasty, but you tough those first few days, and then hope for a miracle. haha. Not my day, I suppose.

All bloodwork is normal still, and fatigue is through the roof. AS is mostly still controlled with NSD.

Anyone else have some other med/therapy you think I should try? I'm starting to lose my mind. <k

Thanks! You guys rock!

Darlin gal - don't do that. From restless legs to phantom restless legs, an ALL the rest of it!! Definitely cure (!) will be worse than the problem...

Sorry to read of it Megan. Can't offer any advice, but thinking of you hon Hope you can sort soonest.

Molly C
Keepingn on Keepng on

Poor you Megan! If we could all just have a restful night's sleep, we could face what each day brings so much better...

Are you a "Monty Python" fan at all? Just think of what happened to the Black Knight (in the Quest for the Holy Grail) after he had his legs cut off - probably not a good idea in the long run, m'dear...

Hope you find a fix soon,

Megan,
I can't believe your post.... I was up late getting my daughter ready for her school trip to Quebec today and I could not stop my legs and feet from hurting. I first thought that it was just my remicade wearing off early but think I was wrong. My left leg and foot started hurting on the weekend and on Sunday night I tried Meloxicam and last night I tried Demerol at 10pm and moved on to Lyrica at 3am but nothing has touched that pain. I know I had two coffee, a coke and a caramilk bar yesterday. I have tried to limit these in the last few years because I found that caffeine makes my RLS pain worse. I have not had a night as bad as last night in a very lond time! I am sorry that you were in pain last night but I sure know what it feels like...
Take care,
Beth

Hi Megan, I don't know if Seriphos will work for you. My Naturalpath told me to take it at night time. I can take up to 4 pills a night. It's a natural sleep aid. It can be bought in a Health food store. It hasn't caused any after effects.

Hugs

Gerri

Hi Megan,

Have you tried acupuncture?

One other thought. With all the meds you are taking could there be a interaction with side effects that would effect your legs?

I do hope that you find an answer.

Laurie

Sweet Megan, I am so sorry you are in so much pain. We have friends who finally took their daughter to CA to UCLA Med Center and she had to stay a few weeks but they got her straightened out. I have no clue what they gave her. I just know her pain and how upset her parents were.

I am so sorry for your pain.
Hugs.
Possi

Hi Megan! Sorry to hear of your problems. I read an article that said that restless legs usually only appear at night when we are laying down. It said that if you have it during the day that it probably isn't RLS. The article said that other conditions can cause RLS-type pains and can be confusing to the patient. They mentioned arthitis as a culprit. Just a thought if your RLS meds aren't working.

http://health.yahoo.com/sleep-symptoms/restless-legs-syndrome-rls-symptoms/healthwise--ue4940.html

Craig

The article in the treatment section also mentioned vitamin and mineral deficiency as a cause of symptoms. Are you getting everything you need through the NSD? Tough to tell what is causing it.

Craig

Dearest Megan,

I don't have RLS but I have something similar in my feet. Now I know that it must be ten times worse in the whole leg, but I soooooo know what you are saying. I have thought many times that I could just have my feet cut off. Isn't that what prothetics are for? Wheelchairs? If it hurts, just cut it out-right? Well, it is a curious thought in theory and we have all been there at one point or another, but hang in there. We have to have faith that with so many cures, meds, docs, researchers, up-and-coming little techno-weenies, that there will be an answer and you will get relief. I have SUFFERED this foot pain for about 12 years to the point of your desperation, and I finally found a p.t. in Billings, MT that is aggressively working on them and for the first time in those 12 years I can go shopping and enjoy it all in one. I am a mother of a patient just like you and I desperately wish I could help you. You are an inspiration!!