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Author Topic: Restless Leg Syndrom + Peripheral Neurpothy = Lameness  (Read 2593 times)

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Offline Miss Philicia

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Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« on: March 10, 2008, 08:06:30 PM »
what to do what to say... it's quite bad tonight
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #1 on: March 10, 2008, 08:52:25 PM »
Don't know what to say -- and you are so net savvy.  I did see there was a chat room at restless leg syndrome (rls.org) in case that's any help.

Hope you feel better.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Online Jeff G

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #2 on: March 10, 2008, 10:01:29 PM »
what to do what to say... it's quite bad tonight

 I really feel for you . I have that also ...Don't know why but mine comes and goes . It hasn't botherd me for the last year, I count myself lucky.

 I have been on boat loads of meds to treat the symptoms of Neurapathy and Restless leg hell. I hate it when I feel bad and people give some lame advice that Ive already tried before. So here I go Doling out something lame you've probally already tried... Some times when my legs ached and I could not stand it any more I soaked in a hot tub for awhile, sometimes that helped a little.   

Offline komnaes

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #3 on: March 10, 2008, 10:03:24 PM »
Hope you did get some decent rest... and get better soon...

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline planonstaying

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #4 on: March 11, 2008, 06:08:43 AM »
Neurontin completely eliminated restless legs for me. I feel for you it is the worst sensation in the world sitting in bed and unable to sleep or just dozing and having your legs  wake you up
If someone tells you  potential consequences of a behavior  it  doesn't  mean they jude you or mit    they may just give a shit about you

Offline aztecan

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #5 on: March 11, 2008, 08:29:10 AM »
Hey Philly,

I don't have restless leg syndrome, but I do have neuropathy. It woke me at 4:30 this morning. It is now nearly 6:30 a.m.

Mine comes and goes, as others said. But when it decides to be a pain, it is one that really makes life difficult at times.

I hope yours abates soon.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Dachshund

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #6 on: March 11, 2008, 08:39:26 AM »
I feel your neuropathy. Wish I had an answer other than it comes with the territory. Hopin' your pain subsides soon.

Offline mark54

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #7 on: March 11, 2008, 09:10:43 AM »
philly-i've noticed everyones neuropothy is very different.  the amitriptyline 100mg in the evening has always worked well for me and i guess i'm lucky for that.  about 3 months ago aidsmeds ran a notice on a study using acetyl-l-carnitine using 1500mg 2x daily.  i can't tell you what extra relief it has given me.  it is very expensive so i can only afford 500mg 2x daily and for the first time in 10 years i can feel my feet placed flat on the floor.  i only have the restless leg syndrome if i come off the amitriptyline and like i said i've seen a lot of variation in each patient's neuropothy but you might want to try it.  i also tried the plain L-carnitine formula and it did not work at all i went right back to  the original status.  so i'm back on the acetyl-L-carnitine which i buy at GNC for about $35 per month.  i noticed a huge difference in a couple of days.  i hope this works for you.

Offline BT65

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #8 on: March 11, 2008, 09:14:16 AM »
David, can't say I have the restless legs, but I know the neuropathy.  I hope you were able to get some sleep last night. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #9 on: March 11, 2008, 03:10:54 PM »
It subsised, I guess... and I slept until 1pm.  Made me late with my meds though.
"Iíve slept with enough men to know that Iím not gay"

Offline Oceanbeach

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #10 on: March 11, 2008, 08:27:13 PM »
Hey Philly,

I've had both RLS and PN for a number of years and I use different things at different times, depending on the severity of the pains and the creepy crawlies in my legs.

I first got PN symptoms about 10 years ago in L.A. and doctor caught it rigt away, changed my meds and I healed.  A few years later, I was living in small town, retirement community on Clear Lake in Northern California.  That clinic did not have an HIV specialist on staff but was the only healthcare organization in town.  I have walked up and down the halls of that little clinic many times with a Doctor or Nurse who was not convincing enough to warrant knowledge of an effective med change.  An EKG and an MRI were ordered and no decisions were made, I was prescribed a month of Physical Therapy and that person found that if I wore 5 lb weights on each ankle, I could walk better but had no knowledge on why.  Physical Therapy dropped me as a patient because they could not help.

My T-cells and VL were maintaining on my early regimine so I was not authorized an outside specialist, such as my current ID Doc, who still travels to see patients out of county but, you had to be in county to receive services at either clinic he practices in.  I had the opportunity to move and become his patient, three years ago.  We changed my meds immediately as this doctor was recommended to my by my former doctor as being the best in the state.  Doctor says healing process is slow and it has been over a year since I last tripped on a sidewalk and landed on my face.

I sometimes still use the 5 lb weights and some stretching exercises, and am still healing.

I have had RLS for longer than anyone knew what it was.  I have found it helps to elevate my feet higher than my heart to help me get to sleep.  A potassium supplement seems to help and on nights when the RLS is so bad, there is no chance of sleep, I take a Requip.  The prescription for the Requip is to be taken every night at bed time, I didn't want another pill to take every night so, I asked if it was OK to only take on bad nights, doctor said yeah but I would stand a better chance of having more better nights if I took the pill every day.

My dad had RLS way back when and it was considered to be poor circulation problem and he medicated himself with Gallo Port every night.  Have the best day
Michael

Offline Miss Philicia

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #11 on: March 12, 2008, 08:38:01 AM »
I woke up at 4am today... HOORAY.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #12 on: March 12, 2008, 08:42:22 AM »
From the RLS & PN?  What, if anything are you taking for it?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #13 on: March 12, 2008, 08:56:37 AM »
Neurontin.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #14 on: March 12, 2008, 09:06:17 AM »
I think you told me this before; but I can't remember how much you said you're taking (mg wise).  Maybe it needs to be increased?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #15 on: March 12, 2008, 07:42:22 PM »
I napped a lot today, so I will have insomnia tonight too.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Restless Leg Syndrom + Peripheral Neurpothy = Lameness
« Reply #16 on: March 14, 2008, 09:08:04 AM »
My sleep has now returned to normal.

It's not just neuropathy and RLS, but also insomnia.  I swear with all of this I could never handle working a job.

Well, that and being a lazy fuck off.  I could feasibly work from home if I could find something to do.

OK... I'm making excuses -- shoot me.  I don't whine that much on this board, ladies.
"Iíve slept with enough men to know that Iím not gay"

 


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