Author Topic: Restless Leg Syndrom + Peripheral Neurpothy = Lameness (Read 5518 times)

Miss Philicia · « **on:** March 10, 2008, 08:06:30 pm »

what to do what to say... it's quite bad tonight

Assurbanipal · « **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.

Jeff G · « **Reply #2 on:** March 10, 2008, 10:01:29 pm »

Quote from: philly267 on March 10, 2008, 08:06:30 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.

komnaes · « **Reply #3 on:** March 10, 2008, 10:03:24 pm »

Hope you did get some decent rest... and get better soon...

Hugs, Shaun

planonstaying · « **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

aztecan · « **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

Dachshund · « **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.

mark54 · « **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.

BT65 · « **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.

Miss Philicia · « **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.

Oceanbeach · « **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

Miss Philicia · « **Reply #11 on:** March 12, 2008, 08:38:01 am »

I woke up at 4am today... HOORAY.

BT65 · « **Reply #12 on:** March 12, 2008, 08:42:22 am »

From the RLS & PN? What, if anything are you taking for it?

Miss Philicia · « **Reply #13 on:** March 12, 2008, 08:56:37 am »

Neurontin.

BT65 · « **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?

Miss Philicia · « **Reply #15 on:** March 12, 2008, 07:42:22 pm »

I napped a lot today, so I will have insomnia tonight too.

Miss Philicia · « **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.

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Author Topic: Restless Leg Syndrom + Peripheral Neurpothy = Lameness (Read 5518 times)