how many people have pain!!

moonlight · Post by **moonlight** » Sun May 31, 2009 12:54 am

Hi guys

I'm still lurking about in the shadows......still fighting this rls.....it is on the winning side just now, which is a pain.

It has gone into an unbearable pain down my left side which leaves me aching during the day....tonite my right leg is getting it ....I just wish it wasn't always pain.

I'm also getting strange feelings down the left hand side of my body...pins and needles, numbness and weakness....and heart flutters..have had blood tests and the gp is talking bout getting checked out.

hey apart from that I'm great

hope your all well

huggles
moonlight xxxx

Post by **Polar Bear** » Sun May 31, 2009 7:29 am

Hi Moonlight, great to hear from you - tho your news isn't so great.

The other day I had been wondering how you were doing.

Yeah, I always felt I had 'aches and pains' in particular heavy leaden aches in my leg/legs, [u]as well as rls[/u]. Recently I have been wondering if in fact it is part of the pain of rls that others talk about. When I had actually thought that I didn't have the 'painful' rls.

Hmmm.. the strange feelings/pins and needles etc. ......... I'm awaiting an MRI scan to check out much the same thing (tho there is pain also). I have narrowing discs on the cervical spine and doc feels they could be the cause. Perhaps this is something to consider.

Take care Moonlight, enjoy this lovely weather we are having.

moonlight · Post by **moonlight** » Sun May 31, 2009 7:37 am

Hi betty ......yes this weather is fantastic!!!

good to hear from you....yes I always have pain, I describe it as a creeping pain and last nite it was bad.....went to bed at 3.00am up at 3,30 then up at 6.00 ..so I put the time to good use.

Since I needed to move I went out side and cut my grass(we have a push mower) weeded etc ...it was so nice..but even then hot it is 21 here already....

I am shattered and feel awfull ...and the ruddy rls has kicked in again ..but...my garden is looking good

have a good day

moonlight xxx

dogeyed · Post by **dogeyed** » Sun May 31, 2009 1:19 pm

Moonlight,
I'm so sorry you are having such bad pain. I'm glad your doc is making sure it's not caused by another source on top of the RLS. I have painful RLS, brings tears to my eyes. My medicine keeps it in check. But sometimes, no matter what drugs I pile on top of it, it can hurt. I have a tore-up back, so I imagine that's why it's so bad. What drives me nuts sometimes is my feet. You'd think I had diabetes or something, cuz supposedly that also feels like you're walking on glass. Even after a good night's sleep, I wake up and my feet hurt. And I don't go to work anymore, so I'm not on them very much. Anyhow, just wanted to let you know I was sorry about your pain, it can turn us into weak lil kittens, tho our souls are wanting to change the world, but because of our disability, we can't do it. Very frustrating.
GG

SquirmingSusan · Post by **SquirmingSusan** » Sun May 31, 2009 7:23 pm

Hi Moonlight. It's good to see you here. The numbness and weakness and heart flutters isn't RLS, so it's good to get that checked out. I can sure relate to the painful RLS, though. The other day I took an extra methadone, and I was still in pain. I had some arthritis acting up in my knee, so I took a Celebrex, and for good measure and added pain relief, took a couple Tylenols. I was still in so much pain, that I was almost in tears, and finally took a couple gabapentins. Between it all, it seemed to knock down the pain and it's been manageable again the last couple days.

Some days though I feel like there are little gremlins in my legs trying to rip the muscles off the bone. "Pulling sensation" anyone?

It's so true what GG said about it being frustrating. I so just want to get out and live my life, but some days it's just impossible. Our minister this morning was talking about how, in our culture, if we're not working we feel worthless. And even though I know that I use up all my energy taking care of my family, I still have this creeping inferiority about not working in my career. It's bad enough having these conditions without piling guilt and shame on ourselves because of them.

Post by **ViewsAskew** » Sun May 31, 2009 7:28 pm

Sorry you're having so much pain, Moonlight.

While some of us do have painful RLS, it's really important (I think) to remember that there are several other diseases that cause pain and that can appear to be RLS, but aren't.

Tingling is usually not RLS. Stinging feelings are what people with neuropathy (there are different types of neuropathy and several people here have thought that they had RLS only to find out it was neuropathy or RLS plus neuropathy).

It's easy to lump all things legs into RLS....but other things can contribute to pain and leg issues, too. Please make sure you go to a doctor and say that you're having this pain. You can tell him or her you have RLS, but it's probably wise to say that this is different than before so the doctor doesn't assume it's the same and then do nothing to check it out.

Aiken · Post by **Aiken** » Sun May 31, 2009 8:55 pm

moonlight--

I would suggest a spinal MRI, especially of the cervical vertebrae. Let me explain why...

At one point, I had a lot of peripheral tingling, and the left side of my body would feel like it was hot, especially when I'd lie on my right side. Sounds like it's in the same ballpark as your symptoms, whatever that's worth.

I did get an MRI, and it showed a slightly-bulging disc at the base of my neck (C7/T1). My neuro said it wasn't likely the problem, but I wasn't so sure. I knew I had often heard little sorta squishy sounds from my neck, like the sound you'd hear in your head when chewing gristle. They'd happen when I'd stretch or turn it abruptly/funny. I figured I had a small herniation of disc innards that was irritating either the column or the nerves branching out of it.

I started being really careful about *not* tensing all of my neck muscles when I stretched (it's hard!). I always turned my head gently and carefully. I took care to always sleep with my neck straight, rather than curled forward the way we do in fetal positions, or tipped to the side if I dozed off sitting up. I rearranged my workstation at work to make sure my head was always level. I really babied it like crazy.

After a while, I stopped having trouble with weird sensations, and sort of forgot about it. I figured I had either let the disc heal, or maybe some other neural trauma had healed. Either way, I got complacent. That was unfortunate.

One time, when I forgot not to compress my neck during a stretch, I heard a sudden, loud, gristle-chewing sound, and swore out loud in anger at myself. That night, when I went to bed, lying on my right side, my left side got all hot again. That was the point that I realized that I was probably right about the disc. I went back to babying it and things slowly went back to normal again.

Spin forward to now, and I can say that I've messed it up at least two or three more times since that first time, and it's been consistent... hear the gristle sound from my neck, get the weird sensations. Be nice to my neck, the sensations fade.

Obviously, YMMV, but it's definitely something you'd want to check out.

Neco · Post by **Neco** » Sun May 31, 2009 10:53 pm

Aiken, have you gone back to the situation with your doc? Because to have that not treated sounds bad, and only an idiot of a doctor would deny that something is wrong..

Aiken · Post by **Aiken** » Tue Jun 02, 2009 9:25 pm

I don't think there's much you can do to treat an iffy disc, other than to treat it kindly and carefully.

Neco · Post by **Neco** » Tue Jun 02, 2009 11:44 pm

Well, perhaps... But it sounds like even the simple acknowledgement that it could be the / a big problem was being avoided or dismissed.

It's one thing to say "This is most likely the cause of the problem, but unfortunately there are no real treatments that will help, you just have to be careful" as opposed to just dismissing it as if you have no idea what you're talking about.

Aiken · Post by **Aiken** » Wed Jun 03, 2009 3:22 am

Oh, well, I suppose I should mention that I already fired that particular neurologist.

Mind you, all he said about the disc is that it was unlikely, not that it couldn't be the problem. However, that's exactly the useless sort of vague conclusion he came to with everything, and that useless vagueness is exactly why I fired him.

moonlight · Post by **moonlight** » Fri Jun 05, 2009 9:47 pm

Hi guys ..I'm not ignoring your replies..it's just i ended up in hospital..in cardio.....all is well it seems to have been a panic attack..just a worse one than normal but very scarey.
i'll get back to everyone am so tired I need to sleep

moonlight xxx

SquirmingSusan · Post by **SquirmingSusan** » Fri Jun 05, 2009 10:36 pm

Take care of yourself! ((((Moonlight))))

Post by **Polar Bear** » Sat Jun 06, 2009 9:23 pm

Hi Moonlight,hope you're feeling improved.

zookeeper · Post by **zookeeper** » Tue Jun 09, 2009 1:09 am

Aiken, I'd really mention that to your current neurologist and ask for a cervical MRI. Although you get relief by babying your neck, what if you were ever rearended in a car? The warning from my neurologist that I could be paralized is what finally convinced me to have surgery, an L3/4 laminectony. No more burning, tingling or pain in my arms immediatelyafter the surgery! It was a herniated disc that was pressing on my spinal cord and could have been very dangerous if not treated. The recovery wasn't bad and that was more than 20 years ago. The techniques have improved so much today, it's sometimes done as outpatient surgery.