First post, anybody have only deep leg/hip pain?

[purrgirl]

Hey there, RLS/WED people! I was diagnosed in 2013 after some years of orthopedists, MRIs, cortisone injections, etc, etc. I'm on 1 mg pramipexole and 100 mg gabapentin. My symptoms almost exclusively deep, intense hip and leg pain- staying on the lateral side of the leg, straight down the 'soldier stripe' through my IT band and down my calf. Walking helps, sometimes the heating pad, sometimes the spa. If I have to try and sit, pressing my legs to the floor flexes the affected muscles and give me a tiny bit of relief. Just enough so I don't seem completely nuts!

My first question: Does anyone else have these types of symptoms with infrequent crawling sensations? Sometimes I wonder if there could be more going on....

My next question: Do many members see the doctors on the RLS/WED list? There are a couple who are 3 hours from me. While I'm grateful to the neurolgist who diagnosed me and prescribed the meds that let me get more than 2 hours of sleep, she's very hands off. When I talk about breakthrough symptoms she tells me to up my dose of pramipexole. I'm nervous about this advice, worried about it augmenting. Sometimes I think I live in fear of the time before returning!

This is where I am now. Any insight and advice would be much appreciated. Please forgive any typos that snuck by me, and thanks!

[Polar Bear]

The deep intense hip and leg pain, I'm not so sure of. With WED I think any pain is more of an ache, but as we know, we are all suffering in different ways.
You mention infrequent crawling sensations - how often would you actually have the crawling sensations - the 'I just gotta get up and move' sensations. When nothing else will do, but you must must must get up and move.

Finding a good doctor is crucial, or else finding a good GP who is willing to learn with you.
This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. This book travels with me to every doctor appointment with my GP. A neurologist who knew little was a waste of time.

Regarding your pramipexole, you are already on 1mg and this is too high. It used to be considered ok, but the max daily dose is now reckoned to be .25mg. You are correct in not wanting to increase this further. I have never used gabapentin but I think that dose could probably be adjusted upwards. Perhaps another member will confirm this?

Please know that doctors can be on that list saying that they treat RLS but we have no way of knowing how good they are, or are not. if you are willing to state the general area in which you live it is possible that members will know of a recommendation.

[Rustsmith]

Purrgirl, I have been taking gabapentin to supplement my dopamine agonists (formerly 0.5mg pramipexole now 2mg Neupro) for several months. From what I understand, your dose of 100mg of gabapentin is a basic starter dose. When I started taking gabapentin I was switching from a very low dose of another antiseizure drug. My doctor started me at 100mg/day and ramped it up to 300mg 2x/day over two weeks. I know that my 600mg/day is still a low dose and that there are others who take far more than that each day.

[ViewsAskew]

I'd wonder if something else was going on. It can be very difficult to tease out which is what.

With WED, think about it this way - you MUST move. The sensations are almost secondary, whether they be experienced as painful or electrical or whatever. The most important part is that when you feel the sensations, you also feel an equally or more important urge to get up and move.

I'm sure you've been evaluated for piriformis syndrome. That sounds possible. I have myofascial trigger points. I get them in my hip/buttock edge and the pain goes all the way down my leg. I had NO idea what they were for years. My guess no doctor would have figured it out, either. I did only because I get trigger points in my shoulder, arm, and head, so eventually I put two and two together (took me several years).

From arthritis to a hip issue, there are likely many possibilities if there is more than WED.

If you started on this dose of pramipexole, it's a high dose by today's standards. This amount should knock out any WED sensations and allow you to sleep. If you have increased over time, that's a different story, as you likely already know.

I wish we had a more concrete answer for you.

[badnights]

I have to say congratulations for knowing about augmentation even though your doctor didn't. I also resisted increasing doses, against my doctor's advice, but I was lucky enough that he listened when I told him about augmentation. I also GAVE him a copy of the book polar bear mentions. May it help many other patients.

If your doctor can't hear you when you talk about breakthrough, you will have to try to educate her about augmentation too.

"People used to think it was OK to raise pramipexole doses as high as Parkinsons patients, but now they've found out that higher doses will cause the disease to get worse in at least 75% of users. They've recommended that the maximum dose of pramipexole for WED/RLS be 0.25 mg, which I'm way over. The specialists apparently are worried about long-term effects as well as augmentation. So I'd like to get off my pramipexole, at least til my body re-sets, then if necessary start it at a lower dose. I'm expecting much worse symptoms for 2 or 3 weeks after I stop it. Can you help me with this, or can you suggest someone who can?"

You didn't mention your ferritin level in all of this; augmetation is more common and WED/RLS severity is greater in people whose ferritin is under 75 ng/ml. Ferritin is not always tested for in normal iron bloodwork; you might have to ask for it specifically. It's the single clinical test that should be done for WED/RLS.

I would also ask your doctor what route she would choose to determine if there is something else wrong, that you would like her to follow that route, in case it's not just WED/RLS.

The key question to determine if WED is really a problem for you is, as mentioned, the urge to move - does that urge come along with the pain sensation? or only when you have the creepy-crawly sensation? If only for the creepy sensations, then there is probably something else going on. Also, is the urge to move worse in the evening and night, or was it worse at those times when this problem first began? IF not, then you may not have WED/

[RockvilleMom]

I get pain, or deep aching - but not creepy crawlies. I am an occasional sufferer only - so I haven't sought medical care. Took me a loooong time to come to the undertanding that I probably have RLS, because of the usual description. As you can see, I am not nearly as well-versed as these folks - but I wanted to say "yes" to pain vs. "urge to move". Good luck!

[ViewsAskew]

I get pain, or deep aching - but not creepy crawlies. I am an occasional sufferer only - so I haven't sought medical care. Took me a loooong time to come to the undertanding that I probably have RLS, because of the usual description. As you can see, I am not nearly as well-versed as these folks - but I wanted to say "yes" to pain vs. "urge to move". Good luck!

You can have pain as the sensation, but one of the key criteria to WED is the urge to move. Without it, as I understand it, a diagnosis of WED cannot be made.

The following are the current criteria:
1. An urge to move, usually accompanied by an uncomfortable sensations
2. Motor restlessness expressed as an activity that alleviates the urge to move
3. Worsening of symptoms by relaxation
4. Variability of symptoms, with a worsening in the evening and early into the night.

The urge is critical. The sensation isn't as important - some people actually get no sensation.

[purrgirl]

Wow, such fantastic responses, thanks so much! Of course, I'm more confused now and a bit annoyed with my current neurologist. They are not interested in getting a ferritin level so I'm going to ask my GP; I'll post the results when I can make that happen. I don't mind sharing my location at all--I'm in Austin, TX. I was hoping to see Dr. Ondo in Houston---if anyone has any feedback please share.

Before the pramipexole, I would be asleep for about 30 minutes---my eyes would fly open, pain would be intense, and I would fly off of the bed. I tried ice, heat, self massage, but the only things that helped were walking through the house or getting into the spa. Of course, when you're incredibly sleep deprived the spa can be very dangerous! That first dose of pramipexole allowed me to sleep for 5 hours which felt like heaven. I can now sleep 6-7 hours. Naps are rare, the RLS doesn't like naps......

I do have strong urges to move to alleviate the sensations/pain but I can also 'mask' it by shifting in my seat or pressing my feet strongly into the floor until a)I can move about without looking like a crazy person or b)I can't take and go ahead and look like a crazy person. I had cortisone injections into my piriformis before my WED diagnosis; it would feel great until the numbing agent wore off, then it would come back like gangbusters, really ticked off at my interference with its fun. Oh! I had a flareup yesterday at 5pm. Nothing was working. Then my spouse used a rolling pin on my leg (only light/medium pressure) and that gave me some relief but then he just rocked my hips/legs from side to side and the relief was almost instantaneous. He tractioned my leg as well and that was amazing.

Hmmmm, much to think about. Thanks again for everyone's advice/comments, please keep them coming!

[Rustsmith]

Hi, purrgirl! As you can see in my notes on this thread: http://bb.rls.org/viewtopic.php?f=5&t=8904, I am in the process of changing from my old sleep doctor to Dr. Ondo. I see him for the first time next week. If you are interested in my first impressions, I would be happy to share them via PM.

As for making the appointment, it was possibly the easiest first appointment that I have ever made. I called the number posted on his UT website and the lady offered me a time slot that had been cancelled. I couldn't believe my fortune to get an appointment in less than two weeks.

[purrgirl]

Thanks Steve, I'd love to hear about your impressions of Dr. Ondo and the office. Viewsaskew, you've got me thinking about myofascial stuff now, thanks for the insight. Is myofascial related to fibro? Do muscle relaxers work for you when the fascia's freaking out? they worked for me a bit, but my neurologist just says to up my dose of pramipexole. No.

Not that I want to go down all of these roads, but to find out what's actually going on is one step further along in getting the correct treatment/management.

[ViewsAskew]

I find that when the trigger points are really bad that muscle relaxers do help some. A few weeks ago I couldn't even move my neck without extreme pain. The muscle relaxer helped me until it released some.

Not related to fibro, but can be mistaken for fibro. Fibro sufferers have tender spots or points. They can have trigger points, too, but it's not part of the disease.

It's hard to find someone who knows about each of these to tease it all out. I've had to do it myself - it's taken me many years.