Hi Not sure I belong here..but..I'll pick your brain anyway!

[meems]

Here's my story...

I'm here because RLS is being suggested as a possible source of my problem, but I'm still in the diagnosis stage. All my symptoms match with the exception of jerking motions. Tingling, sensations, mostly at night, worse when I lay down..not sure if this part falls in line, it is the front part of my legs, ie shins..and sometimes runs into the feet. Causes sleep issues.

I'll back up a bit...as how this came on is unusual so I'm finding.

I have had tendon issues for years, surgery on both of my elbows for tendonitis (horrible HORRIBLE surgeries!), neck & upper back issues for 20+ years, hip occassionally, and a pain in the tendon running down the side of my leg.


So, I see a new Dr. for the hip/leg issue, one that happens to also deal with back/neck since the ortho that did my arm surgeries does not deal with back/neck. He does xrays of neck upper back, wants an MRI of the hip..gives my ultram er to try.

Within 3 days of being on ultram, I have new pain, the tendon to the right of my shin, a trigger spot on the knee sends a knife into it...but 7 days in, my entire body.l.every single thing that had ever huirt over the years was in pain, arms were weak, I was back in tendonitis braces (haven't worn those for 2 yrs) hip, knees, side of thigh tendon (still) neck, between shoulder blades. I stopped the medication (I've had a reaction to celebrex before...flu like weakness, reminded me of that).

It took a solid 21/2 weeks off the meds for many of my symptoms to ease up...(completely mimicked fibro, all the trigger points they refer to).

I am now about a month + off the medication, the only stymptom that has not left is my leg issues to above the knees..both legs, front portions. Needly, worse when driving sitting (though not bad when indian style) horrible when I lay down. I do havbe off & on weakness in the arms also.

Next step emg.. that came back normal.

My visit today, he wanted me to look into RLS as one of the options wioth my family Dr., an MRI on the lower lumbar area to see if there are disk issues, then on to a neurologist. Earlier he mentione rhumatologist, but he did not mention that this time since the multiple symptoms weren't there this visit.

Anyway, given the trigger & the lack of the main component of jerking, would that rule out RLS?

Also, I can't for the life of me find any kind of reaction online or w/ other Drs. to ultram like I experienced, even the pharmacist just gave me a blank "well, everyone responds differently, only possible common denominator with celebrex is possible the binder" comment.

Anyway, that's my story & the ongoing saga of diagnosis, any input is welcomed!

[ViewsAskew]

Here's my story...

I'm here because RLS is being suggested as a possible source of my problem, but I'm still in the diagnosis stage. All my symptoms match with the exception of jerking motions. Tingling, sensations, mostly at night, worse when I lay down..

Anyway, that's my story & the ongoing saga of diagnosis, any input is welcomed!

Welcome, meems,

Not sure where you saw jerking as a criterion for RLS. It's actually isn't one. Many people with RLS have PLMs - that's where the jerking can come from. But many of us never ever know we have them, because they happen while we sleep. Few of us have them during the daytime.

RLS criteria are as follow: weird sensation, goes away when you move (very important), worse at rest, worse at night. There doesn't need to be a history of it in your family, nor does there need to be an event to make it start.

Ultram has been noted to cause a condition called augmentation, however. This is where it makes RLS worse. I've never heard of it happening in someone who has not had RLS before, but that doesn't mean anything. We hear lots of things that the doctors haven't heard of, but we're going through them.

It sounds like you've been through quite a bit; so sorry to have RLS piled up on top of it.

Do some more reading - the sticky posts in the New to RLS section are great for getting started.

Hope you get what you need here.

[meems]

Thanks for your reply! First thing I did was google "ultram augmentation", LOL..all I keep pulling up is ultram for use after breast augmentation! Do you have any links to explain augmentation better for me?

*I found some..reading now!

I'm tired of being a pin cushion, I just thank the heavens I have insurance!

[meems]

Here is what information was just emailed to me..the bold doesn't fit for me. The rest does.

To determine whether or not your symptoms are compatible with a diagnosis of RLS read the 4 diagnostic criteria below:



1) You must have an almost irresistible urge to move your legs which may or may not be associated with uncomfortable leg sensations. The uncomfortable leg sensations (or other limbs, but the legs are the most common) are not usually painful, are often hard to describe and cause you to move your legs to get relief. The discomfort may be the classical "ants crawling up the inside of the legs" but can be merely a pulling sensation, electrical feeling or actual aching type of pain. Some RLS sufferers can only describe it as a need to move the affected limb.



2) The symptoms of urge to move your legs and uncomfortable sensations come on only at rest (sitting or lying down, but not standing).



3) The symptoms are relieved in part or completely by movement (walking, shaking or rubbing the leg, etc.). The amount of relief from moving the affected limb may vary from moderate to complete elimination of the symptoms but the symptoms come back almost immediately after the movement has stopped.



4) They also occur only or are worse in the evening, especially when going to bed. As the RLS worsens, symptoms start occurring earlier in the day and may even then occur upon waking up in the morning.

[ViewsAskew]

Do you move to make the sensation/pain stop?

[meems]

I can't say specifically that I do...it's just more unconfortable when I am in the resting position, less painful when I'm walking or moving.

[ViewsAskew]

the majority of RLS cases are straightforward....but some are not.

I think you need a really good doc who will help you get to the bottom of this. This lack of urgency to move would concern me, if I were a doc. I'd wonder if this wasn't something else that presents this way.

In one of the "sticky" post, in the New to RLS section, I think, there is a list of copycat diseases. One of these is small fiber neuropathy. I can't remember the others. But, that might be worth a look.

[Neco]

Sorry you had such a bad reaction to the Ultram.. Yikes. However don't let that discourage you about trying other pain killers.. Codeine, Hydrocodone, Oxycodone/Oxycontin, MS Contin, all work very well for RLS if you indeed have it.. Opiates are actually the best treatment..

However I would agree you need to consult with a good doctor who can get to the bottom of this, a diagnostician of some sort, or a specialist. To add to the question about your lack of urgency, are you ever aware that movement will relieve your symptoms somewhat as they are happening? Like you try not to move, even though you know you can get some relief - and does the intensity of the symptoms build up as you restrict movement, only to reach a peak where you decide you MUST move, like you have some kind of pent up energy?

[meems]

I am in the midst of all kinds of torture devises..so still doing the diagnostic thing..

Next week is MRI lower lumbar to make sure there are no herniated discs, I also plan on going to my family Dr. for blood tests to check my vitamin/mineral levels, from there I think it's neurologist.

Movement...more & more I say no, my DH is a very light sleeper so I would know if I did in the night. Today it eased up on me quite a bit, first time in a month...maybe it is possible that the reaction to the medication is just not all the way done with me...?? Or..something entirely different is going on, pretty strange that it was all triggered when I started the ultram. Can't figure out for the life of me why it would stay in my system for so long though! The last pill I took was early Feb.

I will check out the other links..thanks again for listening!

[sasha0820]

meems - the beginning of your story sounds alot like my symptoms, I have tingling in my lower legs (mostly) and it goes into my feet, also a little in my one arm. It never hurts and dosen't really feel like that creepy crawly, tugging feeling that RLS describes its just like little tingles like when you sat on your leg the wrong way for 2 long, it never actually falls asleep, just feels like little tingling sensations. This only happens while I'm sitting or lying down. I wonder if it is RLS, I went to my family doc, twice and now they are sending me in for an EMG.

I decided to try a chiroprator and see if I my back was messed up because after my two kids I also had that tingling feeling but it went away after a short time. The chiropractor did say my hips were very out of line, one sat up way higher than the other, so I was hoping that was what has been casusing the tingling, went 3 times and even though it seems like its getting better at times its not completely gone, I still have 4 more visits with him this week and next, so we will see what happens, I'm not getting my hopes up.

In the meanwhile I am still going to my EMG apt. just to rule out any uderlying things. My apt is in 2 days, a little nervous about pins being stuck in me???? But I need to know what's going on right? I did have blood work done and everything was normal, my BP is great, and I have no other symptoms, do u think that rules out the really bad stuff like cancer, etc????

[ViewsAskew]

Sasha, see my reply to your other post.

[meems]

I'm leaning further away from RLS..but still no actual answers...

Sasha, I've already had my hips checked, they are even..so that's not my issue. My family Dr is a DO so he does manipulations on me often (neck/back/lower back...a min of once a month, sometimes more often.

I actually thought is was done as I had a solid week symptom free..then it reared it's ugly head again.

I did go for another MRI last week, this time for lower lumbar (last one was for my hip, which they found a tear in the cartilage, but that's another story), they are looking for nerve issues there. I'll know results this thursday adfter my Dr appt. meanwhile my arms are acting up, like tendonitis..which I think I mentioned I have had surgery for in the past.

I know I sound like this sickly human being, but honestly, even with all my symptoms that do slow me down, I'm like ADD woman & am constantly on the go....even when I have to fake it, I keep on grooving..

Not sure if neurologist or rheumatoligist is the next step if nothing is found here. He's mentioned both on dif. visits...

[sasha0820]

ok so I have noticed this a little bit over the last week, but last night I defiantely noticed getting up 4 times in the night to use the bathroom, whats the deal? Could the new vitamins I'm taking cause this, calcium is the only new one I have been taking? Also I wonder if it would hurt to just take an iron supplement without knowig if my iron is low. I just had blood work done at the doc, and they said everything was normal, they checked for like 5 different things one I know was vit B12, but nut sure if anemia was one, wonder if my iron is low. I guess I could call them, I know I shouldn't feel stupid, but I do, I feel like everytime I call they must be like thinking its her again, like I 'm crazy or questioning their how they do their job?

I'm 28 female, 5.5 123lbs never been sick, mother died of cancer, father has diabetes, brother has MS, and I never have been one to think that everytime I have an ache, I'm dying of something, but ever since I have had kids all I can think of is my two little girls growing up without their mother. So since this tingling crap I have been noticing ever little thing.

I don't even know if it's RLS will an EMG be able to determine that? I felt pretty good yesterday, until, I went to bed and my legs were tingling really bad felt like I even had twitches here and there, couldn't see my legs moving just felt like they were moving under my skin and the tingles felt a little different too, almost like I had bugs crawling under my skin???

Sorry, just needed to vent! I don't want this to run my life!

[sasha0820]

ohh yeah, another thing say this isn't RLS and it something like neuropathy, Lupus, MS or somthing like that wouldn't I have the tingling all the time not just when I am sitting or lying down???

[meems]

I have not only the tingling, but an aching in the muscle that runs on the outside of the shin bone, and an ache/pain in the knee. Again, mine really started when I was put on ultram..can't figure out the relation...but it's been a month & a half & it is still here. Wondering if the ultram triggered something that was underlying? When I had the utram full strength in my body, I had 100% symptoms of Fibro. Now that it is out of my system, I still have those symptoms, but they are not all at once, clear as mudd? Yeah, for me & the Drs. too.

I was told my EMG would have detected vitamin deficiency, because if there was a deficiency causing it, it would have shown in the EMG..and mine was normal. BTW...the EMG is not fun, but it's not horrible either. I personally hate the MRI worse..that noise makes me insane!

Relax..let the testing go on, it's just going to take time..

ARRG, WHY do I always have to submit like 6 times before I don't get the "invalid session" error?

I'm confused on the bathroom thing, can't figure out how it would be related. I'm thinking that it probably isn't.