Location of RLS Symptoms Changing

[Oozz]

My RLS seems to change places. It started off in my legs 3 years go. About 1.5 years ago it moved to the right wing of my scapula. Now it seems to be on the left wing of my scapula.

Wondering if anyone else has experienced changed in their RLS symptoms.

[Polar Bear]

My RLS started in my legs, 90% in my right leg. 35 years sgo.
Then travelled to my arms.
Moving to my arms was nothing to do with augmentation as it was way before I started taking medication.
It has never appeared anywhere else.

[badnights]

Legs for years;
Later, also but only rarely in arms.
Then medication and augmentation, and legs and arms bad.

Since I've been off dopaminergic meds, I rarely have it outright in my arms, but it's always there ... hovering, sort of; I feel the wrongness. I have no boundaries to the upper side of my wrists and foreams - I merge there into my surroundings.

New development lately is a bilateral difference. I used to experience it in both legs equally. Now it is frequently and noticeably in my left leg only.

Oozz, do you get it in your legs still? or has it moved entirely to scapulae?

[Oozz]

Legs for years;
Later, also but only rarely in arms.
Then medication and augmentation, and legs and arms bad.

Since I've been off dopaminergic meds, I rarely have it outright in my arms, but it's always there ... hovering, sort of; I feel the wrongness. I have no boundaries to the upper side of my wrists and foreams - I merge there into my surroundings.

New development lately is a bilateral difference. I used to experience it in both legs equally. Now it is frequently and noticeably in my left leg only.

Oozz, do you get it in your legs still? or has it moved entirely to scapulae?

Entirely in my scapula now. I used to deeply massage and stretch my legs every night for well over a year. It was during this time period it moved. My doctor thought it was different, but not unheard of.

[Frunobulax]

My RLS started in my legs, 90% in my right leg. 35 years sgo.
Then travelled to my arms.
Moving to my arms was nothing to do with augmentation as it was way before I started taking medication.

Both legs at the start. Arms after starting with Gabapentin. Whole body when I was augmenting.

[ViewsAskew]

Interesting story....

My brother started getting RLS symptoms when he was a teen, as all of us in the family did. When he was in his 30s, moved to his arms exclusively. After about ten years, his arm went numb, he went to the doctor and found out he had some spinal issue that required surgery. Turned out he didn't have RLS all those years. Not sure what he felt in his legs prior - or if he did have it and it just went away. It's been at least 5 or 6 years since his surgery and he still is symptom free.

Two people who've been members here had RLS specialists diagnose their RLS, both had symptoms outside of the typical legs or the legs>then (meaning, starts in lower extremities and eventually moves to other body parts with augmentation or general worsening). One had symptoms primarily in her face. Both people eventually found out that they had small fiber neuropathy instead of RLS.

I am NOT saying that anyone with atypical symptoms doesn't have RLS. I am saying that it's important to ensure if you do have atypical symptoms that you have your doctor check out other possible causes just to make sure.

[Oozz]

My RLS started in my legs, 90% in my right leg. 35 years sgo.
Then travelled to my arms.
Moving to my arms was nothing to do with augmentation as it was way before I started taking medication.

Both legs at the start. Arms after starting with Gabapentin. Whole body when I was augmenting.

Did gabapentin cause augmentation for you?

[Rustsmith]

My earliest memories were associated with discomfort in my legs while flying while I was in my mid-20's. At the time, I felt like there was a switch in my legs that was tied to the "Fasten Seatbelt" light on the plane. As soon as the light went on, my legs started up. But I had no idea that this wasn't something that everyone experienced. Over the next couple of decades, the discomfort became gradually more severe, but I learned to live with it since I spent many, many hours on airplanes. I should add that most of these flights involved a significant number of time zone changes, so I was also chronically jet lagged for many years (which might have been one of the benefits of RLS because I was always able to work much more easily than my associates).

A few months after I retired and finally allowed my body to acclimatize to a single time zone, I started having severe problems with my arms and abdominal muscles just after I would go to bed (if I had leg issues, I don't remember so they were not have been as severe as my abs). I would have to curl up into a tight fetal ball to rid myself of what I now know is the RLS need to move signal, but at the time I had not been diagnosed and had no idea what was wrong. I was seeing a neurologist for migraines and complained about my sleep issues. She ran an EEG and gave me a variety of sleeping pills to try, but I now realize that she had no idea of what RLS involves and so she provided no help. I got by on less and less sleep over the next four years until I finally sent myself to a sleep doctor. That doctor's Physician's Assistant tentatively diagnosed me with RLS during the first 30 seconds of my office visit and confirmed it when she looked at my answers to the RLS questionnaire. I started pramipexole that night and thought it was absolutely wonderful.

Since that time, I have been through augmentation from two DAs and my RLS has progressed to the point where it is now rated as very severe. I don't notice it in my arms anymore, but if it starts up in my abs, I know that I will not be getting any sleep that night no matter what I do or what I take.

[Oozz]

Since that time, I have been through augmentation from two DAs and my RLS has progressed to the point where it is now rated as very severe.

Are you saying you augmented and it never returned to baseline? Or, are you stating two separate experiences?

[ViewsAskew]

Since that time, I have been through augmentation from two DAs and my RLS has progressed to the point where it is now rated as very severe.

Are you saying you augmented and it never returned to baseline? Or, are you stating two separate experiences?

Several of us augmented and it never returned to baseline. The docs usually try to say it is progression...but I think some of us are a bit skeptical. My baseline was very severe PLMS and very minor RLS. After augmentation, it was 24/7 RLS and severe PLMS. After treatment for augmentation, it was about 20/7. Over 15 years, it has reduced to about 10-12 hours a day instead of 20 hours a day. But, nowhere close to baseline. And, it has improved...which leads me to believe some of us do react differently to augmentation.

[Frunobulax]

Both legs at the start. Arms after starting with Gabapentin. Whole body when I was augmenting.

Did gabapentin cause augmentation for you?

No, I augmented on Pramipexole. Gabapentin was a fairly outlandish experiment of controlling my severe symptoms after coming off dopamine agonists. (Talk about opioid-phobic doctors.) Of course, neither Gabapentin nor Lyrica did anything for me. But under Gabapentin my symptoms often started in the arms, before I had to start walking through the nights.

[Frunobulax]

Several of us augmented and it never returned to baseline. The docs usually try to say it is progression...but I think some of us are a bit skeptical. My baseline was very severe PLMS and very minor RLS. After augmentation, it was 24/7 RLS and severe PLMS. After treatment for augmentation, it was about 20/7. Over 15 years, it has reduced to about 10-12 hours a day instead of 20 hours a day. But, nowhere close to baseline. And, it has improved...which leads me to believe some of us do react differently to augmentation.

Amen. I don't think we have done any studies comparing RLS progression with and without dopamine agonists, and we should do this, urgently.

From my (very limited) personal experience (I'm no doctor but I have ME/CFS, a disease where patients network extensively and share medical data and research, and where RLS is very common, so I talked a lot about RLS with other sufferers), I can separate RLS patients very distinctly in 3 groups:

1. Patients that never took dopamine agonists. Many are living with their disease for many decades, and had only little or no progression.
2. Patients where RLS showed a marked progression that were on dopamine agonists once but quit them. There was some augmentation (improvement after quitting DAs), but I don't know a single RLS sufferer that reported that her/his symptoms returned to baseline after they went off dopamine agonists.
3. Patients currently taking dopamine agonists. Can't say anything there, as they might suffer from augmentation or progression, and we can't tell which is which.

I don't know a single patient with severe progression that didn't take dopamine agonists. Now, this may be due to the fact that dopamine agonists are the first line treatment and pretty much automatic for severe RLS, and that I have access only to a certain subgroup of RLS patients. But still, one has to wonder if this is really just augmentation, or if dopamine agonists in some way make our disease worse, long term.

[Polar Bear]

I came off a DA having been on it for 15+ years.
I don't know what my base line is as I transferred to other meds while reducing the DA.
However I can say that my symptoms are reduced and better controlled.

[Rustsmith]

Are you saying you augmented and it never returned to baseline? Or, are you stating two separate experiences?

When I augmented on pramipexole the first time, my first RLS doctor said that it was due to progression and simply switched me to the Neupro patch. When I augmented on the patch, I was about to go through an interstate move and so my second RLS doctor (one of the experts) wasn't willing to have me go through the normal post-augmentation process, so he switched me back to a higher than normally recommended dose of pramipexole. I existed like that for the next six months until I could get into my third RLS doctor. I asked, and she agreed, to switch me to methadone without going through a washout because my RLS was already severe before I started any RLS treatments and so it was obvious to both of us that I would need an opioid anyway.

Since that time, I have been through two one-week periods where I have been off opioids and those two weeks were absolute misery. The opioid withdrawal wasn't too bad, but I found that my RLS baseline had progressed to the point where it now qualifies as "very severe". I would be willing to go through another period of opioid withdrawal, but only for an exceedingly good reason since I know that during the time without medication that I will get almost no sleep, will not be able to stop moving and will be on my feet continually because I cannot even sit.

Patients that never took dopamine agonists. Many are living with their disease for many decades, and had only little or no progression.
Patients where RLS showed a marked progression that were on dopamine agonists once but quit them. There was some augmentation (improvement after quitting DAs), but I don't know a single RLS sufferer that reported that her/his symptoms returned to baseline after they went off dopamine agonists.
Patients currently taking dopamine agonists. Can't say anything there, as they might suffer from augmentation or progression, and we can't tell which is which.

There was a study about two years ago (sorry but I am too lazy to try to find it again) where they looked at pre- and post-augmentation MRI's of RLS patients and concluded that going through augmentation caused "structural changes" to the brain. The controls for the study were RLS patients currently being treated with DAs but who had not yet augmented and non-RLS patients. They did not draw any conclusions about whether this resulted in any changes to the patient's RLS, only that augmentation had resulted in these changes that were not observed in either of the two control groups.

[Oozz]

Several of us augmented and it never returned to baseline. The docs usually try to say it is progression...but I think some of us are a bit skeptical. My baseline was very severe PLMS and very minor RLS. After augmentation, it was 24/7 RLS and severe PLMS. After treatment for augmentation, it was about 20/7. Over 15 years, it has reduced to about 10-12 hours a day instead of 20 hours a day. But, nowhere close to baseline. And, it has improved...which leads me to believe some of us do react differently to augmentation.

Amen. I don't think we have done any studies comparing RLS progression with and without dopamine agonists, and we should do this, urgently.

From my (very limited) personal experience (I'm no doctor but I have ME/CFS, a disease where patients network extensively and share medical data and research, and where RLS is very common, so I talked a lot about RLS with other sufferers), I can separate RLS patients very distinctly in 3 groups:

1. Patients that never took dopamine agonists. Many are living with their disease for many decades, and had only little or no progression.
2. Patients where RLS showed a marked progression that were on dopamine agonists once but quit them. There was some augmentation (improvement after quitting DAs), but I don't know a single RLS sufferer that reported that her/his symptoms returned to baseline after they went off dopamine agonists.
3. Patients currently taking dopamine agonists. Can't say anything there, as they might suffer from augmentation or progression, and we can't tell which is which.

I don't know a single patient with severe progression that didn't take dopamine agonists. Now, this may be due to the fact that dopamine agonists are the first line treatment and pretty much automatic for severe RLS, and that I have access only to a certain subgroup of RLS patients. But still, one has to wonder if this is really just augmentation, or if dopamine agonists in some way make our disease worse, long term.

I recall seeing the DA structural Brain change study as well. OnE thing tO point out is how much damage the sustained sleep deprivation would have on your brain. This is one of the things the scientific falls short of - we don’t know the true long-term effect of many of these medications. This is largely why we all continue to pursue natural remedies, right?

In the end, it is all a trade off. Are you willing to sacrifice relief now for the hope of a cure later on?

I’m only 33 and I’m willing to shave off some extra years later so that I can wake up refreshed and run around with my son. But, everyone’s situation is different.