Restless "Legs" in Legs, Arms and now even Hands and Feet - Or is it really Restless Legs ??

[mistaminista]

Hi,

maybe some of you remember my post one year ago, when I already had some similar questions.

My RLS like symptoms (I already had in my legs for 5 years) spread to my arms and upper body.

Unfortunately the symptoms didn't improve and now again I had a big win in the "bad symptoms lottery": It spread to my hands and feet, which is even worse, because those areas (like my palms and the soles of my feet) are quite sensitive areas.

I started with Chronic Fatigue and small muscle twitches all over my body in 2016, then in 2018 my legs started to feel painflul (like a migraine in that part of my body), in 2023 it spread to my arms and upper torso and now to my hands and feet (maybe because I tried dipyridamole for some daysto lessen the amount of Tilidin I am using).

I used Restex (which contains LevoDopa) from 2018-2023 and added 150mg Pregabaline in 2019 and was fine with that medication, when it spread I had to totally change the medication to 2400mg Gabapentine and 200mg Tilidin each day, for the new situation I think I have to change the medication again, in my hand and feet it feels like untreated by now. In contrast to Dopamine itself, Dopamineagonists don't work for me at all: Symptoms don't noticeable lessen down and I am getting a bad feeling as if my legs are moving or shaking like "ghost legs" when I don't move them (is that the usual RLS feeling??).

And I still am not absolutely sure if I evene have "Restless Legs" for some reasons:

- What is an "urge to move"? How would you describe that feeling? I think most of the time I don't have that. Maybe I am feeling something like that in my legs, when using pramipexole or dipyridamole (which I tried two times), but this stops directly after cutting off that medication.

- Is RLS painful? Having no urge to move is a good thing I guess, but I would descibe my symptoms as painful. F.e. in my hands and feet it feels like polyneuropathy and in my legs and arms it can feel like terrible cramps and burning when I wake up during the night (but still meets some RLS criteria, like less symptoms while moving and getting worse when at rest).

- My symptoms started always from one day to another with no "going back". Is that unusual?

- My symptoms are persistent for years now and don't change within time or during the day at all. Is that the same for you?

- I thought most (or even all) peope with RLS suffer of a lack of sleep? I wouldn't describe my sleep as good or refreshing, but mainly because of my chronic fatigue and because I am waking up with heavy pain several times of the night. But despite that I could sleep for maybe even 10 hours if I wanted. Does this sound like usual RLS?

- Nobody in my whole family has neurological deseases (despite maybe some cases of dementia). Shouldn't that be the opposite for people who get idiopatic RLS?

- I still do have muscle twitches (which I had before getting any RLS symptoms) but that only contains discrete muscles not my whole leg or arm. Is that the way it should be like for RLS?

Maybe you could help me with those questions??

I still have the hope that there is an fixable root cause for my "RLS", especially because it feels atypical with it's symptoms and sudden onset. Unfortunately my iron levels are quite normal, maybe a bit below the threashhold which the may clinic is recommending.

And I am still looking for a good doctor which is familiar with RLS. The neurologists I've been at, didn't even know that Restless Legs can affect other parts of the body, and when I told them that my upper torso is affected, both advised me to make an appointment at a Psychatrist ;-).

Kind regards

Carl

[SueJohnson]

It doesn't sound like RLS to me. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

The urge to move means you just feel like you have to move your legs and when you do by walking for example the RLS goes away while you are doing it.

Also dopamine agonists don't work for you and they are sometimes used as a test for RLS.

[Madlegs1]

I'm sorry to hear of your troubles, Carl.

I think there may be a RLS doctor in Germany -- check the European RLS board?

It's difficult to answer your questions without a thorough information background.

Have you been on DAs for any length of time?

Is Tilidine a safe medication for RLS??

Do you keep a diary of food and drink, to determine any possible triggers?

Others will give more help.

All the best.

[SueJohnson in reply to Madlegs1]

Tilidine is actually a synthetic opioid often prescribed in Germany.

[Madlegs1 in reply to SueJohnson]

Thanks!

[mistaminista]

Sue, I can only confirm 2), 4) and 5).

In the beginning (in 2018) when it started in my legs, one neurologist did a LevoDopa test, which worked like a charm: All pain and discomfort vanished for 4-5 hours. He told me it's RLS then and when I stated that I don't meet all those RLS criteria (like "urge to move") he said, ok it's somehow "atypical" RLS then.

In contrast Dopamine agonists (I even tried that Neupro Patch) never worked as well: My symptoms calm down a bit, but I am getting another type of discomfort in my legs, which makes a longer use intolerable for me. The longest period of time I tried those was maybe one week. Interestingly Dipyridamole has exactly the same effect: Decrease of pain, but a new inner discomfort in my legs while being at rest. Maybe this is because dipyridamole follows the same pathways (adenosine) in the brain.

I tried many diets in the past years, but nothing seems to work, since all symptoms never changed in their intensity - which is why I skipped the idea of keeping a diary.

Tilidin never felt like the best solution, I still can feel the painful sensations, even if I take a higher dose.

[SueJohnson]

It sounds like peripheral neuropathy.

[mistaminista]

I don’t think it’s a neuropathy, neurologists ruled that out and why would Restex (Levodopa+Beserazid) help then?

Is there a opioid which you would recommend for RLS (or maybe RLS like symptoms)? Many RLS sufferers seem to try different ones and are finally satisfied when using Buprenorphine, or is it not that easy to say?

Alternatively I am thinking about having a „ketamine therapy“ with maybe a chance of improvement of symptoms. It seems to help if you have chronic pain and as far as I know it is (completely or at least partially) covered by health insurace here.

[Deesee in reply to mistaminista]

If the urge to move goes away when you stand up, then you have RLS. That’s the prime identifying criteria. Having terrible cramps and burning isn’t RLS, unless they go away when you stand up. I have neuropathy and sometimes have burning in my feet, but that’s not RLS. I wish you good luck with the finding the correct diagnosis.

[Munroist]

It doesn’t sound like typical RLS, no. Typical RLS tends to be worse in the evening and at night but many people are free of symptoms during the day, the exception being those who are augmenting on dopamine agonists. Again normal RLS is mainly or exclusively in the legs, unless you are augmenting when it can affect other parts of the body e.g. arms and upper body. Dopamine Agonists will normally bring instant relief so that again is different. Finally you don’t have the irresistible urge to move. It’s difficult to describe but you get a feeling as if you have been sitting too long in one position and your legs are stiff which just grows and grows until it’s unbearable and you have to move. For some people this is also painful or irritating. So it doesn’t sound like you have normal RLS, as you don’t meet several important criteria.

[Munroist]

Having looked through your post again, it feels like you may be suffering from augmentation from taking Levodopa, possibly in increasing amounts. I'm speculating here because it's normally dopamine agonists which lead to augmentation, and I don't know whether the same mechanism would apply to dopaminergic drugs. However the increased prevalence of your symptoms both through the day and across more parts of the body sounds little like augmentation. I see you stopped taking Restex in 2023 which is quite recent. Did you notice any changes as a result?

To answer another of your questions, for the worst case of refractory RLS when your dopamine receptors have been damaged by extended use of dopamine agonists Buprenorphine is usually the best option. Not everyone benefits in the same way but of all the opioid medications it seems to be the best. In the UK and US it's quite hard to get it prescribed as Doctors are vary conscious of opiod addiction and overprescription after scandals in the US.

Having said all that it still doesn't meet the normal criteria for RLS as we have discussed so it would be wise to be open to other possibilities as well e.g. fibromyalgia, neuropathy etc.

[mistaminista]

Ok, but aren't there a few people here, which mentioned, that they have RLS in their arms or even hands and feet for years or even since their childhood? That doesn't sound like augmentation.

What you describe as urge to move, is something which maybe fits to what I get when taking dopamine agonists (and dipyridamole), so for me they are leading to that symptom and not the opposite. But as I mentioned LevoDopa really helps me, the painful sensations vanish for some hours, even if I take a very small dose. Unfortunately I would have to take it the whole day and if I stop doing that, my sensations get much worse than before and even Gabapentine/Pregabaline doesn't help then anymore, which is why LevoDopa is definately not useful as a longterm treatment. What I've seen here, it's probably the same for people with "normal" RLS.

I understand, that my symptoms are quite uncommon, that is why I am feeling totally left alone with it

[mistaminista]

PS. @Munroist: I stopped taking Restex in 02/2023, so unfortunately too much time for hoping that it's augmentaton. Stopping dipyridamole was only some days ago, so at least there I can have some luck. But as far as I know my symptoms it has always been a "one way street"...

[Pickyourpoison]

RLS can hit anywhere I know people that have had it in their hips. Sometimes it moves from my legs to my wrists. I have a miracle doctor in California. I have tried all of the dopamine agonists and they work at first and then turn on you and make your RLS worse than ever. I have eliminated everything from my diet and tried iron and magnesium and supplements and exercise for 25 years I have struggled with this. The only thing I have ever had work is methadone. It is a miracle they give you a tiny amount 5mg- and it has now saved my life for years. It can be a pain to get but it will save you. I’ve been on the same tiny amount for half a decade. Now I don’t ever get restless legs anymore unless I don’t take one tiny pill a night. The dopamine agonist caused me to have restless legs during the daytime as well. After that finally flushed out of my system (takes 20+ days) I would only get them in the evening which the methadone takes care of. Happy to give you my doctor, but it is in California. I heard that they’ve been using this in England for decades. I wish you peace and I hope you can make this stop because there is nothing worse and I wouldn’t wish it on my worst enemy.

[SueJohnson in reply to Pickyourpoison]

I bet your doctor is Dr Buchfuhrer.

[Pickyourpoison in reply to SueJohnson]

🤣🤣🤣 nice!!! he literally saved my life. I had tried EVERYTHING mainstream, holistic, eastern and every type of dietary change. You lose the will to live when you literally can’t sleep - people who haven’t been there cannot comprehend. I actually don’t want to take ANY medications, especially not an opioid but sometimes there are no other options. Hope your life is well and your legs are still as well!! 😘

[SueJohnson in reply to Pickyourpoison]

Everyone on this forum knows Dr. B. He's generous is answering questions sent to him plus he's one of the authors of the Mayo Clinic Updated Algorithm n RLS which is the bible on RLS which we all advise anyone new to read and show their ignorant doctors.

[Bantamdyno]

Sounds like peripheral neuropathy to me ,Could be b12 deficiency

[mistaminista in reply to Bantamdyno]

I have made huge blood tests over the years and everything was fine (Iron, B vitamins, Vitamin D, etc.), there is maybe a histamine intolerance, but avoiding histamines did not help. Despite that I have a herniated disc in my cervical spine since I was 17, but two MRTs showed no nerve problems and it would be a bit unusual that it took another 17 years to lead to such symptoms I guess.

[mistaminista]

Both neurologists ruled out neuropathy, because of their tests and because I get a relief from dopamine.

From the pro/con list it is maybe 60% RLS ??

Pro:

- RLS criteria 2), 4) and 5) fit

- Dopamine test positive

Con:

- RLS criteria 1) and 3) don't fit (ok, 3 maybe a little bit??)

- Sudden onset when I was 34, sudden worsening with 39 and 40

- No RLS family history

- Sensations often become more painful than "discomfortable"

- No leg movement at all (same when sleeping, I sleep like a rock and only wake up when it's getting to painful)

- Symptoms 24/7 since their beginning 6 years ago