Hello RLS forum. I’m new here. I’m already learning a lot from reading your posts and responses. I could quickly tell that it is mostly women on this forum. It is a kinder and gentler place than the Parkinson’s forum with predominately older men. What a relief! I have anxiety which is greatly worsened by “challenging” interactions. Thank you for this supportive and informative forum!
At the risk of oversharing, I will explain my situation. I am a 47 year old woman who was diagnosed with Parkinson’s when I was 45. I was prescribed Azilect (dopamine agonist) which I’ve been on since. My doctor said that the effectiveness of Azilect was a confirmation of Parkinson’s and he therefore did not pressure me to get a DAT scan (brain scan) to further confirm my PD diagnosis.
But now I have developed RLS in addition to very mild PD. My primary PD symptom is internal tremors which can get quite bad especially at night.
I feel strongly that I need to get off of Azilect. I’m interested in taking Mucuna Pruriens instead of another pharmaceutical if it can be effective.
Additionally I have been on a very high dose of the antihistamine Ambroxol. It is being trialed for PD which is why I have been taking it. But I learned that antihistamines can worsen RLS?
I’m so sad to be facing this particularly at such a young age. Thank you to anyone who has read all of this! And thank you for this forum!
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Little_apple
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Welcome Little Apple. RLS affects more women than men, so you're probably correct that there are more women on this forum.However, luckily, most of the men on here are great as well!
I'm sorry to hear of your diagnosis.
I don't want to offend, but I notice your diagnosis of PD was on the basis of clinical presentation and the effectiveness of azilect.
I am just wondering whether your 'internal tremors' at night are actually RLS and that it is now getting worse because of the high doses of azilect causing increase in severity ( augmentation)? How would you describe the symptoms that led you to visit your doctor initially? What did the PD neurologist say?
Taking azilect would also instantly stop RLS. However, after 2 years, it would then worsen the RLS due to augmentation.
The fact you say the internal tremors are worse at night is a red flag for me.
RLS can start anywhere in the body- not just the legs. I often get internal tremors in my chest area.
I would suggest you consider a second opinion and perhaps ask for the brain scan to confirm it definitely is PD.
If it's an incorrect diagnosis, and the internal tremors were RLS, you can resolve them by getting off azilect very, very slowly with the help of an opioid.
You would then follow the Mayo clinic guidelines to find a solution to the RLS - raising serum ferritin, avoiding exacerbating meds etc.
If the second opinion confirms PD, you will have to discuss a suitable PD med that doesn't worsen RLS. It can be difficult.
The anti histamine you are on is not a sedating anti histamine, so shouldn't worsen the RLS.
I really do recommend getting a second opinion on this.
Thank you for your thoughtful and helpful response. I was not aware that internal tremors are associated with RLS as well.
I have no doubt at all that I have PD because although very mild, my list of symptoms is extremely long and my Dad has PD. Examples: loss of arm swing, weakness on one side and propensity to drag my right foot (this is augmented via an intense exercise regimen) sore shoulder for years, peripheral neuropathy and the most obvious indicator of PD, external tremor. My external tremor comes and goes and is subtle but twitching pinkie, index finger and thumb for years is indicative of PD. It’s the RLS and internal tremor that make life difficult.
I understand. As there's a family history of PD, it does seem the dx is correct.I would continue with the anti histamine as it shouldn't worsen the RLS ( it's a non sedating type).
Prof. Chaudhuri at King's in London specialises in PD AND RLS and his clinic may be able to help on suitable PD meds that do not worsen RLS.
It's a very difficult balancing act. To treat the PD whilst not worsening the RLS.
Internal tremors are the same thing as interior vibrations which I have and have nothing to do with RLS. No one including yourself can feel them by putting a hand on your skin. Only you can feel them. They are common in Parkinson's.
Sue, your info led me down a trail of good information and I now am fairly certain that I was wrong. MAOB inhibitors like Azilect should be okay because they are not antagonizing the dopamine receptors and essentially wearing them out.
I have read elsewhere on functional medicine sites, etc that Mucuna Pruriens can help with RLS. In PD, MP has close to no downsides. And Magnesium Malate is the form of magnesium that enables the iron to get in the the brain.
Is that discussed on this forum? Do you or members use Mucuna Pruriens ?
Mucuna Pruriens can help with RLS because it is the best known source of levodopa. But that can lead to augmentation. Magnesium needs to be taken 2 hours apart from iron or it decreases the absorption of iron.
I don't have one. I've apologised to Little _apple for suggesting the azilect might be worsening the RLS.It clearly works in a different way to levopoda and has been used without levopoda for little _Apple.
actually, I think Azilect does worsen RLS. It was that hypothesis that brought me here. Then Sue and other reading enabled my understanding that it is dopamine agonists that cause augmentation. Well, Azilect increases dopamine in the brain but by means of inhibiting MAOB whereas levodopa increases dopamine be a different means. Both though increase the dopamine and I believe that is what causes the RLS augmentation (worsening).
I had been looking in to stopping Azilect to replace with Mucuna Pruriens but now I gather that will not help and could worsen.
I’m so distraught that I have both RLS and PD. I’m 47. My life trajectory is looking grim to me at the moment.
I don’t know what to do.
The typically prescribed GABAPENTIN causes cognitive deficits. Since I already have PD, I’m scared to risk that.
Just a few years ago I did not know how blissfully unaware I was of what was brewing.
I understand, but there are other treatments for RLS.As your RLS is probably linked to the PD, it is unlikely that raising serum ferritin will improve the RLS.
You could try taking ferrous bisglycinate at night to see if it helps, but I suspect raising ferritin won't improve the RLS.
I can understand your concerns about gabapentin/pregabalin, but the doses to help RLS should not impair cognition too much. They are often used for nerve pain in MS and neurological diseases.
A better option for you might be a low dose opioid. I know that may be difficult in the USA, but there are RLS centres of excellence where the doctors will prescribe them.
Tramadol, codeine, Oxycontin, Buprenorphine and methadone all work well for RLS at low dose.
The Mayo Clinic Algorithm sets out the treatment options and average doses.
You stated that you get internal tremors in your chest. I have seen nowhere that that is associated with RLS. Do you know if others with RLS have shared having internal tremors in the chest or other areas? Internal tremors are common in PD and MS. I have been hesitant to share this but I think it’s the right thing to do. I had RLS first when I was 35. I managed to get it to go away. Then at 40 I developed internal chest tremors. My various other symptoms grew and I was diagnosed with PD when I was 45. Now, at 47 my RLS is back. I’m sharing because I have seen no evidence of internal chest tremors being a symptom of RLS. It is neurological though, just not RLS.
You are no doubt correct. However, RLS can present in the legs, arms and torso. It is more common in legs but many people do experience it elsewhere.rls-uk.org/symptoms-diagnosis
My chest 'tremors' are probably linked to MS or neuropathy more than RLS.
I am aware that I have implied Azilect has caused the RLS and I apologise for that. It would seem you have both PD and RLS.
I am unaware of any scientific cases linking the two.
It's now clear that you do have PD because of the family history.
It sounds like you’re genetically predisposed to RLS. That means there are ALOT of substances you cannot take that others can. At 35, or recently, were you taking melatonin, SSRIs, HRT, and I believe even substances like 5htp and tryptophan can make the “symptoms” of RLS worse. However, as you probably know, these substances do not down-regulate our already lousy D2 receptors as the DAs will. As a matter of fact, I read in the following article, as well as another one, that Azilect will “up-regulate” the D1/D2 receptors: pubmed.ncbi.nlm.nih.gov/261... Thus, it’s possible that this has contributed to your somewhat recent increased symptoms? It seems substances that might make RLS better in the long run can be quite painful in the short run. Plus, once you stop taking the substance, your up-regulated receptors will most likely crawl back to baseline.
Berberine allegedly will up-regulate the receptors as well (if you take a bioavailable form, otherwise it pretty much only works within the gut) and should only be taken in the morning. There is research underway right now on berberine and Parkinson’s. It’s hypothesized that berberine increases dopamine in the brain by stimulating certain dopamine producing gut bacteria. parkinsonsnewstoday.com/new... It may sound like Berberine is something you should take at night, but the one or two times I have mistakenly done so (I use a somewhat bioavailable form) it makes the RLS symptoms worse.
To answer one of your questions, to the best of my recollection I haven't seen anyone mention Internal Chest Tremors on this forum over the last two or three years either as a symptom or in any other context. There are have been plenty of other upper body symptoms reported but these are mostly pain or restlessness or urge to move the upper limbs. I've also done a search of HealthUnlocked for "Internal Chest Tremor" limiting it to the RLS Forum and I only get two hits, one of which mentions "chest" in a different context and the other doesn't seem to have any mention so I'm not sure my search is correct. Maybe Kaarina can advise?
I have RLS and have occasional internal tremors…though I had no idea there was a word for it (I’d not heard of “internal tremors” and honestly just thought it was part of my overall brain malfunction which seems to be the root of all my random neurological abnormalities). I never mentioned the internal tremors to my neurologist, but have been told I don’t have MS. Maybe others also experience this and just never mentioned it?
Interior tremors is the same thing as interior vibrations which I have. It has nothing to do with RLS. It is vibrations that cannot be felt by feeling the skin.
yup. I’m just happy to learn other people experience it too. Well, not happy, but I’m glad it’s a thing and not just my own private brain malfunctioning all by itself. Which is what I thought before I read Little Apple’s post and saw someone put words or a title to it. I’m also now realizing it’s something I should mention to my neurologist. When I thought it was imaginary I saw no reason to talk about it…to anyone.
I have done a lot of research. One possible cause is low B12, but I tried that with no help. You might want to try it. I have it mainly when I lie down, like when trying to sleep, but I have gotten used to it and it doesn't stop me from sleeping most of the time. But it is still no fun.
Thank you for the information. I do take a b complex supplement, which may be why the internal tremors are fairly infrequent. Did you ever learn the cause of yours?
Welcome to the community, Little Apple. I’m sorry you have symptoms that led you here, but hopefully you’ll find good advice and you’ll definitely find a lot of support. The people in this group are amazing. I honestly think this forum may have saved my life. I hope they/we can help you, too!
Oh, and don’t be afraid trialing gabapentin. Tons of people in this group use it (myself included) and in my line of work-I basically review medical records all day-I see is prescribed for basically every type of neurological abnormality, regardless of cause. If you experience side effects, you can stop. But it’s worth a try!
when I first read your response I got so emotional. I’m so scared of further damaging my brain but I need relief. I did not know Gabapentin was so common.
When I had severe RLS - I had no idea of just what I had. I had little sleep and during the day it was in my arms and legs. My hand would shake like a tremor. I was convinced I had PD. After a couple of months I self diagnosed the RLS (docs gave me muscle relaxants, no help). It was the worst period of my life.
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