Update - question about DA'S

[Linksbarby]

Hello everyone,

this is my second post. I've had a very disappointing experience with my second GP which basically toldthat it's all in my head and also told me not to "think about it". I insisted for a referal to a neurologist and will be going asap.

In the meantime, I wanted to ask 3 questions to you lovely expert people:

- Does anyone's RLS mainly manifest as an itch everywhere (I have it in my legs, in my eyes, in my bum, everywhere)? I also have the "need to move the legs" which kind of co-occurs with the itch but its much less frequent. Either way it's living hell

- As I've written previously this is my 3rd flare of RLS. The first two were much milder and shorter duration-wise. I remember feeling mostly the "need to move legs" and less of the itch. It also only happened in the evening and now it's a all-day-long process that gets worse in the evening.

The itch was also mostly on my legs even if not exclusively. I've heard about instant augmentation and wonder if the 2 pills of Pramipexol I took (1 in May and 1 in January) could have caused it to spread to my arms and to begin earlier in the day. I am not taking it anymore but I wonder if that could be the case or if I just have an itchy/all day-long-RLS

- If it is so, is the damage done by DA's permanent?

I'm so confused and sad, I just want some peace.

Thank you.

[Joolsg]

2 pills of Pramipexole will NOT cause permanent damage. So do not worry.And Shame on your doctor suggesting your symptoms are psychological/in your head.

No wonder we have zero respect for doctors on this forum.

RLS can manifest anywhere in the body. I recently posted about a case of restless abdomen.

As your Father also has PLMD - your RLS is likely to be hereditary/primary RLS.

Did you start iron supplements?

worldsleepday.org/italy-202...

As you are in Italy, you will need to find a good Italian doctor who will prescribe an iron infusion, if necessary, and who will prescribe pregabalin/gabapentin to control your symptoms.

Contact RLS Italia and, hopefully, they will recommend a knowledgeable doctor near you.

linkedin.com/in/rls-italia-...

[Linksbarby in reply to Joolsg]

I began iron supplements immediately after your advice (18/01) day yes-day-no with vitamine-C and so forth but I haven't yet seen any differences. I am greatly hoping it will help. I am also keeping a symptom diary

So other people also have more "itch" (it's a real itch like if you get a bug bite) than actual restless limbs? It's so strange. And all day-long also?

I've read that pregabalin/gabapentin work very well but I wonder if I take them during the day if I'll manage to stay awake. Well, in due time I will find out.

I have found a neurologist who is 60yo and seems to be specialised in RLS. I was thinking of contacting her via email to know if she is informed on the updated procedures for RLS. I know this seems agist but I am very scared of finding someone else who just tells me that it's all in my head or to take DA's.

I will absolutely contact RLS Italia in hopes that they can refer me to someone who is updated, thank you very much!

[ziggypiggy in reply to Linksbarby]

The itch might be something else but it could be related to RLS. We are learning new things about it all the time.

[SueJohnson in reply to Linksbarby]

I have the names of doctors in Messina ,Troina and Milan. If you tell me which is closest I can give you their names.

What is the name of the one you found?

The pregabalin is more likely to make you sleepy. I take gabapentin including one in the morning and don't find it makes me sleepy.

Have you tried a non-sedating antihistamine like Claritin (loratadine, Alavert, Loradamed, Clarityn), zyrtec (Cetirizine), or allegra (Fexofenadine, Telfast) or prescription clarinex(Desloratadine) for your itch? Zytec is more likely to make you drowsy. Or you could try a non-sedating antihistamine cream although with it all over that would be harder.

What do you mean by iron supplements (18/01) day yes-day-no

[Linksbarby in reply to SueJohnson]

Milan would be the closest. I have Maria Pia Pasolini. I am taking zyrtec but the itch is constant. Also it gets much worse in the evening.I take the supplements every other day with an orange.

Again, thank you for the help and reassurance.

[SueJohnson in reply to Linksbarby]

Maria Paola Mogavero - neurologist - Vita-Salute San Raffaele University in Milan.

I think she is fine as she attended the 2024 meeting of IRLSSG where a number of RLS experts spoke. And she certainly knows a lot about RLS and has published a number of articles on them However she has been one of the authors of several papers on the use of DAs. So you would need to insist that you have been there, done that and want her to follow the AASM Guidelines at jcsm.aasm.org/doi/pdf/10.56... which she should be familiar with that does not recommend DAs. Also be aware that the Neupro (rotigotine) patch is also a DA.

If you see her let me know how it goes.

[Linksbarby in reply to SueJohnson]

Again,thank you!

[Joolsg in reply to Linksbarby]

pmc.ncbi.nlm.nih.gov/articl...

Interesting study on the link between RLS and urticaria.

And many people describe their RLS as 'itching'.

But usually RLS follows the dopamine cycle so the symptoms are worse in the evening and night.

But definitely see an Italian specialist.

But make it clear you refuse to take dopamine agonists.

[Linksbarby in reply to Joolsg]

Mine are worse in the evening but also present during the day. Thanks, again ☺️

[2islandboy in reply to Linksbarby]

I also get "the itch". Then I know that I'm in trouble. RL always follows.

[ChrisColumbus]

I have itches unrelated to RLS: mine seem generally to be linked to various irritants/allergies. Even sitting on the wrong upholstery fabric can do it.

We just have to remember not to tackle such itches with sedating anti-histamines: cetirizine and loratadine can be helpful and are RLS safe.

[Linksbarby]

I am taking cetirizine to no avail. Im postive its related to RLS since it gets much worse in the evening. Its a Nightmare

[ChrisColumbus in reply to Linksbarby]

If this is constant perhaps it IS RLS linked and hopefully a gabapentinoid will help.

Mine does get worse in the evening too - I find that's true for most afflictions - but mine is periodic rather than regular. It seems to be related to various allergies - some fabrics (particularly wool based), use of biological washing liquids/powders, some cleaning materials or polishes, some anti-perspirants, being too warm...

SueJohnson mentioned a couple of other anti-histamines in her replies which might be worth trying.

Best wishes

[Typicallygaslit in reply to Linksbarby]

See my comment below about antihistamines. Cetrizine drives me up the walls!

[Gmc54]

itching definitely sets my rls off. If I get an itch it is immediately followed by rls, but sometimes rls just starts with no itching. I thought the itching was just because the skin on my legs is getting dryer now I am getting older. It definitely helps to cream them with a rich body cream.

[Delilah162]

Hi,First of all I'm so jealous you are in Italy 🇮🇹 it's my favourite country. Visiting again in April.

I have plmd and rls both treated with opioids now.

I too have terrible itching mostly at night I itch to the point I wake up with scabbed scratches and bleeding.

It's not the medication as I was doing it before I started on the opioids.

Dr said it could be peri menopause but I'm not sure. I do think it's separate from the plmd and rls though.

I really hope you get the help you need. 😊

[Linksbarby in reply to Delilah162]

Hello!I also woke up with scratches a few times, it really sucks 😞 do the opiods not help with the itch? I really wonder if it's related!

Im so sorry to hear you are going through this aswell.

I wasn't born in Italy so I appreciate it even more ☺️ it's a lovely place

[Delilah162]

No the opiod only helps with the movements. Some say the opiod can cause the itching but not in my case as had it before.I itch everywhere! Some nights are worse than others.

It's the best! Roll on April for me. 😊

[GoForward]

Hello Linksbarby. Very interested to hear about your periods of itching. Has happened to me too for many years. An itch on one of my legs often occurs just before the RLS spasms begin. Then that itch stops. However, once the spasms have set in, I get an extremely itchy scalp which can last on and off until I get the spasms under control. I am positive that the itching is RLS related and nothing to do with any medications I take (Suboxone now, while weaning off Pramipexole). Wishing you all the best!

[Bantamdyno]

Have you Googled pain points for fibromyalgia.

[Linksbarby in reply to Bantamdyno]

Do you think it could be related?

[Bantamdyno in reply to Linksbarby]

So have you not googled yet.

[Linksbarby in reply to Bantamdyno]

I did but dont understand the link to my symptoms

[Typicallygaslit]

I occasionally have trouble with itching but it’s usually DUE to antihistamines, go figure. All antihistaminic drugs increase my RLS. So I’ve begun to think it’s a manifestation of RLS. I even get a weird restlessness in my vagina sometimes in the evenings, it can certainly be anywhere. I would quit Zyrtec first of all.

[Linksbarby]

Ive Just began taking zyrtec so Im pretty Sure its not that, its been only 3 days since ive taken it 😞