Odd symptom!

[restlessinlondon]

Hi, I'm wondering if anyone on this amazing site can let me know if they have had anything similar. Quick background first, I've had RLS for about 45 years, both arms and legs and have been on Ropinerole for 18 months.

Two nights ago I was woken up by what I thought was an insect biting my lower calf. I rubbed it, couldn't see anything, but the sensation of being bitten carried on for about three hours. It suddenly dawned on me that the 'biting' seemed to be at regular intervals so I timed it (as you do at three in the morning) and it seemed to happen more or less every 30 seconds. I know that PLMD can be very regular and wondered if this was the cause.

Any comments gratefully received - I'm just hoping it won't happen again.

[Hidden]

That certainly is odd.

I couldn't say for certain what that is.

Here's some points that might help decide.

PLMD can either be PLMS, PLM when sleeping or PLMW, PLM when awake.

PLMS is quite common, PLMW isn't.

When somebody has PLMS they are most often not aware of it. They're asleep. It's usually their bed partner that tells them of it.

PLM is a periodic thing, which can occur regularly, e.g. about every 30 seconds. However strictly speaking PLM is limb movement and if no limb actually moves it can't be PLM.

As for the biting sensation, I've never had that sensation with either RLS or PLM.

I have had periodic stabbing pains, but I've always associated it with neuropathy, not RLS/PLM.

[Joolsg]

I get really painful stabbing in my toes and feet and the RLS usually starts soon after but I haven't experienced the biting sensation.On another issue, sounds like you're augmenting on Ropinirole. Read the pinned post section and consider reducing very slowly. Most people will eventually suffer augmentation- the longer you've been on Dopamine Agonists and the higher the dose (over 1mg) the higher the risk.

[Guitarpickin]

That sounds uncomfortable and I hope it doesn’t become a recurring sensation for you. I sometimes feel sudden, sharp sensations (generally in a foot or calf, but it can be elsewhere). I always assume I’m being bitten by something or stung by a scorpion because I live in a place where being bitten or stung is plausible. But my sensation may be similar to your bug bite or what others describe as stabbing. I too have described mine as a stabbing sensation as well. I think our brains try to process any painful sensation as quickly as possible so we first assume something that makes sense. But I have never had the recurrent pain/sensation at regular intervals that you describe. And certainly nothing that’s predictable or so long lasting. Please let us know if it happens again. I hope it doesn’t.

[sticksNstones in reply to Guitarpickin]

Where you given a medical reason for the biting or sting feeling?

[Guitarpickin in reply to sticksNstones]

Yes...apparently all my weird neurological issues (which are varied, and encompass my whole body) stem from spinal cord compression in the neck and thoracolumbar spine. It took a while to accept such a variety of head-to-toe symptoms could be caused by my spine, but I’m finally being persuaded. Do you happen to have any spine issues that you know of?

[sticksNstones in reply to Guitarpickin]

Yes unfortunately I was hurt by someone very close to me. I had to eventually have surgery on my L4, L5 and S1 for ruptured disc, the eventually unfortunately I have problem with my C4 & C5 from the same incident. I also now have the herniation disc disease and that is just concerning my spine.

I am still trying to get the proper diagnosis for my symptoms as my doctor that did my back surgery has moved out of the area and did not leave my file under the care of another neurologist. I'm having to start from scratch. I also have RLS and have the same symptoms that were introduced her.. Now I'm going to go Google the names you sent me...

Be well and safe

[Guitarpickin in reply to sticksNstones]

Oh my goodness. I am so sorry to hear what happened to you and that you continue to suffer physical complications from the injury. It definitely seems possible that your neurological issues (to include RLS) are from your spinal injury. We have similar diagnoses. Have you tried to locate the surgeon who operated on you? The data he/she has is invaluable for future care. Not to mention the personal expense and inconvenience of replicating MRIs and other studies and the loss of the exact information on the procedure(s) performed. My apologies if I’m confused or forgetful, but I don’t remember giving you any names to google, but hopefully someone else gave you suggestions that will help you. One of the best things about this forum are the ideas, knowledge born from experience, and commiseration. It gave me hope, which was probably the biggest help of all. Anyway, I’ll be thinking of you and hoping you are able to get your medical file. It must be out there and it belongs to you.

Best of luck. Wishing you well.

[sticksNstones in reply to Guitarpickin]

Thank you. By names I was meaning your diagnosis that you mentioned. I'm still trying to find it all.

I'm sorry for your health concerns as well.

My newest Symptom is they think I have the beginning stage of dementia. I don't believe it. I think it has something to do with my spine and or my anxiety disorder.

Be well stay safe.

[Guitarpickin in reply to sticksNstones]

Oh, my! I hope you don’t have new onset dementia on top of everything else. I do believe constant pain and the stress of your situation (loss of records and the personal trauma associated with your initial spinal injury) could potentially make your memory suffer and might mimic dementia. And memory loss is a very common component of anxiety and depression so once things are under control, maybe you’ll see improvement. I sure hope so. Googling random diagnoses in the hope you stumble upon your own really seems like a shot in the dark. It seems like you should be able to find your doctor, regardless of where (s)he moved unless they terminated their practice and tried to disappear or something. But if googling diagnoses is your best option, look into cervical myelopathy and lumbar myelopathy. My spinal problems have given me myelopathy, which has allegedly caused my various neurological symptoms. Anyway, hang in there and don’t give up the search for your former practitioner!

[sticksNstones]

I experience this and as well sometimes the size.of this feeling is larger. I'm only replying because I don't know what this is and would love to read the feedback.

[restlessinlondon]

Thank you so much for all your helpful replies. I haven't had these sensations since so I'm hoping it won't come back. I am thinking of coming off the Ropinirole soon!

[Sandramilnes]

I have the insect biting sensation just before my restlessness starts. It is usually in the crease between my leg and groin. Ive had RLS for 50 years and have it in my legs, arms, hands and feet. I'm being weened of Ropinerole and now oxycodone with naloxone. I couldnt tolerate gabapentin or pregablin. Since being on the Oxycodone my sleep has improved from 2 hours to 6 hours per night and I'm optimistic. Since my sleep has improved, my health has improved.