opinions rls

[Ciciskinner]

has anybody else had rls where it literally doesn’t stop not matter the time or day n you haven’t slept in 12 days and can’t do anything but cry because you’re miserable and want to die because you see no relief … I’m 24 with a 2 year old n I can’t even take care of him… all I can think about is all the thing I’m going to be missing in life because I literally can’t do anything there is no relief … plz give me some hope but I also don’t want to be lied too …

[Madlegs1]

You won't be lied to on this site.

What medications are you on? Or have been on?

Have you had a full iron blood panel test? What was the serum ferritin number?

Did this come on suddenly? What happened around that time?

Did you take up a new medication that might be causing your experience??

Antihistamines, antidepressants, statins, HRT meds. and some others can actually cause RLS.

Hoping to hear from you soon.

Keep strong- you will get through this..💚💚

[Ciciskinner in reply to Madlegs1]

My iri. Is fine my ferretin was a little high that’s it n gabapentin n Percocet

[Ciciskinner in reply to Madlegs1]

it came on with Covid n will not go away no matter what I do I’m trying literally everything all my levels are normal no sign of inflammation or anything I’m so lost no doctors understand and can help

[Elisse3 in reply to Ciciskinner]

Looking at the advice given you from your other posts have you increased your gabapentin as suggested.

[Ciciskinner in reply to Elisse3]

Yes it’s 300 mg 3 times a day right now haven’t upped it yet what do you suggest

[Elisse3 in reply to Ciciskinner]

You need to look at your posts which will tell you what was suggested to take.

[TheDoDahMan in reply to Ciciskinner]

I think 600mg x 3 is considered the safe upper limit of gabapentin for RLS symptoms. You appear to be at half that now.

[SueJohnson in reply to TheDoDahMan]

Actually you can take up to 3600 but dividing it into 600 mg 2 hours apart would be ridiculous. 1800 is really as much as one would want to take before switching to pregabalin.

[Ciciskinner in reply to SueJohnson]

They tried me on everything except pregabalin n nothing have relieves it even a little it’s 24/7 feeling . I can’t sleep or eat n now all they gave me was a sleeping pill which isn’t helping ANYTHING

[TheDoDahMan in reply to SueJohnson]

I understand better thanks to your comment.

[Ephemera]

I feel for you, my husband went that long with no sleep. Please listen to Sue, Jools and others on here then go to your GP with their advice. There is help,out there but we are all different so what works for one, does not always work for someone else. Trial and error is what we did. Good Luck.

[Joolsg]

I won't lie. That's why I've said several times that you don't meet the criteria for RLS.Even when I was going through severe augmentation and withdrawal, I didn't have RLS 24/7.

You seem to have a form of severe fibromyalgia as a result of Long Covid. Covid causes micro blood clots.

The gabapentin MIGHT help your pain, but there may be better treatments for fibromyalgia.

Have you tried medical cannabis yet?

Have you posted on the fibromyalgia site? Have you tried non sedating anti histamines and Nattokinase?

Low dose aspirin for a short time may also help. Or dipyradimole. It's a blood thinner that may solve the micro blood clots and pain.

If you can find a Long Covid Clinic or specialist doctor, you would get more answers.

But I don't think you have RLS.

[Ciciskinner in reply to Joolsg]

They aren’t finding any blood clots in my body

[Joolsg in reply to Ciciskinner]

kernls.com/projects/diagnos...

Detection needs very specific equipment. That is why you need to find a Long Covid specialist Clinic/Doctor near you.

Viruses trigger many diseases. Epstein Barr Virus ( glandular fever/mono) triggers ME/CFS and MS.

[Ciciskinner in reply to Joolsg]

They don’t have any Covid specialist near me 😭😭

[Ciciskinner in reply to Ciciskinner]

I have prescribed me temezapam n I still can’t sleep or get this feeling to go away

[Joolsg in reply to Ciciskinner]

Mistaminista has made an excellent suggestion.Ropinirole or Pramipexole are used as a diagnostic tool. You take a dose for 3 or 4 days at night. If it stops all your symptoms, you DO have RLS. So ask for 0.5mg of Ropinirole for 4 nights.

If the dose doesn't stop your symptoms you DO NOT have RLS. If it does, you have RLS.

Whether it works or not, stop taking it after 4 days. Ropinirole and Pramipexole are no longer used because they worsen RLS over time.

[Joolsg in reply to Ciciskinner]

Find a Facebook Help Group. Or join Twitter/X. Use the hashtag #LongCovid.You'll find thousands of people suffering similar pain to you.

They can guide you to the few doctors who are trying to find a solution.

Try cannabis, try low dose aspirin.

Ask your Doctor for a trial of dipyridamole. It's a blood thinner that is used for severe RLS and it is used 'off licence' for Covid micro clots.

RLS is like Long Covid. Doctors have no.idea how to help or what is really causing it.

Sadly, we have to research for ourselves, using any possible means.

[Amrob]

Why not try a sleep aid / sleeping tablet to help you get some sleep in the short term?

[Ciciskinner in reply to Amrob]

Tried that

[Glenr78]

Hi yeah im the same with a 5 year old girl mine started when I was 17 I'm now 46 still not been diagnosed so constantly in pain day in day out hope you get sorted

[Eryl]

Try avoiding refined sugar and bread which should reduce RLS, if you can avoid processed food and refined seed oils altogether it could eliminate rls completely.

[mistaminista]

I feel for you and want to tell you, that you are not alone with this. I have a 4 year old son and while he is getting more and more active I have less energy for him from day to day - that "missing his life" feeling is terrible. My advise is: Don't put all your energy in finding a solution/doctor. Better save sth. for him and don't give up hope.

From a medical point of view: Why don't you try a dopamine test (with levodopa or a dopamine agonist)? If that test is positive (you're getting a relief), there could at least be a relation to RLS and if not, it's quite sure that your symptoms have another cause.

How would you discribe that tingling and which of the 5 RLS diagnostic criteria fit to your symptoms?