Covid restless leg

[Ciciskinner]

ever since I was diagnosed with Covid 13 days ago I have been in extreme pain and restless leg so bad that I can’t sleep I can’t walk nothing helps I’m in constant pain I haven’t even been able to see my child cause I’m so miserable doctors have ran ever test n everything comes back normal they have given me galepatin buts it’s not helping at all what can I do ?

[ChrisColumbus]

I hope that - while awful - this may be a temporary exacerbation caused by hyperinflammation triggered by Covid. How long have you been on gabapentin, how much are you taking?

[Ciciskinner in reply to ChrisColumbus]

Thank you for replying ! I’m hoping too but it’s so severe it’s insane ! I’ve been on 100 mg gabapentin for 4 days 3 times daily but I’ve been taking 2 3 times a day

[Munroist in reply to Ciciskinner]

That looks like 300mg Gabapentin a day which is not very much. For long term treatment of RLS the upper limit is normally something like 1800mg so you might benefit from an increase.

[Ciciskinner in reply to ChrisColumbus]

also could I still have that even though through all testing they don’t see inflammation?

[Eryl in reply to ChrisColumbus]

Yes, the main cause of RLS is systemic inflammation and having inflammation caused by covid as well it likely to make rls worse. Systemic inflammation is most often caused by diet, namely processed food high in refined carbohydrates, refined seed oils and artificial preservatives. It's possible to reduce systemic inflammation by avoiding processed food.

[BoldMove]

I am so sorry that your legs reacted to COVID. For 1 week of COVID I had no RLS. It didn't start up again until I was on the mend. I'm making up for it now.. It bothers me if I'm trying to watch TV or work at the computer. Randomly, any time I sit or sleep, and then it's gone. for a bit to return a couple of yours later.

I hope you recover soon.

[Ciciskinner in reply to BoldMove]

So you had it before n after Covid just not during ?

[BoldMove in reply to Ciciskinner]

Before, after and the end part of COVID. I had no RLS for approximately the 1st 6 days of COVID before it started ramping up.

[Ciciskinner in reply to BoldMove]

Oh ok thank u I hope mine relieves soon ! What do do you do to help it ?

[BoldMove in reply to Ciciskinner]

walk. I leave some small mindless chores to do in low light during the night by deducting an hour from the day and adding it to the "sleep" column. When legs start up and do picking up, hanging up and general clean up.

Since I can't stop it, I needed to work it into my lifestyle and adapt.

[Bulldogmom2003]

you sound like me. I was diagnosed with covid in 2021. Since then I have bouts of RLS. The last attack was when I had an upper chest infection a few months ago. Like you, I tried everything! Doctor finally gave me gabapentin. It took literally almost a month of twitching almost nightly for over a month and a half. It takes a while for gabapentin to help. I would take 4hrs before bed and hope for the best. Relief came after taking medication consistently increasing the dose slowly for weeks. I also walked daily to tire out. Nights were nightmares. My doctor refused to prescribe opiates. I discovered kratom on my own and use it as needed. Opiates are a great way treat RLS but doctors are against it. Every time I now am sick be it with covid or cold, whatever it triggers my RLS. Ask your doctor if they will prescribe an opiate for you. If not, do some research on kratom. There are several online shops that sell it. Don’t buy from smoke shops. Hopefully it’s legal in your state. How much gabapentin are you on? It may need to be increased. Also do you take any other meds?

[Ciciskinner in reply to Bulldogmom2003]

So did it stop once your Covid was over ? Or now it’s constant problem😭 I can’t live like this ! And it’s 100mg but I’ve been taking 2

[Bulldogmom2003 in reply to Ciciskinner]

It’s been happening anytime I am sick, stressed or have insomnia. Usually it only lasts a few days or a night but the last bout was my longest period of RLS. It’s so frustrating and tough on your emotional & physical well-being. I think you should speak to your doctor about increasing gabapentin. I found relief around 400mg nightly. He slowly increased my dosage until I found relief. Also, look into that kratom stuff. It’s almost instant relief. I take it as needed.

[Ciciskinner in reply to Bulldogmom2003]

Oh okay so it’s not a constant ? That would be a relief to know at least ! And okay ! What does it come in ? A pill or like what is it ?

[Ciciskinner in reply to Bulldogmom2003]

is it this hun?

Kratom?

[Ciciskinner in reply to Bulldogmom2003]

I was really praying for this to be temporary

[Bailey13]

hi, i have fibro and have had covid 4 times now. Each time its really affected my legs. The last time at xmas it affected my right knee so bad i couldnt walk and couldnt get up stairs. It was agony. It finally went about a month after i was clear of covid. Doctor said it was caused by covid . Hope you start to feel better soon x

[Joolsg]

Are you sure it's RLS? Constant pain sounds more like fibromyalgia, common after Covid infection. It's highly unlikely that you suddenly developed RLS aged 24.Covid is a vascular disease and causes micro blood clots. These limit oxygen absorption and can lead to POTS and pain and extreme fatigue.

Read the diagnostic criteria for RLS.

rls-uk.org/symptoms-diagnosis

The URGE to move is key.

RLS follows the dopamine cycle, so is worse in early evening and at night, but tends to ease off in early mornings and early afternoon.

Walking will relieve the RLS.

Gabapentin will treat Covid pain/fibromyalgia, but takes 3 weeks to be fully effective and the dose is higher.

I suggest you find a doctor familiar with treating Long Covid. There aren't many here in the UK and I doubt there are many in the USA.

Medical cannabis is helpful for fibromyalgia, so if it's legal in your state, you could try that.

Some treat Long Covid with Nattokinase, a natural blood thinner. And non sedating anti histamines.

See if you can find any long covid support groups in your area or on FB. They may know a local doctor who is trying to help.

[Ciciskinner in reply to Joolsg]

I’m sure I have to move it n I keep twitching n all there’s no relief for 10 days im scared nothing helping tried all that

[Joolsg in reply to Ciciskinner]

10 days is a very short time. Covid is a very serious infection and your body can take months to recover.Rest as much as you can after any covid infection and do not exercise for weeks. That can trigger ME/CFS.

You can start gentle exercise when you feel stronger.

Drink lots of fluid and eat a healthy diet.

Covid can leave viral reservoirs throughout the body, particularly in the gut.

Take a good probiotic, like VSL or Symprove.

I just do not think it's RLS. Constant 24/7 sudden onset pain does not match the diagnostic criteria.

If you have previously experienced RLS, Covid will often worsen the RLS.

Fibromyalgia IS common after Covid infection.

[Ciciskinner in reply to Joolsg]

Thanks just feeling very helpless I can’t sleep 😭😭 it’s so bad n I would love to just get some rest

[Pepper163]

Discuss the medication ROPINEROL OR Requip for the RLS with your PCPGood luck

[SueJohnson in reply to Pepper163]

Since you augmented on ropinirole, why in the world would you suggest it,

[SueJohnson]

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.

Although covid and inflammation can make RLS worse one normally has RLS before getting covid as opposed to covid causing it. Although if you were predisposed towards RLS, covid could trigger it. Do you meet the above conditions? If so I can give you some advice.

[Ciciskinner in reply to SueJohnson]

Yes I do 😭😭😭

[SueJohnson in reply to Ciciskinner]

I guess you were predisposed to it then. As others have said 4 days is a short time and 300 mg is a small dose. It takes 3 weeks for it to reach it's full effect and the usual effective dose is 1200 to 1800 mg. according to the Mayo Clinic Updated Algorithm in RLS. Check it out at Https://mayoclinicproceedings.org/a... and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it.

But what you need is something to help now. Ask your doctor for a low dose opioid to take temporarily. Emphasize temporary so s/he will be more likely to prescribe it. You can print out the section of the Mayo algorithm on opioids to show her/him.

Then you need to have your ferritin checked? This is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Ciciskinner in reply to SueJohnson]

All of my ferritin levels n iron are normal no idea why I’m having such an issue 😭 I have absolutely no relief I’ve literally tried everything I’m on the brink of suicidal if I’m being honest this isn’t something I can live with

[SueJohnson in reply to Ciciskinner]

Do you know what your ferritin is? Doctors will tell you your ferritin is normal but what what is normal for others is not normal for those of us with RLS.

You won't have to live with it. It may take awhile but you will make it and it is very likely that things will get better when the covid goes away.

Meanwhile we are all here for you.

[Ciciskinner in reply to SueJohnson]

It’s high right now like a 204 I think

[SueJohnson]

What state do you live in?

[Ciciskinner in reply to SueJohnson]

Maryland

[SueJohnson in reply to Ciciskinner]

Then you are in luck. Johns Hopkins is one of only 9 Quality Care Centers in the US. They are the best in the US. I don't know how soon you can get an appointment but they will the very best.

[Ciciskinner in reply to SueJohnson]

Yea nobody is taking me because of my insurance

[SueJohnson in reply to Ciciskinner]

Have you checked Johns Hopkins?

[Ciciskinner in reply to SueJohnson]

Yes

[SueJohnson in reply to Ciciskinner]

What is your insurance?

[SueJohnson in reply to Ciciskinner]

Marijuana is legal in Maryland. You might want to try that.

[Ciciskinner in reply to SueJohnson]

I have thanks but nothing is working idk what to do

[SueJohnson in reply to Ciciskinner]

The following doctor has been recommended on the Restless Legs Foundation by someone who uses her. Helene A. Emsellem Chevy Chase [phone]. She is a neurologist. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable. They still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.

[RiversofLondon]

Hello, I'm really sorry to hear of this - I have Long Covid and my RLS started a couple of months in and very severely, like yourself. I very much much hope your Covid is short, rather than long!

I think the advice to double check whether this is RLS or Fibromyalgia is very good as they can often get mixed up, and both have been found in relation to Covid. From what I remember, Fibromyalgia involves more pain, which you've mentioned.

I did take Gabapentin which, at the right dosage, did ease symptoms very considerably. However, I had to come off it as I was experience severe side effects (I've found that Long Covid has, in general, heightened my sensitivity to medication considerably).

To be honest, in the acute phase, sleeping medication (zopiclone) was the most useful thing I was given - it knocked me out so I could sleep and rest despite the legs. By the time I came off the Gabapentin, the legs were much improved, although they are not yet completely resolved.

Its hard to tell whether this improvement happened due to the course of time, the Gabapentin or the fact that I brought my iron levels up considerably AND started taking magnesium three times a day. In addition, I also started taking Setraline for another reason - this is an anti-depressant, but it works on neutral and nervous pathways and some early studies have shown that it has improved nerve pain and issues for Long Covid sufferers.

Its probably a combination of all of these factors. Quite aside from the impact of inflammation that a number of people have mentioned, Covid really can do a number on the body's nervous system - so do bear that in mind.

Other affordable things that have helped distract me/manage symptoms a bit:

- compression socks and elevating my feet

- Tens devices...you stick them on you with little gel pads and they send little buzzing pulses (boots.com/boots-tens-digita...

- Therapulse - a little massage bar that you can strap on: therapulse.co.uk

- hot baths

While none of these completely resolved the issue for me, I find they take the maddening edge off!

Really hope some of this is useful!