Someone posted recently about whether Covid made RLS worse and I replied that in my case it hadn't.
However, I caught Covid for the second time within 3 weeks on 21 March and was extremely ill. Recent evidence is showing that the Omicron variant is mutating rapidly & people are catching it for the second or third time very quickly. Especially in large cities like London.
I had antivirals for the first infection and antibody infusion for the second Covid infection. I developed a secondary infection and am still on antibiotics and steroid nasal spray. I'm feeling a lot better.
My RLS went crazy during the second infection, presumably because of inflammation.
Be careful everyone- vaccinations and prior infection don't stop you catching Omicron. It's mild the first time but much more serious with second & subsequent infections.
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Joolsg
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Poor thing..... I have this thought in the back of my mind that steroids aggravate RLS...? I think the steroid drops I'm having post cataract operation maybe having an effect on me. Anyone else knows about this
The RLS flare up stopped when I started the antibiotics and steroid nasal spray so in my case, it was Covid virus that caused the problem. I do know that oral steroids can trigger RLS though.
So sorry to hear that but glad you are better. It was probably the BA2 variant which I understand is rapidly expanding and even more contagious. Here in US we can get a 2nd booster if 50 years old or older but it doesn't last as long as the 1st booster. So yesterday went to get our 2nd booster shots. We were at the front of the line and behind us were 2 women who were together. Of course they weren't wearing masks and they didn't always stay 6 feet away. When the person came up to us to check us in and confirm we were here for our vaccine shots, the 2 women came up right behind us and when asked said no she was here to have a test for covid. At which point the pharmacy person told her she wasn't even supposed to be in the store but to wait out in her car. Great huh? And I am 81 years old.
People are so self-centered and don't want to take responsibility for their own actions. I follow a group of old friends that I used to work with at a volunteer ambulance service when we were all in our teens and early 20's. One woman went on to be a nurse and a fire fighter and she married a fireman - both were well educated and worked in healthcare for more than 40 years but both felt that vaccinations were a choice and they chose not to be. Her husband got Covid in October and suffered terribly before dying. She still insists that people like me who advocate for vaccinating should be quiet and not share our viewpoint - how disappointing that she does not get the bigger picture here.
You really have been through the wringer haven't you Jools. So sorry to hear it but glad you're improved. I would have thought that having had Covid, any subsequent contraction of the virus would be milder...clearly not necessarily the case.
I'm really sorry to hear how unwell you've been Jools, but pleased you're on the mend. How are the legs now? Is the buprenorphine keeping the rls under control again?
One of the main issues in Covid is the inflammation it causes, especially in the cardiovascular system and the most frequent cause of RLS is also inflammation but mainly affecting the nerves. It is not beyond belieff that this inflammation is general throughot the body , so if your RLS got worse with Covid that inflammation is also the main cause of your RLS, and you only need to track down the cause of that inflammation or be more rigorous in eliminating the causes.
I know what the cause of my RLS is. I have Multiple Sclerosis so all my nerves in the CNS are destroyed by my own body.They've now confirmed that Epstein Barr Virus triggers MS
So we will see a Tsunami of neurological diseases in the next few years caused by the Covid virus.
There are already hundreds of thousands affected ( Long Covid).
It can't be fought by diet Eryl. Nor can Long Covid. However, there is a new report today that a transplant of immune cells from someone who has natural immunity to EBV has stopped MS progression.
As you know, I've followed extremely restricted diets for periods in excess of 12 months. None has made the slightest difference to my MS or my RLS.
You are extremely lucky that you have found the cause of your RLS but remember, what works for you will not work for everyone.
Oh jeez, I’m so sorry to hear about your additional suffering! Wishing you a speedy, 100% recovery from this dreadful disease. Your post reminded me that I need to sign up today for the recently approved 2nd booster here in the US.Stay well!
Good to hear that you are feeling much better. I hear from a lot of people (in my age group 70+) who caught Covid for the second and even third time. Some hardly notice it and some feel very down and extremely tired. All the best.
I had Covid in December 2020 before the vaccines were available and almost died on Christmas day. I was in ICU for 11 days on 80 liters of heated oxygen and heavy doses of steroids and then spent another week in a regular room trying to build up my lung capacity so I could walk 100 feet down the hall while maintaining my oxygen saturation levels. Three months later I was able to be rid of the oxygen at home and since then have progressively improved to the point I can now do mild to moderate hikes without fearing I will die enroute.
The past few months have shown an increase in breakthrough leg spasms that my Carbidopa and Mirapex cannot control. I have already experienced one round of overdosing on Mirapex and then 17 days of brutal withdrawal symptoms so have been so fearful of using too much of either drug and being in the same situation.
I went through several substandard neurologists within my health plan and finally switch to a woman in another health plan who I just loved and who seemed to really know her stuff. two weeks ago I called to make an appt. to see her only to learn she has no appointments for the next 6-8 months, including virtual visits. Her CRNP could only see me in 3 months and after several back and forth only messages they said that there is nothing more they can do for me because I have severe RLS due to Covid and they recommend I have a sleep study done and start using Methadone which they are not able to provide through their office.
So, now it appears my only recourse will be to begin using Methadone - fortunately my PCP said he is able to administer and monitor my usage. This is the day I have been dreading as I am only 66 and know I have many years of progression of this disease in my future.
I saw recently that my former health plan now has a Center of Excellence for RLS and then cringed when I saw that the doctor overseeing this Center is one of my former neurologists who steadily increased my Mirapex well past the recommended dosage to the point that I had to be taken off of it and suffered the consequences. My frustration with how the healthcare community treats this disease and those of us who suffer from it just continues to fester.
Methadone will work very well for your RLS. Dopamine agonists are no longer prescribed for RLS as first line treatment because of the rate of augmentation and the trauma of withdrawal.I really hope your Covid symptoms settle and that the Methadone helps.
That was a horrible experience for you with covid. I am glad you are better and hope you continue to improve. You really need to get off the Mirapex and Carbidopa. You need to taper very very slowly coming off the drugs to lessen any withdrawal effects. Methadone will help with this. I read you tried gabapentin in the past, but it was taken along with taken along with Sinemet and Mirapex so it probably didn't help. I suggest that you start gabapentin 3 weeks before you are off Mirapex and Carbidopa although it won't be fully effective until you are off it for several weeks. The beginning dose is usually 300 mg gabapentin After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Also, have you had your ferritin checked? Improving it to over 100 helps 60% of people with RLS.
Thanks so much for the info. Currently I am taking 1mg. Mirapex and 1 50-200 Carbidopa every morning and at night along with 600mg Gabapentin. My latest neurologist told me that I could take an extra Carbidopa and 2-3 Gabapentin during the day if I felt breakthrough symptoms erupt which is sometimes daily.
Unless you experienced RLS symptoms during the day before you started taking mirapex and carbidopa it sounds like you are suffering augmentation. It will be no fun coming off these drugs. You will suffer but will be glad you did in the long run. Reduce the Mirapex by .125 mg every couple of weeks. You may need to reduce by less than that or for a longer period. I'm not familiar with how much to reduce the carbidopa but don't start reducing it until you are off the Mirapex. Good luck. Lots of people on this forum have gone through this and we are all here to support you.
Of course you'll get daytime breakthrough RLS. You're on over 4 times max dose Mirapex and Carbodopa which has the highest augmentation rate of all.You will never be free of intense RLS unless and until you take control and get off these drugs.
Your neurologist is negligent and knows Zero about RLS. There have been several legal cases in the US and the UK against neurologists for prescribing these drugs.
Please find another, knowledgeable doctor or neurologist, read the Mayo algorithm and the pinned post on augmentation and start reducing slowly now. I see that you are waiting to see someone at Johns Hopkins. They advocate a drug free withdrawal so will not usually prescribe opioids to help. As you have been through withdrawal once before you know what to expect so ask for help withdrawing.
As you're on such a high dose, take at least a year to reduce. By tiny amounts every 2 to 3 weeks.
Buy 'Clinical Management of RLS' second edition by Dr Buchfuhrer, Allen, Hening & Lee and read it and show to your neurologist.
We have to read all the research papers ourselves because neurologists aren't taught about RLS and some are still over prescribing these drugs without realising the damage they are doing.
Lots of research articles on over prescription of DAs.
Note to booster seekers: A U.S. epidemologist (Katelyn Jetelina) recommends using the alternative mRNA vaccine for your 2nd booster, conferring broader protection. E.g., if you previously got the Pfizer/Biontech vaccine, boost with Moderna. Some may not have this option but in the U.S. you can find a specific vaccine location by searching at vaccines.gov.
Sorry you had to go through this and thanks for sharing good information. What about the second booster shot? It is offered here in the US and I signed up to get it in a couple of days. Stay safe and healthy.
No point as I've just started a new MS drug which means I won't make any antibodies. I'll have to wait for Evusheld, for immuno compromised people or stop my MS drug.
Hi Jools sorry to hear you were poorly second time round with covid hope you recover completely soon.
Hi, I am a bit late joining this conversation but I caught COVID for the 1st time in September this year. My RLS has gone into overdrive since and has gone from being under control to being completely out of control. I have noticed other symptoms thanks to my Fitbit such as my resting pulse having increased by 10% and I cannot get it to reduce. My question is for those of you who had worse RLS symptoms after COVID - did your symptoms ever reduce again and, if so, after what period of time.
My resting HR is still 52/53 and thankfully the spikes have reduced from 185 sitting to around 90. It has definitely improved. But I take non sedating anti histamines at night and regular Nattokinase. There is evidence that this can help.I had Covid again at the beginning of Nov, but luckily I had received the Covid booster 3 weeks previous and I'm off all MS drugs. It was very mild and didn't affect my RLS.Did you take cold and flu remedies, like night nurse? Or decongestants? Most will trigger worsening RLS, but it should settle when you stop the meds.
Yes, definitely. My fitbit tracker shows some interesting patterns. I have MS and can't walk far, but my HR fools the app and it shows I've 'exercised' for around 40 mins a day. I haven't!
Well, I’m in good company then. Since I had Covid in 2022 I’ve noticed that. My HR might go up to 80 after breakfast while I’m sitting at my desk working. My resting heart rate is usually in mid 50s, so I definitely notice it. I’ve been caffeine intolerant since way before Covid so can’t blame that one.
That is very odd with the Fitbit and I will have to research to see how FitBits gauge work-out time. It might be based on length of increased, sustained heart rate?
After I caught Covid in hospital in March '22 and my heart rate kept spiking to 185 sitting down, they did 24 hour halter ECG and ultrasound. It showed slight damage to left ventricle & the unmasked radiographer said every single appointment he had for the previous 2 months had been for post Covid heart issues. I'm lucky that mine was not too severe and it's slowly improving.I just read an insurance alert that there are 180,000 excess deaths among 30- 50 year olds in the USA for 2022 but it's not making any news headlines. Disturbing....
That type of damage will heal. Inflammation versus muscle loss from say a heart attack. And yes, deaths from heart problems was dropping until Covid. Strokes, heart attacks, blood clots everywhere from this virus and all age groups. Not so much the virus, as the immune reaction it provokes in us. Even after mild cases, and up to a year later, doctors are seeing heart problems de novo. Maybe when we learn enough, the standard of care will include blood thinners, and low dose steroids, from first day of diagnosis and for two to three weeks after. Our previous Psychopath in Chief was given steroids when he was hospitalized for Covid. Might not only prevent death, but long Covid. Our bodies turn on us, so have to ratchet it down. Dumb radiologist. He’ll learn the hard way.
Until hepa air filters are installed in all public places and trials of anti virals initiated, we will continue in a spiral off excess deaths and poor health. MS, ME and type 1 diabetes have all increased significantly, as they're all triggered by viruses.Until the economic costs start to affect big business, nothing will be done.
It is appalling. Hospitals have no infection control and believe Covid is mild and 'just a cold'.
Yes, I read that Covid reactivates Epstein Barr and likely other dormant viruses. This article is very recent and interesting and naturally we with RLS would likely have a problem with this treatment modality. pennmedicine.org/news/news-...
And no one will care so once again we will be left to our own devices.
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