Covid and RLS Augmentation

[HilsK]

I have been a member of this forum for a long time now and found it immensely supportive and helpful as I tried to withdraw from Pramipexole after severe problems with Augmentation, having been kept on this drug for 22 years. Then I caught Covid in Dec 2019.

The treatment of Covid in hospital obviously took priority over treatment for RLS issues .... it was far more important in the minds of every doctor I met. However in my tortured mind and body, I was going through hell as they stopped all medication I was taking to alleviate the RLS problems. This left me shaking all over, with random muscle contractions and incredible pain way beyond what I was able to tolerate. I had serious respiratory issues topped with severe asthma which nearly killed me yet in those moments it was the RLS issues that were intolerable.

I never really recovered from Covid and the attitude of Drs towards helping me with severe RLS remained so negative. To top that, I caught COVID a second time, a different strain, and ended up in hospital for 16 weeks. It took one junior female doctor to see me in incredible distress I was in from RLS+ and recognise why, before anyone would listen or take any notice. She had RLS too.

Since having Covid, my FERRITIN levels have dropped to less that 10ng and when it hit 7 last week I found myself rushed into hospital for an iron infusion. I am utterly exhausted, so dizzy, headaches, shaking/uncontrollable movement in all my muscles, my brain won't work .. its fuzzy.

There are other long covid issues involving my lungs. But I was due to see a neuro consultant about the RLS issues at Royal Stoke last week .. a nine month wait .. and he cancelled the appointment making me wait another 6 weeks, although my GP told him it was urgent.

All of this trying to survive with no support has now led to serious mental health issues.

I absolutely do not know what to do. There is gross ignorance about severe RLS in the UK ..... even the NICE guidelines haven't got it right. I know I am lucky to have survived Covid but I also need to somehow survive the rest.

I NEED a doctor who cares enough to walk this path with me. It seems disgraceful that I cannot find one in the UK.

[LanaCSR]

Oh, my gosh! HilsK, I hope you find the answers you are searching for and can find a doctor who is expert in RLS in the UK. I live in the US. So I'm afraid I wouldn't be of much help to you. But I read your post just now and it really touched my heart, and although I can't offer any help in finding a doctor in the UK, I do want you to know that you are in my thoughts and prayers. It breaks my heart to hear what all you've been through from this awful COVID! But the fact that you are still alive and on here to share with us tells me you are a strong person. You made it through COVID (twice) and I know you can get your RLS under control. Take care! I am sure you will get more helpful responses from others on this site who live in the UK and who can offer more assistance than I can. Stay strong. You can get through this! If you just need someone to talk to, I am here for you. 😊

[Jumpey]

I was so upset to hear your story and wanted to reach out with empathy and love. What a journey!Thank goodness you survived Covid.I have never experienced augmentation and withdrawal so I can only imagine how horrific it was. I do know that sudden withdrawal from DAs is dangerous and I think you probably have grounds to sue and could be experiencing longterm effects.Sadly I don't know if an expert exists in the UK. Maybe someone else can advise you on that.

As you know iron infusions are used to treat RLS. Whether you have received appropriate treatment for this is uncertain. Hopefully, the infusion you had will raise your ferritin levels sufficiently to improve your symptoms and your health and strength generally. You will need to ensure that your ferritin levels are reviewed. They need to be at least 100.

You don't say if you are currently taking medications or if they are working. Hopefully you are not back on a DA. If you post about the drugs you are currently on people may be able to help. Alpha 2 delta ligands such as Gabapentin and Pregabalin as well as opioids are better options than DAs.

Again you don't say if you are taking medications for your mental health issues. Many anti- depressants( and other drugs) exacerbate RLS .These could be causing you problems.

Huge good luck.Hang on in there. You are most definitely a survivor!x

[HilsK in reply to Jumpey]

Hi Jumpey

Yes a whole host of drugs as a result of the hospitalisation include antidepressant, anti-nausea, antihistamine and opioids ..... and pramipexole. A cocktail of 13 drugs many of which I should not be taking. Drs would NOT listen to me when I said I should not be taking them but I was too ill to fight them. Now I need to get off them. I tried to go cold turkey on them but it was like jumping off a wall and sweat was dripping off me .... I was suicidal ... and what happened? I was offered more anti depressants. Now with only phone call connections with GPS lasting about 7 minutes .... how do I get off these drugs?????

[martino]

I am also in the UK. I am attending clinics in the Movement Disorders section of the National Hospital for Neurology in Queens Square in London. I have met several very knowledgeable neurologists there. Is it possible for your GP to refer you there?

[HilsK in reply to martino]

Thank you for that information ..... Its good to know that there is a place in the UK where someone is interested. Unfortunately I am in the North West of England where any doctors who know anything about RLS or Augmentation are 'hiding under mushrooms somewhere', if you get what I mean. Doctors are simply not interested and if I hear the excuse "its because of COVID", as to why I can only speak to a GP for 5 minutes on the phone and not see one "one to one" when I spend much of the night rolling round the floor in pain I don't know.

[sylvanwanderer]

I am so sorry!!! Do stop the anti nausea meds asap. They are brutal exciters of RLS. The others you will have to wean off of, ideally under a doctor's care. (Emphasis on "CARE!") I'm stopping to pray right now for your situation. You really are up against it.