Havnt been on here for a while. I’ve shared my story many time’s but il just go over the particulars.
Mental heath - PTSD, severe anxiety, depression.
January 2020 - After having adverse reaction to Lorazapam, I went could turkey and come off them.
February 2020 - I come off Pregabalin 150mg (for anxiety) cold turkey as I felt it was worsening my mood.
March 2020 - First symptomhs of RLS.
May 2020 - I come off Mitazipine 45mg as Initially it was to help with anxiety but also sleep. Slew non existent so come off them cold turkey. This induced really bad insomnia.
The only drug I remained on for my anxiety was now Venaflaxine.
June 2020 - March 2021 - due to the intensity of the RLS my GP advised Ropinorole 0.5mg until I could be seen by specialist (neurologist). I was increased to 1.0mg in December 2020 which initially helped for 5 days but RLS returned with vengeance. The next 3 months, I cannot explain were absolutely traumatic. I had this almighty pain, the RLS symptoms were intense and I realised when taking the 1.0mg Ropinorole in night it intensified almost straight away.
April 2021 - I had seen the specialist (neurologist) who informed me of Augmentation and told me to wean off drug straight away. I went Cold turkey. I had instant relief from the Augmentation.
May 2021 - After having my iron levels checked, tested 7.9 and percent iron binding was 13.5. Was told it needs to be atleast 12 & 20.
RLS symptoms were getting beyond tolerable.
June 2021 - I was bought in for Iron infusion, which initially worsened my symptoms for 4 weeks and then settled.
July 2021 - It was suggested my venaflaxine could be making my symptoms worse. However as my mental health was not stable to stay on them. I could not come with the RLS so decided to come off them cold turkey. Really bad withdrawal, really bad, however RLS symptoms improved to a point of 1/10. (Which is good). Tolerable. Dare I say I had 7 nights without any creeping/burning sensation, and for the first time was able to keep my legs still. This did not last.
September 2021- having had improved symptoms since coming off venaflaxine, they were slowing starting to reappear. I actually thought I had cured myself but no. I was now being advised to start Pregabalin initially 50mg then to 100mg. I refused as I wanted to resolve my symptoms without medication. I continued my high iron diet, exercise, cut down smoking dramatically and even gave caffeine a stop.
October 2021- I have realised since coming off medication, and stoping the things that worsened my symptoms, initially I was getting better however I felt the symptoms were later creeping up. However I’d say RLS symptoms were now 1/10. Which is good. Yes I’m getting there.
November 2021- the last 7 days have been absolutely awful, including today where I feel like I have gone back 12 months. The sensations and creeping and worms are all now back and the inability to keep my legs still is also back. And now being advised to start Pregabalin.
I can’t, I’m too scared to start any medication as listening to people on here, I know once you start medication it just never ends. I wanted to relive myself without medication. Is wrong to take that approach?
I actually thought I had cured myself, but it seems not. I’ve literally done everything I can in the last 12months to get rid of this but I feel like I’m back at the beginning.
Since coming off the venaflaxine, my mental health has deteriorated, depression has kicked in really bad. Was it worth it coming off venaflaxine? I don’t know anymore.
Advice please, as these sensations are just unbearable and I feel like amputation rather then starting medication.
Regards
Ali
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I'm delighted that someone else is banging on the trigger drum.Keeping an intake diary is extremely important, to get a handle on what might be setting off the ould jitters.
You are punishing yourself unnecessarily by going cold turkey on everything. That is also increasing the stress you are under.
The majority of people getting relief from rls- and I'm only talking about 80% cover- are using some sort of chemical. From iron supplementation to opioids.
Lonepine has given a great answer.
Hopefully you will get through this.
Often, one has to try out a lot of courses to find out what will work for you.
Madlegs1 thank you. As explained due to the prior complications with medications namely adverse reaction to lorazepam and severe augmentation off Ropinorole. I’m very hesitant towards medication now, very fearful. Instead as you have said been trying to find the triggers.As soon as I identify the trigger, initially symptoms improve sometimes dramatically, sometimes not much. But they always return, and sometimes worse as before. Now In last 7 days I rate it currently 8/10. Getting in intolerable.
Wow, reading what you have said about coming off medication cold turkey has just hit home. And now explains a lot that’s happened over past 18months.
I have previously been prescribed tramadol and also now being advised to start Pregabalin, and I’m thinking I might have to and it’s uncontrollable but then where does it end.
I'm so sorry to hear of the problems you've been having with your mental health problems and your RLS, especially when so young.
I'm assuming that you have been diagnosed with primary RLS. If this is so then sadly, you should know that there is no cure and the condition is progressive as you get older.
The first important thing , I believe, for somebody with RLS is to learn as much about it for yourself as you possibly can. This could have a considerable impact on your life. This is largely because most GPs in the UK are quite ignorant about the condition and even many neurologists or sleep specialists aren't much better.
If you were to totally rely on doctors it's possible your RLS could be mismanaged.
It's unfortunate that there are no RLS experts in the UK. The US appears to have the best number of them. Some of these being internationally renowned.
It is important that you get information from reliable and authoritative sources mainly because these can be trusted to give you the latest or most accurate information.
Just as in other spheres, there is good information out there and there's misinformation.
Note some good sources of information include information from RLS-UK, the IRLSSG, (International RLS Study Group), EARLS, (European Alliance for RLS ), the RLS Foundation of America and the UK NICE (National Institute for Health and Care Excellence).
Other sources include academic/medical/research journals, particularly journals associated with neurology or sleep medicine.
I believe like me your RLS may originally have been mild, but was first exacerbated by antidepressant use. MOST antidepressants can make RLS worse. There are a few so called antidepressants which are thought to be safer for RLS. The one's usually mentioned are trazadone or nefazadone.
Unfortunately, I've read that these aren't particularly effective for depression. My own GP advised me against them saying they're more effective as night sedation.
The most effective and RLS safe antidepressant is buproprion. Unfortunately, known as Welbutrin this is not available in the UK.
RLS experts stress that if you really need an antidepressant, then the benefit of taking one can outweigh now much it worsens your RLS symptoms. In this case, as I recently read in an article from the RLS foundation, citalopram or sertraline are recommended.
My personal experience of citalopram is that it did worsen my RLS, but not as significantly as mirtazepine or amitriptyline.
Of course, taking one of these means that you have to optimise the management of your RLS. Throughout your life.
One thing I note about what you wrote is that you stopped several meds cold turkey. This is really not advisable and in some cases could be quite dangerous, not to mention making RLS worse.
There are several aspects to the management of RLS about which I hope to give you a summary. These are -
1) Non-medical remedies which can help relieve mild or intermittent RLS.
2) General considerations
3) Medical treatments
4) Cognitive or behavioural strategies that can help many uncontrolled symptoms.
1) This includes practices that may relieve symptoms once they've started.
The ones that are most accepted by RLS experts are exercises and stretches and vibratory devices. One such device, approved by the US FDA is the "relaxis" pad.
2) The main general considerations are iron therapy and aggravating factors. Food supplements is third.
Iron therapy.
I note that you have had an IV iron infusion, which, from what you wrote it doesn't appear to have been very successful for your RLS.
The reason for this is because you had iron deficiency and I presume that's why you were given the infusion. It's not easy to get an infusion in the UK for RLS.
The point about this is that if you had general iron deficiency then this needs to be corrected first before you can expect any effect on your RLS.
The reason for this is that the cause of RLS is Brain Iron Deficiency. (BID). If there is general deficiency almost all of the iron you take in will be used to correct the general deficiency as this has precedence. The main role of iron is in Red Blood Cells enabling the transport of oxygen essential for life.
I suggest you get repeat blood tests
These should include serum iron, transferrin saturation (TSAT), ferritin and haemoglobin. Low iron and TSAT indicates iron deficiency and low haemoglobin indicates iron deficiency anaemia.
If you have general deficiency or anaemia, iron therapy is aimed at correcting this.
Of there is no deficiency, you may still have BID. In this case iron therapy can help, but what form this takes depends on the results for TSAT and ferritin.
TSAT must be below 45% otherwise iron therapy may be dangerous.
The accepted cut off point accepted by all the organisations I mention above is a ferritin level of 75.
The recommendations are -
1) if ferritin is less than 75 then take an oral iron supplement
2) if it's between 76 and 100 then you may need an IV infusion.
The aim of this is to raise the ferritin to at least 100, which has been shown to benefit 50% of RLS sufferers. Sadly 50% don't benefit.
A recent study by Dr Winkelmann in the US showed that IV infusions van be successful in 60% of cases, partially successful in a further 20% and sadly a failure for 20%.
The reason that oral supplements are better for lower ferritin levels and IV for higher, rather than the other way round, is a hormone called hepcidin.
You'll find lots of advice on what iron to take and how/when to take it on this site.
One key point is that studies have found that taking lower doses of iron and less often, i.e. once every 2 days actually increase the amount of iron you can absorb by up to 50%.
Again this is due the action of the hormone hepcidin.
NOTE there are aggravating factors other than antidepressants for RLS you can read about elsewhere. Diet may be one.
Food supplements
There is no research or clinical evidence that apart from iron, vitamin B12 znd vitamin D that any food supplement can help RLS. This includes magnesium.
The food industry does advertise many products claimed to help. There is nothing to substantiate their claims.
Vitamin B12 and vitamin D supplements can help if you have a deficiency. Vitamin B12 deficiency can be a cause of secondary RLS.
Other exceptions.
Since inflammation is a factor in RLS, a good anti-oxidant can help e.g. selenium or celery juice.
Gut health is also important so probiotics.
3) medications
It's understandable that you would like using medications for your RLS. However, if you're experiencing daily symptoms disrupting your life, especially sleep deprivation, you made need to consider a medication.
In which case it's important that you know what meds are available, their benefits and drawbacks, what's appropriate and when, how to ptevent problems and even dose.
You will find GPs are quite ignorant.
This first link is the latest and comprehensive guide to the management of RLS. The links following it also corroborate the guide The NICE is the offiial guidance for UK GPs.
These are not intended as an alternative to 1, 2 and 3 above, only as an adjunct if and as necessary. The successful treatment of RLS means they may not be needed.
It has been said RLS initially until iron studies were performed. Iron tested 7.9 and percent iron binding was 13.5. Was told it needs to be atleast 12 & 20 for RLS.
Iron infusion was provided for RLS. Was said I had RLS with not noticeable symptoms and stopping Pregabalin in February 2020 triggered for me to have severe symptoms. Is that primary RLS? When you say no cure, if I keep finding out my triggers and correcting them will that eventually not rid me of the illness. And what do you mean progressive ? How Can it get worse then it already is, being intolerable now, how can one imagine it being progressive.
I’ve been on here many times and received positive information and gone back to find out for myself over the past 18months.
Antidepressants at the moment are a serious no go for me at the minute. I have already come off so many,last one 16 weeks ago to improve my RLS. Still not worked. Am I wrong to see it through before resorting back to medication?
I’ve had previously, citalopram, escitalopram, sertraline, Mitazipine, venaflaxine. And found only venaflaxine helped.
The lack of advice and support and basically me being naive in thinking Im invisible to bad withdrawaL, I can handle it approach did not help. Currently not being on any medication now apart from tramadol every other night to relieve symptoms I never plan to go cold turkey.
The iron infusion was given for RLS to raise my ferritin levels. It did not relive symptoms, initially made it worse before sit settled.
In regards to medication, thank you for understanding my fear. Last 7 days symptoms have been intolerable, well they have been over last 18months but like I said as soon as I found triggers they only initially improved them worsened.
I’m scared to start the Pregabalin as advised as I know it will be only a matter of time before It stops working.
Am I wrong to want to take a no medications approach. Or am I making myself go through unnecessary suffering?
I just know that after the Augmentation off the Ropinorole has damaged me for a long time to come both physically and mentally. The more I look back, the more I just cannot believe what I was going through. Medication scares me. But it seems I may have to give up because these sensations won’t stop and I’m at a point of wanting to physically amputated my legs
I presume the results you give are for serum iron and transferrin saturation, TSAT).
The results are low and this indicated general iron deficiency.
This does not necessarily mean you have iron deficiency anaemia (IDA) as such. IDA is usually indicated by a low haemoglobin.
I would have assumed that if you did have IDA, then somebody would have told you that.
I find it very strange that you were told, apparently that you were given the infusion for RLS.
Firstly, IV iron infusion is not recognised as a treatment tor RLS in the UK and many people who ask for one are refused.
Secondly, IV infusion is indicated for general iron deficiency.
There is evidence that iron therapy is not going to treat RLS until iron deficiency is corrected. It's possible that whoever decided on the infusion doesn't know that.
What's really strange is that you were apparently told you had RLS with not noticeable symptoms.
RLS is diagnosed by its symptoms and only by its symptoms. There is no test for RLS!
The 5 diagnostic criteria for RLS are descriptions of the symptoms. If symptoms match the first four criteria then it's probably RLS. If even one of the criteria is not matched then it's unlikely to be RLS.
This means, in effect, that unless you have noticeable symptoms then it is impossible to diagnose RLS.
I do note however that you may have previously diagnosed with RLS, with symptoms. You were prescribed pregabalin. However, this is no cure, (see below). If you stopped the drug, symptoms would recur.
Here's the link to the diagnostic criteria.
It is still currently accepted that there are two forms of RLS. Primary and secondary.
Primary is inherited. Most cases of RLS are primary.
Secondary is thought to be caused by some other medical condition. Common ones are the anaemias, diabetes, thyroid dysfunction, hypoxia, peripheral neuropathy or renal failure.
Anaemias means either IDA or vitamin B12 anaemia.
However, a recent study has shown that even people diagnosed with secondary RLS, have a genetic disposition to the condition.
This means that not everybody with IDA, for example gets RLS.
Antidepressants do NOT cause RLS. Hence, if your RLS symptoms apparently started after starting one then it is highly likely that you have primary RLS. I'm sorry to reiterate there is no "cure" for this.
Some people misuse this word. So for example if you have a bacterial infection which makes you ill you may be given an antibiotic. This treats the infection by killing the bacteria. When all the bacteria are killed, the symptoms disappear and you stop taking the antibiotic.
The symptoms do not come back. You're cured!
None of the currently known treatments for RLS cure it. The treatments for RLS are all symptomatic, i.e. they may get rid of the symptoms.
However if you stop the treatment, tbe symptoms will reappear.
This is because it appears that the underlying cause of RLS is a failure to get sufficient iron through what's known as the Blood Brain Barrier, (BBB).
You can think of this as a kind of sieve. It lets some substances in the blood get into the brain, but not everything. In addition some substances easily cross the BBB and others find it more difficult.
In the case of RLS, the lack of iron getting across the BBB causes Brain Iron Deficiency (BID). This in turn leads to other dysfunctions which lead to RLS symptoms.
The idea of increasing the amount of iron in the blood is to try and increase the amount of iron getting across the BBB. However this is quite a complex process and a key factor in it is the serum ferritin level. It has been found that people who do NOT have RLS can have a ferritin level as low as 15 without any problem. However for somebody with RLS, it needs to be at least 100 and ideally above 200.
The aim of iron therapy for general iron deficiency/IDA is to increase the amount of iron in the blood. This does not directly affect the amount of iron crossing the BBB. This is because most of the iron is needed to maintain haemoglobin levels.
The aim of iron therapy for RLS is to increase ferritin levels which can then increase the amount of iron getting into the brain.
The important blood result in RLS then is not just serum iron and TSAT but also FERRITIN.
Hence even if serum iron and TSAT are OK, if ferritin is below 100 iron therapy is recommended.
The recommendations for iron therapy for RLS are this -
1) if ferritin is below 75 then take an oral iron supplement
2) if it's between 76 and 100 an IV infusion may be needed.
There are risks associated with IV infusions,so they are not easily given.
IV iron infusions are given for severe iron deficiency and severe IDA. When I last had IDA following surgery I was NOT given IV iron.
Overall, if you're ferritin was below 75 you should not have been given IV iron for RLS.
I hope you can see that's why I find your case strange.
PLEASE NOTE, just to emphasise the point. If you have primary RLS it is not caused by low serum iron, low serum iron just makes it worse.
As regards pregabalin. I can appreciate your reticence to take it, but if you do take it then you should get relief from your symptoms fairly quickly. It is possible that some years down the line, it stops working. That would be a problem, THEN. But you would have had years of relief in the meantime. Pregabalin is NOT the same as ropinirole. The risk of augmentation is much much less. There are other options following that.
If you don't take it, or any RLS drug now then you may just go on suffering as you are now. What then is the benefit of not taking it?
Amputation is irreversible!
I'm not advising you take pregabalin. It's your choice. You may wish to explore all other options first. You are handicapped unfortunately by the antidepressant.
Your best option as a way of avoiding pregabalin is iron therapy. However, you must ensure you get this as appropriate.
If you STILL have iron deficiency, then iron may not relieve your RLS, It will only treat the deficiency at first.
If you have no iron deficiency and your ferritin is under 75, take an oral iron supplement.
It seems from what you write that the IV iron did not relieve you RLS neither immediately or later. This may have been because you were iron deficient.
I suggest you ask for blood tests again. Serum iron, TSAT, ferritin and haemoglobin. If they're all normal but ferritin is less than 75, start an iron supplement.
If the supplement doesn't appear to work, do not stop, KEEP taking it. Ask for repeat blood tests in 6 months to see what your ferritin level is.
If you do decide to start pregabalin then you need further information on this drug. Just ask here.
The links I gave you earlier support what I've written.
Elffindoe i havnt been informed I have IDA. As you said I’m sure someone would have made me aware of I had that.And yes the levels were for serum and TSAT. Ferritin before iron infusion was 67 I’m still awaiting results for blood test after the IV infusion.
The neurologist specifically stated to have the iron infusion to relieve symptoms of RLS rather then get my iron levels up. I did find that weird too.
To confirm I was told it’s a possibility the Pregabalin kicked off symptoms of RLS when I stopped. The Pregabalin could have been helping RLS symptoms which I didn’t notice, and when stopping Pregabalin they re surfaced. I don’t understand that too.
I was only ever prescribed Pregabalin previously for my anxiety, nothing to do with RLS.
Its been evident in my case that antidepressants have worsened my symptoms, however not the cause of RLS as you have stated.
Thank you for understanding my fear of medication. I just wanted to be able relieve my symptoms without medication. But it doesn’t seem to be working.
It looks like if the iron before bed theory and vitamin C theory doesn’t not help relieve symptoms then I will inevitably have no choice to start Pregabalin as it is intolerable.
And your right, what is the benifit of not taking it. I’m just making myself suffer unnecessary. I wish I didn’t have this fear.
If your ferritin was 67 then it was correct to have an IV infusion. Let's hope the next blood test says it is raised.
In addition what the neurologist said did kind of make sense. He may not have however taken into account the fact that the iron will mainly go to correcting your iron deficiency.
It's usually a haematologist that arranges an IV infusion, not a neurologist.
Don't be suprised if your next blood test then says that serum iron and TSAT have risen, but not ferritin.
By all accounts you may not get any relief from iron therapy until ferritin is 100. Even with the IV infusion it could take 6 to 12 weeks for that to happen.
Therefore, don't give up on the iron just yet.
However, if you are suffering in the meantime then you may wish to start the pregabalin.
I'm not sure that RLS symptoms are a withdrawal effect of pregabalin. I suspect that withdrawing from it may only give you RLS symptoms if you previously had RLS.
In any event if pregablin withdrawals have had time to pass and you still have RLS symtpoms, then you have RLS.
Furthermore, as previously said, antidepressants do not CAUSE RLS, only make it worse.
Having only been off venaflaxine just over 16 weeks, and prior 18 months coming of mitazipine Pregabalin and Lorazepam all for anxiety which worsened my anxiety and depression. Am I wrong in thinking I should now see it through and make changes in my environment and lifestyle before resorting back to medication?
Since the reaction to Lorazepam and severe Augmentation off Ropinorole (Which I think has caused permanent damage) I’m really fearful and unable to process that any medication will be any benifit in the long run. Does that make any sense ?
My consultant psychiatrist is more then willing to prescribe anything however medication has really scared me given with the lorazepam I could have potentially killed my wife and children and it would have been said I’m “mental” not that it was wholly the medication.
The more out there approach is something I have come across.
I did find eating late did worsen my RLS symptoms and for weeks now never eat after 8pm - 7am. Again Intially this step did improve symptoms however in back to square one. It’s like soon as a find a trigger, initially symptoms improve sometime dramatically sometimes not that much but always the symptoms return and sometimes with avengence.
I have been taken iron supplements for many months of not a year. However never before come across taken it before bed or at night, it always been in morning. This is something I will try, and taking it every 2 days will definitely increase how the body absorbs it.
I started Pregabalin in January 2019 Up to 150 x 3 a day and stopped in February 2020 which I believe triggered everything. As far as I am aware I have never had Covid, having many test however one cannot be sure. I do know after having the double does vaccine in March 2020 did not help matters. But then I was suffering augmentation so I don’t know.
Past 7 days. No vaccine. No higher elevation then usual. No more exercise then usual, tend to stick to fixed regime and ease off when symptoms worsen. How do I know I have a pinched nerve? Thyroid levels checked 12months ago and told ‘in range’. My wife was told her levels were in range and 30 days later diagnosed with Stage 3 thyroid cancer spread to the lungs. I’m quite tolerant to colds and recover within days. However over the last 12months this has not been the case and has took me many weeks to recover from common cold. I gained weight easily when on Pregabalin and only then. Since have lost a lot. Have been checked for hepatitis C and I think I might be a hypochondriac lol I don’t know. God hate this awful disease.
Ok il five your mad science theory a think, however found aspirin especially ibuprofen worsened RLS.
But first I will try the iron before bed and get the specific one you mention.
Should I not start the Pregabalin as advised ?
Sorry for making you a crazy women, il stop. Doesn’t look like il be getting any sleep at all. I hate this, this RLS is worsening my mental Health
No one did try and figure out why. I had suspicions I may have Bowel cancer and had a recent colonoscopy to rule that out. Still no cause for iron deficiency despite taking supplements and high iron diet over last 12months. Had recent CT Scan and MRI below neck and awaiting results. Will that show ulcers? And I’m definitely not vegan
It is and the slowest growing aswell. Unfortunately it was more complicated for my wife and complications in the surgery’s has left her physically disabled on one side of her body.
Have you tried looking at your diet. Sugar, sweetners, fizzy drinks, ice cream alcohol particularly red wine, sulphites, caffeine can all set people off. These are just some of the things that make legs go wild.
Mum007 since being diagnosed with RLS I paid particular attention to my diet and lifestyle in order to get relief from medication. I tried to find the triggers. Caffeine was a big one for me, however after finding my triggers and making adjustments I found this only helped initially and symptoms returned after.
Whew - that's a lot of analyzing - all good! I've shared this link before - severe anxiety help. It's from a Chronic Fatigue Syndrome (CFS) Forum but it should apply to anyone...
When I get restless legs at night I do the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl.... In addition, I walk for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walk. It works every time although I may wake up later at night and have to do again. Actually on the calf stretch I don't hold it for 20 seconds, but instead do the exercise for 20 - 30 times. I also push my heel back before I lean forward. I, also move my leg to each side when it is stretched. On the thigh stretch, I only hold it for a few seconds, but then repeat 6 - 10 times.
Yes I would. Hmmm, or at least it would be converted into a hormone? Vitamin D enters your body as a vitamin (I think even via sunshine) is converted to a hormone or even more like a steroid. You got me curious, why do you ask.
Thank you for everyone for their thoughts and advice in helping me through.
As advised, I started taking my iron tablets in the evening rather then morning with some vitamin C. I was taking magnesium supplement too prior to that in morning and also do that at night.
Result - Not much, however the sensations are a lot less intense, if that makes sense. And dare I say 3rd night running, getting a lot less frequent.
Is it to do with the iron tablets at evening, I don’t know. Is it all in my head, I don’t know.
I just know I can’t and do not want to start any medication for this after the augmentation from Ropinorole.
Pregabalin - I have been advised to start at 50mg x3 daily 14days, then 100mg x3 daily.
Advice - is Pregabalin ok to take like Tramadol, if and when required ? Or does it. It work like that. Will it even have any effect like that? Shall I try it out?
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