Just to inform members that I recently posted a thread trying to promote a more holistic approach to rls.
I did expect some reaction to this.
However,the discussion that followed was counter-productive to what I was trying to achieve and therefore I have deleted the thread.
If anybody wants to find out more about a holistic approach to RLS i.e. catering for the mental, emotional, social and spiritual needs of people with RLS ALONGSIDE any physical treatment or remedies please let me know.
To avoid confusion the term "holistic" in this case does NOT refer to such things as herbal, natural or alternative remedies
Exactly one week ago 18/07/21, I was attacked by RLS.
No warning shots had ever been fired RLS just jumped and landed on me and squashed my legs. The pain was erratic, moments of calm, followed by excruciating pain in both my upper thighs and balls of my legs which lasted for 20 or 25 minutes only being relieved by constant pacing.
The following day I rang Dr Google and we spoke for about 10 hours, some of it during the night after my wife kicked me out of the bed, to cut a long story very short I now live in a state of quiet desperation, in a heightened state of readiness waiting for the next attack. I have NO health concerns that I am aware of I take NO medications of any description apart from Vid D & C daily ( since the start of the so called pandemic ) My first day of retirement was the 29th February 2020. During my discussions with Dr Google I discovered (healthunlocked.com) and have been both fascinated and very frightened reading your stories. My good God the amount of medications you guys are taking fills me with trepidation. I have probably lost the audience because I do talk a lot, that’s just me I’m from Ireland, but to finish I must just say that my wife is a lovely woman and she massages my legs twice a day with some of her witches potions especially before bedtime and I do get several hours of restful sleep before getting kicked out of bed again. I am always grateful for advice, thanks for listening.
Those horrible attacks that seem resistant to anything are something I have experienced. I have been on Gabapentin but it didn't work well and there were side effects. I started on cannabis oil which helps with sleep and definitely lowers the "attacks considerably but I still had some attacks on occasions which were resistant. However my big breakthrough has been with cannabis vaping prescribed by my doctor. When those attacks happen I find the cannabis bud vaped can stop the attack within a minute. It turns the legs and upper body symptoms to a melting feeling and I get back to sleep. I wake up very refreshed and feeling great. I can highly recommend people who have these horrible symptoms give it a go. You need the Indica variety which is calming. Luckily here in Australia I can get it prescribed now…vape pen included.
Hi, holistic care is an "approach" not a therapy. It's not "prescribed".
There are therapies that are called "holistic", but that's something different.
I'm glad you asked though.
In relation to RLS, obviously the first step is to see a doctor and get it diagnosed.
Depending on the doctor there's several options they have.
One is that they can decide to totally take on board the management of your RLS. Part of this will be ESSENTIALLY discussing any medical treatment with you and providing any treatment decided upon. That may be all.
Two is they may IN ADDITION consider your needs beyond merely treating the conditon, i.e. your mental, emotional, social and spiritual needs. and try and manage these.
Three, they may refer you to other health professionals or other agencies to help manage your other needs apart from the treatment.
As regards holistic care, option one is NOT holistic care, it's medical care.
Option 2 is not a particularly good option beacause the doctor may not have all the skills, expertise, resources or time to deal with all your needs.
One significant feature of holistic care is that NO health professional is an expert in judging your holistic needs. YOU are the expert.
Hence if any health professional should judge that you have no other needs, it's not up to them to say, no more than they can tell you if you have a pain or not.
One option for YOU then, is once you've seen a doctor and agreed a treatment then you seek help with identifying and dealing with your other needs by some other agency if necessary.
This forum could possibly be one such agency, but I wouldn't say it is at the moment.
I will send you an outline if the holistic approach by PM, it may not be what you think it is.
Hi, sorry I did not get a chance to view your input re an holistic response to RLS. I must admit I find it difficult that any call for an holistic approach (by your definition) at this time can be argued against. Medical consultations and treatments, at least in the UK, have become so disconnected. Barry
In the meantime I agree that the NHS has become fragmented. I believe this may have been political in origins In the early 1990s, I believe the NHS was struggling, Cough!
It was decided to adopt a business model for the NHS, partly to improve quality of services, supposedly.
The NHS, then comprised of regional health authorites,(14 in England) each managing several local authorities and each local authority managing all health services in their cachement area. i.e. hospials, GPs, health centres, district nurses, midwives, health visitors etc. This even included Nurse Education schools. (based in hospitals).
The government gave money to the regional health authorities, who gave it to local authorities who paid for everything.
Instead, the NHS was split up into "Purchasers" and "Providers". That is, separate organisations that bought services for the people living in in their cachement area and organisations that offered services that purchasers could buy.
This introduced the idea of "competition" into the NHS.
General business managers were introduced, e.g. from Selfridges.
In addition, servicies were also split up e.g. GP services, community services, emergency, services etc. Some of these servcies are now purchased by Clinical Commissioning Groups and some, I believe, by NHS England. Of course the (now disgraced) NHS Public Health is yet another NHS organisation.
So now we have, e.g. Hospital "trusts", GP "trusts", community "trusts"etc. All separately managed. With either a diversity or lack of sufficent communication systems between them.
In addition some "providers" are private organisations under franchise. This means you mat get an appointment for a consultant appointment and the letter has the NHS logo on it, but the hospital and consultant are private.
This happened also at a time when IT (Information Technology) was developing. So all these separately managed organisations have seperate IT systems that don't "talk" to each other.
This is not a good basis for providing"holistic" care, which wasn't necessarily a priority in the 1980's
The good news is that holitic care is now being promoted in health and social care services and the implementation of "integrated health care " is beginning to join things up.
Being a bit cynical, although I recognise the value of some government policies which will enable more holistic care the main driver behind them is economy.
i.e. in "personalised care planning" there is a strong element of "self care". I am not in principle against this, I believe it's a good idea, but you can see the cost saving implications.
A few years back I got involved with an innovative "Self care community" project. It was often said, "If people aren't taking more responsibility for caring for themselves or supporting others in their community,then the NHS can't be sustained. It will collapse."
I didn't get the chance to read your post on and I'm rather disappointed to hear of folks reaction to it. You seem to be so well informed about RLS and always give good advice to folk. Can you PM me with the post?
I did not get to see the post either. I am interested in receiving further information. I appreciate all you do for this group and value your critiques.
Hi Manerva, I dont write on hear much. But I read the threads. I suffer a lot from side effects of meds for RLS and would be very interested in your post. thank you in advance.
I take 600mg pregabalin and 1000 mic clonazepam. I need 450 mg min at night and the rest in the morning. I still have trouble with legs and some times I will get some more sleep by sitting in a chair. The side effects are bad anxiety and feeling suicidal. Any problem however small also sends my anxiety a lot higher. I used to be on Gabapentin but that had an even worse effect on my mood. I have had anxiety and depression since my teens and am now early 60's. Have been on meds for it all this time. But meds for RLS have made it unbearable. I have seen a Neurologist who agreed with me on that but was reluctant to put me on oppiods as it could make RLS worse in long term.
A more recent opioid being accepted for RLS is buprenorphine (temgesic)
Opioids aren't known for making RLS worse. I've never heard of this!
Pregabalin, in a small number of cases can apparently cause a worsening of RLS.
Dopamine Agonists., whicb used to be prescribed for RLS are reknowned for making RLS worse, a condition known as augmentation. Perhaps the nueurolgist is confusing these with opioids. Opiods do not cause augmentation!
If the neuroligist is happy for you to take 600mg pregabalin and thinks opioids make RLS worse then it suggests that when it comes to RLS, they haven't really a clue. Also see below.
Other things that you don't mention.
The first treatment for RLS, and/or alongside is iron therapy. At some point you should have been offered blood tests for serum iron, transferrin saturation (TSAT) and ferritin. A full blood count (incl haemoglobin, Red Blood Cells and platelets), would also help.
If serum iron and/or TSAT are low (TSAT<16%) then you may have general iron deficiency. If haemoglobin is low you may have iron deficiency anaemia. This can make RLS worse.
An oral iron supplement, in the first instance, could help correct these.
IN ADDITION if your serum iron, TSAT and haemoglobin are OK, BUT your ferritin is less than 75ng/mL you should STILL start on an oral iron supplement
This is because Brain Iron Deficiency is the cause of RLS.
NOTE : you don't need a doctor to start taking oral iron supplments, but do get the blood tests.
YOU NEED more information about the best iron supplements and how to take them.
Another thing is, as well as looking at what could make your RLS better is to identify if anythings making it worse., i.e.e aggravating factors.
YOU NEED more information about what drugs can make RLS worse. They include, antidepressants, sedating antihistamines, anatacids and antacids. There are many others.
If you are taking any of these regularly or as needed, prescribed or over the counter, then if possible you should avoid them. If prescribed, discuss with your doctor either discontinuing them or replacing with them withs something else.
YOU NEED more information about what Dietary factors can affect RLS.
Avoid alcohol , sugar, nicotine and caffeine.
Supplements of magnesium, vitamin B12/folate, vitamin D and an anti-oxidant may help, (e.g. celery juice).
YOU NEED more information about the teratment of RLS with opioids and then you can take this information to your doctor/neuroogist to educate them.
I suggest you post your own thread asking people for information about opioids and diets. Many members know more about this than me.
You may find the NICE CKS website for RLS helpful. Here's a link to one of the sections of this.
Thank you for your long reply. A lot to take in and shocked about Opiods as been on Pregabalin for several years. Will reply to your letter soon. Again Thank you.
Good, I thought I might have given the wrong impression.
Yes, it's possible you could have got off pregabalin years ago.
That's why the ignorance of doctors about RLS sucks! I could have got off pramipexole years before I did. In fact if the neurologist who diagnosed my RLS hadn't been so ignorant, I might never have needed it in the first place.
Pramipexole is a dopamine agonist by the way. It makes RLS worse after time.
I was on Pramipexole as well for a few years before I was put on Gabapentin. I will reply to your letter soon with more questions as well. You sure know more than most Drs
After reading letter from consultant again I realise I misunderstood what was said. Opiates were mentioned that they had limitations , but not that they make RLS worse. He was referring to other meds. I had augmentation on Pramipexole and that I could take Rotigotine alongside Pregabalin. My mind is a mess with meds I take, and effects of Pregabalin that I lose interest in solving problems. I agree with you that my dose of pregabalin is too high. I take Iron liquid, feroglobin. also took mag which helped for a while, then effect wore off, even on very high dose, which upset my tum. I also take vit12 and vit D. Will have to try and see a dr again
Me too, please. I had wanted to read it but apparently didn’t get around to it quickly enough. Thanks in advance. And thank you in general for your tireless willingness to share your thoughts, knowledge, and insights.
It would make a mockery of the forum if anyone could delete members postings/replies as and when they felt like it or if they did not agree with what was being said.
A member can delete their own posting. If a member has started the thread and for whatever reason they wish to delete it, then everyone's replies get deleted too.
Hey everyone, there was a 'HA' after that comment, which means It was not intended to be a real suggestion. Trying to bring a little levity to all this pain we have. Sorry for stepping on tender toes.
Hi Manerva - I was very interested in your post recently and appreciate very much the knowledge and work that you share with us all. Unfortunately I have so many horrible things wrong at present and this means the intake of many medications. I have always liked other simpler approaches and also trying to accept the situation which I am still attempting to do. Keep on with the good work and many thanks for your input. Jelbea
I may have missed this discussion. I do believe in a holistic approach to RLS in most all cases except genetic RLS.
I believe I have made progress by changing my diet and adding mineral supplements where deficiencies were detected. I have added some amino acid’s to aid in sleep and my sleep tracker confirms they are currently helping.
Stabilizing my iron has been difficult.
I follow you, so I find it hard to believe I missed your original post. Could you pm me?
Hello ManervaI read the first post from him and said: "man I'm glad that someone with as much knowledge in SPI as Manerva thinks like me". And I thought about writing a contribution supporting his affirmations, but I wanted to think carefully about what I was going to write and I did not do it quickly. I've had a busy few days and haven't been able to write to you yet, but I want to record the following today.
"When a mental illness appears (or even sometimes a physical illness) it is because there is a physiological cause in the body, that may be an organ that does not work well or that an external infectious agent has caused an imbalance in the body's defenses. person".
In the first case, a physiological cause, you have to think why if a brain was sleeping well (for example) or a nervous system perfectly controlled movements or neurotransmitters that regulate emotions, moods, hunger, etc. .. Why, I repeat, from one moment to the next you stop controlling that balance well and the person begins to have a low mood, depression, anxiety, tremors, insomnia, etc.?
Currently it is known that traumatic life experiences, emotional deficiencies in childhood, lack of affection, unresolved emotional conflicts, etc. can cause emotional trauma to people that can act as triggers of this imbalance in brain neurotransmitters and lead to to physical diseases even like cancer.
In turn, the healing of these physical diseases must have a psychological therapy to remove that knot or emotional trauma that caused them or otherwise the healing will not be complete.
And finally, a good psychological therapy together with medicines helps to overcome physical diseases much more quickly than chemical therapy alone, because the human being is not just a set of physical organs, it has a mental component as important or more than the physical one; and we must treat both aspects of body and mind, if we want to reach a complete cure, that is HOLISTIC THERAPY.
This would take a long time to talk, and it is my intention to continue in the line with you Manerva, I support you and I would like us to continue talking about it.
Just to avoid any misunderstandings, I'm writing about the holistic "approach" which is not quite the same thing as a holistic "therapy".
Holistic therapy seems to be a term applied to various treatments or remedies whose common characteristic seem to be that they are non-medical.
The holistic approach is, if you like is a way of doing things based on a particular concept of what "health" is. The focus in holistic care is centred on the person, not on the condition.
I will send you some information by PM as further explanation. This is the same as I have been sending to other people.
in reply to
Some further information.
The term "mental illness" isn't really much used nowadays because it has implications and consequences that aren't particularly helpful.
Partly it comes from the idea that anybody suffering mental, emotional or cognitive problems must have something wrong with them physiologically, which could be hence treated, physically.
The "diathesis-stress" model is the idea that people have an innate physoological vulnerability and then the "illness" is precipitated by some event.
One of the problems with this is that it puts the focus on treating the condition. This is the same approach traditionally given to care for physical conditions.
RLS does appear to fit the diathesis-stress model!
The term "mental health problem" is more preferred in the last few decades as this implies that there is a PERSON suffering health problems.
You can turn this around and apply the same idea to somebody with physical problems, i.e. that they are a PERSON suffering health problems.
This is the holistic approach to care whether it's mental bealth or physical health.
Please include me, I’d be very interested in what you’ve put together. I strongly believe that a holistic approach is necessary with the medical as RLS strips so much from us. Thanks for all you do Manerva!!
Sorry you're disappointed. I hope you find what you re looking for.
I am a very clever person, a fact, not a boast and to add, it's not necessarily been of great benefit to me, so don't be envious.
Which goes to show, there's more to being a person than intelligence,
I didn't know originally how many people would be interested in my information aboput holistic care and I suspected very few. Hence I came up with the idea of PM-ing it to the"one or two" that might be interested.
Then somebody else asked, then somebody else and so on. I just copy and paste it, no problem, but at one point, it occurred to me just to copy it into the thread.
Then I thought the problem might be that who'd already received it by PM would think "Why didn't he just copy it into the thread in the first place?"
Which is a good question.
The first reason is that being intelligent, one aspect of being a whole person, doesn't necessarily mean you aren't stupid! Another aspect of being a whole person.
Who ever stated that being a whole person means all your parts are consistent with each other?
Another reason was self-protection.
To reiterate. I appreciate fully that people want their physical condition (RSL) to be taken seriously by health professionals and want to receive effective treatment so they can get back to health. Hence when frustrated in this, understandably can get angry.
If somebody appears to be suggesting that physical treatment should be replaced with something else, e.g. the psychological, I can imagine people getting even more angry.
I've never ever written that.
Physical treatment is an integral part of a holistic approach and may actually benefit from being a part.
I recall a song from my youth when cowboy movies were a source of moral insipration at the Saturday morning pictures.
Four wheels on my wagon and I'm still rolling along. Those cherokees are after me etc. Then it goes down, three wheels two - - -
Better to have four wheels than one, Psychological, social, spiritual AND phsyical. Not just physical.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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