SP shares his frustrations in trying to get palliative and empathetic care for his mother, 59 who has been diagnosed with Restless Leg Syndrome. He questions why his mother should not have access to pain management.
Back in March 2019, my father suffered a heart attack. He had to undergo surgery and took around 3 months to get back on his feet. For us, our father is our pillar of strength and such things happening to him came as a shock for our whole family. My mother, 59, who had been in relatively good health up until then suffered from depression during that phase. She had severe trouble sleeping at night and would often complain in the morning that she just couldn’t sleep at all the previous night. This continued for a few days.
Diagnosis of RLS
To really find out if this was happening to her, I stayed up all night to observe her. I noticed that she wasn’t just having trouble sleeping but was continually rubbing her legs to get some comfort. She has uncomfortable feelings in her legs and gets relief from those only when she gets up and walks or rubs her legs. Due to this, she is unable to sit at night, let alone sleep for more than 30 minutes The next day I took her to a sleep specialist who diagnosed it as Restless Leg Syndrome or RLS and gave her medications for it. Trusting our doctor, my mother continued to take that dose for a few weeks until we started noticing that her symptoms were slowly increasing and coming on earlier in the day. Earlier, before starting the medication, it used to happen only at night around 12:30 am or so but now, it happens in the afternoon too and begins earlier at night too. After much research and discussion with RLS specialists from the US, I found out that the medication and the dose prescribed were known to be augmenting the disease with time. I took this discussion to our sleep specialist who quickly declined to read and discuss further treatment plans for her. Thus began our search for a doctor who would be willing to talk to us about my mother’s disease and care plan. It has been 3 years and everyday, I continue to lose hope that my mother will have good care, if ever.
Struggle for the right care provider
As my mother used to walk all night trying to find relief, I would dig deep on the internet to find a renowned RLS specialist in our country. I came across a well-respected Doctor in a government hospital who was kind enough to meet us and talk to us. Another 2 months passed by under his care with some relief here and there but again, there was a lack of cooperation/discussion with us. Mostly, it felt like we got orders from the doctors and we had to follow it. We weren’t allowed to have an opinion nor were we supposed to find what we could on the internet and this is not a random google search. I’m talking about Mayo Clinic, Johns Hopkins–which are easily the greatest medical powerhouses in the world.
Then in Feb 2020, we had a huge stroke of luck as a renowned RLS specialist visited New Delhi and agreed to sit down with us and talk us through the disease. We spent a good 2 hours discussing the disease and why it happens and how it can be taken care of. The discussion with him sits as clearly in my mind as ever and also makes me wonder why we couldn’t manage similar discussions with our doctors in India in the past 2 years. He had such a kind personality and even agreed to write a treatment recommendation plan for my mother. However when I took those recommendations to our treating doctor, he simply declined to read them and said “The doctor you met doesn’t know much about the disease”.
Today, it has been 3 years since my mother was first prescribed those medications and just last night my mother walked till 6am to find some relief. My mother tries to be as active as possible however, due to lack of sleep, sometimes she is unable to carry out all the activities. Since her disease has worsened, things like yoga have become ineffective. Such has been the despair and stress for us that we have met almost 10 doctors so far and none have been willing to talk us through the treatment plan for the future. The simple guidance from them is “increase the dose. There is no other way”. We had one doctor at a prestigious hospital tell us “if you don’t want to increase the dose, go home and pray that your mother is able to sleep at night ever in her life again”. He had the skill to insult us but when I suggested the updated Mayo Clinic treatment guidelines, he was quick to shrug us off.
Going up on your dose will provide temporary relief but will cause your RLS to worsen over time. Part of the problem is that gabapentin (which is inexpensive and readily available in India) may not be sufficient to help you get off pramipexole. Typically an opioid is needed and I strongly suspect that Indian doctors will be very reluctant to treat your RLS with opioids.
This is a problem even here in the USA and there are very few doctors here that will prescribe opioids for RLS causing many RLS patients undue suffering. I wish I had a better answer for you but unless you can find a knowledgeable doctor who is brave enough to prescribe opioids for RLS, you will likely experience worsening RLS in the future as you increase the pramipexole. "
Where is the right care?
All my mother’s struggles and discomfort at nights makes me wonder, is it really that difficult to expect communication and cooperation with our doctors? There is no working WITH the patient. Imagine struggling with a disease every night only to then struggle with finding the right care as well.
It is not about me knowing more than the doctors nor is it about increasing the dose or adjusting medications. It is about working with the doctors and to be able to communicate with them. It is at the point that I am scared of even uttering words such as opioids to our doctor.
Every night I wonder just how much relief my mother could have if only a doctor sits down and discusses treatment plans or reads the updated guidelines. It could be that easy but it is just as difficult. Nevertheless, I still have hope that someone responds positively. Else, I do not know where we’re headed to 5 years down the line.
I have come across at least 4 other people whose mothers suffer from the same ailments and are treated with outdated methods thus causing them intense discomfort throughout the day. I talked to one a few days back who told me that his mother cries in front of the doctor and expresses that she no longer wants to live. It is not surprising. An untreated/mismanaged RLS leads to increased rate of suicidal tendencies among the patients than the general population.
Source : https://www.hindustantimes.com/more-lifestyle/restless-leg-syndrome-nea…;
The question is still the same. How do we make a difference if we're not able to contribute? Do we let the patients and their families suffer endlessly if the doctors are not willing to adopt updated guidelines in another country? What is our recourse as patients and caregivers?
Additional references used
https://opmed.doximity.com/articles/a-wake-up-call-for-dopamine-agonist…
https://www.hcplive.com/view/john-winkelman-md-phd-when-to-use-low-dose…
