So I was only diagnosed in the past year or so but I’ve experienced symptoms pretty much since I’ve been of walking age. When I visited my doctor other than routine blood tests I was only given a printout from a website and pretty much told there’s nothing that can be done and that it might get better with age (I’m not even 20 yet). I’m not sure if it’s because I’m younger or that the syndrome isn’t as widely researched but I felt like I wasn’t taken seriously considering the amount of time I’ve suffered with the condition and how painful it can be at times. So I was just wondering if anyone had a similar experience to me and if you did anything about it?
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I’ll write some more soon but first you need to see/ get a new doctor. There are lots of treatments for RLS. What were your blood results- actual figures.
I wasn’t given the exact test results I only know that my iron levels and thyroid was tested and the were both fine. The only treatment the doctor mentioned was dopamine but he said it wouldn’t be suitable for me.
Iron levels which are fine for the majority of people are not fine for RLS. Your serum ferritin has to be above 100 ( some experts believe it should be nearer to 350) & serum iron should be above 60. Call the surgery and request the numbers. Raising ferritin and iron resolves 50% of RLS cases so it is vital you find out the numbers and raise your levels.
Magnesium helps many people as well so buy some magnesium citrate and start taking every night. Keep a food diary and note if you have a bad night. Changing diet by eliminating trigger foods can really help.
Your doctor sounds dreadful- to tell you that you’ll grow out of it and that there’s no treatment is really bad advice. Hardly surprising as doctors know nothing about the disease or how to treat it. The only correct thing he/she has said is that dopamine agonists are not suitable. They are no longer first line treatment and should be avoided as there are better treatments.
Spend several hours reading the comments and replies on here and visit the main RLS UK site. Read the pinned posts.
You’ll learn about the main treatments and drugs to avoid, like anti depressants and anti histamines which can cause or worsen RLS.
We have to educate ourselves because doctors and neurologists are not taught about RLS at med school.
But as I have mentioned above, get the blood results.
If levels are below the figures I mentioned, buy ferrous bisglycinate ( gentle iron ) in pill form and skin patch from PatchMD and take every other night to raise levels faster.
Thanks for the info I’ll try getting hold of the results. It’s quite shocking that RLS isn’t taught in med schools especially because of how much it can impact on people’s lives
Just to offer my sympathy. Not surprising really, but how ignorant of the doctor to say you'll grow out of it.
As Jools says, there are treatments, the first line medicines now being either gabapentin, pregabalin or if you live in the US, gabapentin enacarbil.
Since it sounds like the same (ignorant) doctor gave you the RLS diagnosis it might also be worth checking that you do have RLS, not something else.
You can do this by comparing your symptoms to the recognised criteria for RLS.
Just on magnesium-- I notice a few posters taking quite high dose ( which are in the manufacturers instructions) .For citrate you could start at 100 ( even though the recommendation may be 800+)
Mg is a very effective laxative.🤪
Also ,while on the subject of mg, do not take it within 3 hrs of most other medications, especially Gabapentin or Pregabalin.
Well, I agree you need a new doctor! The growth demands of children put a big demand on iron stores hence "growing pains" an RLS type condition reported by children. I had this as a child (under 10 years old, I'm in my 60s now). Anyway, I was treated for iron deficient anemia (with a supplement I assume) and it apparently resolved the growing pains. Fast forward to a few years ago - wham, severe RLS - docs said iron was normal (Ferritin 49). It took me months to first even know what I had - I had to tell the docs I think it's RLS - then to decide it was indeed the low iron levels. The RLS connection is low iron levels in the brain - some suffers have super high serum Ferritin levels and raging RLS. You can read more about iron's role in RLS here... hopkinsmedicine.org/neurolo...
Hello,
To feel that you're not being taken seriously is such an awful feeling -- in general and especially when you are suffering so much. I am so sorry!!
My RLS journey unfortunately includes having lost control of my treatment direction for awhile. Psychology was focused on instead of my physical pain. I want to pass onto you what I did to get my medical team to take me seriously. I did the following because I had had it:
I wrote down my situatuon in 3 parts -- 1. what I was physically experiencing 2. how my physical suffering was causing emtional suffering and how both were making me feel and 3. how they (my doctors) were making me feel. I started with the words "imagine yourself in this scenario" in order to make it as personal as possible for them. I wanted them to "live" a day in my shoes.
The reception I got was that of overall respect and changes were set in motion. Change can be slow, which I learned can also unfortunately include a patient's care (in other words, changes to my treatment were slower than I had hoped for). They were slow, but they were there. As should be, I am now in control of my RLS treatment.
Hello SWJW12, I have a problem with my doctor/PCP. My PCP after 17 years of prescribing Ropinrole found "guidelines" from somewhere and cut my prescription from 4mg 2 x's to 4mg 1 x daily. Unfortunately he did this without my knowledge. After all these years I do not usually look at the label so I find out he did this by my insurance company not paying for the prescription they said I was filing it to early. So, here I am stuck without any medication because it would be 15 days before the insurance company would pay even for the 4mg 1 x daily. Ever go through drug withdrawal.... now I know what drug addicts go thru while going thru withdrawal. My daughter had to rush me via EMT's to the hospital because I was so bad. I do not remember most of that night. My PCP then made me make an appointment with a neurologist who told me I do not have RLS but have something wrong with my spine and needed surgery. I saw the report from the MRI specialist and it said there was nothing wrong with my spine. I tried to make an appointment with another neurologist for a second opinion but had to get the first neurologists approval. So now I have to see this first neurologist again for what I do not know. Okay, so now I have to learn or discipline myself on a 4mg tablet so I break it in half and take 2mg between 6-7pm and the other half at 11pm. I told the PCP that they were just "guidelines" and they were probably figured out by average and that he has known me for 17 years and should go by my "guidelines" but no such luck. To say that I am in great misery is putting it mildly. If Ropinrole sold via drug dealers I would take my chances and buy some.
Because of the COVID19 virus my appointment with the neurologist is via telemedicine so I took a couple of notes from your reply and jotted them down. I hope you do not mind. I am going to form a speech, of sorts, to get my "virtual visit" with the neurologist off on the right foot. I am hoping that with this MRI report and what I have to say he will help me out.
I am always researching new treatments, some of them I have seen on here. To be feeling this since I was 11 years old (I am 70 years old) is not right. I can't believe that for as long as RLS has been around and there are so many of us something has not been done by now.
Hi there! First of all, I don't mind at all! It is my hope to help others, so please jot away!
Secondly, I'm so very sorry to hear your story.
What we go through is torture and to have words like "psychosomatic" attached to that is a huge insult. One of those on my medical team was a pysiotherapist. She had been referred to me by my psychiatrist. Since I like to keep an open mind about things treatments, I continued with her for a couple years. It was actually helping some! But I couldn't shake my feeling that the psychiatrist had sent me to her to calm me down. Although the psychiatrist said that was a big misunderstanding on my part to feel that way, it didn't change my initial feeling. The pysiotherapist saw my pain and we stopped treatment. Was my psychiatrist ever surprised to hear that!
Here is something you might be interested in:
Around the same time that I stopped treatment with the PT the laws were changed regarding a patient's referral to PTs. When I started seeing the PT, it stated that a referral by a specialist was required. As I was going through the process of ending treatment, my PT told me that referral by a specialist was no longer required -- that the patient could decide for themselves if they wanted to see a PT or not! I like to think I had something to do with that.
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