Hi everyone, does anyone suffer with restless leg syndrome? I have had this for a few years but over the last couple of years it has got much worse. I have been told that it is probably a side effect of antidepressants. That's a conundrum that is not easily solved. I have also read that it could be connected to an iron deficiency. I am at the stage where I am utterly desperate to find an answer.
Janet xx
Hi Skye333 - I have Chronic Anaemia with my ET and was told that RLS can be connected to iron deficiency, it can also be a sign that you aren't hydrated enough (so you blood isn't flowing around your system as it should) - If your RLS is worse at night, try drinking 2-3 glasses of water before bed.
I use Magnesium Oil Spray its fabulous stuff, you can get it from any Health Shop and also a bath with Epsom Salts is very helpful too. I hope this helps 😊
Sorry I replied to my own post instead of yours, this either proves how tired I am or I have totally lost the plot.
Janetxx
Hi thanks for your speedy reply I will definitely give all that a go although the bath one is difficult as I only have showers. I have started drinking more water so I hope that helps. My problem is that at the moment it can start anywhere and anytime of day or night. I only have to sit down and I have to jump back up again and it can last for hours at a time.
Janet xx
Hi Janet, I too have RSS and it tends to come on in the early evening. It, along with the itching are the worst symptoms I have. I've had the RLS for years, long before my PV diagnosis 2 years ago. I've read that the cause is a lack of Dopamine, which decreases by evening. I saw my GP about it last week and she says that there is a drug which is a Parkinson's drug (that is a disease to do with a lack of Dopamine as well). My GP says it is to be taken before bed and it gives you a good night's sleep. But she doesn't know how it would react with my Hydroxy and other drugs, so I'm leaving well alone.
One thing I do find is even the smallest amount of alcohol seems to make it worse. I only ever have a small glass of wine over the weekend, but I've stopped that and it seems a bit better. I've heard that a lack of magnesium can be a factor, so I'm going to ask for my mag. levels to be tested at my next blood test. Meanwhile, I'm going to give the spray a go. Keep in touch, and let me know what helps and I'll do the same. My poor husband, some nights, must wonder what this maniac is that's jumping around next to him!
All the best from a fellow suffered and sympathisers,
Sandra
The Magnesium oil spray would be great for you if you only have showers - please let me know how you get on xx
I will get some magnesium oil spray tomorrow and let you know how I get on although my GP has increased my Pregabalin to the maximum dose today so it might be hard to tell which will work the best. I don't know why I have never heard of it before as I've searched the internet for remedies.
I will let you know
Janet x
Magnesium deficiency. I suffered for a long time and now I take magnesium daily and RLS is gone.
Wishing you well
Hi Janet.
I have PV and very low ferritin levels and when I get RLS it seems to last for a few days to a week, always in the evening and worse at night, then it goes away for weeks to months with no rhyme or reason. I too will try the spray when it next happens. Good luck. Mel x
Hi well pod please I have just received two Halcyon bracelets I ordered. I am desperate to try anything so watch this space. I may sleep tonight and I may sit on my sofa to watch the tele instead of circling the coffee table all evening. X
Janet....Desperate for sleep. X
Hi, I have ET and suffer terrible RLS and its worse in the evening sometimes it unbearable I'm not on antidepressants and have never been on them so this cannot be the reason for the RLS. I really believe its our MPN and when we get tired its much worse hence the evening and night times its worse. Its the fatigue that brings on my RLS.
Hi Janet, Me too, except that I haven't taken any antidepressants. Like you it has gradually gotten worse over the years and sometimes it is really bad.
I am not sure if I am iron deficient, but I would think that it would have shown up on my numerous blood checks if I was.
Is it possible perhaps that it is a symptom of ET. I think that mine went undiagnosed for years.
I wish you well and hope that you can find and answer.
Hugs,
Marcia
Hi Marcia and all you RLS sufferers. I was quite sceptical about these bracelets but I have to that I reckon they work..... I have worn them since 4.30 and I would have usually started my special dance routine by the time we sit down to dinner. But magic oh magic I ate without fidgeting.
Went to watch the tele (about 7pm) and still no dancing. At just turned 8pm it started in my left ankle and foot and lasted until 9pm then disappeared. Still no sign of it so I'm going to turn in now. Wonderful evening shame about the TVs programmes. It's amazing I feel so relaxed at the moment😴Will update in the morning. Xx
I've suffered rls for 20 years... I get it in both legs and arms. It's a nightmare. I've even had it in my face.... I'm on Gabapentin for a different problem Allodynia. And it's helping. I was short on folic acid so I take that. So I take a cocktail on a night of 2 amitryptilene. 1 Co codomol. 1 folic acid and 1 zinc. And it's been good..... I hope u find our what's causing yours. Just a note... some cancer drugs can cause peripheral nerve damage so I'm thinking these can also cause rls.
I suffered a bit from this a few years ago but not now. My only suggestion is to check the archives because I think this issue has been raised occasionally over the years. Cheers.
Hi I'm so pleased your RLS has disappeared. I don't know if you read a previous reply I did but I have discovered a magic potion so to speak. I am wearing 2 Halcyon bracelets. I put them on at about the time my RLS would normally start. I have worn them for 3 days and each day it has been greatly reduced so today I have not had any pain at all. It is such a relief only RLS sufferers will understand
. The bracelets are about £22 for the two but I would gladly pay soooo much more.
Feel so relaxed tonight.
Janet x
Recommendation on Haematologist in London
Stem Cell Transplant 
MPN-MPN-total liver protein - decreased protein synthesis capacity of the liver
Aspirin still required after blood counts normalised ? 
Polycythaemia ruby vera & covid vaccine 
