Well folks just had 4 good nights sleep,but the last 2 nights have been its usual walking about pain in the arms and sleeping on the settee not good why o why does this happen when you don't change anything,x
Rls: Well folks just had 4 good nights... - Restless Legs Syn...
Rls
Written by
beady3
To view profiles and participate in discussions please or .
37 Replies
•
Hi Beady sorry you are struggling. When you say pain in your arms do you mean the same sort of thing you get in your legs?I dont know why but nothimg seems to work 100% of the time . Hopefully its a blip and you will start sleeping again.If it continues maybe time for a change of meds again.Is it just Tramadol and gabapentin you now.My legs have been silly today but its because I used some antihistamine cream and I have been on my feet alot doing the ironinh! Wecare going on holiday on Saturday so busy getting everything sorted out, Hope you sleep tonight , sending you a hug ...Pippins x
Thanks for reply Pippin,last night wasn't so bad compaired with the night befor,am still on Tramodol I stopped the others a long time ago so let's hope it was just a blip. I hope you have a nice hol with good days and quiet nights if you know what I mean, yes the arm thing is like rls ,hope you take the I pad xx
Beady you aren't still taking the co beneldopa are you?
RLS has a mind of it's own, pretty much. We can take the same meds, do all the same things every day, and if RLS decides to say "hi" it is going to. Am also wondering along with Pippins what meds you are taking now.
Hi night dancer ,hope you are going along peacefully ,I am just on Tramodol and I must say I am pleased with them xx
Rather than take drugs beady3 have you considered that your thyroid might be out of kilter, RLS is very connected to thyroid? Also how are your B12 bloods, magnesium, calcium. Why don't you insist on a FULL thyroid panel when next at your G.P. Surgery and the bloods just mentioned and post them on the Thyroid site here. You might be able to get off those nasty big Pharma' drugs, and manage your symptoms with diet, vitamins and minerals.
Well Margo have you got rls and if so what are you taking? I have had it for 46yrs so you can imagine I have tryed a lot of things the blood is ok and i have mag salts in bath every night but I had never heard of thyroid being the cause of rls thanks for reply
I would like to see a reference that says RLS is "very" connected to thyroid issues. Please.............................................from a web site that has no agenda, and is reputable. All I see, and have ever seen are hypotheses about estrogen dominance and how it can relate to either condition. It is kind of like the dopamine thing, just because some of us do well in dopamine meds (not me) does not mean Parkinson's and RLS are actually related. Having RLS does not mean you will get Parkinson's disease, and so on.
Just take a look at the thyroid site, there is mention of restless legs due to hypothyroid/hyperthyroid.
My boyfriend is hyperthyroid and he has restless legs.....
Yes, but are they reputable references? I am a science fan, like facts. By the way my thyroid is just fine.
I am sure there are night dancer, maybe you need to look for yourself.
Hello there
I'm sorry to hear your news. You must feel shocked and upset. Perhaps when your partner has had a night "off" (although I totally understand what you were saying about him not helping much) you can sit down and have an honest talk with each other.
You could consider going to Relate together where you are both in a safe environment to talk openly about your feelings. Perhaps your partner needs to get his feelings off his chest.
It must be awful for you coming out of the blue like this. I'm just playing Devils Advocate and not standing up for your partner at all.
If you want to chat later send me a message. I hope things become clearer for you over the weekend.
Sending you a gentle hug
Lu xx
Mar go may be that's why we all have rls it's because we havnt had our thyroid checked
I am sure it isn't as simple as that beady3. I just think you need to take charge of your own health and don't rely on the NHS. Get your blood print outs, read up on what they all mean, there is so much information on the internet. You must help yourself, it is hard when you don't feel great, but it is a must.
Good luck!
My boyfriend has it quite bad, or should I say he had it, which was why I was on this site for information. We changed his diet he takes supplements and trying to improve his thyroid status, and things have GREATLY improved. We are expecting a complete recovery, however he might end up taking thyroid medication.
Margo I do hope your boyfriend gets results ,can you tell me what sort of diet he has and what tabs he takes may be it might help some of us on this site x
"complete recovery" implies the word "cured" In 20 yrs never have met anyone who has had a 'complete recovery'.
First of all it is helpful to know what you are dealing with. Get bloods done, most importantly your thyroid status. There is a lot of help on the thyroid arm of Healthunlocked.
His diet consists of vegetables meat, non gluten, no caffeine, no alcohol, no grains. It has helped him enormously.
Supplements:-
Vit C
Vit D3
Nutri Adrenal Extra
Nutri Thyroid support
Liquid Iodine
It is a slow process, but he takes no pharmaceutical drugs. If you can get yourself well you too can avoid putting Big Pharma poison in to your body.
Good luck
Some of us have no choice but to take the Big Pharma "poison" . All what you have said your brother does and takes, is not going to help everyone if anyone. RLS is neurological, certain foods can be a trigger for RLS. Finding what triggers your RLS, can help, but RLS will always be in the background.
nightdancer in reply to
RLS is neurological disease, sleep related movement disorder. In 20 yrs I have never run across anyone who "straightened out heir thyroid" and "cured" themselves of RLS. As Elisse says, and I am saying, this is not our first rodeo, and some of us have quite severe RLS. RLS is a progressive neurological disease, so you, Margo, or your boyfriend, may not have gotten to the severe stage yet, and I hope you don't. BUT, all natural does not always mean all safe, and yes, some of the meds they use for RLS are nasty. But, quality of life and the ability to function are high up on my list, since I manage several RLS groups online, so I have to be able to function. Ability to function=sleep! if we cannot sleep, then we are screwed. So, you have to, as always, weigh the good with the bad. I am glad your regimen for your boyfriend is helping HIM, but that is in the thyroid category. Many of us here have been through all the dietary tests, tried all the natural things that can help some people, and so on. Some of us are left with nothing BUT big pharma, and I welcome it EVERY day. In 40 yrs this is the least RLS I have ever had. So, what worse for one does not work for the next person. If you are not gluten sensitive, then a gluten free diet is not a good idea. Gluten seems to be the latest popular "thing" for RLS. Next year it will be something else. I guess it is better than a bar of soap, though. 
Read the book Grain Brain by Dr. Perlmutter it will give you all the answers about gluten and how destructive it is nightdancer
More proof of a connection beady3 :-healthunlocked.com/thyroidu...
in reply to Margo
More proof!!! And I agree with you, probably 99% of people with RLS are simply not aware of their environmental/dietary trigger. Thyroid is a BIG one. Statins are another. People on here refuse to even do a trial run of no statins or no anti-depressants. The other problem is that once you've been on the strong meds for any length of time your dopamine receptors are so shot that I think the only way to get off them is an iron infusion. As you read the article you will see that iron plays in their too with thyroid hormones:
ncbi.nlm.nih.gov/pmc/articl...
John Hopkins has been doing iron infusions with great success, about 80% "cure" rate. "Cure" meaning they "walk out of the hospital and throw their medications away." That is a direct quote from Dr. Buchfurer, a leading RLS expert.
nightdancer in reply to
The statement that " no one on here" will go without statins or anti -d's is completely inaccurate. I have done BOTH many times. However, I refuse to go back to no meds for PTSD and agoraphobic panic attacks, that are all gone now. I will NOT go back to those awful dark days. Took a lot of therapy and talking and finding the right meds for me. Why I have PTSD is nobody's business, but this is the BEST I have felt since I was 14! I have done the no anti-d's. Never started statins til 5 months ago, so give me that one at least, Sherry75. When you generalize and say NO ONE here will do it, that is jut NOT true. Have you talked to everyone in this group? I doubt that seriously. I assume you see all the posts of people who take no meds at all for anything, we have all kinds of people here. So, do not say to us that people here refuse to help themselves, because that is what you are inferring, and I do not take that well. I have been thru every elimination diet known to mankind. if my gut was causing my RLS I would KNOW it by now. others can speak for themselves, but really sick of you shoving things down people's throats as facts, when you really get down to it, it is only you opinion, like on the NY Time piece you sent in on the DR post. You picked out what you liked from that and ignored the rest. maybe you need to reread some of your own references.
Margo in reply to
Yes totally agree sherry75, all the pill taking you just end up as a drone, and can't think logically. Just where big Pharma' want you.
I think better now since I got rid of panic attacks and PTSD, that is a fact, and since my meds are the right ones for ME, I KNOW I am doing the best thing for me right now.
in reply to Margo
Tell me about it. Well your boyfriend is a lucky man. When you have a partner in your journey through life, you're not 2x as strong you're more like 10x as strong.
Allow me to apologize for the people on here who jumped down your throat for bringing forward this insightful treatment for RLS. Please don't stop. Keep us up to date on your boyfriend's progress. Every tidbit of information helps. Leave nothing out. If he gets a cold and feels better or worse let us know. It adds another piece to the RLS puzzle. Happy trails!
Margo in reply to
I appreciate your kind reply Sherry75. Everything I have written on here is because I have wanted to help others. I have a history of terrible suffering from a very young age. It was clear then I had a thyroid/iron issue. My mother had iron infusions when she was expecting my younger brother, and I inherited most of her problems as did my sister. Looking back at old photo's of myself as a child, I could see by my pallor that I needed iron and I had a very prominent Adam's Apple, clearly a thyroid issue going on then. Fast forward over the years, terrible depression, fatigue, countless operations, so many bits of me removed, ectopic pregnancy, thyroid cancer and removal......When I took over my own health, and tracked down the right people to help me, things began to change. It has taken a long time, but I am now on the right track.
My boyfriend showed signs of low thyroid but his worse symptoms were RLS/excema, fatigue....Bit by bit looking at bloods we could see that his thyroid was malfunctioning. Thyroid problems are so very very common in lots of people, but doctors/specialists/consultants refuse to acknowledge, it is much easier and profitable for them/Big pharma to hand out anti-depressants, statins and the like, then people get worse and worse until another pill is offered and so it goes on.
As I said I only wrote what I wrote with a view to help. However, I have decided to withdraw from this site, and I will keep my opinions to myself and save my energy for John (my boyfriend) and I.
Thank you for your kindness Sherry75
in reply to Margo
Oh Margo, yours has been a spiritual healing as well. You have made yourself whole. And undoubtedly have the ability to do that for others. Your posts show that you are compassionate, non-judgmental and approach others with an open heart. This forum will not serve your path of transformation. The two women who have berated you are essentially unconscious. They have grown-up and grown-old in darkness.
Allow me to impart a gift, a favorite poem
HEALING PATH
Teach me how to gather
The fragments of my soul
Reclaiming lost potential,
I seek to become whole.
Let me find forgiveness,
Embracing a new way to be,
Releasing the hurt and anger
Toward all who wounded me.
Let me heal my human body,
The sacred vessel of my soul,
Mending all the unhealed aspects,
I find within my Medicine Bowl.
Let me find the courage
To face the enemies within,
Healing all my weaknesses,
Honoring the warrior therein.
Let me honor my sacred promise,
To be loyal to my healing quest,
Never deserting my Medicine,
Nor the heart within my breast.
Go forth and conquer Margo
in reply to
It seems you can only resort to name calling. VERY grown up not. Enough of the name calling.
nightdancer in reply to
one more time, as for ME, my thyroid is fine, and this reference is 6 yrs old. What else has happened with this in the last 6 yrs? Just stop, you and Margo can talk to each other. I am DONE
God some people are so rude on here. Dont judge what people have to take for their RLS. Margo you have never had RLS, so please do not think you can tell people what they should or shouldnt take. !!!
nightdancer in reply to
Agreed, Elisse. Margo, I know your boyfriend has RLS, but you do not, and I hate to say but we who have been researching it and living with it for decades know by now what to do for OURSELVES. you do not have RLS, you do not have the knowledge, and Big Pharma is not shoving anything down my throat that I do not want or need to take. Do not judge lest you be judged.
Margo in reply to
Elisse/Nightdancer. I am not telling people what they can or can't take. I don't really care what you do. I was only showing another way.
I don't care if you want to take your pills, it doesn't spoil my life. Carry on!
You said peoples who take pills are drones. That is sitting in judgement on what people take.
nightdancer in reply to
"Pharma Poison" is also judgemental. I have no problem with people doing what they think is best. So, I do not expect to be judged. I envy people who do not need meds, but I know by now, what my body needs. 90% of the people here and in my groups (about 5,000 people) are on some kind of medication. and natural supplements and vitamins are technically made by pharma companies, at least some of them. Lots of us are on combination therapy, "natural" and prescription meds. my nephew has to take Metformin for diabetes, his meds he needs for his schizophrenia are the only things keeping him out of the hospital, and alive. So, meds just are necessary. Thankfully he does not have RLS on top of Autism, Schizophrenia and diabetes. My sister, his mother, does have RLS and PLMD. he is 26 now, so we are hoping he will not develop RLS later in life. He was also born 3 months early, so he has had enough stuff. But, meds have helped him to survive and he was able to attend college and get a degree in computer science. 
So proud. So, if a person needs those meds, then they have to take them. You can't tell a diabetic not to take insulin.
Not what you're looking for?
You may also like...
RLS
me from coughing all night long.......the problem is that I have trouble sleeping and it is very...
is it RLS?
hi all, I have what I can only describe as chronic leg pain and I’ve had it since I was about 12....
Rls
I just want to say I’ve suffered badly with rls and insomnia for years and my sleep pattern has...
RLS
It’s 2.30am no sleep and no prospect of sleep
I look out of the bedroom window and the street is in...
RLS +
now seem to have progressed to whole body jerks. It's like when just going off to sleep you think...
rls
RLS
RLS
Is this RLS? 
