Driving me insane

[Chelle1234]

Help

[involuntarydancer]

Chelle1234, you sound in a bad way but it is difficult to know how to help without more info. Let us know a bit more about what is going on with you.

[Chelle1234 in reply to involuntarydancer]

Hi

I have rls for years now.. I am 47.

It has got lot worse over last 6 months, at my wits end.

[involuntarydancer in reply to Chelle1234]

Bad rls is appalling - almost unendurable.

Do you take any medication for it? Are you on any other medications such as anti-depressants, benedryl (in some cough mixtures), anti-histamines, zantac (all of which can make rls worse). Have you had your iron levels (serum ferritin) checked? Raising iron levels can help a lot and plummeting iron levels can set off rls or make it worse. Have you had any other changes in your regime that might have caused it to get worse.

[Chelle1234 in reply to involuntarydancer]

I am on hrt.. Not long started.. Anti histamines.. And setraline.. Have started Ropinirole....

[involuntarydancer in reply to Chelle1234]

Some anti-histamines are bad for rls. I think claritin is ok but you can check on the earls website - there is a section on what makes it worse. Have you been taking ropinerole long? It is a drug to be cautious about. It can work really well, particularly at the beginning, but if you increase the dose it can start to cause problems - it starts to feed the condition in a process known as augmentation and makes everything much worse. And to add insult to injury it is VERY difficult to discontinue once that happens - the rls goes through the roof and it is impossible to get any sleep at all for a while. Many health professionals are completely unaware of these problems.

Most rls experts now use iron as a first line of treatment. It is important to get yourr serum ferritin checked and get the actual figure - not just that you are 'normal'. Rls sufferers need to be over 100 and 'normal' can be as low as 20 which is no use for us. If your level is below 100 you should consider starting an iron supplement.

[Chelle1234 in reply to involuntarydancer]

Thank you so much for advice.. I have doc tomorrow.. Will try say in a nice way.. Do u think gabapentin any good

[involuntarydancer in reply to Chelle1234]

It works well for lots of people - and then there are some for whom it is ineffective. My own view is it is definitely worth a try. I think it is optimal to treat rls with a combination of drugs each at a low dose. This enables a gradual move back and forth between them to avoid dependence and also reduces the risk of side effects from a large dose of one drug. Good luck with your GP. It is a recurring theme on here that doctor's are woefully under-informed about rls. Some are happy to accept the research of their patients who often end up much better informed than the doctor. Unfortunately many are deeply resistant to accepting research even though it is often very up to date and well informed. I would definitely press for the serum ferritin test. Often raising iron levels can have a very beneficial impact and it is obviously a relatively low impact form of treatment.

[Chelle1234 in reply to involuntarydancer]

Thanks will keep you posted

[bauerannec in reply to Chelle1234]

Hi,

I agree that when you see your GP,ask him/her about checking your iron levels, I just started taking iron tablets 26mg.,I'm hoping that it helps my restless toes syndrome. Also have you had your vitamin D levels checked? my Doctor took blood and the results said that I am Real low on vitamin D so he prescribed Vitamin D2,50,000mg. I'm anxious to see if it makes my RTS better.

I am taking ropinirole for the rts,it really helps me,so much that if I go somewhere and leave my ropinirole at home that night I really suffer,besides losing sleep ,now if I go somewhere I make doubly sure I have my ropinirole in.

I hope you have good luck telling your GP things that we have suggested. Let all of us know how your visit to your GP goes.

Good Luck and God Bless!

Annelle

[Oscarsaurus in reply to Chelle1234]

I take 1800mg of gabapentin for back and joint pain but it doesnt make any difference to my RLS which got progressively worse when i decreased my morphine tabs. Everyone on here are brilliant so if you need to know anything theres always someone to help. Good luck to you

[rls_optimist in reply to involuntarydancer]

Hi, dancer, can you tell me where you read that Zantac can aggravate RLS symptoms. I haven't come across that one. Thanks.

[marsha2306 in reply to rls_optimist]

Not for me...

[Kaarina Administrator in reply to rls_optimist]

Zantac is mentioned on the RLS-UK website as a medication to avoid as it can worsen RLS symptoms

Antacids: Medications to treat nausea can worsen RLS symptoms. This class of drugs includes: Anitvert, Atarax, Benadryl, Bonine, Compazine, Phenergan, Thorazine, Tigan, Trilafon and Vistaril, Zantac.

Medications to Avoid are listed in this link: rls-uk.org/treatment/

[involuntarydancer in reply to Kaarina]

Thanks Kaarina. You saved me some work!

[Hidden in reply to Kaarina]

Whats in Zantac a antacid that bothers RLS. Anyone know. ? As i havent heard of a antacid which makes RLS worse, or is it just zantac. ?

[Hidden in reply to Hidden]

I have been trying to find out about Zantac and the info i got is it doesnt make RLS worse.

[nightdancer in reply to Hidden]

I have never had a problem with Zantac. It is an antacid, not like the anti-nausea drugs like Compazine and Phenergan. I have ulcers and I use zantac and other meds like it all the time. We never know til we try.

[involuntarydancer in reply to Hidden]

My pharmacist warned me about Zantac worsening rls years ago but I have also seen it on lists as counter-indicated. I don’t know what active ingredient is supposed to be the problem.

[Syvxdhkoy]

Things that help me:

Iron supplement every other day

Magnesium supplement and/or spray on legs

Making sure I get enough potassium from food or v8

Coffee in the middle of a bad episode even in the middle of the night

CBD oil

I hope you find some relief soon!

[involuntarydancer in reply to Syvxdhkoy]

I like your post Syvxdhkoy. And also your suggestion if 20 mins in child pose which you make elsewhere. I sometimes use this with intermittent success. Another physical remedy is proppping legs up straight against a wall for 20 mins (lying with backside as close to wall as poss). It sometimes affords relief. I also find compression stockings at night - after applying magnesium rub is helping me at the moment.

[Syvxdhkoy in reply to involuntarydancer]

Oh yes, how could I forget child's pose?! Thanks! Definitely a good suggestion about propping your legs up too.... anything that gets blood to move thru your legs with a little more pep! I use that child's pose every night... even when I have zero symptoms. Most likely it's just in my mind, but I like to think this is preventing symptoms. I've had such good luck lately. Not sure if it's something I'm doing differently or just a lucky stretch of time for no particular reason. I did start taking L- Theanine, Turmeric Curcumin and CoQ 10 in addition to my iron, magnesium, multi-B vitamins and vitamin D. Geez, I wonder if I even need to eat? I hate spending a fortune on all of these supplements but if it's what works right now, I'll keep at it until it doesn't.

[involuntarydancer in reply to Syvxdhkoy]

You must rattle when you walk! I have tried a myriad of supplements also - hope springs eternal! And on the subject of hope, I really do hope your good patch continues for a long stretch. Maybe your iron levels are rising to a point where symptoms are beneficially affect red. Fingers crossed.

[Pippins2]

I have taken Zantac on and off for many years and it doesnt worsen my RLS so i am very suprised and interested to see that is listed as a med to avoid x