Got to a point where I can’t take anymore....looking for advice please ☺️

[Woody42]

Had RLS for years but have now reached the point where my well being is getting affected. Been taking Zapain for approximately a year and using massage sticks but still struggling. Can’t sit and watch tv and finding it increasingly difficult to sleep....I am 42, consider myself to be quite healthy otherwise (do a little bit of running when I can and walk my two dogs for roughly 3 to 4 miles a day) thank you in advance Rachel

[Leelee49]

Hi Woody, I think we’ve all been where you are, I know I have. You will get some great support and help on here, there are a lot of knowledgable folk, and I for 1 would like to say a big thank you to all those that reply to my posts with there wealth of knowledge and advice, it has been a godsend. Stay strong, someone will be along to help you soon, sorry I can’t advice, my memory is somewhat screwed at the moment xx

[yam1973yr5]

Hi, press hard four fingers up from your ankle bone to see if its sore if it is let me know.

[Woody42 in reply to yam1973yr5]

Yes it is sore Rachel

[FLAME43 in reply to yam1973yr5]

hI YAM I HAVE JUST DONE THIS AND IT IS SORE, WHAT DOES IT MEAN

[Kaarina Administrator]

Hi Woody42, have you had your serum ferritin levels checked? For RLS sufferers the level should be higher than what the doctor calls normal. Are you taking any other medication that may be making your RLS worse? rls-uk.org/treatment/ Some sufferers find that taking magnesium or using a magnesium spray on the legs helps.

[Hidden]

Hi Rachel,

Sorry to hear that you are struggling. As Leelee says, I think it’s fair to say that we’ve all been at our wit’s end. Just this morning (11 hours ago) I told my husband that I didn’t want to live struggling everyday with sleep and that it wasn’t fair. It was too much. I’m okay this evening, though. We just have to cherish the bright moments we have. I am one of the ones who have a certain amount of success with magnesium spray. I have a slew of other things I use, but don’t have the energy to list them now. I will follow this post (as a reminder not to forget about it), and list my regimen when I can.

Take care,

Jessica

[Hidden]

Hi woody, look at the link that Kaarina has posted for you, it will give a list of what meds are available to use for RLS. Its all trial and error, as what helps one person doesnt help another. Many on here have found a non medical remedy which has helped them. For me personally nothing but meds seem to work for me. On the right side of this page you will see it says topics, one says non medical treatments if you want to try any of those out. I struggle every night and every day, so do many of us, so you are not alone.

[Woody42]

Thank you so much for all your advice and support much appreciated ☺️

[involuntarydancer]

Woody, do also check out the counterindicated substances to make sure you’re not inadvertently exacerbating the legs. For example anti-histamines and benedryl (often in cough syrups) are both exacerbants as are many anti-depressants and commonly prescribed drugs such as amitriptyline.

I would second the recommendation regarding iron (of Kaarina). Current thinking is that serum ferritin should be over 100 for RLS sufferers so you need to get the actual figure from your GP (they habitually tell you you are ‘normal’ which can be as low as 20 in the general population but is no good for an rls sufferrr).

Raising iron can make a big difference to many (though sadly not all) sufferers. Experts in the US regularly treat RLS with iv iron infusions.

Check out the Rls section of the Johns Hopkins medical website for loads of useful info and webinars.

[martino]

I take Zapain but only in between doses of Gabapentin. You may need that or something similar or a dopamine agonist. Do have a look at the link Kaarina has given you.

[Kells22]

Hi. Maybe try Dihydrocodeine? I was taking co codamol for 3 years and they stopped working. Went through hell for another 3 weeks or so,trying different meds and now I’m settled on Dihydrocodeine. I take 2,30mg tabs about 4pm and then another 2 at 8pm. X

[Hidden]

I feel your pain, your not alone. The advice here is all sound - its trial and error. I was lucky that Gabapentin and codeine has worked for me, to a point. I found (by accident) that caffeine triggered mine, but then some people find caffeine relieves the pain (hanging my feet out of the covers at night also seems to provide some mild relief - something to do with the heat difference). There are lots of advice on the site about changes to diet which can be useful and some foods do seem to be triggers (Thai food, cherries, watermelon seem to be triggers for me). Also, I'd go to your doctor and ask to be referred to a psychologist or therapist (or pay for one if you can afford it) - it won't help with the RL but it will help with the stress and darkness that surrounds it, well that's my experience anyway.

[Hidden]

Hi Rachel!

As promised, here are the things I try. Some work, some don’t, etc. which is why I have so many:

-hand-held heated massager

-putting my jet spray massager (option on my showerhead) right up to every inch of my legs. The pounding feels wonderful!

-magnesium oil (helps with pain and sometimes the movements)

-knee-high compression stockings (the tightness these provide helps calm smaller movements)

-Magnilife’s «Relaxing Leg Cream». Can get on Amazon or Walgreens if in the States

-Lidocaine Plus Pain Relieve Liquid. (Does a good job at desensitizing the nerves)

-soaking in warm water (I swear I can feel the blood start to flow again!)

-Rife Frequencies (like binaural beats and best used with headphones. Type «Rife frequencies rls» into youtube and it will come up with a couple sessions)

-exercise that focuses on strengthening the leg muscles (ex. knee bends, weight lifting, etc.)

I’m sure I’m missing some (have taken some away, have discovered new ones, etc.),, but hopefully one of these will help! RLS is hell and we just need to do what we can to live with it.

[Woody42 in reply to Hidden]

Thank you so much for taking the time to pass on your advice, experiences and information. It is really helpful thank you. Will let you know what works best for me and keep on trying to be as positive as I can Rach x

[Hidden in reply to Woody42]

you're welcome! Take care!

[Hidden]

Hi Rachel! Forgot one:

3 exercises for rls can be found halfway down this site:

healthline.com/health/restl...