Who Can Relate?

[Pizza_mom]

Getting ready to battle the RLS Dragon

7:00 PM Take 2 magnesium glycinate capsules, 2 apple cider capsules, 1 vit. C and 1 iron supplement pill. Large glass of water. No alcohol, caffeine or sugar.

8:00 PM. Stretch legs

9:00 PM. Visiting grandson is staying overnight. I put him to bed after 3 snacks and two drinks of water.

10:00 PM. Rub magnesium cream on legs. Go to bed. Legs start twitching.

Quickly hook up TENS Unit ( not easy in the dark-trying not to wake hubby.)

10:15 PM practice breathing relation exercises; await sleep.

11:00 PM Still awake. Legs starting up again. I can picture tens of thousands of tiny ants crawling up my leg under my skin. Put on leg compression device for 12 minutes. Compress, release, compress, release, compress, release.

11:45 PM. LEGS IN FULL TWITCHING MODE! Run hot bath and walk around while tub is filling. Add Epsom salts. Soak in tub for 20 minutes. Go back to bed and elevate legs on 3 pillows.

12:30 No sleep. I try to read. 1:00 AM. Legs start up. Get up. Smoke some cannabis. Back to bed. Play game on tablet with screen brightness level dimmed. Eyes start to close.

2:10 AM Our guard dog cockapoo mistakes the newspaper deliverer for a possible home invading criminal horde and barks himself hoarse. Might as well let him out since I’m up. He won’t go out. Back to bed. Thank God the grandson didn’t wake up.

2:25 AM. Dog wants to go out. Hubby pretends to be sleeping. I let dog out. Apparently, it’s too cold to expose his nether regions to the snow so he decides perhaps he will hold it (the dog, not my hubby). I scream out the back door, “Pee, goddammit, PEE!”

Neighbor’s backyard light goes on. Dog comes in without relieving himself.

2:30 AM. I microwave a warmie, wrap it around my leg with a belt to forestall any twitching.

3:15 AM. I awake to the dog trying to tear the warmie off my leg. Suddenly, the contents of the warmie has exploded under my covers. I am now using language that a sailor who has been stuck in a submerged submarine for months on end would blush at. Hubby wakes and tactfully suggests I try to get some sleep. He’s so lucky my cast iron frying pan was not close by. It takes forever to get all the little kernels out of the bed.

3:45 AM. I give the dog a Benadryl (he can take it because he doesn’t have RLS). Get back in bed. Trying to avoid thinking about RLS because it’s susceptible to the power of suggestion. It’s like trying not to think of pink elephants. Sure enough, it’s coming on again. Get up and get the frozen peas. I put the cut-off legs of a pair of leggings on my leg, fold the lower part up and put the pea packets in the “pocket” I’ve created. I can’t take an Ambien because I ration them so I won’t get dependent; it’s too soon.

4:30 AM. Grandson wakes, comes in my room to tell me he can’t sleep. He wants to know why I’m crying. I tell him it’s allergies. He wants to know if he can have breakfast. Groggily, I give him my tablet and tell him to have cookies and play any kind of violent internet game he wants as long as he lets me sleep.

As I recount this tale of woe to a friend over the phone in the morning. She suggests I take some melatonin and put a bar of soap under my sheet. I then made a suggestion of my own as to how she could use the bar of soap. We aren’t friends anymore because she says I’m too cranky.

[Hidden]

Oh man, that is far to familiar.

Can I suggest that you take your iron earlier in the evening, say around 5pm, giving time for it to work and hopefully prevent the RLS starting.

More cannabis. Take plenty, don't be shy. I seem to need a lot more for RLS than I do for my appetite or pain. Also look into Kratom as a possibility:

healthunlocked.com/rlsuk/po...

Are you on any prescription drugs? There are a number of options now available, (although some have very serious side-effects)? The link below mentions some drugs that can be used and also ones to avoid (If you have long term sleep and RLS issues most likely have been prescribed an antidepressant at some stage and they are notorious for making RLS worse):

rls-uk.org/treatment

If you are on drugs, particularly the Dopamine ones then you may be experiencing augmentation. There is a fantastic video on it about half way down this page (mantel's post):

healthunlocked.com/rlsuk/po....

I would suggest longer in the bath too if you can manage it and also standing barefoot in the snow - I find that can really help, (although take care not to stand too long)

You should thank your friend for the soap, using it the only way it will bring relief to a RLS sufferer - put several bars in a pillow case and hit your friend with it a few times. It wont stop the legs but hopefully stop useless information and leave you a little more tired and ready for sleep.

Hope you get some relief soon.

[Pizza_mom in reply to Hidden]

Thanks for your suggestions. I’m not on any prescribed meds for rls anymore. The side effects were too awful. I try to cope with vit/mineral supplements and mechanical things. I know this gets worse the older we get and I’m terrified of when nothing helps anymore. I will try taking the iron earlier. Barefoot in the snow intrigues me. I’ll have to try that. It helps to know other people understand. All 4 of my grown kids are at the beginning of this scourge. I feel for them, knowing how bad it’s going to get.😏

Enjoy the season!

[Graham3196]

Hi Pizza Mum

I sent some info a couple of weeks ago and I'm interested to see if it did any good.

What is your current ferritin concentration?

Did you start a diet or just delete gluten from your diet?

Are you taking any medication for any other condition?

I also have growing "kids" (30 years old) and they have hints of RLS to come. Two have had iron infusions. for one of them it was a complete and immediate fix. Another still has about 80% of her RLS which is quite mild.

Cheers

Graham

[Pizza_mom in reply to Graham3196]

Graham, I completely missed your previous very I formative post. Imprinting it to study and implement anything I can. I truly appreciate the time it took you to write that. Pizza mom

[Ajaxandme]

You are a great writer! I can completely feel your pain, but your post made me laugh as well... I give you much credit for retaining a sense of humor.

I’ve had nights like you described many times- fortunately the all nighters are a thing of the past since starting Neurontin many years ago.

I also take melatonin, magnesium, CBD oil and iron during the day...the typical protocol.

However, without my beloved Gabapentin, I’d be a miserable walking zombie.

I applaud you for not taking RX meds (I know my body is addicted to neurontin at this point and I HATE that fact), still, I can’t imagine going back to the days of fighting this awful disorder all night.

Keep ✍🏼 writing! You’re good! I do hope you get some relief soon.

PS: another RX that is supposed to have little to no side effects is clonidine. I’m not sure if it’s potency for RLS, but it’s relatively safe and inexpensive.

[AubreyT in reply to Ajaxandme]

Melatonin is usually not suggested for RLS-it can trigger symptoms.

[Ajaxandme in reply to AubreyT]

True, it sure can! But only if I take too much. Otherwise it’s very helpful.

[AubreyT in reply to Ajaxandme]

You are lucky. 😃

[Ajaxandme]

Finding that sweet spot w/dosage can be hard. Less is more for me.