I dread my bed

[sjrd50]

Hi all. I'm new here so please be gentle. I have had RLS for as long as I can remember and it's still beating me. As a child I had bad 'growing pains', and acute anaemia, then in my 20's, acute leg pains which I put down to standing long hours at work. I would have to press my feet against a solid surface until the veins in my legs burst which brought some relief.The RLS started around the same time ,early 70's and is just something I have 'put up with'. Over the decades I shudder to think of the amount of sleep I've lost. I have tried Magnesium tablets, sprays, quinine, Ropinerole (made me nauseous), cool mats, cotton bedding, raising the end of the bed, etc. I get this in my arms too which is a double delight. As the RLS seems to kick in when all the cool spots in my bed are used up, I know then that I'm in for yet another sleepless night. I literally dread my bed. I didn't realise it was so common until I found this site in desperation for some relief as have zero faith in the medical profession.

[Lapsedrunner]

You mentioned having been anaemic previously. It would be worth having your ferritin levels in particular measured as having low iron stores can be a big factor in RLS for some people. Have a look at the pinned post re “Iron” on the main page for more information.

We can all identify with dreading bedtime but there are helpful things out there!

[sjrd50 in reply to Lapsedrunner]

Thanks,I will look at that. I recently had blood tests for another issue so will check.I am a regular blood donor so presumed my iron levels would be ok. Also a vegetarian.

[Madlegs1 in reply to sjrd50]

Highly likely that you will be low in ferritin. ( Under 100)

Serum ferritin is the test you need. Blood donor clinic wont give you that one . They just tend to check Haemoglobin . Ask for it next time.

Might be worth taking vit b12 as oral spray-( methylcobalin) for a month.

Good luck.

[Hidden]

Hi sjrd50. Sorry to hear about your experience.

Just a quick and immediate reaction to your post, which I may add to later. "Dread the bed" is a classic psychological consequence of RLS and is something I have experienced myself.

one remedy is the "15 minute rule" which is, if you go to bed and aren't asleep within 15 minutes, then get out of bed.

This will prevent "bed dread" and the anticipatory anxiety which it leads to. It doesn't do anything whatsoever directly to relieve RLS symptoms. However, it can bring some improvement to our quality of life.

I'll post more on this and "sleep hygiene" later.

[sjrd50 in reply to Hidden]

Thanks for your reply. I know if I'm not asleep within 5 minutes I may as well get up as my legs will have already started to 'dance'.I go to find a cold floor etc. I sometimes feel like I'm plugged into the mains.In desperation I have rigged up a tower fan horizontally at the end of my bed to blow under the duvet and set on a timer of 2 hours and it is absolute BLISS!!

[RWick in reply to sjrd50]

I have a Sleep Number twin mat that cools/heats on top of my side of the mattress that really cools very well. Pricy but I happen to also need the heat in the cooler months for neourphy in my feet.

[sjrd50 in reply to RWick]

I have not heard of these so will see if they are available in the UK.I have used my dog's cool mat in desperation but find it's hot in no time and also slides about.Thank you for your message

[Parminter]

Hello sjrd - Your story will be familiar to many of us, sadly.

Much as I dislike pharmaceuticals, those of us with severe familial RLS have to give into them in the end, as all the little potions and strategems, while helpful to a degree, will not stop the problem.

Familial RLS is fundamentally about the inability of parts of the brain to store iron, which is a crucial lack, and the only way we can tell if we have sufficient iron is by measuring ferritin - or you could cut off your head, which is not advised.

So see to that first, and if the level is very low you may need IV iron infusions to get it up high. (My own level went from 20 to 290 with iron infusions, and it helped a lot).

Then you need to try the usual RLS drugs - some form of dopamine agonist, perhaps the Neupro patch, or gabapentin, or an opioid, or some mixture of two or three of these.

Nearly all of us have had problems with medical doctors, because 95% know very little.

But you have to keep fighting to find the small percent who can and will help you. Or, if you are like me, you do all the homework yourself, become really knowledgeable about the condition, and then take the scientific evidence to your GP.

My story was almost exactly like yours until I took this latter path - now I am symptom-free and I sleep well every night.

I still take all new information to my doctor - and he is very grateful, as he has other patients like me whom he could previously not help. Good doctors like to help, if only they know how.

Use those sleepless nights to study.

[DicCarlson]

Ah - I remember the growing pains and being treated for anemia as a child - maybe 8 or 10 years old. That was it 'till 65! Severe RLS - NO SLEEP. Of course my docs had no clue. I could sleep (maybe 2 hours) with my legs almost vertical supported by cushions. By and by I discovered a "home remedy" black strap molasses. Taken at night 2-3 tablespoons. Well - it cut into the RLS. It is the iron in the molasses that did it. I then started on the Ferrous Bisglycinate Chelate and never looked back. Ferretin went from 49 to 109 and percent saturation also went up. I haven't taken any iron supplements in many months. Still bothered by insomnia but RLS is now rare for me. Why this all happened - no clue, but I'm leaning toward SIBO as the root cause.

[sjrd50 in reply to DicCarlson]

Thank you for your message.How do you take the molasses? As it is or in a drink? I will try that as I'm willing to give anything a go.

[DicCarlson in reply to sjrd50]

Molasses by the spoonful - 2 or 3 at a clip. But really just try the Ferrous Bisglycinte Chelate - it's a patented formulation by Albion and sold by many retailers (also called Gentle Iron). Get your Ferritin level checked. This is what I read originally...

hopkinsmedicine.org/neurolo...

[Sara_2611]

Ive had RLS since middle to late 2000s. I had no idea what I was until I went to my doctor & gave him the full details as to what was happening & straight away he said RLS & he prescribed me Balneum Cream super plus & which works for me (although its for rough skin/skin conditions -it calms down my RLS no problem

Its not for everyone though .everyone's skin is different

[sjrd50 in reply to Sara_2611]

Thanks Sara, I will try the cream.

[Sara_2611 in reply to sjrd50]

Hi Ok fine - I have to make the point that you are doing it at your own risk as I said in my message its not for everyone because everyone's skin reacts differently to any cream they use

I have to make that point because when I first joined this site & mentioned the cream a lot the administrator told me off -quite rightly to be fair - because the cream isn't for every one -it is normally for skin conditions -dry skin but works for me - the administrator was quite right t tell me off - so I thought if I was going to mention it -then I should make that point

so if I was you -might I suggest that you talk to your doctor first to see whether it is suitable for your skin - because it was prescribed by my doctor I didnt just go & buy it

Good luck & hope you manage to find a solution

[lynnmcguire24]

have you tried Procure Epsom Salt rub gel? I use on my legs & it helps with RLS. I find it Walmart.com