A lil about my living nightmare

I feel so alone

Hv been told by doctors that theres nothing wrong with me 

That its in my head

Been told to jus stop it

Feels like something more than restless leg syndrome 

I hv pain episodes that come and go without any warning but hv lastest up to ten hours

Can u imagine ten hours of torture a day....everyday for over a year

Countless trips to emergency 

Over fifty pages of blood tests

Raised wbc count

4 bouts of pneumonia in a year plus three chest infections

And finally a diagnosis of severe chronic rls...

Now for the pain....omg the pain...like nothing iv ever experienced in my life...and i kno pain. Lost a sis to cf...my sons dad was murdered...i hv been on the streets as a teen addicted to heroin...i hv been in extremely abusive relationships....i hv withdrawn from most addictive drugs including methadone twice and given birth to three boys so i kno pain...all types...but this is almost indescribable 

The best way to describe it is to say it feels like there is poison in my blood...or at times like theres someone trying to rip the muscles off my legs...like torture but they wont let u die

I twist twitch writhe stretch jerk my arms my legs my neck trying in vain to get some relief 

I get vertigo 

Sight sensitivity 

Cant walk

Feel drugged

All i can do is scream.. thrash about moaning crying begging for someone to cut my legs off....

When these pain eps happen i need heat....straight hot bath...all house heaters cranked to full...heat pad on bed...heat paks on legs/ankles

My partner tries his best to help

He runs baths

Massages my legs

Helps me to bathroom 

Undresses/dresses me

Dries me

Helps me back to bed

But even his best efforts do little to relieve the pain

I am on numerous meds

Sometimes they help

Sometimes they dont

Does anyone else suffer like this?

Not that id wish this on my worst enemy but jus to kno someone understands

Please help me feel connected

I hv absolutely no quality of life 

And am goingthruhell

30 Replies

  • To say it is all in your head is awful, a lot of people with rls get told the same, although these days it does seem to be taken a bit more seriously thank goodness.  No wonder you feel let down and desperate. You obviously need ongoing help, be persistent with the doctors. I really don't know what else to say. 

  • Thanku for ur kind words...i really appreciate ur reply...

  • You have my utmost sympathy. I was fortunately diagnosed quite quickly and, like you, have chronic RLS. I can empathise with you as last night I had to ring emergency services because of the pain. Go to RLS.org if you have not done this already. It won't take away your pain but it may be of some help

  • Thanku for ur advice about going on rsl.org....will def check it out in the morn..i too have had to call ambos but they jus look at me strangly or think im on sum sort of drugs...

  • Im sorry u needed ambo...i too hv needed them on more than one occassion....i mean how long can ones body cope with such extreme stress n pain...surely one time ill pass out from exhaustion and jus not wake up...this cannot be normal and am always concerned about my body jus giving up...

  • The pain with RLS is intense - in the evening and at ight for me its like I have been running for miles and that burning pain keeps going and going and I would get that, (when things are at their worst) from about 4pm till about 6am it is pure f**king toture. Then either because I am so demented or exhausted I will doze off for a couple of hours, (and a couple is 2) and when I get up the pain in my legs are like I've spent too many hours exercising the previous day.

    I was at a pain clinic and tried to discuss this with the Dr but he told me RLS wasn't his field - yeah but the extreme pain is!!

    What meds are you on? You don't happen to be on an anti-depressant? Many of those can make RLS much MUCH worse.

  • I too usually pass out from sheer exhaustion....omg i thought i was the only one who felt those symptoms as severe as mine...i am so sorry .....i am on quite a few drugs and yes one is anti depressant mirtazapine.... olanzapine....deralin...carbaser...lyrica....and neupro patch....i was on seroquel which did make my legs worse....

  • You are definitely not a lone in your pain. I have had rls since I was a child. It was called growing pains! My father had it very severely. I don't remember him ever having a good night's sleep. His doctor told him there was no such thing as rls..At least these days, any half good doctor will take it seriously. See if you can get a referral  to a sleep clinic. There are various things they can advise. Take comfort in knowing there is help and perhaps your partner can help you to find the right help.

  • Thanku...i cant believe other ppl have it jus as extreme as me....i will def che k out sleep clinic as i hv been only getting approx 4 hours a night...its 12:35 am and im wide awake...listening to my partner snore ( omg i wanna smuther him with the pillow ) lol...he does his best tto be supportive....when hes awake...lol

  • Hi, looking at your meds list there are some that are probably making your RLS worse.    Please check this website out and look at the treatment page, its has a list of meds available to use for RLS also lists of meds which can make RLS worse.   rlshelp.org    If need be take the list of the meds which can make RLS worse to show your doctor.  Some of your meds i looked at, seems you have no choice BUT to take them for your conditions.    The website has a email service and you can email the doctor whose website it is and he can give some advice on those meds you are taking..

  • Oh thanku....i will email him...i cant believe im actually getting support and feeling not so alone....

  • I would love to tell you you are alone!!! But as you see there are many of us that suffer and suffer bad, (although any RLS is a b1tch).

    As Elisse said bring the list to your Dr and explain the situation. The restlessness, pain and lack of sleep certainly will do your mental health no good and the Dr needs to know that.

    I've found one of the best things to do when my legs are at me is to do some housework, (no hoovering at 3am mind!), or something that can distract me- you talk of lying in  bed - to me that adds insult to injury!!!

    Outside of drugs I've found hot baths to be a life saver and walking up and down the stairs on my tiptoes brings some relief. If you are in a safe area and its warm a walk at night can be nice too and if you are out just before and through dawn there are enough amazing noises to take your mind off the  legs.

    Good luck.

  • Thanks for ur advice...i hv trouble standing wen i hv an episode...i get bad vertigo infact i had a fall last night...hurt my back n hip...my legs hurt so bad i hv trouble even getting my butt to the bath unaided...

  • I've developed ME to add insult to the injury of RLS. I found when things were at their worst and I was too tired to stand but needed to keep moving that if I lay my body over the sofa face down hanging my legs off the end and shook them - took less energy than walking or standing on tiptoes. 

    The depth of suffering that this condition causes is immense and so poorly understood by Drs as to be insulting. As said when the Pain Dr's brush you off what do you do?

    Seriously if cannabis or Kratom is an option try that. Personally speaking there are nights I would try heroin or the likes if I thought I'd get 5 mins relief.

  • I was jus joking to hubby about moving to Holland and growing poppys. Lol...joking but not...

  • Ps i will try the sofa thing...

  • Btw whats kratom...sorry for my ignorance... am going to talk to specialist about medical greens...

  • Kratom is:


    take a read through it and if you have any questions I am only too happy to try and answer. There are a few of us on here that use it.

    I take it since you are seeing a specialist about medical greens you are in the US? Kratom is illegal in some states so read well,(you may have your difficulties with Trump and Clinton but at least the laws are changing about cannabis)

  • Im in australia...the laws only jus changed...trials are happening...the state im in only cautions for under fifteen grams or two plants i think...thanku for the info

  • No problem, congratulations to Australians for the shift in the laws. Lets hope common sense spreads through Europe soon.

  • Kratom is illegal in aus 😔

  • I hope you can sort out whats best for you to take and your sleep improves.  Keep us informed, we like to hear from members who have found some good relief. 

  • Thankyou... will do

  • Three years on...still trying...

  • Hi ,I don't have the intense pain with my RLS as you have although my legs and arms can be painful but I have spent countless nights unable to rest or sleep so understand the pure exhaustion and frustrations of this dreadful condition. One thing I wanted to check with you when you are able to walk around and pace when you have a RLS attack without the vertigo do you find that eases your legs?  I am sorry that you are going through such a dreadful time and hope that you soon find some relief. ..Pipps x

  • Yeah no cannot walk or pace...jus thrash about on bed or floor  😔

  • Walking certainly does ease the legs temporarily if I can catch it as soon as the pain starts. The pain can come any time, day and night, arms and legs. 

  • My pain eps are different everytime...i hv yet to work out my triggers...sometimes four in arvo...sometimes one in the morning...three thirty in arvo...ten fifteen in morn...etc ...when its bad my fingers wrists and forearms ache but the pain in my legs changes...sometimes right thigh left ankle....sometimes both ankles and one calf...etc...it is unpredictable but one thing that remains the same is how quickly it goes from a little jittering to full on snot coming out ur nose ugly cry in pain...

  • Hi I feel so sorry for u as I have been suffering for 4 years . I have had pd for 8 years

    I suffer with pain when I take my melds every four hours  .i have been to many of the top doctors but they its in my head or anxiety.

    I didn't want to hear that so I take anxiety pill and antidepressant but I still get the pain but more severe if I panic,

    I'm trying to be positive and seek further help 

    Good luck u have a husband try to get help maybe nerve pain ,lyrics is very good as I take panadine forte if I can't bear it ,I weaned myself off end one  painkiller please don't take OxyContin too it's heroin .

    Good luck 


  • To going through hell.10May.the RLS when severe could be described the way you have.your partner  sounds wonderfully supportive. Have you seen a doctor who is familiar with RLS?as that is very important.I have had this for many years and sympathies having just had a horrendous bout.Every one on this site can give you similar case histories.The problem is not everyone or anything  is the same or even all the time.one has to keep persevering to find what works for oneself.Read through the posts they are very informative and helpful.Meantime  try and hang on until you get some relief.this iPad keeps correcting my spelling which is annoying.

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