the feeling has spread first to my back then neck and arms and now the back of my head causing itchy feelings and creepy crawling feeling all over
has anyone heard of the restless feel... - Restless Legs Syn...
has anyone heard of the restless feeling occuring all over body
Written by
katierp
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52 Replies
•
At the moment I'm lucky as I only get it in my legs and arms, just hope it doesn't spread.
Best wishes Kitierp, what meds are you on?
Sounds like augmentation, are you taking a much to high dose (over 0,54 mg) of dopamine agonists?
I had it in legs, feet, arms and hand before I got my morphin pump.
katierp• in reply to
not sure wot u mean by dopamine is that that in ropinorole?
• in reply tokatierp
Hi Katiep, yes the class og medication is called a dopamine agonist as it eorks on dopamine levels in the brain.Roponirole,mirapexin(pramipexole) and neupro patch are dopamine agonists.Are you on amy of these meds?
katierp• in reply to
yes i take ropinorole 4mg, i would love some advicewot do you suggest??
• in reply tokatierp
You may be suffering from augmentation. This is a common problem with these types of meds.This is where the medication actually makes symptoms worse.Usually the med works well but you have to keep upping the dose to het relief. Other signs are symptoms starting earlier in the day and spreading into other body parts usually armd but can be anywhere. Does this sound likr you?
katierp• in reply to
definately,aswell as my legs being costant(kind of got use that now),the two main starting points in the morning are bottom of spine and top of spine joining neck,they start as niggles progress to creepy crawly feeling and end as extremely painful burning pain,while all the time spreading outwards from the two main points,also when i hold my neck in certain positions(eg lokking up close through partly closed blinds) my head involunteraly nods until i move it, and i cannot sit or stand still without tensing most muscles in my body i often dont know im doing it.i think the only reason i manage to sleep is because i take a lot of other meds too
• in reply tokatierp
Katie are you under the care of a neurologist or just your GP? Some of these symptoms sound like augmentation but others I am not too sure about.
katierp• in reply to
just GP
• in reply tokatierp
Ok, you need to make an appt to see your GP and ask to be referred to a neurologist.The burning pain sounds more like neuropothy which is nerve damage.I have heard of people describe their restless legs as burning pain but this needs checking out especially the head nodding. Tell your doctor ALL of what you have just described. If it is augmentation you would need to come off the ropinerole and change to a different dopamine agonist or come off altogether and have a break.This is hard to do and you would need stronger painkillers to do it.Many doctors don't really know about augmentation but in your case I am sure you need a referral to a specialist. I dont know your ginancial situation ut if you can afford it or in a scheme such ad Westfield a private consultation would be quicker. It may be worth posting again on here and asking ig anyone can recommend a good neurologist in your area with good knowledge of restless legs.Good luck, let us know how you go...kim
katierp• in reply to
thankyou for your help i will definately let you know how it goes thanks again
• in reply tokatierp
You're welcome
Brett85• in reply to
The head nodding is a tremor and can be treated by the neuro. IT might take a combination of things to make it stop but it can be treated easily enough.So can hand shaking, voice shaking. A neuro knows what is needed.
Oh can see you on ropinerole.What dose do you take?
This is the form I have. Isn't it grim? Here I am at 2 am, twitching all over and unable to either rest or drum up the energy to tackle a constructive activity. Eyes blurry with tiredness---and on, and on...
Ropinerole had, i thought, put a stop to this, but these past few nights It's re-started. I'm on 0.5mg per night at present. Can I take a higher dose?
i currently take 4mg,but am experiencing problems with it makin it spread to neck and head going to docs to change this
• in reply tochrissy-ma
Hi yes you are on a low dose but maybe an idea to change to one of the other meds for a while then if you go back onto Ropinerole again you will likely get relief again.Many people switch meds at times to help prevent these sort of problems. Once your body has had a break from a med it seems to reset things.Could try mirapex or painkillers or anti convulsants while having a break
KaarinaAdministrator
If you go to rls-uk.org you can read about the terms Augmentation and Rebound under FAQs.
Well, even before I began Pramipexol I had it in my arms and lower right back. I have just, last night, done the final increase of Pramipexol to 4 tabs per day and I have received no relief. In fact last night was the worst so far. I am giving it a week and then going back to the doctors.
• in reply toTrubs
Sorry no relief Trubs must say I expected it though.If pramipexole is going to work it is usually from the first night even on low dose.Time to try a different med
thankyou for writing back, i take mirtazapine 30mg, fluoxetine 40mg,fezafenadene pregabalin,oxybutynin and ropinorole any advice going to docs later,but he doesnt know much about the condition
• in reply tokatierp
Hi theres the possible culprits! I believe fezofenadine is an antihistamine almost guaranteed to make restless legs go crazy.This neefs discussinh with your doctor to see if there is an alternative. Fluoxetine is also in the antidepressant category that can make symptoms worse..Seems a good look at all your medications is in order.Combined with high dose ropinorole thete is no wonder you are suffering. If you go onto website www rlshelp .org you will find lots of reliable info and a list of meds to be avoided for rls sufferers
katierp• in reply to
hi thanks again its amazin the stuff u learn on this site,think i will stop the fexafenadine and see if things get better,will keep you all posted thanx x
• in reply tokatierp
That would be a good start . Obviously coming off fluoxetine would need doing slowly and under medical supervision if you have depression. Remember though the ropinorole still needs sorting. It will take a while for for antihistamines to get out of system,
katierp• in reply to
i take mirtazapine and fluoxetine for different thing including ocd,anxiety disorders,stress disorders,phobias, depression,(since teenager),i have tried to reduce both drugs under doctors supervision on separate occasions but believe me the mental implications of stopping either of these is disasterous, were talking police and hospitals i cant change them,im a bit like a ticking time bomb lol
• in reply tokatierp
Thats why I said not something you can just do.People on here dont know all the circumstances of others so I would neveradvice anyone to come off any medication without discussing it first with their doctor. Everyones situation is different so always best to seek medical advise.We can say what has worked for us but no two people are alike so even with something like an antihistamine who knows a member could have a life threatening allergy.I try and learn as much as I can but ALWAYS seek medical advice
katierp• in reply to
im at the docs later today to discuss it,i would never do it without docs help,i take fexafenadine for a minor condition in comparison to my others,so i know i can stop takin them without problems,sorry if what i said made it sound like i was makin the decision lightly
Sweetheart are you on any new med's or have you come off any??? I had that feeling when I was coming off a medicine once, I feel for you. I did some research and benadryl helps. Probably spelled it wrong but it's for allergic reactions and helps with sleep. Hope this helps. xxxx Mitzi
Iv`e had that in the past a couple of times. It felt as if I was infested with lice! it was terrible.
Benadryl for most will send your RLS nuts, so beware if you are thinking of trying that out. !!
For those who are taking the dopamine agonist meds, then check whether you are taking any other med whether from your doctor or OTC is making things worse. After doing that, then its either your RLS has progressed, or its augmentation, if the later, then time to change your RLS med. DONT let your doctor up the dose, it will only help for a while, then augmentation comes back with avengence.
I beieve Benadryl is an antihistamine?
Hi how did GP appointment go?
katierp• in reply to
it didnt', i have two young kide and my husband is disabled,my youngest(comin up 2) fell and banged her head,lets jus say it looked a lot worse at the time couldn`t go,but spoke to doc he said stop the fexafenadine and come back in 1month for full review of meds, unless things get any worse and he put in a referral for neurologist
• in reply tokatierp
Gosh you have got your hands full.Good news you have got a neurologist referral though
katierp• in reply to
yeah great news,jus the waitin list to get through,dont know about you but it was bloomin hot were i am today legs really bad,wont stop kickin out guna b a fun night
• in reply tokatierp
Hopefully wont be waiting too long at least your doctor seems to be taking it more seriously. Yes been very warm today.Luckily my legs like the warmth whilst others like cold . Although I am hot I always have 2 hot water bottles one on my feet and one on my legs. Hope you het some sleep dont know how you cope without when you have 2 small children and a husband who needs help.
katierp• in reply to
my legs hate the heatwen i went on honeymoon 5yrs ago in africa it was unbearable i couldnt sit still it was so strong i felt ill had enough to drink to knock me out jus to get sleep i had been asleep an hour woke up and my husband said it was like i was running fast in my sleep had to get up have few more drinks sit in a ice cold bath until i couldnt feel my legs then jump into bed to get to sleep before they warmed up again and start kicking,that put a stop to sunbathing forever more, the kids take my mind off things, my ocd seems to keep me going if it wasn`t for that i think i`d want to stay in bed all day lol
• in reply tokatierp
Did you start with rls at a young age then? Does anyone In your family haveit mine is genetic from my mother
i remember being at primary school i couldn`t sit on a chair with my legs down i had to be sat on them,at home i wouldnt sit on the sofa i had to lie on the floor on my back with my legs in the air jus got worse from there,back then it wasn`t recognised people jus thought i was weird always gettin told off,no one in my family have it
• in reply tokatierp
I first got it in my twenties.so not as youg as you.My daughter gets it just occasionally and she is in her twenties now so sadly looks like she is going the same way. At least I will have a little knowledge to help her though such as what meds to avoid
katierp• in reply to
oh dear,its good you can help her early enough before it takes over,im 25 now so god knows how much worse it could get
• in reply tokatierp
It may not get worse it could be reacting to your medications.At least you are learning more about it now so keep coming on site if your struggling. There are some very knowledgeable people on here(I am not one of them!)I have learnt from other members and I was in a dreadful state then but much better now. My doctor knows nothing about it.Elisse and nightdancer aswell as others helped me alot and I eant to try and help others too because I understand the impact it can have on a persons life.
Altho i hate my legs and feet hot at night, in the winter i sometimes use a heat pad and my legs like it. lol In the summer i use a free standing fan, which is directed at my legs and feet. I keep the bedroom as cool as i can. I never have the central heating on in that room in the winter. I also use music at night for distraction, because i live on my own, i have the radio on all night. I used to use a CD player with earplugs and listen to ballads, they seem to help me drift off to sleep. The idea is the brain is consentrating on the music and leaving the RLS alone. 
katierp• in reply to
i agree,my second child was born with blockage in now and allergy problems which meant she struggled to breath and feed,the only time she settled was with havin the radio on but jus white noise i got very use to this and it definately helps i now have a sound machine on every night,definately takes your thoughts away from it,i sometimes, thinking about it makes the feeling stronger
• in reply tokatierp
Thats true so I am going to call it a night !
yes i have during the day i get very agitated and i have to move and mu legs want to run it is like a fight or flight thing - as if i have to escape
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