This might be it I believe?

Hi. This condition and site has been suggested/ recommended to me by someone who also uses the NRAS site as I do.

I've been searching for answers to having peripheral neuropathy/ pins and needles/ extreme tingling in my hands arms, legs and feet on and off for a year. For the past five weeks it has raged all day and even more so at night. My calves feel, cold wet and slightly numb all the time. I am not sleeping at all well. I have always been an insomniac but presently I wake all through the night because of this neuropathy and because of the need to move around to try and get comfortable.

As described when googling RLS I find it worsens when I relax in the evenings and is pretty awful at night too. My limbs feel leaden as if they can't move but at the same time I feel I have to move them to keep them functioning. I have now been taken off my disease modifying antirheumatic drug because my GPs both felt that this must be the cause so I'm slowly slipping into an RA flare up too. Do my symptoms tie in with RLS and how likely is my GP to respond to the suggestion that it might be? Should I ask to be referred to a neurologist perhaps?

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103 Replies

  • These are the criteria to most likely having RLS.

    Found this too, dont know if it will help aswell, but mentions polyneuropathy, when you scroll through.

  • Thanks very much Elisse. I emailed my GP to ask about RLS earlier today - but he feels, though possible, it doesn't tarry with my symptoms well. He says that he's never come across anyone having RLS in their arms as well?

    I emailed back with the footnote about inclusion of arms on the criteria link you kindly gave me - as well as an extract about co-morbidities for RA with RSL. No reply - he probably heaved a huge sigh and cursed the Internet and this pesky patient!

    Here's the link and the extract I sent him in case its useful for other RSL sufferers. Tilda

    "Rheumatoid arthritis (RA) is a multisystem disease with a complex immunologic pathophysiology. Likewise, sleep disorders can involve a complicated interplay between the neurologic pathways, immune system, and respiratory system. Recent studies have shown an elevated prevalence of sleep abnormalities in connective tissue disorders compared to the general population. Restless legs syndrome (RLS) may be present in up to 30% of RA patients. These findings may be related to cytokine release and other immunomodulatory responses. TNF-α levels relate to sleep physiology and anti-TNF-α therapy may improve sleep patterns. Most of the patients with this disorder can distinguish their RLS sensations from their arthritic symptoms. RLS is a common comorbidity seen with RA, and prompt recognition and treatment can improve patient quality of life."

  • I can comment on much of what you have posted as i dont know enough about it all. But although the criteria for RLS, is how it says. People DO get RLS in their arms and other parts of their bodies. I for one, can sometimes get RLS in the back of my shoulder blade and the other night one arm had it, that was a new one for me. Yes, doctors are not always happy when patients give them info they have found on the internet. But as long as its good info from a good website, (there are many websites that can mislead

    about conditions)

    Do you have the "urge" to move your legs, that is probably the most pointed part of RLS, and getting up and pacing gives relief, until you rest or try to sleep again, and it starts again. My leg or legs jump, and it either stops me sleeping or can wake me up, its a sensation which you HAVE to get up and move to get it to stop.

  • No Elisse I don't have to get up and move about and in fact mine never goes away even when I do - although it may lessen a bit.

    I move all the time though - not just with the parasthesia / neuropathy. I swing and thrash about all night trying to shake off the parasthesia or itching the tingles and prickling sensations in my legs and feet and hands. But often I'm too stiff to get up and move about easily after sleeping and in that way I don't think I do match the criteria - because RA is a very stiffening disease and because it isn't like cramp so moving only slightly alleviates it. And my legs don't jump or vibrate (as all three of my sons legs sometimes do) I just feel the need to move them a lot - this isn't involuntary as you describe though.

    The search goes on I think (sigh) but at least my GP is wrong about something RLS affecting arms and other parts sometimes! Tilda

  • but you say you "feel the need to move then a lot". That is the key there.........the URGE to move them or your arms or whatever part of your body that is bothered. IT does not mean you HAVE to get up and walk, lots of us do have to, but the fact that you said that you 'feel the need to move" is the big clue. That is exactly what Elisse is talking about. ;)

  • Thanks Nightdancer - I may react differently to the way a person who only suffers from RSL would because of the RA stiffness - certainly I have learnt to stay still sometimes because moving about has involved extreme pain on occasion when my joints are inflamed.

    Also my OH pointed out this morning that because I've experienced itching and pain all my life from eczema and now RA, I may not have been aware that the impulse to keep moving was down to my nervous system because of these other conditions?

    I do zumba, yoga, muscle exercises and walk the dogs most days to keep the stiffness at bay and muscles strong in order to support inflamed joints. But lately I've become aware that my joints aren't sore much at all now, however I'm always wriggling and needing to move my legs and hands all the time still but I thought this was just a habitual reflex action left over from a lifetime of itching and in stiffening/ unlocking joints?

    This is why I feel RLS should be assessed by a neuro not just dismissed out of hand by my GP! X

  • There are a couple people on this website that have RLS and RA.

    Stick around for awhile and see

    if you can relate to any of us. =)

  • It needs to be assessed!! You are saying words like "wriggling" can't get comfortable" and the "need to move your legs and hands/arms" is classically describing RLS symptoms. he owes you a send opinion and to a doctor who KNOWS aout RLS. At least half the people I know with RLS and that is a lot, have that need or URGE to move in their arms. I am one, plus between my shoulders, my RLS actually starts up first in my back, and that is hard to describe. But I feel it first in my back and hips and then it goes from there. You need to insist. I have not read all the replies below, but wanted to weigh in again. ;) Been offline for a while.

  • I will update with a post. Things have moved on re doctor and I should let you know how.

  • your doctors wrong, i know of 5 people who get RLS in their arms, and quite a few that get it all over, i get it in my legs and lower back, and i do know one member on here who gets it all over her body

  • I don't think I have one spot I could say I have never felt RLS. It is everywhere when it decides to be. yes, your doctor is wrong, as Tallula says.

  • I have well controlled RA.. I was told that RA never

    comes to the party alone.. it comes with vitamin

    deficiencies, RLS in my case, I also have some

    numbness in my feet. He understands what RLS

    is and goes on and on to talk to me about it...

    I am taking Simponi..and Avara..for RA..

    My B12 was rock bottom from taking RA meds... so

    make sure that you get that checked because the

    numbness in my feet has subsided substantially since

    starting B12 shots 4 months ago.

    Im glad that you are getting a lot of information on both. =)

  • I can't seem to get GP or rheumy to take on board the B12 issue at all. GP won't take my folate because im not nutritionally compromised and none of my medical team seem to acknowledge that MTX can skew the results of b12 because of folic acid. I've given up pushing them. I'm also hypothyroid but they say levels are okay although thyroid UK people say they aren't actually. I think I'm going to start self administering high dose b12 pills and see if this helps while I'm off all the drugs. Thanks for telling me about your issues and the treatments they make a lot of sense to me. Simponi might also help with your RLS I believe - if you read the Hindawi quote I've pasted above? I'm quite nervous of Arava as I have quite high BP.

  • Avara isn't a great, great drug for me anyway. It messes with my liver just as MTX did.

    Self administating drugs can be dangerous.

    B12 is one that will pass through the system

    if taken in excess.. however you can poison

    yourself with some of the others. If you go

    that route.. take the B!2 Sub-Lingually ...

    under the tongue. (slow melt) it will absorb

    much better but still the highest form and

    the most suitable form comes in a muscle


    Is someone addressing your BP issues?

    2% of all people on Simponi get numbness

    in the feet and lower legs. We are looking

    at that and making some big decisions..

    Medicines are okay by themselves but when

    someone starts prescribing multiple drugs

    and it's all in your becomes

    something else.. weird side effects can

    happen.. some drugs cancel out other

    drugs.. some vitamins do the same so

    keep your doctors on board... =)

  • My GP has said this too about combinations of drugs and side effects. He is concerned about the anti tnfs for this reason I think. I'm not keen to take anything ellse unless I have to but will if they advise. I took advice on B12 from pharmacist and people on the Pernicous Anaemia site and know it can't harm. But tell my GP (rather than ask!) what I'm doing don't worry! X

  • You would be very surprised how many people let their GP control

    the entire office visit. I used to not

    ever disagree with my Primary Care

    Doctor... I suffered too long to keep

    being like that. I ask for the drugs that

    I want specifically...

    So many people get home and then

    think "I should have said this or that...

    They have regrets and resentment that

    the doctor didn't do anything... I was

    that person just a few short weeks ago.

    Now I walk in with a briefing like it's a business transaction.. He looks and has a glance of my latest numbers from the labs, what drugs we tried,

    what we were going to try next according to our last visit.. We leave the appointment with a plan to put into action if the current one fails...

    I use the least words possible and make graphs to show him in a glance my ups and downs (medicine taking at that time) It works well for us. ..

  • We have to remember that the doctors work for US, not the other way around, although I have done lots of well received research to help my great GP along with her knowledge of RLS. She is a gem! But, it took years, a decade or more, to build my team of doctors that are all worth their weight in gold that I have now. so, we od have to work at it, but they DO work for us, and many have been canned in the name in the name of RLS treatment. I know in the UK it is harder with this, I am from the US, and it is so much easier to change doctors over here. we are not bound to certain sections of the country, or trusts I think they are called? ;)

  • My understanding of how it works in the UK is that they are assigned to a doctor- just one.. depending on the area that they live. If the doctor doesn't have the knowledge, they are at the mercy of that doctor. Sounds like some are hard core against prescribing medicines to lessen the symptoms of RLS. Some have

    told me that if they keep pursuing the issue, the doctor could write them off the practice and then they are in limbo until another doctor in a different area will pick them up as a patient after they request it. For those people who are in that situation..they need to be completely armed with knowledge from our site here

    and they have to ask for specific tests, specific medicines that they wish to try.

    I don't see another answer. I have put more time and study into this to find that it is solely up to the patient to try to educate the doctor.

    I want them to have recent lab test copies with them along with lists of things that they tried...what worked, what didn't and be suggestive of their own treatments. ie;; *I want to try Pramipexole -will you prescribe it on a trial basis...can I have some pain relief to bridge me over until the Pramipexole kicks in? Why NOT if the doctor disagrees- then pull out the facts of RLS that they collect along with the reviews of the product." Sometimes you have to pitch the drug to the doctor when it comes to your own health.

    I am taking a class on assertiveness on my own health decisions... I've been at it for a while. It's the drug companies that are teaching me how to do this. Those are the words that were used in my class...

  • Our doctors are free loads of them Happy birthday

  • do you rate over there? Loads of doctors? I was inquiring last week how that works and several people replied with the above information. If I am wrong- Please correct me..I only know what the others told me. Thank you kindly Sir Leonard20 for the many happy b-days..

  • Hi Yikes and Happy Birthday...hope you have a good day honey x x x

    On the point about doctors in the my practice, there are about 4 different ones, its a smallish village. i can book to see the one I want or if its an emergency, the next one available. Ive never been assigned a specific doctor. its the same in my partners practice which is bigger. If you call to see a doctor and dont specify which one, you are just given the next available appointment with the next available doc!

  • Where are you located, or at least what country?? Loads of free doctors?

  • My situation is different because I'm located on the mainland of group of Scottish islands called Orkney. But it's not that different to the Dragon's in that we have 3 doctors working at any one time and there are two young ones who work part time to release the three main partners in the practice to do other things. The three partners are all quite different and one only works part time. I see two of them - a woman and a man - but only if I book well ahead. If I book at last minute then I have to take pot luck and sometimes get one of the juniors. All is free because, although our practice is run independently, it is part of the NHS. Tilda x

  • Yikes, my surgery has 7 doctors, all the patients are divided between them, they have lists of their patients. My doctor at that surgery i see for my RLS, and only him do i see, unless of course he was off ill or on holiday. Then i would be able to see another doctor in the surgery. If i had anything else wrong with me, i could see who ever they have available for an appointment or for an emergency appointment. The reason i see the same doctor for RLS, as he knows my history and knows me well. Apart from that, he is one of the best doctor's in the surgery, and i think everyone would like to be on his list. He has seen me through some tough times. :)

  • These kinds of corrections are very important to me.. I am truly doing my very best to find out yours and everybody elses situation for doctor choice. I do have an agenda for this information to go into a starting point just for our own site here if it gets approved.

    I need 100% accuracy.. I'm taking a pole to find out what people want to see on this site for a newbie.. and you guys and girls are helping me get this started up.

    Again, it's subject to approval by the chairs/ experienced RLSers.

  • Its a bit of a tall order hun, as most surgeries will differ in how they operate, here in the UK. regarding waiting to get an appointment is a big one, some can get an appointment the next day, some have to wait days, some cant even see a doctor and have to talk to receptionist first. Some cant see the same doctor, some can. Not trying to put you off, but depending on where you live can make the difference to how a surgery is run. You would think they would all run in the same way, but money comes into the factor, some have tighter budgets than others, so medication they give out first can vary as well.

  • This is the most important thing that I've learned from talking with you. I have to know this in order to address newbies of rls... I don't have to know every detail but I have to have a general idea of what's standing in the way for patients in the UK and getting medicine, treatments..

    You would do so well in the politics division with your accuracy and words.. You are one of the only people that can make bad news seem respectful. You keep a great attitude even when you have to explain things a million times over to make others understand.

    Please know that you do make a great big difference on this forum and help others!

    Don't ever go away. This site wouldn't exist without people like you. Thank you.

  • thats what i do Ellise...i see my lady doctor for my RLS...Ive tried the others and she is the most knowledgeable. i see another doctor for other stuff cos he gives me sweets!!!

  • hi TildaT think you'll find this site easier to comperhend has all the fact on RLS

    I suffer RLS 24/7 throughout body so your Dr is wrong in saying only in legs .... be great if your Dr would send you to see a Neuro Dr , Good Luck :)

  • Thanks gypsy49 - yes it would be great to be referred to a neuro although I'm told it would be a long wait as with the rheumy. Re the other body parts being affected - this is throughout my body too but I suppose he is going by what his RSL patients tell him and this may be limited.

    I did ask him about MRI or CT scans but he said he could tell from nerve conduction test that my central nervous system wasn't affected so no point. He may have to refer me now I've come off the RA drug (methotrexate) for over a month and parasthesia/ neuropathy is still a big issue. Thanks for your help. I will check out your link now. Take care. TildaT

  • Your Rhuemy probably knows more about RLS than

    a lot of doctors... he is also very aware of what drugs

    make RA worse..

    I had that very painful nerve conduction test on 1/2 of my

    body. I have clearly lost sensory in my legs and feet... so

    at least It was known that I wasn't trying to pull anyone's

    chain to get pain relief... (I quit with narcotics. They became

    a problem for me- I over took my prescribed dosage)

    My central nervous system was fine as well.... but now we

    have to figure out why my sensory is gone...I do believe that

    the neuro said that I will probably never get the sensation

    of hot, cold, sharp, dull, texture back again. I have to

    keep getting my feet looked at by my husband and for

    every doctor appointment from now on. I can't feel

    them to know that they have been hurt... = /// but I

    sure feel pain on the tops of my feet and my shin bone.

    (Frostbite type of pain)

  • That site will be invaluable to everyone. Thanks.

  • Well, you can certainly have several conditions at the same time. Neuropathy, RA, and RLS are all different in how they are diagnosed and treated, and all are certainly different disorders. It is called having "co-morbid" conditions , or conditions simultaneously. You certainly CAN have RLS in almost any part of your body and the data and patient stories back that up,. Your doctor is about 15 years behind. RLS was even described back in the 1600's (was not called RLS then) by Sir Thomas Willis, a neurologist, and he describes people with this 'disorder" as "flailing limbs" (arms and legs) and "the patient suffering with this , it is like they are in the worst position of torture". I paraphrased that a bit, but if he knew in the 1600's that RLS was in the arms, and then Dr. Ekbom who did massive research in the 40's knew this and described it in detail (arms and legs). Dr. Wayne Hening, may he rest in peace, dug up Ekbom's research from the 40's and brought it to the forefront in the 70's. every reputable web site says the same thing. RLS can and does happen everywhere in the body at times. I get it between my shoulder blades, my lower back, hips, legs, arms. makes it really annoying to type!! ;) Info on arms is on every RLS web site m, even which is many doctors' favorite web site, and has a crystal clear reputation. IF your doctor would not believe this information that has been posted here, I could get hundreds of emails from people who get RLS in their arms, and also read the patient letters on 14 years worth of them, and many will have the arm complaint. It does sound as if you need a neurologist. Even if it is a wait, RLS is progressive and there is no cure, so even a long wait will benefit you in the end. ;)

  • Quoting gp here "restless legs syndrome is a possibility but it isn't a neuropathy and it's not something that seems to fit your symptoms terribly well - I have never come across it affecting the hands or arms. Can review on Tuesday. Best wishes ----".

    He's not exactly saying it can't affect the arms or other body parts Nightdancer - but just that he hasn't come accross it as a GP. I did reply giving him these links and the extract about comorbidity with RA but no response from him this time.

    I am starting to get severely depressed now - whether because of the parasthesia / neuropathy / lack of sleep - or because I've been taken off a DMARD for RA that was working well and just left to see what happens next - so RA could be active again too and that causes low moods.

    I will try my best to push for a referral to a neuro this time because if he can get this wrong then it seems very possible that he gets other stuff is wrong too. I blame my rheumy mainly for being too influenced by my lack of swollen joints this time to discuss the raging pins and needles properly. GPs are just generalists but a specialist should be able to refer or consult other specialists more easily.

    Out of interest does this relentless parasthesia and cold, numbness in my legs, hot fizz in hands arms and the terrible lack of sleep because of thrashing about all night - and the need to move about all the time - correspond with RLS as you experience it?

  • TildaT i certainly symathise with you about arthritis, although i have Osteo- arthritis, when my legs start, its realy awful, as its mostly early afternoon, and by that time, im really aching and painfull, just when i want to rest, my legs will start, so im back on my feet again, and arthritis in them is awfull by then, i also feel realy horrible stiffness in my joints in the morning, takes a while to get going. With me i get a strange kind of fizzy feeling in my legs or ankle, thats the warning its going to start, and if i sit, for a while, that sets it of for me, so i try to do things slow and steady, make sure i dont stay in one position to long, one health problem is bad enough, but when you have a few going on, you can never tell whats bothering you most !!

  • Absolutely! I have early OA too but I keep mine in check pretty well with exercise. The RA isn't very mechanical for me - at least not since I've been on Methotrexate. Its more systemic so I feel tingly and ill and very fatigued. But when it flares up it comes from nowhere and is excruciating, burning pain - like a fracture or being tortured. Unlike OA it needs complete rest and stillness or deformities occur quite fast. Also it can go for your internal organs and eyes and even your blood. That's why its so confusing with the raging neuropathy/ parasthesia now.

  • Im not allowed any arthritis meds only pain killers, i had a bad stroke last year, so they stopped most of my meds, and not allowed anti inflamatorys either, so i just have to deal with it with painkillers

  • Are you allowed anything for the RLS Talulah? Poor you re the stroke. Two friends have recently suffered strokes too. It seems to have turned both their lives upside down even though they have survived unscathed? X

  • yes i take mirapexin slow release, my cousin takes this also, that why i changed, and its a lot better than the Requip i was taking

  • Some pain meds are excellent for RLS, especially with comorbid conditions. TildaT you have a lot going on, and most likely have a crazy med list. Are you sure you are not taking anything that could be making RLS worse? Just thinking.

  • I was pulled off the MTX.. after 3 months because it

    created some liver elevation problems for me.

    There are a good number of medicines that could help

    just as much for your RA... the stiffness has to be addressed

    with a steroid type injection and if not that, pills or maybe

    even a long acting anti inflammatory. Don't give up. =)

    We can private message more about that...


    I do have a GP who is learning about RLS just as I do,

    I am. The Rheumy was the first to step up to the plate

    and got me on Dopamine medicine. =))

    I saw the Neurologist for RLS, Numbness in my feet,

    lower legs and the ice cold feeling of the bones of my feet

    (felt like my feet were in ice water or a deep freeze even

    through the temp felt normal to my hand.) It's true that

    I lost the sensory nerves in my feet and lower legs but

    nothing was done to help me out there except to

    address that vitamin B12 deficiency's taken 4

    full months of getting B12 shots every 2 weeks.. for me

    to feel my feet again. At least I know where my feet are.

    I am more aware of them now... but the burning, stinging,

    painful tops of my feet is still there. It keeps me awake.

    Please hang out with us on here and talk to us. =) Maybe

    we can help eachother with that urge to keep moving ,

    otherwise known as RLS.

  • Thanks so much. Its a huge relief to me finding someone who has experienced similar stuff Yikes. I have been feeling very alone just now because my RA was really well controlled while on injectable methotrexate. My rheumy was dismissive a month ago because I had no swelling but was really suffering from the numbness (exactly as you describe - cold wet calves always). I asked him about my B12 which GP had checked and he said it was fine, despite the fact that 25 mg folic acid was possibly skewing the results. He just said stay on injectable MTX or the RA will get out if control even worse this time. If he had addressed it as yours did then I might not have had to stop the methotrexate - although like you my liver wasn't doing too well and I had nose sores and heavy nose bleeds while on it too.

    rheumy has told my GP that he doesn't believe the fizz or numbness is active RA this time because my ESR was down to 30 and he doesn't think its MTX. He has ordered repeat blood tests for ANA (Lupus or Sjogrens) and Rheumatoid Factor which was positive two years ago.

    GP blames the methotrexate for the parathesia and I don't know what to think. I had a rare but severe reaction to Sulfasalazine and Hydroxichloraquine didn't make enough difference so its probably anti-tnfs or Leflunomide for me now as my DAS needs to be higher with swollen joints for anti tnfs.

    So I'm a bit stuck and really don't want to try new RA drugs until the neuropathy/ parasthesia has been identified and addressed with something other than Amitriptyline and zopiclone I'm on now for sleep and neuropathy - the crawling and peripheral cold numbness is too full on and scary.

    I don't fear RA pain but find this crawling relentless and exhausting. Steroids send me bipolar unfortunately :-( !!

  • oh yes, i forgot to say, welcome Tilda :)

  • Another spin on what you said Nightdancer is that a Neuro is needed just to be sure that something isn't getting pinched in the spine. With RA, sometimes the spine is a favorite site for the body to attack itself. There are little facets that cause a ton of problems for RA'ers. You would truly be amazed how

    many RA'ers have rls as well. A Rheumy is right up there with a pain specialist. They make their practice by people being in severe, chronic pain.

    Imagine how the Rheumy would feel if he didn't have the opinion of the neuro and it turned out that a big fat nerve is totally blocked up. It's the one in a millionth person that can get total relief with just one surgery. To me, it's worth the look there.

    To me, I am hearing Tilda crying out for some solid sleep.. right now. After a couple days of rest and peace without the constant pain, they can get to the bottom of this. If I was her doctor, I would address that first.

    When I am without sleep for a few nights, I have no control over my crabby mouth or my attitude. I can't pull myself together in that condition. When the doctor asks what's going on in that situation I end up going very far overboard.

    My symptoms are really exaggerated hugely.

    With everything that you have told me Tilda, you have both going on... RLS and some nerve damage possibly from RA, if your nerves are inflammed, they are going to do just as you described above. Though it won't probably show up on the MRI or CT scan.. the blood tests will give the doctor a very

    good idea of what it is and how to treat it.

    Hugs and hugs to you ... lots of prayers and well wishes for you. Good Luck on Tuesday... keep looking ahead. =)

  • What is RA happy birthday

  • Rheumatoid Arthritis ( RA) Our immune system attacks our joints.. the result is very swollen, painful joints, being severely fatigued and it can attack any organ as well. .. it's a short explanation of how nasty that disease is.. It eats up our joints. But don't worry Leonard20, treatments came a long way and much of the damage can be slowed down or stopped. Doctors catch it so early that it's rare to see disfigured hands and many lead close to normal lives. RA goes hand and hand with RLS.. they are best friends in many cases. It's difficult to tell when one symptom crosses over to the other.

  • RA runs strongly in my family. So does RLS although I'm the worst affected but I don't have RA. Have noticed my knee getting painful recently and various other aches and pains. Bit worried now.

  • RA = Rheumatoid Arthritis which is an autoimmune disease.

  • I have some doubts that your Rheumy will start you up on new drugs

    until he can see if taking you off the MTX makes the difference. If it

    is found to be the cause of your neuropathy, then your doctor has to

    fill out a bunch of paperwork and bring that to the attention of the

    drug manufacturer and other higher ups.

    So you have a few loose ends to tie up. He is retesting to be sure that

    he covers the bases of True RA.. (so many other conditions mimic it)

    I know that it's so hard to wait. You just have to slow down, get some good

    rest (and I think that you can rid your symptoms of both with a good, strong

    narcotic (pain pill) It may be time for you to ask directly to alleviate the

    strong urges to move and to address that stinging, coldness, painful

    pin pricking, sun-burnt, miserable foot and leg feeling that you have going

    on. Sleep really REALLY helps you to function better. =)

    I can't just go on and on about drug names here. I can't take the risk

    of being responsible for telling you that others are better than some

    but gosh girl, you really need to get that inflammation under control there.

    That's why your body is so's fighting the ugly beast.

    The best thing in the world that I ever took was Kenalog 40. I am sorry

    that you cannot take this shot because the effects last longer than most.

    IT's a cortisone type shot.. I thought my restless legs even settled down.

    I had a surge of energy and it took only 2 days to work for me.

    If you can get into the water somehow and do a water walk, you will

    be feeling the good effects of the movement. If you can't manage that

    right now.. a warm shower can help a little. paraffin wax .. is absolutely

    incredible for the hands and the feet... if you have a warmer at home.

    Please check out the RLS Foundation for more information and just

    wait for the time to pass because you are going to learn of a lot

    more treatments and pain relievers on that site.. New medicines

    are being born all the time! =)))

  • Please excuse my open conversation on here. I realize that it has little

    to do with RLS.. I have a giant heart and want to help whenever I can..

    Tilda is brand new to me.. we didn't meet until now. By the way, Welcome

    Tilda..=) I will take these conversations in private message from now on.

    Thank you for your kindness and understanding. =)

  • Hey please don't apologise! You really are being lovely and even if we are straying off topic rather there may be people for whom this thread is very helpful too?

    I've had a Kenalog shot when Sulfa failed and I've tried Prednisolone too - both made me want to dance for joy but also jump off a cliff simultaneously! Maybe I've had too much steroid in my life from alopecia and eczema days and grown intolerant?

    I didn't know that about the form filling and drug company. I don't think the neuropathy can be due to the MTX because I've missed 4 doses now and its as raging as ever. I feel a bit protective over it as its given me some good pain free time.

    Realising tonight for the first time just how much I move around at night always and how exhausted I am. I have to drive my middle son down to uni this time tomorrow almost (early a.m sailing and then a six hour drive each way) so I'm going to take early zopiclone tomorrow night and hope for oblivion!

    As long as the RA stays away i'll be okay. X

  • I only have rls, my heart goes out to all of you who have to cope with all these other problems too. It makes me feel bad moaning when I'm not suffering like some. Just wanted to say hi tilda!

  • DON'T feel bad for me. I am controlling it just fine...

    I had to do a lot of talking to other RA'ers and to

    the drug companies to get where I am now. I have

    a ton of help with a certain forum that pays me to talk

    about RA struggles. Very few have RLS.. that's an even

    bigger sleep stealer than RA for me.

    My only advice to anyone who is taking multi medicines for

    many other conditions big or small is to keep the doctors,

    chemists on board with what you are taking herbs, vitamins

    and everything else. Mistakes are easy to make... Whatever

    doctor you see must send a copy of the report to every

    doctor that you see... if they aren't already on one network..

    Do not be an over achiever when you are feeling poorly..

    when you lose your will have bigger problems.

    Keep in mind that sleep deprivation works against your

    immune system....I read today that sleep deprivation is

    the hardest thing on your body... Take some 'Me" time

    and nobody feel guilty over it... Ask for help when you

    need it.. if people ask for a specific task to get done, people

    generally will help but if you generalize.. people don't ask..don't

    volunteer... <3

  • oooooooooooh moan away.... RLS is bad ass ............ everyone needs a moan when they have RLS :p

  • Yeppers.. sorry that I ranted. RLS is bad but the sleep deprivation is really really bad. If we slept through the workout that RLS gives us (thrashing about) imagine how many calories we would burn up

    while getting some zzzz....s...

  • really don't like how these comments go.... sorry Yikes i did comment below Dragon but then it went below yours lol wasn't meaning you moaning you didn't mention moaning lol .......... ohhhhhhhhhhhh i know RLS very well lol and what it does to folk... i burn calories walking about lol but yeah would be great to sleep through RLS gawd knows what we'd dream about though ... maybe that we're race hoses or something who knoooooooows. im going try sleep in a mo nearly 3am now hmmm wonder if dragon managed to sleep .... night all....

  • Sort of thanks.....took 2 sleeping pills cos I was feeling low and wanted oblivion, but the rls broke through so I took 2 co codamol and got 6 hours!

  • 6hrs........... lucky you :) but sounds like then sleeping pills didn't do much hope you get some sleep tonight Dragon ...

  • I agree with you entirely Yikes. For me this neuropathy/ RLS/ fiery ants thing is worse than RA too - but then my RA was well controlled for a while on methotrexate. I think of myself as a healthy person really but I'm so tired of moving about never sleeping properly unless I'm doped up. I think sleep deprivation, for whatever reason, takes a massive toll on our health and wellbeing. X

  • Thanks everyone for your comments, support and advice - all really appreciated. The jury is out for me about whether a lot of my problems relate to possible RLS still.

    But I do know that I will be telling my GP that I want certain blood tests (folate and FBC with ESR and CRP) taking on Tuesday and that I will be firm and ask him to refer me to a consultant neurologist as soon as possible.

    Even if it turns out not to fit the tight diagnostic criteria of RLS I would like to try and get to the bottom of the parasthesia and deep heat surges that have been coming and going around my body for about 3 years now. I don't think they are menopausal flushes because I've checked this on meno forums and no one else seems to have these surges of warmth in wrists and legs etc. I feel they must relate to the acute pins and needles everywhere and the numb, cold calves and knees. I don't smoke and only drink a little and eat terribly well - gluten free and mostly unrefined foods. But I sleep very badly always and realise that the insistant need to move about isn't necessarily just habitual - I think it could all be neurological and I do really want to know what's going on here. If it takes a more effective and specific drug than the current mix of Amitriptyline and Zopiclone to get me back on track with my sleep then I want this soon!

    Thanks all - will be back when I've got to the bottom of it all - which I'm now determined to do!


  • I also get these really hot sensations. Mine are only in my legs. It feels like a bad sunburn. Fortunately it doesn't last too long. Can you be more specific about the blood test - I mean the definition of those letters.

    Thank you


  • TildaT, one more from me. I mentioned earlier that are meds that can make RLS worse? Well, Amitriptyline is a tricyclic antidepressant and it is one of the worst culprits for exacerbating RLS, or can even cause it in people who have never had RLS symptoms before. Oh, and I also meant to say that neuropathy is a different condition than RLS, but seem to go together at times. Dr. Buchfuhrer says it is "comorbid" condition like RA or osteoarthritis or anything. ;)

  • I have come off Amitriptyline now after several years of taking it at a low dose for neuralgic pain and to help me sleep. I had my dose elevated from one to two tablets by my woman GP when I told her about the numbness and pins and needles. Interestingly the man GP took me off it and put me on Pramipexole - he said that Amitriptyline could be exacerbating my symptoms. Despite having a very adverse reaction to the Pamiprexole I think he really is trying very hard to help me and is being quite intelligent in his mannish way. Woman GP has now put me onto Mirtazapine - an anti-depressant. Tilda

  • What part of the brain does your conditionmarise from. RLS is caused from an inbalance in dopamaine in the right frontal lobe of the stems from the same place as those with parkinson and turrets syndrome. The drugs I take typically help to balance the dopamaine. neurologist was the first to diagnose me so I would definitely consult one!

  • I have two autoimmune conditions Rubylane. These are systemic in the same way that MS, Lupus and even AIDS are re autoimmunity. So a different family but very much related to the nervous system and the brain as with all autoimmunity. I think it could be entirely unrelated to RA - but then again it could still be a rare reaction to Methotrexate, which is an immunosuppressant chemotherapy drug. I have been off this for four weeks now but have it had any lessening of the parasthesia or peripheral numbness yet. Tilda

  • I have two autoimmune conditions Rubylane. These are systemic in the same way that MS, Lupus and even AIDS are re autoimmunity. So a different family but very much related to the nervous system and the brain as with all autoimmunity. I think it could be entirely unrelated to RA - but then again it could still be a rare reaction to Methotrexate, which is an immunosuppressant chemotherapy drug. I have been off this for four weeks now but have it had any lessening of the parasthesia or peripheral numbness yet. Tilda

  • Sorry to hear about your illnesses. Life is trying at the best of times. I too have had my fair share...stage 3 breast cancer, two bowel resectionings, severe RLS and a syndrome called reflex sympathetic dystrophy which I am on fentanyl for pain as it is excrutiatingly painful but somehow we all just have to keep on keeping on!!!! If you go see a neurologist I hope you get some answers!

  • Yours sound far worse than mine Ruby. I am okay currently unless the RA comes back now I'm off the drug. Parasthesia is more annoying and bizarre with icy cold, numb legs than it is painful but I do have a very high pain threshold. X

  • Well I have found that no matter what pain or illness one may have it is difficult. Someone who has not experienced any illness could suffer very severly with something very minor...I guess we all just keep trucking along trying ro find a way to cope i n the best way we know how. I wish you some relief as what you suffer sounds like something I would find extremely difficult. Good luck to you and wishes for better health.

  • There are so many diseases that people are completely unaware of. my search has led me all over the place and I'm often sighing with relief when I find another door closing.

    I am fortunate to have had my RA picked up on and treated quite fast. I know it is the most painful of diseases and leads to crippling deformities for those who aren't willing or able to tolerate the cytoxic drugs or who aren't diagnosed in time. I also know it can affect the organs, eyes and blood.

    I am aware that lack of sleep is an issue for many with RA and believe about 30% of RA sufferers also have RLS so there must be a connection but I'm not a neurologist or an immunologist. I think its something to do with brain pathways and nerve pathways and inflammation?

    I think lack of sleep is the worst thing I suffer from, whether from years of chronic eczema, RA pain or RLS. Without sleep we just can't function.

  • I cannot agree with you more as to the effects of lack of wonder countries have used it as a form of torture "unfortunately"

  • Right frontal lobe? I've learned that RLS/WED and Parkinsons as well as Huntingtons chorea are diseases from the area basal ganglia (striatum) with nucleus nigris and putamen as locations deep in the central part of the brain.

  • Not what I was told...I was also told that area is where the risk and reward part of our brain is loavted thus when you take dopamine enhancing drugs they can cause gambling addiction

  • This might help with the part of the brain in question.

    From the article .. What causes restless legs syndrome?

    In most cases, the cause of RLS is unknown. However, it may have a genetic component; RLS is often found in families where the onset of symptoms is before age 40. Specific gene variants have been associated with RLS. Evidence indicates that low levels of iron in the brain also may be responsible for RLS.

    Considerable evidence suggests that RLS is related to a dysfunction in the brain’s basal ganglia circuits that use the neurotransmitter dopamine, which is needed to produce smooth, purposeful muscle activity and movement. Disruption of these pathways frequently results in involuntary movements. Individuals with Parkinson’s disease, another disorder of the basal ganglia’s dopamine pathways, often have RLS as well.

  • Exactly right!! ;)

  • good site that one Elisse i always give that one out easy for folk to understand i think :)

  • Thanks!

  • Sorry I've had to opt out here because a) I'm finding it hard to focus and because b) I'm far away from home just delivering my son to start uni. I took a zopiclone for 2 nights and slept relatively well - which is good because I've been driving for 6 hours each way and need proper sleep. I did wake every few hours but at least got rest. I still don't know that much about the symptoms of RLS but would strong sleeping tablets be a good way of ensuring a reasonable night for anyone else here? I went to sleep at 10pm and woke at 7 with about five wakes in between. I was in a hotel room with an ensuite which helped! My husband usually snores and works nights so he sleeps like a baby all night long and is restless by day. I seem to be the opposite!

  • Zopiclone, and other sleeping pills, are for very short term use. Either for no more than a month or, as some do, use once in a while when things get too bad.

    Sleeping pills are opiates, which means you become dependent and they lose effectiveness.

    This is a link passed on to me on here, it's very informative.

  • Sleeping pills are not opiates, both different type of meds. , opiates are pain killers, and many take them for RLS. :)

  • Thanks. My GP did tell me they were very addictive but she said it was too important that I start sleeping again not to have them. I think she must trust me not to take them too often. I won't have any tonight as I'm half way home now in a hotel. If I sleep well enough with my two Amitriptyline tonight then I will drive home to Orlney slowly but if I don't sleep much again I'll set off for the midday ferry at dawn! They have got me through the last two very busy days on a reasonable night's rest/sleep so I'll stop before I get two dependant on them. Shame really :-( x

  • My doctor and I decided sleep is waaaaaaay more important than addiction 12 years ago. I tale the same does of everything, have never had to up the dose, get my meds all from one doctor so there are no mix-ups. Big difference between addiction and tolerance. sometimes I take a couple nights break from the sleep meds just to give them a bit of time to "reset" themselves. If you take a little holiday from them once in a while, dependence and tolerance are dealt with in that way very easily.

  • Thanks - I do know they can create dependency but not aware that they are opiates. I take 20mg Amitriptyline per night too.

  • If you take Amitriptyline without making your RLS worse, you are one of the lucky ones, as that med can make RLS worse for most people.

  • But as I've said I don't know if I even have RLS yet Elisse. The GP prescribed the Amitriptyline for neuralgic RA pain about 2 years ago - 10mg per night. Its non addictive at least.

    Then my dose was doubled when I started having widespread parasthesia/ Perpheral neuropathy five weeks ago. I may stop taking it though as I'm not actually certain it makes any difference and may be worsening the rageing tingle and numbness or even causing it perhaps?

    For a while it really helped me to relax and sleep but it doesn't anymore.

  • Oh yes thats right, i I guess if you stop taking it, you will see if it does make any difference to the tingle and numbness. I suppose it is silly of me to say to you about weaning slowly of that med. with your doctors support, as i expect you would know not to just stop it. :)

  • That is what happens and when my dose was doubled that was when I found out what RLS is. If it is not helping,. don't take it. Yes, it can cause RLS in people who did not have it before. Ben there and done that.

  • Sorry, not opiates.

    It's as Elisse pointed out many painkillers that are opiates. I meant benzodiazepines.

    Apologies for the drug/lack of sleep brain fog.

  • Its easy to get muddled up when we are sleep deprived... thats why i put a little smiley face.... :)

  • I was put on carbamazepine, clonazepam, amitriptyline and codeine for 6 years. I made the decision to come off them and it was not easy and it didn't help knowing the RLS would come back with a vengeance.

    Anyway, my bedtime. With luck I'll get some sleep tonight. Hope you do too.

  • Lets hope we all get some sleep...i am off to bed right now too. :)

  • Sleeping pills, none of them are opiates. Please look up the definition. they are mostly "hypnotics" or "benzodiazapines" and two way different things. Opiates are pain meds ONLY. We need to keep that abundantly clear. :)

  • I think we covered that 12 days ago nightdancer. Have you been overdoing your sleep meds?

  • lmao ;)

  • lmao

  • Maybe some people havent had a chance to catch up with some of the comments...

  • uh-huh....... ;) XxX

  • might had been laughing at the sleep comment sweet.......... don't jump the gun............... chill .......

  • you know how folk sleep............. tsk! or lack of

  • Is that what we do on here, laugh when someone makes a comment, just because it has been covered, doesnt mean someone cant have their say on the subject. Shame...

  • there was an amusing coment, it made me laugh !!, am i not allowed to be amused, dont take things so seroiusly, ;)

  • I have multiple autoimmune disorders as well as Parkinson's and horrible RLS, which predates the PD BY YEARS. I am also a physician. There are treatments for RLS. Meds include Sinemet - try first - and if that fails, try Klonopin. Warm baths and gentle stretching of the affected limbs before bed. May repeat if symptoms are unbearable. If your primary care doc is not well-versed in RLS, get in with a recommended neurologist. They are the specialist to evaluate and treat RLS. Good luck to you!

  • Thanks. I'm assuming you aren't based in the UK. Unfortunately in the UK General Practitioners only refer you to neurologists if they believe it is necessary. I can't afford to take myself to one privately. My GP feels sure that my symptoms relate to my RA and the other GP I see thinks they relate to 18 months on methotrexate.

    I go down to Edinburgh in a few days time and am paying a clinic to run private blood tests to check my Vit d, full thyroid antibodies plus, MMA and Homosteceine, folate and calcium. If anything is badly out then I will see my GP but these are tests that he should have run but won't because he deems them unnecessary. My rheumatologist is too overworked to see me until end of November.

    I was tried on Pamiprexole for possible RLS but collapsed with narcolepsy and chest tightness (anxiety attacks ) after five days on it and ended up in hospital. Back to Zopiclone or insomnia caused by Parasthesia everywhere - numbness and weird neuralgic pain in feet, knees, hands and wrists. Not sure if this is RA or not but I'm certainly back to thrashing about all night!

    Oh yes and for an update I stopped taking the antidepressant, Mirtazapine, after 2 weeks because it was making me very volatile and I was eating anything and everything. I suffered a very nasty few days withdrawal but am back to square one again now. X

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