Restless Legs Syndrome

This might be it I believe?

Hidden5 years ago103 Replies

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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Hidden

in reply to Elisse

5 years ago

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

hindawi.com/journals/ad/201...

"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."

Elisse

in reply to Hidden

5 years ago

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.

Hidden

in reply to Elisse

5 years ago

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

Hidden

in reply to nightdancer

5 years ago

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

Hidden

in reply to Hidden

5 years ago

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

injection...

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 system...it 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... =)

Hidden

in reply to Hidden

5 years ago

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. ..

Hidden

in reply to nightdancer

5 years ago

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...

Hidden

in reply to Hidden

5 years ago

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)

nightdancer

5 years ago

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 webmd.com 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 rlshelp.org 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.

Hidden

in reply to nightdancer

5 years ago

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?

Hidden

in reply to Hidden

5 years ago

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 !!

Hidden

in reply to Hidden

5 years ago

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 ..it'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.

Hidden

in reply to Hidden

5 years ago

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 !!

Hidden

in reply to nightdancer

5 years ago

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. =)

Hidden

5 years ago

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 tired...it'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! =)))

Hidden

in reply to Hidden

5 years ago

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

Hidden

in reply to thedragon

5 years ago

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 health...you 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

Hidden

5 years ago

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!

Tilda

Hidden

in reply to Rubylane25

5 years ago

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.

Elisse

5 years ago

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

ninds.nih.gov/disorders/res...

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.

1 like

Hidden

5 years ago

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

This might be it I believe?

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