Seeking help: Hello everyone I am... - Restless Legs Syn...

Restless Legs Syndrome
12,647 members8,068 posts

Seeking help

Cathy_1960
Cathy_1960
44 Replies

Hello everyone

I am suffering from some undiagnosed condition. I have been to several doctors with no resulting diagnosis or treatment. I will try to summarise hat I am feeling the best as possible as you guys seem to know so much more than any medical professional:

I get waves of chills through my legs. It sort of feels like that feeling described as 'someone is walking over my grave'. It sort of starts and radiates through my legs. It feels a bit like shivers all through my legs? This has only started in the last week.

This symptom causes my legs to feel uncomfortable a lot of the time. I do NOT myself kicking or moving my legs a lot but I constantly feel uncomfortable. However, I have unexplained symptoms in my legs which leads me to this forum.

I will also say that these symptoms are 24/7. There is no day time relief. It is there from the moment I wake until the moment I fall asleep. I have never experienced it getting worse at night nor going away during the day. I am not on ANY medication.

I don't know if what I am describing is a nerve problem or a RLS problem as no doctor can pin point what it is. I have been to a neurologist who has done nerve conduction tests and found no problems.

Thank you in advance for your reply - I am pretty lost here.

44 Replies
oldestnewest
Madlegs1

Firstly- what medications are you on. Doses and for how long?

Have had your ferritin checked, what level?

Keep a food diary for 3 weeks to see what triggers may be at play.

What is a sample diet for you? The last few days for instance.

With that information, we can begin to help.

Cheers.

1 like
Reply
Cathy_1960
Cathy_1960
in reply to Madlegs1

Hi Madlegs1,

I am not taking any medication for anything.

My ferritin levels are very high 116 as I had an iron transfusion over a year ago and they remain very high. However the iron was addressed much before

A sample diet is:

Breakfast; high protein bread, peanut butter and blueberries

Lunch: Chicken Salad

Dinner: varies but beef curry, chicken curry, tofu stir fry etc

I do drink a coffee a day. and have some fruit as snacks.

What I would really like some help with is, does my symptoms appear to be describing RLS?

Thanks

Reply
Elisse2
Elisse2
in reply to Cathy_1960

It doesn't sound like RLS you have to have the urge to move your legs that is the important part to being diagnosed with RLS. I am on my phone so don't know how to copy and paste info. But you could google criteria for RLS and you should find that info so you can see if your symptoms match the criteria. But someone else might come on here and give the criteria for you.

Reply
Cathy_1960
Cathy_1960
in reply to Elisse2

Thanks for your reply. It is so weird. I am not sure what it is.

It also feels like it's on the surface of the leg, like the skin. The best way I can describe it is that feeling of someone walking over your grave that sends tingles through the leg.

Reply
Madlegs1
Madlegs1
in reply to Cathy_1960

Thanks Cathy, I appreciate the conversation has gone past rls identification. Neuropathy seems to be a better explanation.

Just on your diet, curries can have msg in the sauces, so this might be a factor. But it would be a very specific response confined to the next 24 hrs.

You have got a lot of help here, so I sincerely hope you get some way out of your plight.

Neuropathy can be very difficult to tie down.

Hopefully you will find a good expert to help.

All the best.

1 like
Reply
Manerva

H Cathy, sorry to hear you're struggling to get a diagnosis for your symptoms.

There are five criteria for a diagnosis of RLS. 4 of these are the symptoms, the fifth is that all.other explanations of the symptoms are eliminated

In order to have a diagnosis of RLS you must meet ALL 5 criteria

Here is a link to them

irlssg.org/diagnostic-crite...

It doesn't sound as if you do meet all 5, you get symptoms all day, you don't mention the urge to move, you don't say that movement relieves the symptoms.

I can't offer you a diagnosis.

I can say that I recognise your description and I used to experience the same or similar some years ago and you reminded me of it.

I would describe the symptoms I used to get as "chills" in my legs or like there was a "cold breeze" blowing on them, which came in waves.

It was only in my legs and I don't recall it being there all the time, but I experienced it at any time.

It wasn't painful, just uncomfortable and most of the time I ignored it.

It used to experience before I was diagnosed with RLS and don't really recall experiencing it much since.

At the time I was diagnosed with RLS, I was examined by a neurologist and he noted that I didn't have any reflexes in my knees or feet. I still don't have them. The other thing was that my left big toe is superficially numb on top and it goes underneath into my sole. Sometimes I used to feel like the sole of my foot wad touching ice. More recently.this has gone to my right. foot and sometimes, as now, at moment of writing, I feel like I'm wearing thick socks. I'm not though!

The "chills" have disappeared in the last couple of years but not the "wearing socks" feeling. Additionally, now and again I get burning sensations in my left shin and more recently the outer aspect of my left thigh.

In 2017, I. had an MRI of my lower spine and it said there was "some" narrowing of the spaces between my vertebrae and one slightly bulging disk. The level at which is corresponds to the nerves from the parts of the leg I get the burning in.

Last I had an acute episode of severe pain which was clearly nerve pain This was confirmed when the treatment worked.

I also recently also had a bone scan, it said I have degeneration in my feet, knees, hips, spine and shoulders! The spine part is the most significant.

I suspect that the "chills" I used to experience was an early sign of "neuropathy" due to "spinal nerve compression".

I'm sure that the chills was an early "sub clinical- stage of this and tests and scans would probably not have picked it up.

Obviously, I cannot say that this is what you have as there are many causes of neuropathy. It does sound similar.

If it is that, it may be years before it will be significant enough to show up on a scan. It took years for it deteriorate for me and even now it doesn't really prevent me from doing anything.

I hope this helps.

1 like
Reply
Cathy_1960
Cathy_1960
in reply to Manerva

I cannot express how much this has helped me. Thank you so much. It feels exactly like wind is blowing through hair, even though my legs are shaved and it sort of feels like it's my skin.

My toes were numb at the beginning of the year!!!!

I also get twitches in my feet all the time.

How did you manage the symptoms, did you have to take medication or did it improve with time?

I can't believe how many doctors I have gone through and you are the very first person to have some kind of idea about what I am trying to describe.

Reply
Manerva
Manerva
in reply to Cathy_1960

Cathy,

most of the time I had these "chill" sensations, I just ignored them. Warming my legs seemed to help, although that was possibly more psychological than anything.

They didn't really bother me much and didn't seem to be harmful.

I did say the chill sensations disappeared, but hat's not quite right, they got worse, I'm afraid and. turned into burning sensations.

(I also get buzzingvsensations, pins and needles and sudden stabbing pains).

It's complicated, as I have had RLS for decades and it got so severe that in 2009, I saw the neurologist who prescribe a Dopamine Agonist for the RLS. This worked for the RLS but not the neuropathy which continued to get worse.

In 2017, that and lower back pain led to having an MRI. My GP prescribed Amitriptyline, but it didn't really help the neuropathy and can make RLS worse. In August 2018, the neuropathy was terrible. My GP prescribed Naproxen for 2 months, stopped the Amitriptyline and started me on Gabapentin.

It did improve with Naproxen and I still take the Gabapentin. I still get the burning pains and numbness (in various parts). The Gabapentin is enough to make it manageable.

If you do have the same, I'm sorry, there's no reversing this, it is progressive degeneration. It just depends how quickly it gets worse. It doesn't seem for me that it's progressing so fast. Ultimately, and it may never come to this, there is surgery to relieve the pressure on the nerve

I can only say, that you don't necessarily have the same neuropathy as me. It might be difficult to diagnose at an early stage, so only time might tell if you don't get a diagnosis.

Reply
Cathy_1960
Cathy_1960
in reply to Manerva

Thank you Manerva. Would you be able to answer one last question - would you say the stabbing, burning, pins and needles and chills are definitely different sensations to what you experience in RLS? That way I can rule it out and approach a neurologist with a better plan

Reply
Manerva
Manerva
in reply to Cathy_1960

Yes, definitely different. The sensations I get with RLS are quite distinct creepy. crawling sensations.

Reply
Cathy_1960
Cathy_1960
in reply to Manerva

And are they worse at night? Not all day?

Reply
Elisse2
Elisse2
in reply to Cathy_1960

Cathy yes, RLS is worse at night, if not treated, then RLSers can be kept awake all night, pacing, the sensations of RLS can be very strong, the urge to move the legs. Most RLSers pace at night. I had that happen the other night didnt take enough of my meds, i was awake most of the night pacing, i think i got about 2 and half hrs broken sleep.

Reply
Manerva
Manerva
in reply to Cathy_1960

Sorry I did reply to this, but something must have gone wrong.

I have both RLS. AND. neuropathy. RLS usually only occurs at night, my neuropathy symptoms can happen ANY time. They are worse when standing rather than lying down and after bending or lifting

Reply
Jumpey
Jumpey
in reply to Cathy_1960

So sorry you are in this predicament. Thankfully Manerva has given you some helpful info. Just as a long shot maybe get your B12 levels checked.Deficiency can cause nerve damage which leads to numbing and tingly feelings.Good luck.x

Reply
FLAME43

do the symptoms continue even when you walk or sty on your feet. for me when walking or being busy, the sensations and pain abate

Reply
sarah19902
sarah19902
in reply to FLAME43

I have very similar symptoms too and too go undiagnosed. When I stand then I feel vibrations and physical little muscle twitching in my legs. I also have it 24/7 with a sudden onset and no difference between day and night. When most people develop RLS, is it true that it is worse at night?

Reply
sarah19902

I'm actually starting to really fall down into a hole as nobody has offered any medical treatment and I don't know what is wrong.

Reply
Manerva
Manerva
in reply to sarah19902

Sorry Sarah, some neurological conditions are hard to diagnose especially when there are no definite signs e.g. nothing detected on nerve conduction tests, blood tests, EEGs, sleep tests, MRI or CT scans etc

In the ABSENCE of any signs (signs = objectively observable phenomena) i.e. the 5th criteria for the RLS diagnosis, then RLS is diagnosed according to the person's description of their symptoms (symptoms = subjective experience). i.e.the other 4 criteria.

For a diagnosis of RLS then, if all tests are negative and the symptoms do jot fit any one or more of the other 4 criteria then RLS cannot be confirmed.

Which unfortunately leaves you with no diagnosis and no treatment.

Neurological and neuromuscular problems which might have similar symptoms include ME, Fibromyalgia, fasciculations and various neuropathies including functional neuropathy

Some medical conditions are diagnosed according to their response to medication, e.g. if suspected angina pain is relieved by an angina medication, it demonstrates that it is angina.

One possible way of confirming a diagnosis of RLS is to take a RLS medication, e.g. a dopamine agonist. If this medication works immediately, this confirms RLS. Unfortunately, if it doesn't, it doesn't 100% prove it isn't RLS, but would indicate it isn't likely.

Taking a dopamine agonist is not something to be easily considered.

Reply
Elisse2
Elisse2
in reply to sarah19902

Yes sarah worse at night.

Reply
Rikimber

Hi Cathy and Manerva - this conversation is familiar to me as I have had RLS most of my life and diagnosed (all 5 symptoms) for about 12 years. However the symptoms you both describe (toe numbness, tingling, etc.) were related to a spinal condition which constricts the nerves in my lumbar region (4,5 & 6) and I have had 2 spinal ops (2006 and 2015) to relieve the pressure. Unfortunately, a lot of damage was done to the nerves and muscles in my legs and feet before the original diagnosis (by MRI) so I still have the numbness, strange sensations like feeling you have socks on when you haven't (what's that all about??) and balance problems.

So I agree that it is probably not RLS but certainly a neuro problem. My neurologist did all the the tests on my legs and her conclusion was that there was something not right but she couldn't find what it was! I just live with it now and take Gabapentin for the RLS.

As a footnote (pun intended) I was on Pramepexole originally, then the neurologist added the Gabapentin but when I started to augment (symptoms occurring earlier in the day and also to arms, shoulders, neck, etc.) I decided to come off the Pramipexole - I just went cold turkey one long weekend. Took 4 days of hell and experimenting with the Gabapentin dose (now take 2 x 300mg) and I now have hardly any RLS symptoms.

Good luck.

Reply
sarah19902
sarah19902
in reply to Rikimber

Could you tell me if you experience the nerve symptoms all day and only the RLS sporadically? People describe RLS as creepy crawly but then the nerve chills and tingling can at times feel creepy and crawling. I'm so sorry to keep bothering anyone on this forum but as we all know sometimes doctors can do more harm by not listening :(

Reply
Rikimber
Rikimber
in reply to sarah19902

Hi Sarah,

Yes the nerve symptoms are permanent but limited to coldness, numbness and balance problems. The 2x300mg Gabapentin keeps the RLS at bay, apart from the odd occasion, usually after excessive exercise or alcohol.

Reply
sarah19902
sarah19902
in reply to Rikimber

Hey Rikimber, I often get the feeling like my muscle is tensing up in my calf and as a result sort of is trying to kick. This is not voluntary, it's like the muscle clenches and then I get the sensation. Would you think this is RLS?

Reply
Rikimber
Rikimber
in reply to sarah19902

I don't think so, Sarah. That sounds more like cramping. Do you take any supplements, like Magnesium, Zinc/Calcium, Iron?

1 like
Reply
Manerva
Manerva
in reply to Rikimber

Same story here, was on Pramipexole and augmented, started on Gabapentin for nerve pain, stopped Pramipexole. I now take 600mg Gabapentin for RLS. (and nerve pain).

Only difference, I weaned off Pramipexole over about 10 months, no withdrawals at all.

Still wearing socks!

Reply
Smiler53

Hi Cathy, I started off with the feeling of cold water being poured down my legs or perhaps a feeling that my veins were being flushed through with cold water.

I then went on some time later to get the creepy crawlies in my legs when I couldn't sit still, which also made me pace throughout the night. Couldn't go to the cinema or restaurants!

Severe jumping limbs/body during the night (PLMD periodic limb movement disorder) Trouble travelling in the car because of the rls along with severe stabbing pains jolting down the bottom half of my legs. Always had to stop the car so I could get out and walk for a while.

After different medications and augmenting on Ropinerole, I'm currently controlled with Pregabalin and low dose Oxycontin, such a relief!

You will get great support on this site

I hope you can get to the bottom of your problem soon. All the best. X

Reply
Parminter

I would suggest you see a physiotherapist or a chiropractor.

Your symptoms are certainly nerve-related, and the origin could be at the base of your spine somewhere. They might know much better than an allopathic doctor.

Reply
Rivoli

I wish I had the answer for you but you sure do have my sympathy as whatever this “thing” is just takes over our lives. I’m new on here & have found all the information very interesting & well worth researching as I’m at a loss as to what causes my symptoms too.

Good luck.

Reply
Jphickory

Have you had virus in the last 24 months? It may be an unremarkable memory.

My sister had similar sensations that you have described but the sensations were present on her head and face. She said it felt like water droplets running down her face/head or bugs lightly crawling on her.

It was a very disconcerting feeling and she saw several doctors in an effort to determine the cause. She had suffered from a virus several months prior. Ultimately it was determined that remnants of the virus had located to the nerve endings in her head and face. (similar to how the chicken pox virus can hide dormant for years in the nerve ends and later become active as shingles). The doctor told her that the odd sensations would likely slowly resolve as the virus finally completely died off.

I happened to talk to my sister about this recently. Several years after onset she said she would occasionally feel the odd sensation when she was overly tired or had caught a common cold and worn down. It has now been 20 or so years and she no longer ever experiences the odd crawling sensation.

I write this as just another possibility of what may be the cause of your symptoms. All the best to you.

Reply
Cathy_1960

I actually had a horrific virus in January and all of this started at the same time!! Do you think my symptoms sound similar to hers?

I would say my numbness and pins and needles are all but gone and the twitching and weird chills are left.

Reply
Jphickory

Yes, if the symptoms you now experience coincided with your virus in January,

I would suspect the virus is responsible.

Let me know if you want to talk to my sister for additional information. I’ll get you in contact. Regardless, if that is in fact the cause, it will require time for the issue to remedy itself.

Reply
Cathy_1960

If it would be possible to speak with her, that would mean the world to me.

Reply
Jphickory

Ok - let me check with her tmrw and I will get back with you. Not sure if there is a way to send a private message on this site?

Reply
Cathy_1960

I think you can just click on the person and it opens up the option to PM. Thanks again

Reply
Kaarina
KaarinaAdministrator
in reply to Cathy_1960

Click on the Chat icon and compose a private message to another forum member,

Reply
Kaarina
KaarinaAdministrator
in reply to Jphickory

Click on the Chat icon and compose a private message to another forum member,

Reply
kazwigshaw

I have never posted on here before but your symptoms sound very similar to mine! I have a constant uncomfortable feeling in my legs too which is there 24/7. I am seeing a neurologist for the first time on Thursday so I’ll see what my next step is. So far I have had a nerve conduction test and an mri on my head and spine all which came back ok.

Reply
Cathy_1960

Please please let me know what happens. Do you have weird chills and twitches through your legs? Pins and needles?

Reply
kazwigshaw

Not so much chills just a constant uncomfortable feeling. And yes I get twitches. I occasionally have numbness on the bottom of my toes too. My uncomfortableness is hard to describe! It’s like I have to keep my legs tensed to stop the feeling so I feel like I can never fully relax. And one leg is worse than the other. I have been like this for over a year but just kept hoping it would disappear on its own! Some days are worse than others but it’s always there and it’s worse after I exercise.

Reply
Cathy_1960

I honestly cannot thank you guys enough for taking the time to listen and explain your symptoms.

I appreciate the suggestion that if I cannot get a diagnosis it may be worth attempting medication.

However, given that it started suddenly out of the blue and has been 24/7 since, with no discernable difference at night and I don't have too much trouble sleeping except when my anxiety is high from the stress of it.. would this be enough to discount RLS?

Does RLS normally begin in people with nighttime symptoms only and not constant throughout the day?

I also get weird physical twitched while I am standing up.

Reply
Manerva
Manerva
in reply to Cathy_1960

This is NOT a diagnosis but it seems overall, that you do not have RLS, but some kind of neuropathy, post viral, spinal nerve compression or peripheral neuropathy.

One of the better suggestions you've had is to see a physiotherapist or an osteopath, especially one who also does acupuncture. They're very good at identifying if a problem is due to nerves, muscles or circulation.

1 like
Reply
Elisse2

Cathy if RLS starts suddenly its usually down to taken a medication. Night time is when RLS is at its worse if unmedicated, people can have RLS during the day aswell. but RLS will stop you from sleeping or just resting, which why we RLSers get called the Nightwalkers. Manerva posted the criteria for RLS, the urge to move is the important part for having a diagnoses of RLS, a urge you cant resist. If you dont have all the criteria then its not RLS

Reply
RLS1952

I would suggest a good naturopath. Mine is in Bacchus Marsh Victoria Australia.....

Reply
RLS1952

Just read more comments. Osteopath or similar does seem the best suggestion for starters!

Reply

You may also like...