Anyone find they get intense itching ... - Restless Legs Syn...

Restless Legs Syndrome

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Anyone find they get intense itching as a precursor to RLS?

Chancery profile image
36 Replies

Here's a weird thing. I've only very recently noticed that I get intense itching on the skin of my flanks/legs just before I get RLS. My skin itching comes on most commonly in bed, but will occasionally happen just late at night whilst sitting. I had always put it down to me having (very) dry skin, or possibly related to cold urticaria (I get intense skin itching if I've been out in the cold too - always on my legs/hips just the same), but for various reasons I'm wondering if it is something related to what I'm eating.

It's NOT artificial sweeteners, caffeine or chocolate (all old suspects of mine) but it may be fruit, emulsifiers or dairy (or a specific type of processed dairy, like aerosol cream). By chance, I hadn't been eating fruit much and noticed my facial flushing had died down, as had my RLS. Now, eating fruit again it seems to have flared up, as has skin itching.

I'm wondering if this could be a histamine issue, or possibly something to do with salicylates.

I'd be very keen to hear from anyone who gets skin itching along with their RLS, or has any other related issues similar to mine. Ta!

ETA: It just occurred to me I can also get random itching of the back and shoulders instead of the legs and the trademark of whether it will 'bring on' RLS is if it persists. If I scratch the itchy areas and it gradually abates I'm usually okay. If I can't get it to stop itching RLS will usually occur. Any thoughts or ideas welcome!

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Chancery profile image
Chancery
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36 Replies

Hi I do get intense itching. I have put it down to dryness, especially since using moisturiser a few times does settle it down. It gets worse in bed and I often half dream that the itching means something and it's OK to respond to it. Then I wake up having scratched, sometimes until I'm bleeding.

There seems to very a get specific place in which it happens, (which moves around).

I can't say it's a a precursor to the RLS sensations or twitching, but it could be associated with RLS as it might be a sensory nerve thing.

Have to scratch now!

Chancery profile image
Chancery in reply to

Hi Manerva, yes, yours sounds like mine, with the very specific locale and scratching till you bleed. I've done that few times, waking up the next day and finding big red wheals on myself. My ex was always telling me off for scratching too hard. Sometimes moisturiser won't cut it for me. I've seen times I've put it on in the middle of the night to try and appease it but it makes only a superficial difference. It's as if the itching is under the skin. Can you get itchy muscles?!

Sara_2611 profile image
Sara_2611 in reply to

Hi Manerva

yes -I also get a tingly version that feels like my blood racing as if it was in formula 1 & if I dont put my cream on I ll end up kicking out like mad

in reply toSara_2611

Having said what I've said I do find that my itching responds to moisteriser, after a while anyway. It also gets worse when I spend any time in a dusty environmemt. My wood workshop gets very dusty. Also if my socks have shrunk.

However RLS could be another factor, it's hard to tell. I have all sorts of sensations in various parts. RLS crawling sensations, numbness in my big toes and soles of my feet, feeling like cold water running down my lower leg, lines of pain and tenderness down the inner and outer aspects of my thigh and across the front of my ankle, feeling like ice cubes on the soles of my feet, sudden stabbing pains and cramp like pains down the back of my thighs when I flex my hips.

What's an itch in comparison.

The joys of spinal arthritis!

Chancery profile image
Chancery in reply to

Hi Manerva, you don't have diabetes, do you? A lot of that sounds like nerve damage. Or is it just your arthritis? I have quite a bit of nerve pain. I actually have trigeminal neuralgia, a rare neurological condition, but I also get a lots of minor shooting and stabbing nerve pain, particularly from my stomach to my feet and in my hands & feet. I've always assumed it's related to the TN, and that it's probably not a coincidence I'm overweight with a sweet tooth - not diabetic, but doing similar kinds of damage to myself.

in reply toChancery

Thanks. No I'm not diabetic. It is nerve pain however, well diagnosed! MRI showed narrowing of spaces between vertebrae. Worst one is a L4-L5 where the disk is bulging. Pain follows the line of the sensory nerve down my left leg. Had no reflexes in my legs for years.

Sorry to hear about the neuralgia, I know that is really nasty.

Chancery profile image
Chancery in reply to

No reflexes does not sound good! Is the arthritis degenerative, or is it pretty much under control?

in reply toChancery

I'd call it slowly progressing. I don't really need those reflexes anyway. The only time I've had to use them is when a doctor has been hitting me!

Sara_2611 profile image
Sara_2611 in reply to

Crikey Manerva Thats more than a lot of stress. When indoors have you tried walking about barefoot to see if there could be a little relief Sometimes it starts up when Im stood over a hot cooker at a time that to leave it could burn my food That said I have a wooden floor so if I take my socks off the floor is a little cold which relieves it for a short while while I cook & eat

in reply toSara_2611

Thanks Sara that particular problem is not RLS. Exercises, good posture and warm baths all help my nerve pain.

Chancery profile image
Chancery in reply to

Good posture helps? That's interesting. I've developed a lot of debilitating back pain in the last year, after an injury, but I know my posture was poor long before that happened - too much sitting and no working my muscles. I've often wondered if it contributed to my TN (there as a theory among some TN sufferers that it's a cervical spine issue). Do/did you get physio to help with that?

in reply toChancery

Yes, physio gave me some exercises and acupuncture.

I've not heard of TN being a cervical problem. The trigeminal nerve is a cranial nerve.

Posture influences the pressure on the intervertebral spaces. If your posture is not vertical, it can put unequal pressure on the back, front or sides of the disk causing nerve compression and inflammation.

Ta - dah. Nerve pain!

Chancery profile image
Chancery in reply to

Yes, chiropractic manipulation of the neck is quite a thing among US TN sufferers, but rare here. Possibly because they have more of a tradition of chiropractic use than we do. There's always a lot of discussion among TN sufferers, with some swearing blind that it's a cervical spine issue and that chiropractic manipulation worked for them, and others saying it's done nothing for them, or they don't believe in it. The last time I looked, several years ago, only one London firm offered it, so as I am in Scotland I dismissed it as too expensive/impractical, but I was swayed by the fact that some doctors consider it dangerous, with a possibility of paralysing neck injuries! That kind of makes you think twice...

Here's a typical discussion on the subject, with the usual half-insane sufferers showing up among the lucid ones. I'm never sure whether that's because of the heavy drug use needed with bad TN, the pain driving them literally mad, or the extreme poverty of some US sufferers with no/poor access to treatment!

livingwithfacialpain.org/t/...

ETA: Forgot to ask - acupuncture? Was that from an NHS physio???

in reply toChancery

No, private. I also got acupuncture from an osteopath. That was private too.

Chancery profile image
Chancery in reply to

Ah, I did wonder - that wasn't the NHS I know and (have to) love...

Sara_2611 profile image
Sara_2611 in reply to

Hi Manerva Ok - it was only an observation thats good that what you are doing is helping you

Madlegs1 profile image
Madlegs1

Check what sprays have been applied to the fruit- if you sense a connection there. Itching would be a common result of sensitisation to a chemical agent.

I have never experienced itching with rls, but I do get Parasthesia in my thigh- due to pinched nerve in my hip.

Cheers.

Chancery profile image
Chancery in reply toMadlegs1

Hi Madlegs. It could be a chemical agent, but I can be sensitive to fruits anyway. I have IBS and my gut is VERY touchy about garlic and onions (particularly powdered), for example. One of the troubles with trying to identify food intolerances is we don't just eat one food at a time, all day, every day!

Madlegs1 profile image
Madlegs1 in reply toChancery

Powdered ingredients often have bulking agents and drying agents in them. So virtually impossible to determine what is actually setting you off.

My utmost commiserations.😥

Chancery profile image
Chancery in reply toMadlegs1

You're not wrong, Madlegs, which is why it's best to give ready meals a miss! At least if you cook everything yourself you stand a better chance of identifying culprits.

Goldy700 profile image
Goldy700

You may have a histamine intolerance Chancery. Your body may be producing antihistamines as a response and antihistamines are a known problem for RLS. It may be worthwhile just going on a low histamine diet for a while and you may find it also helps your RLS.

rlcure.com/histamine.html

Chancery profile image
Chancery in reply toGoldy700

I've suspected histamine problems for a long time, Goldy, but over the years I've read so many doctors saying 'Oh, it's not a real thing' that I just disregarded it. At one particularly low point last summer, when I was just sick all the time, I actually considered Mast Cell Activation Syndrome - I seemed to react so much to everything. But it's not until you just pointed out to me - and this embarrasses me to admit - that If my body is creating antihistamines that would be enough to trigger my RLS (I am very sensitive to antihistamine tablets - they make my legs go crazy). For some incredible reason it never occurred to me that histamines might make my skin itchy, the body then produces antihistamines and bingo! RLS. It explains why the two go together. thanks very much for making the connection I was too dim to make. Better late than never!

in reply toChancery

That sounds like it might be the answer.

Woody4 profile image
Woody4

Not an itching but I sometimes get a uneasy type feeling in my legs mostly but my arms to a lesser degree.

Chancery profile image
Chancery in reply toWoody4

Yes, Woody, I think everybody with RLS probably gets the warning 'if I don't move my legs I'll explode' sensation, but this is full-blown skin itching, quite separate from that uneasiness.

YES. I have always, for years, had intense itching right before the jerking begins.

Chancery profile image
Chancery in reply to

Ah, a fellow itch/twitch sufferer! Do you think it might be something like histamine sensitivity in your case?

in reply toChancery

I don't have the first clue. Very possibly, but I've always viewed it as a precursor to "the dance". Definitely connected, but how? No idea. The almost stabbing itch is first, then within a couple minutes the sensation we all know so well, the "urge", that creepy thing. Then... BANG! Legs are kicking.

Chancery profile image
Chancery in reply to

Ah, mine is a little different, I get intense irritated skin itching - must scratch stuff. It will appear in very specific locales (shins, flanks of hips, shoulder blades and occasionally shoulders), I'll scratch, and scratch again, and if it finally relents then usually things are okay. If it doesn't, and I keep having to scratch and scratch, I will nearly always get leg twitching. If I'm really unlucky - done something like take antihistamines - I'll get twitching all over my lower body, which will rapidly degenerate into almost whole body I-have-to-move-itis. In my old home my bed was about two foot away from the wall. I used to get so desperate I'd stick my, by now very hot, very scratched, legs out, up against the wall, really hard, and push against it. It seemed to help briefly until I relaxed them again.

Incidentally, I don't always get itching before an RLS attack, sometimes I just slide straight into one, minus itching, but I realised recently how common it was for the two things to go together. Seemed to be more than a coincidence!

There's a few things that cause itching, they are chemical rather than of nerve origin. Some of those chemicals will be the chemicals produced during an inflammatory reaction to an irritant or an allergen, e.g. Histamines or Prostaglandins.

Anti-histamines do not occur naturally in the body however. So the anti-histamine theory may not explain itching preceding twitching.

Chancery profile image
Chancery in reply to

Thanks Manerva, I'm piling ignorance on ignorance here! Because so many drugs are versions of naturally occurring responses in the body I just assumed your body would produce its own antihistamine to control histamines, but you're right it doesn't. I've discovered, upon looking it up, that it uses adrenaline as an antihistamine, which is why you feel exhausted after something like a bee sting - because it has used all the adrenalin trying to control an emergency.

But this is actually still potentially useful. I get adrenalin rushes in bed (not in a good way!). I told my doctor about them years ago, because they were disrupting my sleep so badly, but he wasn't interested (women over fifty; menopausal, they get hot - tough luck). Perhaps there IS a connection still. Perhaps these adrenalin surges I get are related somehow to histamine reactions (IF they're happening). I'll look into this a bit further. Thanks again for the correction - appreciate it!

in reply toChancery

Adrenaline, and more so, Noradrenaline are part of the General Adaptation Syndrome, (GAS). This generalised stress response has 3 stages. Stage 1, "fight or flight" is a quick but short lasting response triggered by the hypothalamus causing excitation of the sympathetic nervous system and excretion of adrenaline & noradrenaline from the adrenal medulla glands

Like you say, we soon run out of it.

Your classic adrenaline rush.

The GAS can be triggered by any stressor, physical, emotional, chemical etc. The stress response could be associated with an immune response, e.g. Inflammation and histamines.

The effect of sympathetic nervous system causes.

- Peripheral vasoconstriction. Blood flow to the skin is cut down. The skin turns pale and cold

- Shut down of blood flow to intestines, kidneys, bladder and !iver.

- Increase blood flow to heart, lungs, brain and skeletal muscles.I

- Deeper breathing hence more oxygen in the blood.

- Release of glucose from body stores. Hence raised blood sugar

- Increased heart rate so more glucose and oxygen get to muscles. Hence more energy available.

- Increased muscle tone. Muscles readied for action.

If this sounds like what you experience, this is an adrenaline energy rush.

It's hard to tell if your adrenaline rush, itching (histamines) and RLS are all related in some way.

sometimes on this site, people talk about their RLS, but reading it, you begin to see that maybe something else, (instead of or as well) is going on.

Chancery profile image
Chancery in reply to

No, not quite a fit for my 'adrenaline rushes', which I should have put in single commas first time around! I nicknamed them that because they cause hyper-alertness. I would go to bed, warm up pleasantly, nod off and then suddenly wake up as if with a classic startle response, but minus the actual shock. I would just be very awake, very suddenly. It would then stay in the system, as it were, exactly like a real adrenaline response, and I could easily lie awake for an hour or more after being in a tired and sleepy state to start with. Again, I assumed adrenaline was involved in them somewhere along the line because of that faux startle response, but maybe that isn't what it is, since my skin definitely didn't get cold. I'd usually get overheated and then be unable to cool down. Sometimes RLS would then come on. Maybe just another dead end here! That's the trouble with simplistic theories - they often prove to be exactly that!

Sara_2611 profile image
Sara_2611

Hi Chancery

When my RLS makes a sudden appearance I use my Balneum Cream which also for skin complaints - but I have to make the point that it might not be for everyone but it does me good & settles it at night

Chancery profile image
Chancery in reply toSara_2611

Thanks for the tip, Sara, I'll look that one up!

Sara_2611 profile image
Sara_2611

Hi Chancery Ok Like I said I must stress that it isn't for everyone so it is only a suggestion not a recommendation . If you do decide to try it then I hope it works for you as well as it does for me

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