Advice wanted.. leg issue is stopping me from being able to Sleep

[taniaaust1]

I dont really know what to call the following issue but maybe its a type of restless leg syndrome??? but it dont feel quite like the RLS Ive had in the past as it isnt relived any at all by moving my legs around and the annoying/uncomfortable feeling which is not a pain and not like an ache but something else very irritating (neurological feel????) and starts at the top of my lumber spine and also in both legs.

Its thou making me want to kick my legs and shake them (to like try to shake the feeling away) to relieve the feeling hence why its making me think of my previous RLS symptom but moving them doesnt help. Moving used to calm my RLS even if it was only for a very short time (a quick relief) and that feeling never used to have my spine involved. No relief for whatever this is now even while they are moving. My legs arent twitchy/jumpy at all.

Putting my legs up on cushions (above my heart level) has relieved this feeling Im getting in them in the past but this isnt helping tonight at all.

Im so so tired (I did more today then I usually do so possibly the trigger for what Im feeling tonight)and just want to sleep but cant due to what is going on in my legs. I think Im going to go to tears if I cant get to sleep by 4am as Im so needing to do so.

Any advice on what may help relieve the feeling in my legs which is also coming from my lower spine?

 

[Sushi]

Tania,

I am (like Dainty) seeing a cranial osteopath. I know that the osteos who are cranial specialists are less common, but is there any osteopath you could go to? They tend to work on such symptoms "at the source" and seem to be better at fixing them long term than other types of practitioners.

Best,
Sushi

 

[taniaaust1]

Tania,

I am (like Dainty) seeing a cranial osteopath. I know that the osteos who are cranial specialists are less common, but is there any osteopath you could go to? They tend to work on such symptoms "at the source" and seem to be better at fixing them long term than other types of practitioners.

Best,
Sushi

umm that's a thought. I hadnt considered that this may be something structural. It's actually a post exertional symptom of mine. I was only able to get 4.5hrs sleep last night due to it (and only did cause its eased up some). Its there still today so Im going to have to not be on my feet at all today so it goes away or tonight it will be no sleep for me.

 

[lansbergen]

Did you try benzydamine cream at the spot on the spine where it starts?

 

[barbc56]

Tania, I am not a doctor but have you seen a physician about these new symptoms? I have RLS like you and would, suggest you see a doctor before going to the chiropractor. There are so many things this could be from a pinched nerve to something related to the RLS to who knows what?

Do you also have PLMD? What medications are you taking?

Keep us posted. This sounds miserable.

Barb C.:>)

ETA This may not pertain to you but things like Benadryl make my legs worse. But I would see a doctor before these symptoms get worse or put you into more of a relasp from lack of sleep. Take care.

 

[barbc56]

Did you try benzydamine cream at the spot on the spine where it starts?

LOL, we must have posted at the same time. What is benzydamine?

Barb C.:>)

 

[lansbergen]

LOL, we must have posted at the same time. What is benzydamine?

Barb C.:>)

http://www.medicines.org.uk/emc/medicine/11/SPC

Benzydamine exerts an anti-inflammatory and analgesic action by stabilising the cellular membrane and inhibiting prostaglandin synthesis.

 

[taniaaust1]

Its not a new symptom at all.. but one Ive been getting for many years at times (if I trigger my symptoms off).. (that is why I said its usually relieved by having legs up.. sleeping with legs on cushions as it is a symptom Im familiar with and had learnt how to deal with in the past).

I hardly ever get it nowdays (I also dont tend to get the RLS either anymore) cause I usuallys stick to quite strict routine of how much Im doing, to make sure I dont over do things and bring symptoms (including this one on). Im currently due to my OI being slightly better (thank you Florinef), just introduced an 3 extra hours of on feet activity into my weeks total of activity (an hour of activity eg housework into each of the days which are usually my rest days).

Ive lasted one week with no symptoms being increased before this old symptom has happened... it sucks as I was hoping to maintain my new increased activity level (which isnt causing me ME tiredness/exhaustion so in other ways Im quite capable of the acitivity increase) but it looks I wont be able to do so unless i do something about this leg symptom. So yeah.. I do think Im going to have to mention it to the doctor.. I see him again this Monday for a couple of things.. so hopefuly he'll allow me to bring up another thing after those (he's told me to try to stick to one issue per visit, this one will have to be forth on my list so I doubt very much we are going to get to it).

Ive never had a chance to mention this symptom or the previous RLS to any of my specialists due to trying to get the other more important symptoms and my meds sorted. I still have several major/possibly dangerous things out of control which need dealing with. Too many symptoms with the ME.

Do you also have PLMD? What medications are you taking?

What's PLMD? I have so many issues I may have it but not realise the term??

I daily take Florinef (for the POTS ), molybdenum (for deficiency.. I take it with zinc ..ie molyzinc), selenium (re high copper), dietary lithium (deficiency), fibre supplements, Epsom salts-magnesium sulfate (IBS-C/prolapse), B12 injections twice per week (hydrox kind) and right now are also back to taking melatonin for sleep daily.

I have as per needed (eg usually only if i over do things and start triggering off my symptoms more which I usually dont do as I know my limits well).. I then take antihistamine-Doxylamine succinate (sleep), temazapam (sleep), metaclophamide/Pramin (nausea), .. fish oil and glucosamine as needed, vitamin C and for pain killers have Ponstan (mefenamic acid) or asprin, nurophin or panadol. (the Ponstan and other pain killers are the only things in this paragraph Ive had to take in past two weeks due to PMDD). (I trialed Crestor (for high hypercholesterolemia) in past two weeks but had to stop it due to severe side effect).
...................

I was just researching and found out that RLS can be caused by low iron .. Im still wondering if my leg symptom could be some kind of strange form of RLS? My ferritin in the past has been extremely low which was happening back in the time when I had a lot of RLS in the past..almost no iron storage (so it said to be borderline anemic due to that, thou the common iron test was okay as I eat meat 2-3 times a day). Maybe I just need to get my iron stores up to stop this post exertional leg/spine symptom??? I'll see if the specialist will retest my iron as I havent had another ferritin test since that other one a few years ago

 

[Sushi]

Tania, I am not a doctor but have you seen a physician about these new symptoms? I have RLS like you and would, suggest you see a doctor before going to the chiropractor. There are so many things this could be from a pinched nerve to something related to the RLS to who knows what?

Hi Barb,

Not sure if you were referring to my post about an osteopath--but just in case--an osteopath is a physician--they have as much medical training as an M.D. and have the same privileges. But true, a chiropractor is not fully trained as a physician.

The osteo I see did more or less the same physical and history that an M.D. would do.

Sushi

 

[barbc56]

I was just researching and found out that RLS can be caused by low iron .. Im still wondering if my leg symptom could be some kind of strange form of RLS? My ferritin in the past has been extremely low which was happening back in the time when I had a lot of RLS in the past..almost no iron storage (so it said to be borderline anemic due to that, thou the common iron test was okay as I eat meat 2-3 times a day). Maybe I just need to get my iron stores up to stop this post exertional leg/spine symptom??? I'll see if the specialist will retest my iron as I havent had another ferritin test since that other one a few years ago

Low ferritin/iron makes RLS worse but doesn't cause it as RLS/PLMD is a neurological condition.My ferritin was low, couldn't tolerate oral iron and it was most likely low due to absorbtion problems. I ended up having an iron infusion which greatly helped the RLS. Also your ferritin needs to be on the a higher end of normal to get relief for RLS. Once my ferritin was stablized, I didn't have to take medication for it.

PLMD is periodic limb movement disorder and slightly different than RLS but you can have both. Here's a good site. In fact this site is very good for all sorts of sleep issues.

http://www.talkaboutsleep.com/sleep-disorders/archives/rls_pmd_plmdintro1.htm

 

[barbc56]

Hi Barb,

Not sure if you were referring to my post about an osteopath--but just in case--an osteopath is a physician--they have as much medical training as an M.D. and have the same privileges. But true, a chiropractor is not fully trained as a physician.

The osteo I see did more or less the same physical and history that an M.D. would do.

Sushi

No not at all. I had an osteopath many years ago and was pleased with her. My point, which was probably clear as mud, sorry about that, is that before going to all the specialist, see your physician to see if that is the specialist you need.

Barb C.:>)

 

[Wayne]

Any advice on what may help relieve the feeling in my legs which is also coming from my lower spine?

Hi Tania, I discovered this product (A to B Calm Instant Calcium Magnesium Drink Powder) many years ago, and wouldn't be without it. I've used it for all kinds of restless and painful symptoms, and can often get results in a matter of minutes. Many friends have tried it as well, and most are equally surprised by the degree and swiftness of relief. --- Just a thought that it might work for your situation, even though it doesn't sound like RSL per se. Good luck trying to find something that works well for you. -- Wayne



What Is Restless Leg Syndrome (RLS)

According to the Restless Leg Syndrome Foundation, Restless Leg Syndrome (RLS) is an overwhelming urge to move the legs usually caused by uncomfortable or unpleasant sensations in the legs. Sensations related to Restless Leg Syndrome have the following features:

Occur during periods of inactivity ​

Become more sensitive in the evening and at night ​

Are relieved by movement of the limb ​

Often cause difficulty staying or falling asleep, which leads to feelings of daytime tiredness or fatigue ​

May cause involuntary jerking of the limbs during sleep and sometimes during wakefulness​

If you have restless legs syndrome (RLS), you are not alone. Up to 8% of the US population may have this neurological condition. RLS severely affects the lives of millions of individuals.

The Calcium/Magnesium RLS Connection
Calcium and magnesium are directly responsible for activating striated or skeletal muscle, if the human system lacks these minerals, biomechanincal instability and joint pains occur.
Calcium is integral in nerve transmission. If blood calcium concentrations fall, the nerves become hypersensitive, resulting in tetany, which is recognized clinically as severe muscle spasm. Proper calcium levels can prevent Restless Leg Syndrome from happening!

How Do You Get More Calcium Into Your Body?
Calcium must be soluble to be absorbed. That's why A to B Calm has vinegar or citric acid as an ingredient. This can increase its solubility, maximizing its therapeutic action and its effect on Restless Leg Syndrome.

 

[hurtingallthetimet]

I dont really know what to call the following issue but maybe its a type of restless leg syndrome??? but it dont feel quite like the RLS Ive had in the past as it isnt relived any at all by moving my legs around and the annoying/uncomfortable feeling which is not a pain and not like an ache but something else very irritating (neurological feel????) and starts at the top of my lumber spine and also in both legs.

Its thou making me want to kick my legs and shake them (to like try to shake the feeling away) to relieve the feeling hence why its making me think of my previous RLS symptom but moving them doesnt help. Moving used to calm my RLS even if it was only for a very short time (a quick relief) and that feeling never used to have my spine involved. No relief for whatever this is now even while they are moving. My legs arent twitchy/jumpy at all.

Putting my legs up on cushions (above my heart level) has relieved this feeling Im getting in them in the past but this isnt helping tonight at all.

Im so so tired (I did more today then I usually do so possibly the trigger for what Im feeling tonight)and just want to sleep but cant due to what is going on in my legs. I think Im going to go to tears if I cant get to sleep by 4am as Im so needing to do so.

Any advice on what may help relieve the feeling in my legs which is also coming from my lower spine?

hope your feeling better, ive been diagnosed with rls, and sometimes its weird even i feel need to move arms and body...but im weird like that i guess...

alot of times it feels like bubbles in my legs...and they ache really bad and hurt...and move them...i have siatica nerve damage and back problems sends pain, numbness tingling down leg..maybe you have something like that going on?

also helps if i put legs on pillows, muscle rubs...hot bath...pain medications...
hopefully somene will have better advcie..but wanted to share my few
take care and feel better

 

[barbc56]

I also get the RLS in my lower arms and sometimes in the tried the magnesium but it really did a job on my stomach. Sometimes soaking in a bathtub with epsom salts help but only for about a half hour, at the most.

As I said before after not being anemic, the RLS lessened but I sometimes still get it. I have to watch caffeine later in the day.

For a condition that sounds so harmless, it certainly wrecks havoc.

Barb C.:>)

 

[nanonug]

I dont really know what to call the following issue but maybe its a type of restless leg syndrome??? but it dont feel quite like the RLS Ive had in the past

Are you taking SSRI's or maybe antipsychotics by any chance? I am asking because sometimes one ends up with akathisia...

 

[maddietod]

When I take the normal recommended amount of calc-mag supplements, the night kicking stops. But when I then drink a lot of milk during the day, it comes back. So.............is there something about the balance of calc-mag that's generally important, or is this just me?

Also, anybody got experience of a normal pill supplement (I use Trader Joe's) vs a powder like Wayne's?

Madie

 

[taniaaust1]

Hi Tania, I discovered this product (A to B Calm Instant Calcium Magnesium Drink Powder) many years ago, and wouldn't be without it. I've used it for all kinds of restless and painful symptoms, and can often get results in a matter of minutes. Many friends have tried it as well, and most are equally surprised by the degree and swiftness of relief. --- Just a thought that it might work for your situation, even though it doesn't sound like RSL per se. Good luck trying to find something that works well for you. -- Wayne



What Is Restless Leg Syndrome (RLS)

According to the Restless Leg Syndrome Foundation, Restless Leg Syndrome (RLS) is an overwhelming urge to move the legs usually caused by uncomfortable or unpleasant sensations in the legs. Sensations related to Restless Leg Syndrome have the following features:

Occur during periods of inactivity ​

Become more sensitive in the evening and at night ​

Are relieved by movement of the limb ​

Often cause difficulty staying or falling asleep, which leads to feelings of daytime tiredness or fatigue ​

May cause involuntary jerking of the limbs during sleep and sometimes during wakefulness​

If you have restless legs syndrome (RLS), you are not alone. Up to 8% of the US population may have this neurological condition. RLS severely affects the lives of millions of individuals.

The Calcium/Magnesium RLS Connection
Calcium and magnesium are directly responsible for activating striated or skeletal muscle, if the human system lacks these minerals, biomechanincal instability and joint pains occur.
Calcium is integral in nerve transmission. If blood calcium concentrations fall, the nerves become hypersensitive, resulting in tetany, which is recognized clinically as severe muscle spasm. Proper calcium levels can prevent Restless Leg Syndrome from happening!

How Do You Get More Calcium Into Your Body?
Calcium must be soluble to be absorbed. That's why A to B Calm has vinegar or citric acid as an ingredient. This can increase its solubility, maximizing its therapeutic action and its effect on Restless Leg Syndrome.

Thanks for the comment but i dont think it would work for me even if the issue was restless leg syndrome as I used to be on 1200mg of calicum a day (for PMDD) and also take magnesium but still used to get what I do know at that time was actually RLS. So my case of it must of been related to something else. (im excited to discover that link of RLS to iron.. as with my levels as low as they were at that time... that could explain it).

Im currently would be getting a lot of magnesium due to the daily dose of Espom salt Im having to take.

That article does explain the symptoms of the RLS i had in the past.. but the leg symptoms I had other night were different and dont fit that... moving them dont relieve at all.. if anything I know from the past that moving them actually can end up making this issue worst as its a postexertional one (delayed affect to phyiscal actions). So I need to try to move them as little as possible (thou Im wanting to kick etc due to the severe discomfort).

Having them resting high on something and to stay off of them, is the only way Ive found so far to relieve this type of leg issue.

 

[taniaaust1]

Are you taking SSRI's or maybe antipsychotics by any chance? I am asking because sometimes one ends up with akathisia...

No i arent taking any of those.. I get extremely bad reactions with those things and they dont help me in anyway either.

 

[taniaaust1]

When I take the normal recommended amount of calc-mag supplements, the night kicking stops. But when I then drink a lot of milk during the day, it comes back. So.............is there something about the balance of calc-mag that's generally important, or is this just me?

Also, anybody got experience of a normal pill supplement (I use Trader Joe's) vs a powder like Wayne's?

Madie

We were always told at the Naturopathy college I used to go to that the balance of calicum/mag is important.. if one is taking calicum... one should also take magnesium too. (hence when Im supplementing calicum.. I never supplement that alone).

 

[caledonia]

The thing where you have a sensation coming from your lower spine makes me think of either sciatica or spinal stenosis. Both are very painful.

A lot of people have back issues from spending too much time seated and having their body in the shape of a C. Try stretching your body out the other way using the yoga stretch called the Cobra. First just try laying on your stomach (you can do this in bed or on the floor on a yoga mat). Then when you're ready, increase the stretch by going up on your elbows and then finally making your arms straight. If you do this regularly, any lower back problems should go away unless there is a severe problem going on.

ps. I also suggest taking fish oil daily, instead of as needed (unless you're doing it to reduce cost). This has nothing to do with your legs, just as a general health thing - although it should help with pain.